I have had Crohn's Disease for nearly 30 years. I have had numerous surgeries, delivered a baby via natural childbirth (after 27 hours of labor and 7 full hours of active pushing), and had some doozy surgical recoveries. I have never in my life had as much pain as I had starting Sunday night. All over some stupid fruit salad. Fruit salad that I have eaten dozens of times year after year. But Sunday night something changed and I had a partial intestinal blockage.
Wednesday, December 4, 2013
Friday, November 1, 2013
Yoga!
Exercise is a challenge for me. I want to exercise and I enjoy the boost of energy I get when I exercise regularly, but it has been a major challenge the last 10 years or so to find a method of exercise that I can do on a regular basis that doesn't result is serious hernia pain or hurt my bottom at my rectum surgery site, or squish my ostomy, or knock my wafer loose. I think I have finally found the perfect low impact exercise for me: YOGA!!
I have always been afraid to try it because the poses that require me to lay on my stomach or bend to much and squish my ostomy. I went to a class years ago where the teacher pointed out everything that I and everyone else in the class did wrong. I was terribly discouraged and never went back. My experience this time has been completely different. I spent a good bit of time talking with the teacher about my limitations and rather than pointing out how I was doing it wrong, or refusing to let me be a part of the class, she instead came up with alternative poses for me to do that worked the same muscles but didn't stress my hernias or ostomy.
I cannot tell you how excited I am to find exercise that I can do that doesn't leave my hernias constantly hurting.
What kind of exercise have you found that works for you?
I have always been afraid to try it because the poses that require me to lay on my stomach or bend to much and squish my ostomy. I went to a class years ago where the teacher pointed out everything that I and everyone else in the class did wrong. I was terribly discouraged and never went back. My experience this time has been completely different. I spent a good bit of time talking with the teacher about my limitations and rather than pointing out how I was doing it wrong, or refusing to let me be a part of the class, she instead came up with alternative poses for me to do that worked the same muscles but didn't stress my hernias or ostomy.
I cannot tell you how excited I am to find exercise that I can do that doesn't leave my hernias constantly hurting.
What kind of exercise have you found that works for you?
Thursday, October 24, 2013
I'll show you mine if you show me yours
I remember back when I had intestines. Back in '01 when I was sick as a dog, rarely going anywhere, and when I did I had to drive--I needed that control of being able to find a suitable bathroom at the drop of a hat. It seems that need for control is still there in some small part. I have been in the ostomy game now for over 12 years and feel like I have a pretty successful ostomy routine down pat. I will show you my routine and preferences if you will show me yours.
I prefer these bags to dispose of my appliance after changing. I use 4x4 gauze propped under my stoma during the bag change. I don't want to take the chance that kleenex or toilet paper might have lotions in them that might transfer to my skin affecting how the bag will stick. I prefer to sit down rather than stand (I am surprised by how many standers there are out there. What happens if it starts to run during the change?). I have a stash of designated bag changing hand towels that I sit in my lap just to be safe. I like the Coloplast line above all others. I use the Coloplast Sensura cut-to-fit with convexity. I really like the velcro closure most of all. Intestined folks don't stick their hands in the toilet to touch their poop so why should I have to? Coloplast's velcro enclosure is the only system I have found that I can empty without coming in contact with poo.
I have tried every paste and seal out there but always seem to go back to the Eakin Seal.
So there it is. My micromanaging overly organized approach to ostomy care. Can you say uptight?
What is your routine?
Sunday, October 6, 2013
Friday, October 4, 2013
I had an epiphany last night...
Last night my husband was giving me grief over how much television I watch--right before he took off for the bathroom, for a length of time I will not divulge here simply because this is not meant to embarrass him. I do watch more than the average bear but more than anything I DVR more than the average bear. Now, there may have been a few instances of binge watching that took place this summer when Matt was traveling for his job and it was too hot to go outside, but my binge watching ended once it cooled down again. I promise. Really. Except for Breaking Bad and Orange is the New Black but I am caught up now so binging isn't necessary.
Anyhow, after getting the grief it got me thinking about something.
I don't get ANY time to myself. I remember back when I had intestines I had more time to myself than I ever wanted stuck in the bathroom. I took every magazine you could think of--People, Us, Entertainment Weekly, Reader's Digest. I was very well-read at the time, if by well-read you mean fluffy junk reading.
Now, my alone time is catching a television show while Wylie naps. Or watching part of show while Matt visits the bathroom. It is my quiet escape. My me time. There are plenty of other things that are more productive that I could be doing during those times but at the end of the day, television is what I like to do to escape. It isn't by any means all that I do to escape or relax.
Friday, September 27, 2013
Lessons learned two years down the road...
When I got pregnant with Wylie back in 2011 it came after a year of wicked flare brought on by a stupid GI doc that decided that I should come off ALL of my meds and go on steroids before trying to get pregnant. Who knew that was the worst possible thing to do? I certainly didn't, and I trusted my doctor. I went in to what I thought was the flare of a decade that resulted in pain, tests, hospitalizations, etc. The fact that we even got pregnant with all of that going on in my body is amazing.
Thursday, October 13, 2011
Something to think about...
27 hours of labor and 7 hours of pushing revealed something to me and my team of doctors and nurses that we had never considered: the scar tissue at the rectal site prevented the birth canal from stretching to the point it needed to in order for the baby to come out. We had all worked so hard to prevent a c-section in fear of dealing with scar tissue that we never considered the obvious.
Every time I would push the baby would come down just a hair and then go right back to where he had been. This went on for SEVEN hours. All of this after he spent the last four months of the pregnancy sitting on my cervix begging to come out. One of my two OBs in the room had spent part of the day searching for literature on post-protelectomy females and vaginal births and found absolutely nothing. That's not to say there aren't women out there that have had their rectum removed and had a vaginal delivery, but there is nothing in medical literature to guide an OB through the process.
You would think that after such a traumatic labor for both me and the baby, as well as after 3 months of strict bed rest, having another baby would be far from my mind. But a mere six hours after the baby came I said to my husband "next time we do this I'm going to have a GI surgeon identify where we can safely cut for a c-section". My husband was speechless.
Every time I would push the baby would come down just a hair and then go right back to where he had been. This went on for SEVEN hours. All of this after he spent the last four months of the pregnancy sitting on my cervix begging to come out. One of my two OBs in the room had spent part of the day searching for literature on post-protelectomy females and vaginal births and found absolutely nothing. That's not to say there aren't women out there that have had their rectum removed and had a vaginal delivery, but there is nothing in medical literature to guide an OB through the process.
You would think that after such a traumatic labor for both me and the baby, as well as after 3 months of strict bed rest, having another baby would be far from my mind. But a mere six hours after the baby came I said to my husband "next time we do this I'm going to have a GI surgeon identify where we can safely cut for a c-section". My husband was speechless.
Thursday, September 29, 2011
Sorry to leave the blog hanging
I realize that I left this blog hanging way back at the end of July but August was a doozy and September trumped August. I was in and out of the hospital throughout August with kidney stones, kidney infections, evenings of contractions, etc. Add to that what was our third move during the pregnancy, and the blog fell to the side. I cannot remember if I ever shared this or not, but the rental house we were living in during the construction of our new home was hit in the 27 April tornadoes that hit North Alabama, forcing us to move again before our final move in mid-August. The cherry on top was that by late August I was so swollen and miserable that I couldn't even reach my laptop to type.
