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Ileostomy looming...

Hi all,

I've recently been having to get to grips with the prospect of undergoing an ileostomy due to the fact that there does not seem to be anything that can send this damn disease into remission. The only thing that works to reduce symptoms is pred. I have tried all the conventional drugs incl. anti-tnfs but to no avail, as soon as I taper off pred I flare. I was just taken off a clinical trial for a new treatment because it was t working either.

Around 90% of my colon is affected with no trace of the disease elsewhere in the digestive tract. My GI says that surgery is a good option for me since it would completely remove the affected part I.e. my whole colon.

I'd be interested to hear from anyone who's been through, or is also having to get to grips with the prospect of not pooing again!

I've always considered myself to be relatively lucky with my crohns because even though I suffer a fair bit of pain and upset when I'm flaring, I have never had any really nasty fistulae, strictures etc. My GI says this is another good reason for me to opt for surgery, I.e. before these types of complications occur...

I guess I'm just wondering what you guys think, and I'd be really keen to hear your experiences. How easy was it to adjust you'd lifestyle after the ileostomy?

One more thing, I've never found diet to be a direct factor in my crohns - I've wondered if this is because my small bowel functions fine...? If I'm in a flare I avoid spicy curries etc, but they don't trigger any response when I'm not flaring I.e. when I'm on pred.

I am in a situation where I am dependent on pred, and although I've not developed any side effects of this other than a massive appetite, I'm scared of all the long term problems associated with it. My faecal Calprotectin has been between 550 and 800 for three years now, even when I feel fine on pred, and the GI says it may control symptoms but it is not inducing crohns remission.

Would love to hear your thoughts.


Naples, Florida
Sounds like quite a tough case :( I'm so sorry to hear you're having to go through this. My heart goes out to you.

As long as there isn't an immediate danger, I think I'd try Low Dose Naltrexone and exclusive enteral nutrition at the same time to see if it calmed things down first. Obviously if surgery is needed NOW, go for it. But why not try the treatment options that have worked for others first if surgery isn't needed immediately?
You might post this in the stoma subforum for more direct exposure from others who have had this surgery and some of the things that did or didn't work leading up to surgery.

Also, ileostomies are pretty cool....but then again, maybe it's just me that thinks that! :)
Sad that your disease has taking this course. And, Sadly, I can relate. I would say put it off as long as possible. But, I will share my experience with you so that you can get a feel for all aspects of a colon gone wild.

Had my ileostomy since 4-26-87. Toughest choice I have ever made in my entire life. My colon, and crohn's, where going to kill me. Straight up, live or die, make a choice. It sucked, it makes me tear up when I think about it.

This is what lead me to choosing my ileostomy:

I first became ill at 21 years of age. Within 3 years I developed fistulas, fissures, tags, all around my anus. I had abdominal pain, vomiting, lose of weight. And it was all on an extreme level. Steroids were my "Savior". They would make all the joint pain go away and cool down all the activity in my intestines. But every time I came down.. Boom.. Death. I guess after 4 years of maxed out doses of Prednisone the Doctor's decided they were pulling the plug on that treatment. So, I was told, ileostomy on their terms by setting up a surgery date, or leave things as they are and come in through the emergency room with an high likelihood of not surviving the surgery. I was a proud and strong young man, and I have to tell you, it took me a week to decide to let them cut me.

That being said. What a relief. I felt so much better and it took very little time to adjust to caring for the stoma. I never let anyone take care for me, except when I was hospitalized. My joint pain cleared up, I put on weight, my color was good (no more walking dead), my abdominal pain was eliminated. Wonderful. My biggest issue was I wanted to be reconnected, so the doctors left me with a small portion of colon to give me a shot at an endorectal pull through. Plus, they couldn't remove everything at the time of the surgery because I was just to sick. So.... Within about 9 month, yea ha, my rectum went right back to work on killing me. So, now I had this left over colon making me feel like I had diarrhea all the time, it was developing fistulas still and spuing out god knows what. Lovely. Within 2 years of the original surgery I finally had my rectum removed. Now, that is a surgery that takes a long time to heal. But, I have never had any fistulas at my rectum sight, and I was glad I just had the ileum to contend with now.

I have talk with many other people with no colon due to crohn's, or some other colon issue, and they all say they wish they would have done the surgery earlier and avoided all the pain that the colon put them through. I tent to agree, but it is a much bigger loss than people can imagine.

As far a your doctor saying you may not go into remission, he is just being honest. I have never been in remission since I became ill in 1982. I have Crohn's/Crohn's Arthritis and it never goes away. My intestine are still temperamental and I have had a fistula at my stoma sight (by far the most painful event I have ever experienced). It just seems that any of the meds made to help me, just hurt me. So, I am relegated to low does steroidal and pain meds. And you know what, for me, it works. I have not been in a hospital for 10 years, and all my pains are manageable. I don't work, and I am extremely easy on my body now, it only took me 20 years to figure out I was not normal. But, I am happy and I do enjoy life! Well, just like anybody, I have my good days and my bad days. But, overall, I am a happy man.

I think, if I can impart any wisdom, it would be to say, no one can predict the future, not even events in the very near future. Everything is always changing. With that being said, you can learn to control yourself, and your thoughts, and a positive attitude will take you a long ways. By this, I mean, focus on the positive in life and not the negative. If you can do this, you will soon overlook the negative and it will not become such a factor in your life.

Hope this helps. If there is anything I can do to help, just ask.

Peace and Love
Thank you for the responses guys, this forum really is great.

Higbonzo, so sorry to hear about your troubles with a nasty colon. I can only imagine what that must have been like. I am lucky not to have had the real Nasty fissures and fistula.

David, thanks for the suggestions. I think I will talk to my GI about LDN, I have an appointment with him tomorrow. I'm in the UK and although difficult, it seems possible to source LDN.

Thanks again and good health to you all.