Hi there guys, my name is Sadie. I'm 31 years old and have had Crohn's for 14 years and an ileostomy for 5 years. I was told at some point that this could be reversed. I have been going round in circles of consultations and colonoscopies over the last 5 years to no avail. My consultant tells me there is inflammation and says they won't touch it until the inflammation is gone. Yet, the doctor that did my last colonoscopy told me prior to sedation that the only real way to sort this would be to reconnect and let nourishment run through. When I mentioned this to my consultant, he sighed and told me it was about time I accepted my situation. I am and have been fully accepting, but believe if a reversal is possible, then why not? Has anyone here had reversal surgery with existing inflammation, and also only been offered azathioprine and nothing else for medication?x
sadie31
May 15, 2014 8:00 pm
mitdad
May 16, 2014 4:07 am
Hi Sadie, doing a reversal with hx of Crohn's is risky enough even if under control. Doing it with inflammation still existing is a time bomb. The recurrence rate is high. Any surgeon who would consider doing it under this circumstance I would run from. I understand how you feel and would like to return to the way it was. Please research this. My doctor when I was 11 was Crohn himself. Good luck and positive thoughts. Barry
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Posted by: Karen & Stella
Fay,
I am one of those few people who still have a lot of output at night. However, I suffer from short gut syndrome after seven bowel surgeries that led to the loss of much of my small intestine as well as my large intestine from the initial bowel cancer surgery. It does get better over time as your system adjusts, but an ileostomy can be a challenging adjustment. It's important to connect with a good Enterostomal Nurse - ET nurses who can help you problem-solve over time. It's been five years since my initial surgery, and I had a great visit with a new ET nurse in December. He really helped me with the problem of high output at night. I had been getting up every 90-120 minutes to empty my high output bag because of filling. If I slept for three hours without emptying, I would have problems. My ET nurse helped my husband and me make a nighttime collection system using a Rubbermaid juice container with a handle and my old CPAP hose. This is connected to one of my two-piece high output bags and allows for continual drainage. It isn't pretty, but it has been a real lifesaver. I guess the real message I want to share is to stick with it, find a nurse who you can work with, and together you will find solutions to whatever challenges you face. This website is also an important support for me and others. There is nothing you will go through that others haven't already faced and figured out. There is so much wisdom here. Read the materials they've put together for newbies. There are a lot of great suggestions to use. I hope things get better quickly for you.
Karen
I am one of those few people who still have a lot of output at night. However, I suffer from short gut syndrome after seven bowel surgeries that led to the loss of much of my small intestine as well as my large intestine from the initial bowel cancer surgery. It does get better over time as your system adjusts, but an ileostomy can be a challenging adjustment. It's important to connect with a good Enterostomal Nurse - ET nurses who can help you problem-solve over time. It's been five years since my initial surgery, and I had a great visit with a new ET nurse in December. He really helped me with the problem of high output at night. I had been getting up every 90-120 minutes to empty my high output bag because of filling. If I slept for three hours without emptying, I would have problems. My ET nurse helped my husband and me make a nighttime collection system using a Rubbermaid juice container with a handle and my old CPAP hose. This is connected to one of my two-piece high output bags and allows for continual drainage. It isn't pretty, but it has been a real lifesaver. I guess the real message I want to share is to stick with it, find a nurse who you can work with, and together you will find solutions to whatever challenges you face. This website is also an important support for me and others. There is nothing you will go through that others haven't already faced and figured out. There is so much wisdom here. Read the materials they've put together for newbies. There are a lot of great suggestions to use. I hope things get better quickly for you.
Karen
sadie31
May 16, 2014 2:36 pm
Thanks for the response, you are right, it's just frustrating when I feel so healthy, symptom-free, yet the Crohn's is still active, wish I could get it under control :)
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MissMeganM
May 16, 2014 7:09 pm
Hi Sadie, we are almost in the same boat!!! I'm 36 and I have Crohn's too, and I was told a reversal was a possibility for me too. But I have ongoing inflammation just like you do. The disease just doesn't want to let us go, does it? LOL. Also, like you, I feel healthy and symptom-free. So what they are going to do is put me on Remicade and see if that stops the inflammation and promotes some healing of the intestinal mucosa, and I guess we will go from there. I personally am kind of afraid to go for a reversal if I was told I could because the surgery to actually get my ileo was so traumatic. I don't really want to relive any of that. Plus, I'm really scared that it wouldn't work, or I'd suffer a leak at the reattachment site and battle sepsis AGAIN. I am kind of thinking at this point, since I've pretty much adjusted to it too, that maybe I should leave things well enough alone and just get the Remicade treatments to protect what bowel I am currently using. I agree, it's frustrating! Who has more fun than us? LOL!!! Hang in there, girl. I understand :-)
blueonthetyne
May 17, 2014 5:27 am
Hi Sadie, I've recently ended up with an ileostomy after an operation due to Crohn's. The first thing I asked when I woke up to find out what had happened was, "Can it be reversed?" I'm 10 weeks on now, back to work, and feeling fitter than I have in years. My doctor at the hospital said they would even talk about reversal in the first year. Every day, I seem to get more used to this, but the thought of normality is always going to be at the back of my mind.
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Past Member
May 17, 2014 10:23 am
Hi Sadie, I had a colostomy due to Crohn's and after 2 years of great health, I had it reversed. Within a few months, I started feeling bad again and within 6 months, I had really bad bowel control. At about 9 months post-op, I developed a really bad abscess and got extremely sick. I was admitted and my only option was a temporary ileostomy. I recovered from that and felt great for about 6 years. I had two kids but after the second one, I developed a tear somewhere in the scar tissue of my bowel and developed another huge abscess and nearly died because of it. Because of this, I needed to have my stoma moved and my whole colon removed. I now have a permanent ileostomy, I can never have a reversal. I am 31 years old. But I feel so blessed that I have been able to have two children and I have a really low stoma so I can still wear a bikini and low jeans. I also feel like I am now happy the choice of a reversal has been taken away from me as it was constantly on my mind. So speaking from my experience, I would think VERY carefully about having a reversal if you are in good health now. I am now on no medication at all, I surf, ski, party, and do all the normal things someone of our age should be doing. My husband does not care at all about my bag and pretty much none of my friends even know I have it!! I so know how you feel though, it's like if you could possibly get it reversed you would, and I definitely would have to but now I know I can't, I am at peace. All the best with whatever you choose to do :)
sadie31
May 19, 2014 4:38 pm
Thanks guys for the responses and support, I guess you are right, if I am feeling healthy I should at least feel grateful for that. I have decided I am no longer going to pursue a reversal as from listening to all your stories the risk is too great. I am fine with that though. Miss Megan, I hope the Remicade works well for you. There are plenty of success stories out there and hopefully you will be among them. Blue on the Tyne, it is great news that you are back to work and feeling pain-free and fit. I truly hope you are the perfect candidate for a reversal. Unknown, thank you for your reply. You have been through hell. Our health is more important and I shall remain in the bag club, lol xx
RonaM
May 20, 2014 1:50 pm
Hi Sadie, one day you will look back and be glad of your decision. If you can live life pain-free, you are much better off. http://successwithrbm.empowernetwork.com/blog/category/stoma-care-at-home