Everything paid off on 8 September when our baby boy arrived six weeks early. He spent 10 days in the NICU in part because of being premature and partly because the birth was quite traumatic for him and me both. I was in labor for 27 hours and actively pushed for seven hours. By the time it was all said and done he and I were beat up pretty badly.
Here we are now with him home safe and sound.
Everything paid off on 8 September when our baby boy arrived six weeks early. He spent 10 days in the NICU in part because of being premature and partly because the birth was quite traumatic for him and me both. I was in labor for 27 hours and actively pushed for seven hours. By the time it was all said and done he and I were beat up pretty badly.
Here we are now with him home safe and sound.
Sunday, July 31, 2011
Stomas during Pregnancy
I have finally gotten to that point. That point in pregnancy when my stoma goes off and changes. As if there aren't enough other changes to deal with already. I am proud that I made it all the way in to my seventh month of pregnancy using my same "cadillac" bag---Coloplast Sensura but the time has come to move on, at least temporarily to a much larger wafer.
I have ordered the new Sensura Pro system from Coloplast and have had mixed results so far. My stoma is rather large and oval shaped under normal circumstances requiring a large wafer to account for the ovalness (is that a word?). As my belly has expanded with the baby, the largeness and ovalness has only increased.
The Sensura XPro wafer that I am using is the largest they make and it is MASSIVE. So large that right edge hits my scar and will not adhere. This is forcing me to tape up my wafer with waterproof tape every time I shower--which I forget to do about half the time, forcing bag changes sooner than necessary. It appears they skip from large to XXL on the wafers without a middle ground. I am convinced this reduces the effectiveness of the convexity of the wafer as well because the convexity is not centralized on the stoma like in the smaller sized wafer, it is instead displaced over a larger area.
I went to change my ostomy last week and realized that my supplier, who shall remain nameless, sent me umpteen boxes of wafers with the new adhesive to attach to the bag rather than the click n' lock that I prefer. Of course all of my bags were the click n' lock type. So far I have to say that I am not loving the Flex adhesive attached bags. The adhesive part of the bag that attaches to the wafer is so large that it reduces the amount of space for output, forcing the user to empty more often. I'm also not comfortable with the large ring that is part of the wafer that the bag attaches to. It is almost larger that the perimeter of the wafer itself. I'm curious how the massive ring will adapt when I lay on my side, especially with my belly getting so big. I'm curious enough that I have done it because I am scared there will be a leak.
I have ordered the new Sensura Pro system from Coloplast and have had mixed results so far. My stoma is rather large and oval shaped under normal circumstances requiring a large wafer to account for the ovalness (is that a word?). As my belly has expanded with the baby, the largeness and ovalness has only increased.
The Sensura XPro wafer that I am using is the largest they make and it is MASSIVE. So large that right edge hits my scar and will not adhere. This is forcing me to tape up my wafer with waterproof tape every time I shower--which I forget to do about half the time, forcing bag changes sooner than necessary. It appears they skip from large to XXL on the wafers without a middle ground. I am convinced this reduces the effectiveness of the convexity of the wafer as well because the convexity is not centralized on the stoma like in the smaller sized wafer, it is instead displaced over a larger area.
I went to change my ostomy last week and realized that my supplier, who shall remain nameless, sent me umpteen boxes of wafers with the new adhesive to attach to the bag rather than the click n' lock that I prefer. Of course all of my bags were the click n' lock type. So far I have to say that I am not loving the Flex adhesive attached bags. The adhesive part of the bag that attaches to the wafer is so large that it reduces the amount of space for output, forcing the user to empty more often. I'm also not comfortable with the large ring that is part of the wafer that the bag attaches to. It is almost larger that the perimeter of the wafer itself. I'm curious how the massive ring will adapt when I lay on my side, especially with my belly getting so big. I'm curious enough that I have done it because I am scared there will be a leak.
Wednesday, July 27, 2011
Life on Bed Rest has gotten crazy
I've been missing in action the past couple of weeks because "Pregnancy with Crohn's Disease" has turned in the "Pregnancy with an Incompetent Cervix" and I could not really find anything relevant to Crohn's to add.
On top of that, we're headed in to what will be our fourth move in nine months, requiring me to shop online for a refrigerator and new bed. After a meltdown over bed shopping online my husband agreed to sleep with the mattresses on the floor until I am either off of bed rest or the baby comes. How on earth am I supposed to buy a bed sight unseen? I'm not sure if I have mentioned this on here before, but we live in North Alabama where the terrible tornadoes of 27 April passed through and the rental house we had just moved in to was hit. That house is now known as the "Tree House" and the house we are in now is the "Summer House". The house we will move in to next month is called "The House".
I have noticed over the past week or so, after entering the third trimester, that the baby seems to be growing at a much faster rate. As he has grown he has made himself at home behind my ostomy (and hernia), making things interesting. I know his head is over there and from the best I can figure he is punching near my hernia/ostomy. It is the weirdest feeling I can think of to have a person in there "jiggling" my intestines. Maybe he is reacting to bowel sounds?
Add to that the changes I have noticed at the top of my abdomen, and I have become hyper-aware of my intestines. As he has grown up in to my abdomen I have started noticing sharp pains after I eat. The best I can figure they are strictures that are being further confined by the growing baby, making them more sensitive. I have been dealing with strictures for years simply because this many years of disease has left my intestines looking like a war zone. But I have haven't had this many incidences back-to-back that I can remember.
On top of that, we're headed in to what will be our fourth move in nine months, requiring me to shop online for a refrigerator and new bed. After a meltdown over bed shopping online my husband agreed to sleep with the mattresses on the floor until I am either off of bed rest or the baby comes. How on earth am I supposed to buy a bed sight unseen? I'm not sure if I have mentioned this on here before, but we live in North Alabama where the terrible tornadoes of 27 April passed through and the rental house we had just moved in to was hit. That house is now known as the "Tree House" and the house we are in now is the "Summer House". The house we will move in to next month is called "The House".
I have noticed over the past week or so, after entering the third trimester, that the baby seems to be growing at a much faster rate. As he has grown he has made himself at home behind my ostomy (and hernia), making things interesting. I know his head is over there and from the best I can figure he is punching near my hernia/ostomy. It is the weirdest feeling I can think of to have a person in there "jiggling" my intestines. Maybe he is reacting to bowel sounds?
Add to that the changes I have noticed at the top of my abdomen, and I have become hyper-aware of my intestines. As he has grown up in to my abdomen I have started noticing sharp pains after I eat. The best I can figure they are strictures that are being further confined by the growing baby, making them more sensitive. I have been dealing with strictures for years simply because this many years of disease has left my intestines looking like a war zone. But I have haven't had this many incidences back-to-back that I can remember.
Monday, July 11, 2011
I knew this tipped uterus would come in handy one day...
Who would have ever thought I could say that I knew this tipped uterus would come in handy one day?
