Struggling with Ileostomy Reversal - Seeking Support and Advice

I am new to this forum. I had an ileostomy for one year and just had it reversed in August of 2014. I am having a difficult time and would like to meet individuals and have them share their experiences with me. I am seriously considering going back to the bag as I definitely feel that my quality of life was better. I should have done more research on my own. However, my surgeon explained as if it was a simple: "five to six BMs a day controlled with imodium and lomotil." I have learned that it entails sooooo much more than that. I would love to hear from others!

I had an ileostomy for a year and a half, reversal was a month ago, no real problems except I am still on a low fiber diet, which is a pain. Stoma hole still not healed, only pain is twinges when I move.

What type of problems are you having?

Hi.. I am new to this forum as well. I had my ileostomy reversal in May of this year (2014) after having a total colectomy as well as a total gastrectomy.. so sometimes my experiences are different, but I still can relate :) I am hoping to meet others with the reversal. I'm in the bathroom less than before but for different reasons, constipation... now I have to be in there so I don't have an accident. Anyway... happy to have this group :)

Hi all from GB,

I have had a total ileostomy completion in Jan 14. My first op was in Feb 13. In between the 2 ops, I had to think if I wanted a reversal or completion (permanent ileostomy with no going back ever). It was a hard choice, but I weighed up the pros and cons and went for the permanent ileostomy. My surgeon also told me I made the right choice, and he would have done the same if he was in the same boat.

This guy has done loads of ops, and he had told me he usually sees patients who have had a reversal back in again for another op, etc., or problems they are having, e.g., pouchitis, etc...

The only major disadvantage of having a permanent WDU (Waste Disposal Unit) on the outside is purely cosmetic.

I am not saying your choice is wrong, but I do not regret my choice one bit. I am now living life how I should have been. There is no urgency to find a bog anymore; I have plenty of time.

Also, another reason for me was I couldn't face any more ops if I could help it. As I get older, my body will get weaker, and the recovery will take longer. I am able to do everything I could before the op. I was told by a reversal nurse that the small intestine is designed to keep food moving; by having a reversal, it would mean getting that part of the body to do something different. That was another point I took into consideration. She shouldn't be telling me this; she should be promoting reversal. She also fully agreed with my decision. Any questions on anything from anyone, please ask. I am more than happy to answer. I am 11 months down the line from my op, and I can honestly say it has not hindered me in the slightest. I have been on flights, swimming, lifting weights, etc...

Sierra,

I had a colostomy reversal on October 2nd, which resulted in an unexpected temporary ileostomy that I had finally reversed on Tuesday, December 23rd at the University of Chicago Hospital in Chicago. I had a fantastic surgeon who happens to be Chief of the colo-rectal department (after having transitioned from Vermont to U of Chicago). It is now almost a week, and except for some burning after a BM, I feel like things are back to normal. Not running to the washroom too frequently. This is after a week. Whether this will remain the norm in the months ahead is not certain, but it seems like he did a great job. I might add that I had my colostomy for FOUR years and 3 months. So it was hit or miss if or whether or when my plumbing would work correctly. I might also add that my underlying cause for the colostomy was diverticulitis (perforated colon in October 2010).

Perhaps other underlying causes other than diverticulitis that resulted in your ostomy could make things more difficult after a reversal. If you would like, I can refer you to my doctor for a consultation.

Sigmoid Freud [Stewart]

Stories of Living Life to the Fullest from Ostomy Advocates I Hollister

Hi, I had a ileostomy reversal July 12, 2013 and I feel as you do and wished I never had the reversal and stayed with the bag. I felt more healthier. I'm now having diarrhea up to 10 times a day and about 2 weeks ago I had a small bowel blockage from scar tissue I have after surgery. I wished I had an answer for you but it seems like we both are going through the same thing and I pray I find an answer to all this diarrhea. I too just want to get back to normal. Good luck to you ... CheryleM

I had cancer in my lower large intestine, so removal resulted in temporary ileostomy. I had that for 16 months. I had a leak that caused a bulge and wouldn't heal on its own, so I had a flap surgery to remove the bulge and then wrap my stomach muscle around the colon in that area to create a blood supply. I had the reversal in May of 2013.

I have many bad days still. I still have accidents. The longest I have gone without an accident is 2 weeks. Usually, two a week and on bad weeks, several a day, every day. I have had tests and they say my muscles are working down there. I don't think so. I have had multiple small bowel blockages.

I wish many days I would have chosen to not have the reversal. I have tried many changes to my diet to control things. Metamucil twice a day helps. 1 tsp in 2 oz of water or you get the opposite effect :(.

I am still on a low fiber diet or I get blockages. I think a better diet would help, but my body won't allow it apparently. I had improvement continuously until 4 months ago. Now, I haven't noticed any improvement. That saddens me. I am willing to do what needs to be done, but nothing has worked much. I would have thought the accidents would have ceased by now. That is the worst part.

I do take Imodium, not daily. I work from home so I am able to function most days without it. I still go to the bathroom 10-15 times a day. Not fun. If I don't eat, I am okay, but I have found not eating is not so good for the body.

Tried probiotics, no difference when I quit taking them 6 months later.

So, if anyone has any ideas, please pass them along.

Hope your road to recovery is much better than mine.

Hello. I know everyone knows this, but nothing is ever the same after your colon has been removed. We all make the best of it, and I love this forum as I have learned so much! I have had the stoma/reversal/fistula/stoma. I didn't mind the reversal; however, my bum became so irritated and sore that I used diaper rash cream to try to get through the next bathroom stop. I didn't have many accidents, a few...the one that stands out is I had my jammies on and bent over to get something off the floor, and my boyfriend at the time pointed out that I had a mark, i.e. accident, on my pajama bottom. Embarrassed. Argh. I was still having fistula problems, operations, recto-vag fistula...ick. Long story short, I have gone back to the bag and have never regretted it. I haven't had to be in the hospital for two years, and that is a great accomplishment. I don't mind the bag anymore, and feeling good outweighs the cosmetic benefits (who are we kidding...we still have the scars) of having the reversal. My philosophy now (at 58) is "if it ain't broke, why fix it"? GO BAG!

Hello to my ostomate friends!

I have been reversed (ileostomy) for almost 3 years now. I had it for almost a year. I will tell you that for the first 1-2 years, it will be quite difficult. No sugar coating it, just fact. It might depend on how low your anastomosis (connection) is or will be. Mine was mid rectum, so my problems are more difficult. They removed 3" from my rectum and 7" from my sigmoid colon.

As far as my crazy colon and BM's, they are better but I still have anywhere between 3-10 BM's a day. I will go about 2 months before I get the rectal spasms which are very painful, and I will poop about 20 times! It used to be every day, so it is getting more spaced apart. My connection was very low (mid rectum), hence my problems, but I am thankful and have accepted my "new" normal. Hopefully, it will continue to get better; it just takes time. Our guts take a LOT of time to heal!

I would definitely do it again because the GOOD outweighs the BAD! In the beginning, I regretted my decision because of the pain and pooping all of the time, but I changed :-)

For any particular questions, just ask and I will try to answer as best as I can. Be happy and healthy!

I have had a continent ileostomy for 40+ years. That was when it was new. I have had to go to the hospital once to have the valve tightened. You do have to watch some of the foods since they can block the passage, but those are obvious...corn, raw vegetables that won't break down. Other than that, I eat everything, but make sure you chew it really well. I am 75 years old and travel a lot. I use my original catheter which costs $50.00 each. I'm glad I had it done but am concerned as I age. Inserting the catheter might be hard...that's if I live to at least 90.