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I have had Crohn's for many years and I have had 5 surgeries. But I have always gotten back on my feet even though my last surgery was 6 hours and I was out of work for 3 months. Now it looks like the last resort is an ileostomy and I am avoiding it big time. I am currently taking 8 imodium a day as well as 8 lomotil and I am still having diarrhea all the time. The biggest issue is a lack of bowel function at night because I have so  little large intestine left. Can anybody give me some advice???? I do know that this is fear of the unknown but it seems like such a last resort!

 Reply posted for jccconklin.

I can't tell you how much the support of all of these replies is helping me! The surgery is inevitable and I have a wonderful surgeon  and I have to trust him. He wants to remove everything from the small intestine down so that I don't have to worry about future issues with having to have colonoscopies and such. There is a lot of damaged tissue from years of surgeries and scar tissue.
I also have an amazing man in my life who is there for no matter what happens ever. He has taught me to believe totally in myself and to accept myself just as I am. I really wish that I had developed this level of confidence earlier in my life but it is awesome.
I will keep you all posted but many many thanks to all of you!

 Reply posted for MiMi.

Hi, This is a first for me. I received my news letter from Hollister and one thing led to another, so here I am reading your message and feeling I needed to join so I could respond.

Have the surgery! I am older than most and back in January 1980 after many years of pain, fistulas and all that goes with Crohn's I gave into my last surgery. At that time it was either that or loose my battle with the disease, and the thought of dealing with the pain any longer wasn't an option, but checking out wasn't an option. Thanks to a very special Doctor who was frank about my outcome and the love of my family I made the decision that changed my life and saved it. Oh, don't think you will be without remorse, you've just lost a part of yourself, but you'll live with the change. No more hurting and all that came with it.  It was the right decision. I don't mind saying I was sexy and still am, and I learned that those who cared for me were just waiting for me to make up my mind to be healthy...nothing else mattered. One of the best and most important decisions of my life...to live again!

Best wishes, God bless. I'll be thinking of you, JC

 Reply posted for MiMi.

Hello.  I am new to this site, but I thought sharing my two bits of information might help with your ileostomy decision.  I was diagnosed with UC about 11 yrs ago.  I struggled with it for 5 years taking all kinds of meds and steroids.  Finally nothing worked anymore and I lost 40 pounds in 4 weeks.  I was slowly dying.  I finally gave in and had surgery at the Cleveland Clinic.  In my first surgery they removed my large intestine and gave me an ileostomy bag.  Before the surgery I wasn't really sure what to expect.  At that point I said whatever, just make the pain stop.  It took at couple of days to get used to the bag and how my new system would operate, but I feel 100% better.  When 3-4 days I had energy like I had not had in years.  Actually the doctors would hate for me to say this, but I felt so good that I went water skiing within 2 weeks of the surgery and had no problems.  I wore the bag for 9 months.  During that time I swam, ran, lifting weights, and even wrestled.  At the end of the 9 months I had the J pouch constructed and my ileostomy was reversed.  However 2 months after using the J pouch I developed pouchitis and have been battling it off an on for 6 years now.  Sometimes it feels like my UC is back and the only med. that worked is antibiotics.  But this past Jan. even they quit working.  I have tried numerous other drugs since then with no relief.  I have been in horrible pain again and losing weight.  I finally convinced my doctor to give me back my ileostomy.  I will have surgery within two weeks and am looking forward to it.  Yes, there are a couple of adjustments you will have to make with the bag, but to me they are very minor compared to the rewards.  It's all in your head really.  It if takes away the pain and you no long have to take meds, then you can do anything a normal person can do.  I hope this helps.

 Reply posted for MiMi.