I am one of I'm sure many women that have had a total colectomy that resulted in a tipped uterus. I learned long after the fact that I should have asked the surgeon to tack (I'm not sure this is the correct term, but work with me), my uterus in to place so that it would not shift after things settled in my lower abdomen following surgery.
During my doctors appointment last Tuesday to check the cerclage as well as the status of my cervix, the doctor said he could feel the baby. This is my first pregnancy but I am fairly certain that the doctor should not be able to feel the baby when checking my cervix at this point (6.5 months pregnant). The doctors visit went on as usual and I returned home to my strict bed rest, worried a little about the fact that the baby is SO low that the doc could feel him, but excited that the visit went so well.
On Saturday I was expressing my worry to my husband about the baby being so low and he said "its a good thing your uterus is tipped". My first thought was, wow, Matt is really becoming medically knowledgeable--a big deal considering he had not been to a doctor for about 10 years before he met me. Then I learned that while I was still in shock from the cervical exam, and my ears apparently not receiving data, the doctor told us that the tipped uterus is helping with the cervical issue because the baby is horizontal rather than vertical, lessening the pressure on my cervix. So while he can feel the baby, it isn't nearly as big of a deal as I originally thought.
I could go all in to cervical exams following a total colectomy but I will leave that for another day. Here's hoping all goes well with my doctor appointments tomorrow.
I am one of I'm sure many women that have had a total colectomy that resulted in a tipped uterus. I learned long after the fact that I should have asked the surgeon to tack (I'm not sure this is the correct term, but work with me), my uterus in to place so that it would not shift after things settled in my lower abdomen following surgery.
During my doctors appointment last Tuesday to check the cerclage as well as the status of my cervix, the doctor said he could feel the baby. This is my first pregnancy but I am fairly certain that the doctor should not be able to feel the baby when checking my cervix at this point (6.5 months pregnant). The doctors visit went on as usual and I returned home to my strict bed rest, worried a little about the fact that the baby is SO low that the doc could feel him, but excited that the visit went so well.
On Saturday I was expressing my worry to my husband about the baby being so low and he said "its a good thing your uterus is tipped". My first thought was, wow, Matt is really becoming medically knowledgeable--a big deal considering he had not been to a doctor for about 10 years before he met me. Then I learned that while I was still in shock from the cervical exam, and my ears apparently not receiving data, the doctor told us that the tipped uterus is helping with the cervical issue because the baby is horizontal rather than vertical, lessening the pressure on my cervix. So while he can feel the baby, it isn't nearly as big of a deal as I originally thought.
I could go all in to cervical exams following a total colectomy but I will leave that for another day. Here's hoping all goes well with my doctor appointments tomorrow.
Saturday, July 9, 2011
The Status of my Crohn's Disease
I guess I have been so worried about my incompetent cervix that I haven't taken much time to take stock of my Crohn's Disease at this point in the pregnancy. My Crohn's disease still appears to be in remission but I have started noticing more and more that foods that should bother me (but haven't in years) now bother me: greasy foods, high residue foods, etc. I don't know that this is necessarily a side effect of Crohn's Disease or merely the fact that my system is bombarded with so many hormones.
The most obvious "symptom" (I'm not sure this is the right word so imagine me doing heavy air quotes on symptom) I have noticed in this last week or so is that my hernias are not letting food pass through as easily as before. While I was in the hospital the doctors gave me two big shots of steroids to mature the lungs of the baby just in case I go in to labor. He told us that the baby will now act, breath, and look like a baby that is two weeks longer in gestation than he actually is at this point. I am convinced that the doctor was right on the money. They baby's kicks have become noticeably stronger this week and he has grown quite a bit. I think the baby is taking up so much more room in my tummy that my hernias are pressed for room to do their thing.
Between my hernias working overtime and the baby kicking the daylights out of me, I feel like there is a wrestling match going on in my belly.
The most obvious "symptom" (I'm not sure this is the right word so imagine me doing heavy air quotes on symptom) I have noticed in this last week or so is that my hernias are not letting food pass through as easily as before. While I was in the hospital the doctors gave me two big shots of steroids to mature the lungs of the baby just in case I go in to labor. He told us that the baby will now act, breath, and look like a baby that is two weeks longer in gestation than he actually is at this point. I am convinced that the doctor was right on the money. They baby's kicks have become noticeably stronger this week and he has grown quite a bit. I think the baby is taking up so much more room in my tummy that my hernias are pressed for room to do their thing.
Between my hernias working overtime and the baby kicking the daylights out of me, I feel like there is a wrestling match going on in my belly.
Friday, July 8, 2011
Day 7 and things have gotten desperate
I'm on Day 7 of strict bed rest and things have gotten desperate. I actually just watched Drop Dead Diva off of the "watch it now" from Netflix. And I've never been so prompt with my thank you notes as I am now. Bring by dinner? You have a card on the way by the next day.
On the pregnancy front, the baby is doing well even if he is being a pain in my butt. Literally. He is sitting extraordinarily low. I would almost guess that the pressure I feel is similar, if not exactly like, the pressure a normally configured woman would feel. I tried sitting on a wedge pillow, laying up on my knees like a newborn baby, side sleeping, etc. The only thing I haven't tried is standing on my hands.
It might be time to practice my gymnastics skills.
On the pregnancy front, the baby is doing well even if he is being a pain in my butt. Literally. He is sitting extraordinarily low. I would almost guess that the pressure I feel is similar, if not exactly like, the pressure a normally configured woman would feel. I tried sitting on a wedge pillow, laying up on my knees like a newborn baby, side sleeping, etc. The only thing I haven't tried is standing on my hands.
It might be time to practice my gymnastics skills.
Wednesday, July 6, 2011
Things are looking up
Apparently my cervix is an over-achiever. In only four days it thickened back to 2.6 cm from the 1.6 cm it was the day they put me in the hospital. My big excitement these days is a visit to the doctor, the only time I am allowed out of the house. It is funny what a week or so of laying and doing next to nothing can do to a body. By the time I went to the doctor and got back home I was completely drained.
I have the good fortune of being able to do my job remotely. My boss has been really great with all of this, letting me continue to work, basically having faith in me that I can get things done even while on bed rest. This is my new set-up. It involves a 42-inch TV, a laptop, wireless keyboard, a reclining chair from Cabela, and good tunes from Pandora.com. It has been really nice to have work to do part of the day rather than just watching another TV show.
So here I am, with my over-achieving cervix, my new work set-up, and nothing but time on my hands. Things are looking up.
I have the good fortune of being able to do my job remotely. My boss has been really great with all of this, letting me continue to work, basically having faith in me that I can get things done even while on bed rest. This is my new set-up. It involves a 42-inch TV, a laptop, wireless keyboard, a reclining chair from Cabela, and good tunes from Pandora.com. It has been really nice to have work to do part of the day rather than just watching another TV show. So here I am, with my over-achieving cervix, my new work set-up, and nothing but time on my hands. Things are looking up.
Monday, July 4, 2011
Bed Rest
I'm not sure bed rest is all it is cracked up to be. It probably sounds good in theory--lay around, have everyone wait on you hand and foot, no household chores, no cooking, etc., but in reality it kind of stinks. I've been trying to figure out what God is trying to teach me through this but I haven't come to any conclusions just yet. Of course, I often find that it takes some distance to finally see what it is I am supposed to learn.
For example, back in March our house sold and we moved in to a rental home near where our new house is being built. We had literally unpacked the last of our stuff just a day or two before the terrible tornadoes of 27 April tore through North Alabama, blowing a huge tree down on the rental. The damage was bad enough that we decided to move out of the rental (we weren't able to live in it anyway) and were offered to house sit for a couple my husband works with, all for free. Wouldn't you know the "Summer House", (we've lived in three house so far this year and will move in to our final home in August so we have to keep them straight somehow), is about 3 minutes from my OB and the hospital. Two months out from that terrible day of 27 April and I can see that this is exactly where we are supposed to be.
I have figured out so far that a routine is critical to bed rest. Even if all my routine involves is moving from the recliner to the bed at a certain time. Or looking forward to 3:00 for my one shower of the day. I'm trying hard to not nap during the day because I don't want to become a total bum that sleeps all day and sits up all night watching television. Overnight television is way too bad for that.
For example, back in March our house sold and we moved in to a rental home near where our new house is being built. We had literally unpacked the last of our stuff just a day or two before the terrible tornadoes of 27 April tore through North Alabama, blowing a huge tree down on the rental. The damage was bad enough that we decided to move out of the rental (we weren't able to live in it anyway) and were offered to house sit for a couple my husband works with, all for free. Wouldn't you know the "Summer House", (we've lived in three house so far this year and will move in to our final home in August so we have to keep them straight somehow), is about 3 minutes from my OB and the hospital. Two months out from that terrible day of 27 April and I can see that this is exactly where we are supposed to be.
I have figured out so far that a routine is critical to bed rest. Even if all my routine involves is moving from the recliner to the bed at a certain time. Or looking forward to 3:00 for my one shower of the day. I'm trying hard to not nap during the day because I don't want to become a total bum that sleeps all day and sits up all night watching television. Overnight television is way too bad for that.
Thursday, June 30, 2011
In the Big House
Tonight's episode of Pregnancy and Crohn's Disease is being filmed live in front of a studio audience at Huntsville Hospital. Yep, I am in the Big House.
The doctor tightened down on my bed rest on Monday and because of the long weekend I decided I would feel better if I had one more check. Thank God that I did. When I went in today my cervix was now dangerously low. Admit now, do not pass Go. Leave it to me to not have shaved my legs or showered before my early morning appointment.
They have me on an IV drip to calm my uterus and have given me steroid shots to mature the baby's lungs just in case. Tomorrow they will be doing a cerclage to sew my cervix shut. Following that will be strict bed rest for at least the next few weeks.
I have been feeling guilty for what all I am putting my husband and family through. I can't help but think that all of my surgeries and years of chronic illness is contributing to this in some way. If only I didn't have this jacked up body, maybe I would be out picking out things for the nursery and cooking another awesome meal for my husband and I. Instead, he has the weight of the world on his shoulders--stress at work, laundry, meals, getting me a drink, getting me a snack, etc. He is doing a fantastic job taking care of me but I can't help but thinking that now I know what my grandfather must have meant when he always said "I don't want to be a burden."
Here's praying that tomorrow goes well and our baby boy can hold out a little while longer.
The doctor tightened down on my bed rest on Monday and because of the long weekend I decided I would feel better if I had one more check. Thank God that I did. When I went in today my cervix was now dangerously low. Admit now, do not pass Go. Leave it to me to not have shaved my legs or showered before my early morning appointment.
They have me on an IV drip to calm my uterus and have given me steroid shots to mature the baby's lungs just in case. Tomorrow they will be doing a cerclage to sew my cervix shut. Following that will be strict bed rest for at least the next few weeks.
I have been feeling guilty for what all I am putting my husband and family through. I can't help but think that all of my surgeries and years of chronic illness is contributing to this in some way. If only I didn't have this jacked up body, maybe I would be out picking out things for the nursery and cooking another awesome meal for my husband and I. Instead, he has the weight of the world on his shoulders--stress at work, laundry, meals, getting me a drink, getting me a snack, etc. He is doing a fantastic job taking care of me but I can't help but thinking that now I know what my grandfather must have meant when he always said "I don't want to be a burden."
Here's praying that tomorrow goes well and our baby boy can hold out a little while longer.
Tuesday, June 28, 2011
Pity Party
There is a pity party going on at my house, attendance 1. I was officially put on bed rest yesterday--at only 24 weeks. I am hoping that I will do so great the doctor will ease up some but I need to be prepared for this to be a long term deal. The doctor says this can happen to anyone but I can't help but think that all of my surgeries are contributing to this in some way.
My cervix is thinning out, thickening, thinning back out, thickening again, and so on. It just so happened that when I was at the doctor yesterday my cervix was at its thinnest--2.2 cm. My pity party started before I could even get to my car. While I was still with the doctor I was trying to take everything in to the point that I couldn't even really conceive what I was facing. His instructions were that I could get up to fix myself something to eat or drink, go to the bathroom and shower, and change the DVD in the player. He also said I could work from home as long as I could do it from a reclining position. He has also put me on progesterone.
By the time I got to my car the party started. Why can't just one medical thing ever go right for me? How many different ways as I letting down my husband and family by putting this burden on them? How is my husband going to work and take care of everything around the house for the next few months? This list is quite exhaustive so I will just stop here.
So here I lay, in my Cabela camping chair that is like laying on a cloud, with my legs under my tall desk, taking a break from working on Day 2 of bed rest. I am willing my cervix to grow.
My cervix is thinning out, thickening, thinning back out, thickening again, and so on. It just so happened that when I was at the doctor yesterday my cervix was at its thinnest--2.2 cm. My pity party started before I could even get to my car. While I was still with the doctor I was trying to take everything in to the point that I couldn't even really conceive what I was facing. His instructions were that I could get up to fix myself something to eat or drink, go to the bathroom and shower, and change the DVD in the player. He also said I could work from home as long as I could do it from a reclining position. He has also put me on progesterone.
By the time I got to my car the party started. Why can't just one medical thing ever go right for me? How many different ways as I letting down my husband and family by putting this burden on them? How is my husband going to work and take care of everything around the house for the next few months? This list is quite exhaustive so I will just stop here.
So here I lay, in my Cabela camping chair that is like laying on a cloud, with my legs under my tall desk, taking a break from working on Day 2 of bed rest. I am willing my cervix to grow.
Saturday, June 25, 2011
Is that the baby or just the grapefruit I ate?
Life with an ileostomy is an adventure--you never know what fun you're going to have each day. Today's fun was brought to us by the letter "G", as in Grapefruit.
Who knew something as innocent and tasty as grapefruit could perplex me so? I spent a good part of the day getting on to the baby (because he can here me, I know it, but he just ignores me) for kicking around in my lower abdomen. Every "kick" was hurting. Really hurting. Hurting so much that I quit working and was laid out flat in the recliner--You've Got Mail was on television so I was okay with it. Imagine my surprise tonight when it comes to light what the true culprit of all my pain was: grapefruit!