Mimi,
     I've had surgery for over ten years, tried every medication and trial drug, yet nothing seemed to work.  I finally discovered surgery was my only remaining option.  I was terrified, yet had no quality of life pre-surgery.  Being an active male in my early 20's I too was concerned about my body image, and the thought of having a permanent pouch for the rest of my life.  However, I really had no other option.  I took the surgery in stride, knowing it was out of my hands.  Shortly after the surgery I was taken off all prendisone and only left on some vitimins.  After the wound healed, and I got my strength back, I was healthier than ever.  No more urgent trips to the bathroom.  My quality of life improved more than I imagined.  Of course it took time to accept I'd have this bag on my side for the rest of my life, but honestly, I wouldn't have it any other way. 
     Its been about 8 years since my surgery, and I've never been healthier in my life. No flare ups, no problems, and I only take Humira for the Crohn's.  Having Crohn's is no joke, but having the right attitude and a good support system is what keeps me going.  Good luck, and I wish you the best.
-Ryan

 Reply posted for RodsHunny.

Thanks so much for your encouragement and support. It certainly is so nice to know that there are people out there who have been through all of this and are now in a better place. My situation has its constant ups and downs and I know that is the case for all of us. Resiliency is the name of the game and I know that I just have to look at the ilesotomy in the same way. I will keep you posted~

 Reply posted for MiMi.

My husband had the surgery in Jan 05 after suffering for 5 years with severe ulcerative colitis. He had finally hit bottom. He had tried asacol, prednisone, remicade and anything they could think of. Nothing helped. His "good" days were only going to the bathroom 10 times a day. I'm sure your concerns are like his were. He was afraid there'd be a smell (which there isn't), he was really worried about intimacy especially since we are only in our 30s (It's not an issue) and unless we tell someone he has it, they never know. It was honestly the best decision we made. Our marriage was falling apart becasue he was so miserable plus taking the prednisone as long as he did caused mood swings. He had lost 2 jobs he loved because of this disease and was out of work for months at a time putting us into bankruptcy.Within a few days of surgery, he was strutting through the hospital in his gown and back to his fun, joking self. He does have some issues with his confidence because of it but not enough to regret the decision. It is a very difficult decision but if you have a good support of family, it's worth it to finally feel normal again. I think my husband had forgotten what it was like. We had 2 small boys and we couldn't go anywhere becasue there had to always be a bathroom. He missed out on alot with them. We wish he had had the surgery years before. I hope this helps you. I'll gladly talk more with you. Good luck.

 Reply posted for MiMi.

I've had Crohn's for over 16 years, and like you have done everything to avoid having an ileostomy including participate in clinical trials.  Two years ago, I finally had to have a colostomy.  I thought at the time that I would be better off, but I was just putting off the inevitable.  I've spent the last two years bouncing back and forth taking meds I once swore I would never take again.  I kept holding out for some other treatment that might work.  Nothing did.   A week ago today, I finally went through with it and had the ileostomy done.  Its only been a week, but I'm so glad to have it over with.  I can now stop worrying about that inevitable day and look forward to better ones ahead.  I guess I always thought of the surgery as a final sentance.  But now it feels like a great weight lifted from me.  Hopefully, my recovery will go well, and I will be better off than I was.  But, of course there are no gurantees.  All
I can say, is don't think of it as a sentancing and do what you have to do to make the best of your life.  If that means having the surgery, get it done and over with.  Good luck.

 Reply posted for MiMi.

Hi.  I can't help you with your disease issues, but I can tell you that I had an ileostomy for 6 months last year and I loved it.  I fought it hard too, but I grew to love it.  It didn't restrict me in any way.  No one knew I had it unless I told them and even then they couldn't believe it.  When you speak with your ostomy nurse...make sure that they place the stoma site carefully.  If you wear low riding jeans make sure that it is in a place where it won't interfere with that.

You may want to visit jpouch.org for more suggestions.  There is an ostomy forum board with lots of suggestions and help.  Also, there are people there that have been diagnosed with Crohn's and have perm. ostomies.

I wish you well.  I understand you not wanting to have this surgery.  It's a huge step, but it will give you your life back.  There will be no more running to the bathroom!  You can, for once, control when you use the bathroom!

I will keep you in my thoughts.  I hope everything goes well for you!

Susan