When I first got my ostomy I kept track of everything I ate, making sure to also take note of when it passed. There's nothing like the first time you eat something with red dye in it and you are convinced you are bleeding internally. Or when those green peas come out looking exactly as they had when they went in.
Ten years later it rarely crosses my mind of what I ate and when I saw it again. I will admit, corn on the cob still puts the fear of God me. And I did make my husband take me to the ER last year after I accidentally ate an entire bag of microwave popcorn--it ended up being a kidney infection that landed me in the hospital for three days, but my first response was intestinal blockage.
My doctors have told me that my biggest risk over the remainder of my pregnancy is blockage or rupture of either hernia. As the baby grows, he is competing for space with a rather large perastomal hernia and a so-so incisional hernia. I think maybe I am getting to the point now where I need to start paying better attention to what is going in and what is coming out. I guess I also need to apologize to the baby for blaming him for causing my trouble today.
Who knew something as innocent and tasty as grapefruit could perplex me so? I spent a good part of the day getting on to the baby (because he can here me, I know it, but he just ignores me) for kicking around in my lower abdomen. Every "kick" was hurting. Really hurting. Hurting so much that I quit working and was laid out flat in the recliner--You've Got Mail was on television so I was okay with it. Imagine my surprise tonight when it comes to light what the true culprit of all my pain was: grapefruit!
When I first got my ostomy I kept track of everything I ate, making sure to also take note of when it passed. There's nothing like the first time you eat something with red dye in it and you are convinced you are bleeding internally. Or when those green peas come out looking exactly as they had when they went in.
Ten years later it rarely crosses my mind of what I ate and when I saw it again. I will admit, corn on the cob still puts the fear of God me. And I did make my husband take me to the ER last year after I accidentally ate an entire bag of microwave popcorn--it ended up being a kidney infection that landed me in the hospital for three days, but my first response was intestinal blockage.
My doctors have told me that my biggest risk over the remainder of my pregnancy is blockage or rupture of either hernia. As the baby grows, he is competing for space with a rather large perastomal hernia and a so-so incisional hernia. I think maybe I am getting to the point now where I need to start paying better attention to what is going in and what is coming out. I guess I also need to apologize to the baby for blaming him for causing my trouble today.
Thursday, June 23, 2011
Reality Check
I have spent my adult life determined to not let Crohn's Disease define who I am. I take great pride when people, upon finding out my configuration, say, "I would have never known you had anything going on..."
But I have finally met my match and its name is Pregnancy.
I used to be famous/infamous for pushing myself to do things I had no business doing, just because no one was ever going to tell me "you can't do that". There was the time I went whitewater rafting six weeks after surgery while I still had an open wound. Or during graduate school when I would leave class to run to the hospital for IV treatment before heading back for an evening class. Or skiing down the slopes at Vail with a terrible infection and open wound on my abdomen. It was all pretty stupid, but it helped me build up my "nothing is going to stop me" attitude.
The difference this time is that there is a life on the line and it isn't mine. Pushing myself at this point in my life has suddenly taken the back burner. These past two weeks have really been an eye opener for me. The doctors were actually concerned about pre-term labor (I'm only 23 weeks). The symptoms I was having were "just" aggravated scar tissue and adhesions, but it definitely scared me enough to slow my roll. This time I am okay being told "you can't do that".
Monday, June 20, 2011
An Apple Pie Injury
I have sustained an apple pie injury. This injury has next to nothing to do with being pregnant and having Crohn's disease, but it is funny/sad nonetheless. Funny, because I am a third generation klutz, and sad because only a person with a poked out belly from pregnancy that is poked out even further with a hernia, could sustain an injury like this.
On a whim I decided to make a set of apple pies for my father for Father's Day--it is in the top 25 of his favorite desserts, probably close if not in first place. The incident in question happened while using the apple slicer. The apple slid, the slicer slid off of the apple, and with the force required to slice the apple, I came down on my hernia, pinching it between the counter top and the slicer.
Thirty-six hours later and I am still walking hunched over and in pain. I remember asking my surgeon a couple of years ago if I was at any increased risk of injury with my intestine being "right there" under my skin, without the protection of my abdominal wall. He said no. I think he might have been wrong.
On a whim I decided to make a set of apple pies for my father for Father's Day--it is in the top 25 of his favorite desserts, probably close if not in first place. The incident in question happened while using the apple slicer. The apple slid, the slicer slid off of the apple, and with the force required to slice the apple, I came down on my hernia, pinching it between the counter top and the slicer.
Thirty-six hours later and I am still walking hunched over and in pain. I remember asking my surgeon a couple of years ago if I was at any increased risk of injury with my intestine being "right there" under my skin, without the protection of my abdominal wall. He said no. I think he might have been wrong.
Friday, June 17, 2011
You don't know what you are getting yourself in to...
I had my first "can I touch your belly?" recently. I know that it is every little old lady's desire to rub a pregnant woman's belly, but before letting her go in for her rub I simply said "You don't know what you are getting yourself in to..." Before I could finish, her hand had already touched down. I didn't have the heart to tell her that her rub of the baby was actually my incisional hernia. Too bad that my bowel wasn't working at the time so she could have thought she felt the baby kick.
I don't have that glamorous baby bump that has both young and old clamoring to touch and see what the feel. I have more of the "what exactly is going on here" baby bump. I look like a more traditional pregnant woman from the left side because my parastomal hernia rounds out my bump. But from the right, even I have to admit I looks ridiculous. I guess I should be prepared to have my Demi Moore naked on the cover of a magazine shot made from the left. I hope no one minds the Coloplast ostomy bag hanging. Maybe they can photoshop that out.
I don't have that glamorous baby bump that has both young and old clamoring to touch and see what the feel. I have more of the "what exactly is going on here" baby bump. I look like a more traditional pregnant woman from the left side because my parastomal hernia rounds out my bump. But from the right, even I have to admit I looks ridiculous. I guess I should be prepared to have my Demi Moore naked on the cover of a magazine shot made from the left. I hope no one minds the Coloplast ostomy bag hanging. Maybe they can photoshop that out.
Thursday, June 16, 2011
I wish
I wish there was somewhere I could go online, or in town for that matter, to compare notes with a woman that is pregnant, has Crohn's disease, has hernias, and has an ostomy. I wish.
I was talking with my sister-in-law a couple of nights ago, comparing pregnancy tales--she is 37 weeks and I am 22 weeks. It dawned on me that while helpful, there is really no way for her to give applicable advice because my configuration is so different. That said, I think I am going to change to direction of my blog, at least for the duration of my pregnancy. Why? Because there is no where out there for me to get information about what I am going through. Maybe this way, I can be that person for another pregnant woman that comes along needing to know what to expect.
Today's "something I didn't expect" is bowel sounds. :)
I'm not sure if what intestine I have left is squished by the baby, or if my expanding belly is pressing on my parastomal hernia, but the bowel sounds coming from around my ostomy are quite entertaining. I have heard from "regular" pregnant women that gas is an issue during pregnancy, but they don't have a broadcast system on their stomach. I have tried any number of things to lessen to bowel sounds but nothing seems to do the trick. Early mornings, church and long meetings around a conference table are the times that my faithful friend Junior likes to play his tunes. I realize that this falls in the category of "you'll just have to live with it" so it makes me laugh more than anything else. Mostly because the folks I work with have no idea about my configuration. It is quite entertaining to watch them try to figure out what on earth they are hearing, and why it is coming from "there".
On that note, I am off to the OB to hopefully hear good news. Bad news would be that I have to go on bed rest. Let's hope I hear good news today.
Monday, June 13, 2011
Hernias, Scar Tissue, and Adhesions, oh my!
Hernias, scar tissue, and adhesions are my enemies these days. I have been having a great deal of pain where my rectum used to be since the baby has started getting a little bigger. I had a total proctectomy in 2006 after my GI doc found pre-cancerous cells during a colonoscopy. He said at the time that this is often the case for patients that have had Crohn's/UC for a long time. By 2006, I had already been living with an ileostomy for nearly six years, and my rectum had been causing me so many problems that I was ready to have the surgery.
Other than trying to avoid hard seats, I haven't thought twice about my rectum in years. That was until the last two weeks or so of pregnancy when I started feeling pressure and pain "down there". It feels very much like it used to feel when I was flared up in my rectal stump before surgery. The fact that I am zipped shut didn't seem to make a difference. I feel like if I tried hard enough I could actually pass something from my rectum at this point.
My OB says that two anchors for the uterus during pregnancy pass right over the rectum. Apparently, those anchors are putting pressure on the scar tissue and adhesions that are where my rectum used to be. I don't think it was a real issue until the baby started growing more, putting more weight on that area.
So, what do hernias have to do with my scar tissue/adhesions problems? The baby is limited in where he can grow and where the uterus can expand because of the two hernias I have--one perastomal and one incisional hernia.
Hernias, Scar Tissue, and Adhesions: 1 Crohn's Disease: 1 Alison: 0
Other than trying to avoid hard seats, I haven't thought twice about my rectum in years. That was until the last two weeks or so of pregnancy when I started feeling pressure and pain "down there". It feels very much like it used to feel when I was flared up in my rectal stump before surgery. The fact that I am zipped shut didn't seem to make a difference. I feel like if I tried hard enough I could actually pass something from my rectum at this point.
My OB says that two anchors for the uterus during pregnancy pass right over the rectum. Apparently, those anchors are putting pressure on the scar tissue and adhesions that are where my rectum used to be. I don't think it was a real issue until the baby started growing more, putting more weight on that area.
So, what do hernias have to do with my scar tissue/adhesions problems? The baby is limited in where he can grow and where the uterus can expand because of the two hernias I have--one perastomal and one incisional hernia.
Hernias, Scar Tissue, and Adhesions: 1 Crohn's Disease: 1 Alison: 0
Friday, June 10, 2011
Ugh.
I have been living the high life the last five months with both the pregnancy and Crohn's. As the baby has gotten bigger and more active the fact that I am not a normal pregnancy has become more and more evident. My hernia under my ostomy is keeping the baby low and on the right. That hernia is also getting pressure on it from me getting bigger. I've noticed a great deal more noise coming from that area, which can be a little embarrassing when sitting in a meeting (like all day yesterday). The hernia on the upper right side of my abdominal incision is really starting to poke out but other than being unsightly, it is not hurting.
But the thing that is really getting to me is the area where my rectum used to be. I feel like I did six years ago--"back when I had a butthole" and had active Crohn's in the area. I actually think it might be worse. The area throbs and there is a lot of pressure. My high risk OB and my GI agree that this is something I will just have to deal with for the next few months. Apparently some of the "anchors" for the uterus run right along the rectal area of the normal woman. These anchors are hitting scar tissue, sensitive nerves, and adhesions on me. They have given me some low grade pain medicine but I am trying to avoid taking it as much as possible.
I think my usual "I'm going to live life and not let Crohn's get in the way" attitude is going to have to be put on the back burner for a while.
Crohn's Disease: 1 Alison: 0
But the thing that is really getting to me is the area where my rectum used to be. I feel like I did six years ago--"back when I had a butthole" and had active Crohn's in the area. I actually think it might be worse. The area throbs and there is a lot of pressure. My high risk OB and my GI agree that this is something I will just have to deal with for the next few months. Apparently some of the "anchors" for the uterus run right along the rectal area of the normal woman. These anchors are hitting scar tissue, sensitive nerves, and adhesions on me. They have given me some low grade pain medicine but I am trying to avoid taking it as much as possible.
I think my usual "I'm going to live life and not let Crohn's get in the way" attitude is going to have to be put on the back burner for a while.
Crohn's Disease: 1 Alison: 0
Tuesday, June 7, 2011
Do you ever?
Do you ever blame Crohn's for far more than it deserves? My husband and I have a running joke in our house that "the Gremlin did it". Who ate all of the ice cream? I bet the Gremlin did it. If someone splashes water all over the bathroom floor, I can bet that darn Gremlin had something to do with it.
I find the same thing to often be the case with my Crohn's disease. Feeling queasy? Crohn's disease. Fever and chills? Crohn's disease. I will admit that many times over the years Crohn's was the culprit. But there have also been many times that I blamed a flare on whatever symptoms I might be having at the time only to find out that no active Crohn's could be found. I remember a time or two of actually being disappointed. Like maybe I was crazy. Why would I have this combination of symptoms if it wasn't Crohn's acting up?
I think it is a slippery slope having Crohn's in my back pocket to blame. If I blame every pain, twitch, or gurgle on Crohn's disease, I can also fall back on it as an excuse for any number of things. Made a bad grade on my exam? I think my Crohn's was starting to flare and had me distracted. Can I go on a ski trip? I better not, my Crohn's might flare or I might need to go to the bathroom while out on the mountain. Road trip? I can't, what if I need to go to the bathroom and cannot find a decent gas station?
I used all of the above mentioned excuses and many more over the years. I happened to be sick enough that no one ever questioned my handy Crohn's excuse. But I got tired of letting it define me. I cannot deny that I have Crohn's but it is way down on the list of things I think of when I describe myself now.
I find the same thing to often be the case with my Crohn's disease. Feeling queasy? Crohn's disease. Fever and chills? Crohn's disease. I will admit that many times over the years Crohn's was the culprit. But there have also been many times that I blamed a flare on whatever symptoms I might be having at the time only to find out that no active Crohn's could be found. I remember a time or two of actually being disappointed. Like maybe I was crazy. Why would I have this combination of symptoms if it wasn't Crohn's acting up?
I think it is a slippery slope having Crohn's in my back pocket to blame. If I blame every pain, twitch, or gurgle on Crohn's disease, I can also fall back on it as an excuse for any number of things. Made a bad grade on my exam? I think my Crohn's was starting to flare and had me distracted. Can I go on a ski trip? I better not, my Crohn's might flare or I might need to go to the bathroom while out on the mountain. Road trip? I can't, what if I need to go to the bathroom and cannot find a decent gas station?
I used all of the above mentioned excuses and many more over the years. I happened to be sick enough that no one ever questioned my handy Crohn's excuse. But I got tired of letting it define me. I cannot deny that I have Crohn's but it is way down on the list of things I think of when I describe myself now.
Monday, June 6, 2011
Finding the perfect GI doctor
Finding the perfect GI doctor has always been a challenge for me. It seems that a good number of GI docs want the simple, let's scope the 50-something patient every two years and collect payment, kind of patient. I realize that I may be lumping a lot of doctors into a pile here, but in my 26 years of Crohn's disease, trying to find a doctor that will stick with me through the ups and downs, has been hard to accomplish. I had one GI doc, that came highly recommended I might add, that said "I don't do hospitals. If you are going to need to be admitted, I am not the doctor for you." What kind of doctor doesn't "do" hospitals?
I have discovered that the best thing to do is interview your prospective GI doc. I have also concluded that university/research hospitals are the best bet. My all-time favorite GI doc was at the University of Chicago. I am in north Alabama. So that wasn't very realistic. My new GI doc is at Vanderbilt in Nashville, TN and in my first meeting with her I asked as many questions of her as she asked of me. It also helped that when I name dropped my U of Chicago doc that I love, she knew exactly who I was talking about.
My favorite thing about my new favorite GI: every other GI I've ever had is always chomping at the bit to put me on steroids. My GI doc at Vandy has told me to expect a flare immediately following the birth of our baby. I asked her if they would be putting me on a mega dose of steroid following the birth and she looked at me like I was crazy. That was so refreshing. Her response: "Why put you on steroids until a flare reveals itself?" YAY no steroids!!
I have discovered that the best thing to do is interview your prospective GI doc. I have also concluded that university/research hospitals are the best bet. My all-time favorite GI doc was at the University of Chicago. I am in north Alabama. So that wasn't very realistic. My new GI doc is at Vanderbilt in Nashville, TN and in my first meeting with her I asked as many questions of her as she asked of me. It also helped that when I name dropped my U of Chicago doc that I love, she knew exactly who I was talking about.
My favorite thing about my new favorite GI: every other GI I've ever had is always chomping at the bit to put me on steroids. My GI doc at Vandy has told me to expect a flare immediately following the birth of our baby. I asked her if they would be putting me on a mega dose of steroid following the birth and she looked at me like I was crazy. That was so refreshing. Her response: "Why put you on steroids until a flare reveals itself?" YAY no steroids!!
Wednesday, June 1, 2011
Pregnancy
I'm noticing that my blog seems to be more about pregnancy than Crohn's so far, but since I have Crohn's disease, and I'm pregnant, I feel it is pertinent.
Getting pregnant was something my doctors had always told me would be near impossible. In hindsight I actually think Crohn's saved me/us a great deal of heartache. Rather than trying for years to get pregnant, only to be disappointed month after month, year after year, we went in knowing that we would need help. Showing up in the fertility doctor's office every week and seeing the desperation and anxiety on so many faces revealed to me how fortunate we were to know from the get-go that we would need medical intervention to get pregnant. It ends up I wasn't wrong at all. Multiple abdominal surgeries had created so much scar tissue that it was most definitely impossible for us to get pregnant naturally. After years and years of medical disappointments related to my Crohn's disease, handling the fertility problems were relatively easy.
So here we are five months in and we found out yesterday we are having a boy. It was funny to see how perplexed the ultrasound tech was by my ostomy and two hernias. I found out that the baby is lying completely on my right side. I don't know for sure but I am guessing that my perastomal hernia is preventing the baby from shifting to the middle of my abdomen. This should make for some interesting pregnancy pictures here in a couple of months.
Getting pregnant was something my doctors had always told me would be near impossible. In hindsight I actually think Crohn's saved me/us a great deal of heartache. Rather than trying for years to get pregnant, only to be disappointed month after month, year after year, we went in knowing that we would need help. Showing up in the fertility doctor's office every week and seeing the desperation and anxiety on so many faces revealed to me how fortunate we were to know from the get-go that we would need medical intervention to get pregnant. It ends up I wasn't wrong at all. Multiple abdominal surgeries had created so much scar tissue that it was most definitely impossible for us to get pregnant naturally. After years and years of medical disappointments related to my Crohn's disease, handling the fertility problems were relatively easy.
So here we are five months in and we found out yesterday we are having a boy. It was funny to see how perplexed the ultrasound tech was by my ostomy and two hernias. I found out that the baby is lying completely on my right side. I don't know for sure but I am guessing that my perastomal hernia is preventing the baby from shifting to the middle of my abdomen. This should make for some interesting pregnancy pictures here in a couple of months.
Tuesday, May 31, 2011
Biologics
I remember way back in the 80's when sulpha drugs were all that I needed to control my disease. All I really had to worry about then was making sure I ate before I took my meds. Twenty some odd years later and I started on the biologics. The doctors talked about them like they were the best thing every. Remicade was the first for me. I would show up at the hospital--they only did it in outpatient services back then, get my IV started, and get to work on my graduate studies that I always brought with me. No need in wasting that four or so hours. I was so excited when I started seeing results very quickly. But disappointment soon came when time and again the effects of the remicade would wear off within a couple of weeks. I was in the hospital at UA Birmingham when the superstar surgeon decided to push me on two rounds of remicade back-to-back. Dumb idea for a patient with asthma. One severe asthma attack later and remicade was marked off the list of biologics for me.
Next came Humira. Two years and countless bacterial infections later, and that was marked off the list of biologics for me.
But of course there is always another one in the pipeline. Cimzia is supposedly the be all and end all of Crohn's medications out there. What did it do to me? My lips swelled beyond recognition exactly one week after my injections. Swelled to the point they cracked in several places. I also kept bacterial infections the whole three months I was on the drug.
I guess what I have concluded from my adventure with biologics is that they aren't for me. I've heard so many people with happy results but for some reason my body does not play well with the biologics. I guess I will stick with good ol' Imuran.
Next came Humira. Two years and countless bacterial infections later, and that was marked off the list of biologics for me.
But of course there is always another one in the pipeline. Cimzia is supposedly the be all and end all of Crohn's medications out there. What did it do to me? My lips swelled beyond recognition exactly one week after my injections. Swelled to the point they cracked in several places. I also kept bacterial infections the whole three months I was on the drug.
I guess what I have concluded from my adventure with biologics is that they aren't for me. I've heard so many people with happy results but for some reason my body does not play well with the biologics. I guess I will stick with good ol' Imuran.
Monday, May 30, 2011
Sample Review
I guess that for a blog about Crohn's disease that I am not doing too well considering two of my first three posts are about ostomy supplies rather than Crohn's. But while it is fresh in my mind I figured I would give my official review of the new Coloplast Sensura Xpro.
This review should be prefaced by the fact that I am five months pregnant and the size and shape of my abdomen may play a part in why I did not like the Xpro. My ET nurse recommended that I go to a larger sized cut-to-fit wafer to accommodate my expanding stoma. Because of the size of my stoma I have long required a wafer with convexity. The problem with going to the larger sized wafer is that the convexity of the wafer is not effective. I'm not sure if anyone else has noticed that the cut-to-fit area gives a little more that the rest of the wafer. The give in the cut-to-fit area rendered the convexity useless, with my wafer lasting only about four hours.
On a Crohn's note, I have my second trimester appointment with my new GI doctor at Vanderbilt this week. As a new patient, she was chomping at the bit to run every test under the sun on me back this winter but that all came to a halt when we found out I was pregnant. I have to admit it has left me a bit anxious myself, not knowing the true state of my disease as I head in to the second half of my pregnancy. Every time I have a pain I am convinced that my Crohn's is flaring.
This review should be prefaced by the fact that I am five months pregnant and the size and shape of my abdomen may play a part in why I did not like the Xpro. My ET nurse recommended that I go to a larger sized cut-to-fit wafer to accommodate my expanding stoma. Because of the size of my stoma I have long required a wafer with convexity. The problem with going to the larger sized wafer is that the convexity of the wafer is not effective. I'm not sure if anyone else has noticed that the cut-to-fit area gives a little more that the rest of the wafer. The give in the cut-to-fit area rendered the convexity useless, with my wafer lasting only about four hours.
On a Crohn's note, I have my second trimester appointment with my new GI doctor at Vanderbilt this week. As a new patient, she was chomping at the bit to run every test under the sun on me back this winter but that all came to a halt when we found out I was pregnant. I have to admit it has left me a bit anxious myself, not knowing the true state of my disease as I head in to the second half of my pregnancy. Every time I have a pain I am convinced that my Crohn's is flaring.
Friday, May 27, 2011
Ostomy Samples
You would have thought that Christmas was wrapped in my birthday yesterday afternoon when a my new samples arrived from Coloplast on our doorstep a whole day early. As a 10 year veteran in the ostomy world, I have tried it all. Been there and done that. But the day a new box/envelope of samples arrive and I am still absolutely giddy.
I do the same thing every time I receive ostomy samples--one is sacrificed for the good of the team, one is tried out, and usually I am so unhappy with the product that the third is stored away with the other disappointing samples. I could be a consultant for Consumer Reports with the testing and nit-picking I will do with that first sample. What will happen if I yank it this way? What will happen if I bend the wafer this far? How many different ways can I roll and bend the closure before it fails?
We are trusting our lives to this little product. That may be a little dramatic, but really we are. Have you ever been out in public and had a leak? My worst leak happened in the middle of church when I was sitting smack dab in the middle of the row. These companies are asking me to rest my dignity in their product. It has to hold up to my scrutiny and active life-style to earn my respect.
When a woman with Crohn's disease, an ostomy, and a couple of hernias gets pregnant, an entire medical team swarms in to action. I cannot remember for certain, but I think my third call with the news I was pregnant was to my ostomy nurse. She told me the biggest problem I would have ostomy-wise is that my stoma would most likely expand some requiring a change in ostomy products. Four months later and here I am, with a box full of ostomy supplies that won't fit my stoma. And what did my ostomy nurse send me home with? One piece Hollister samples with a transparent bag!!! In what universe does a person want to see their poo at all times? This led me to a two day search through the top three ostomy supply companies' websites, trying to figure out what on earth to settle on for samples.
In my opinion Coloplast (http://www.us.coloplast.com) is the the be all and end all of ostomy products. Hollister (www.hollister.com) has tried to keep up with their "lock and roll" but it doesn't hold a candle to the Coloplast products with the velcro closure. After trying the three major brands out there--Hollister, Convatec, and Coloplast, I can say that I am happiest with Coloplast. So happy that I have used their products for over six years. I received three samples of the all-new Sensura Xpro wafer and cannot wait to see how they work.
I do the same thing every time I receive ostomy samples--one is sacrificed for the good of the team, one is tried out, and usually I am so unhappy with the product that the third is stored away with the other disappointing samples. I could be a consultant for Consumer Reports with the testing and nit-picking I will do with that first sample. What will happen if I yank it this way? What will happen if I bend the wafer this far? How many different ways can I roll and bend the closure before it fails?
We are trusting our lives to this little product. That may be a little dramatic, but really we are. Have you ever been out in public and had a leak? My worst leak happened in the middle of church when I was sitting smack dab in the middle of the row. These companies are asking me to rest my dignity in their product. It has to hold up to my scrutiny and active life-style to earn my respect.
When a woman with Crohn's disease, an ostomy, and a couple of hernias gets pregnant, an entire medical team swarms in to action. I cannot remember for certain, but I think my third call with the news I was pregnant was to my ostomy nurse. She told me the biggest problem I would have ostomy-wise is that my stoma would most likely expand some requiring a change in ostomy products. Four months later and here I am, with a box full of ostomy supplies that won't fit my stoma. And what did my ostomy nurse send me home with? One piece Hollister samples with a transparent bag!!! In what universe does a person want to see their poo at all times? This led me to a two day search through the top three ostomy supply companies' websites, trying to figure out what on earth to settle on for samples.
In my opinion Coloplast (http://www.us.coloplast.com) is the the be all and end all of ostomy products. Hollister (www.hollister.com) has tried to keep up with their "lock and roll" but it doesn't hold a candle to the Coloplast products with the velcro closure. After trying the three major brands out there--Hollister, Convatec, and Coloplast, I can say that I am happiest with Coloplast. So happy that I have used their products for over six years. I received three samples of the all-new Sensura Xpro wafer and cannot wait to see how they work.
Thursday, May 26, 2011
About Me
I guess my first post on my new blog should establish my street cred in the Crohn's world. I have had Crohn's since I was nine years old--I am 35 now, so I really don't know anything but life with Crohn's. I've had four Crohn's related surgeries: all four have been major, I have flashbacks still, kinds of surgeries. I like to think that I don't have that bad of a case but after having a number of doctors tell me that my disease is beyond their capabilities, I'm starting to think otherwise. Either that or I am in denial.
I have been blessed by a "I don't care who knows" attitude that has helped me encourage a great number of people. When I was younger, having a disease like this was so embarrassing. Diarrhea, vomiting, nausea, anemia, etc. aren't very appealing. It wasn't until I was in my mid-twenties, and more secure in who I was as an individual, that I was able to do away with the shame that comes with Crohn's disease. This of course coincided with me becoming increasingly sicker, making it harder to hide. Once I embraced my new "I don't care who knows" attitude, I came out of my shell.
I am embarking on new territory, for me at least, as I head in to my fifth month of pregnancy. I appear to be in the fortunate 33% of women with Crohn's who go in to remission while they are pregnant. I have to admit, a big reason that I finally started a blog is because there is little, if any information out there for women with Crohn's disease and their journey through pregnancy.
So here you have it. My first post.
I have been blessed by a "I don't care who knows" attitude that has helped me encourage a great number of people. When I was younger, having a disease like this was so embarrassing. Diarrhea, vomiting, nausea, anemia, etc. aren't very appealing. It wasn't until I was in my mid-twenties, and more secure in who I was as an individual, that I was able to do away with the shame that comes with Crohn's disease. This of course coincided with me becoming increasingly sicker, making it harder to hide. Once I embraced my new "I don't care who knows" attitude, I came out of my shell.
I am embarking on new territory, for me at least, as I head in to my fifth month of pregnancy. I appear to be in the fortunate 33% of women with Crohn's who go in to remission while they are pregnant. I have to admit, a big reason that I finally started a blog is because there is little, if any information out there for women with Crohn's disease and their journey through pregnancy.
So here you have it. My first post.
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