Seeking Advice - Ileostomy Reversal After 18 Years - Nervous but Excited!

I have had an ileostomy for 18 years. I was diagnosed with UC and was incredibly ill for years hence the bag... I was told I could consider the J pouch op but after years of ill health and then feeling great finally I decided to forgo more surgery and just live with the bag.

Then last week, I spoke to a specialist about a reversal. He told me he could join me up without the J pouch and reckons it should all be ok. I have booked it in for 10 December. Now I am soooo nervous and really hope I am doing the right thing. To think I could be 'normal' again after years of living with a bag is so exciting but the thought that I could be really unwell again is on my mind and I am scared. My marriage fell apart 5 years ago, and I am single. I do not date because I don't know how to tell someone about the bag as I did tell one guy I really liked and he dumped me the very next day! I guess the thought that I could be normal is the thing that I am excited about.

Does anyone out there have any experience with this? As that part of my body hasn't worked for 18 years I am needed to know if it will work again etc. The doc said it will take a bit to get used to but should be a good outcome.

Any feedback is welcome.

Thanks x

Feelicious,

Sorry. I do not have experience with this situation, but it sounds like a great opportunity though. I was wondering if you discussed the risks with your surgeon?

- Mark

You can still get UC back in the remaining rectal stump. That's why they don't rebook that way and do a J-pouch instead. I would discuss this with your surgeon.

Hi Feealicious, just my two cents...I am very excited for your takedown surgery scheduled for Dec 10. You must have been so happy to hear the doctor's positive response - you are a good candidate. Between now and then, I would research on the internet and meet with other surgeons to discuss both the pros and cons of a reconnection. Your current doctor is very confident about your surgical outcome, but I would question him/her about potential complications or future difficulties. Get all the facts now as you have time to do the research.

For example, I would be very interested to know how long it will take before my body begins to evacuate regularly. I would want to know diet restrictions such as needing extra fiber or less fiber each day. How is the doctor reconnecting...a straight shot or will a j-pouch be made? How many times will I be going to the bathroom (approximately) each day, 2, 4, 6, 8 or more? If a j-pouch is created, how many feet of small bowel will be used? Will I have short bowel syndrome because of this surgery? Is my rectum healthy enough to handle multiple bowel movements each day?

Those are some of the questions that I would ask. I had UC throughout my colon and rectum. I still remember the pain of going to the bathroom sometimes 10 times per day and do not miss "the old-fashioned" way. It hurt. Take care and good luck to you. Best wishes for a great surgery and quick recovery time. LH

Thank you for taking the time to comment. Your advice is appreciated. I am very nervous as I do remember going to the toilet up to 30 times a day when I was ill, and the thought of that again is scary. I didn't know I could be joined straight back up as I always thought they would have to do a J-pouch op. But he is very confident that it should be okay... in saying that, he is a surgeon and his job is to cut people open, so I am very skeptical. Since last week when I posted this, I have decided to postpone the op. I am going to ask for an examination of the rectum under anesthesia first to see how that all looks. Then take it from there. I've decided I'm not going to rush into it.

Thanks for your comments ;

How to Manage Ostomy Leaks with LeeAnne Hayden | Hollister

Wise choice, I'm an ex J-poucher, failed miserably, but I urge you to look for happy J-pouchers, listen to them, and then make your own decision going forward... I basically let the doctors talk me into it as I was so hungry for anything other than the bag, and voila, the bag was the best decision I have ever made reluctantly and I've now had both... Pooping out your ass isn't what it's cracked up to be, unless it's a great BM... and I can assure you, your BMs will most likely be thin and loose for quite some time, which in my opinion, doesn't make for a happy individual... Good luck

Thanks for your advice and sharing. I am sorry you had such a bad experience. I have heard this a lot and that's what worries me. So happy to have postponed it until I get everything checked out.

Want you to know I have had a continent ileostomy (ileal pouch) for over 40 years. I had to have one revision....(tighten the valve). I understand the Barnett? procedure is supposed to be an improvement of the continent ileostomy. I have been happy with it. I had a total colectomy so was not a candidate for the J pouch when it came out. I have heard you need to go to the bathroom many times with it. I empty the pouch about 3 times a day, depending on how much I eat. You do need to watch certain foods....corn or anything that can block the ileum going into the pouch. And, by the way, if your male friend left when he found out about your bag, he's not worth it.

If it ain't broke, don't fix it.

Hey Feealicious, you've got lots to think about.  I suggest you follow LadyHope's advice and seek all the info you can get.  Beyondpar's comment is worth considering also.  Hey, you know what?  Everything everyone suggested was to help you and that's a pretty neat thing.  Take all the time you need to make the right decision.

Respectfully,

Mike

Hi Feealicious! I wish you the best on whatever decision you make on the future of your ileostomy. I'd like to offer one piece of advice from my proctologist on reversals. I was going to get a reversal of my ileostomy two years ago. Turns out the tissue in the j-pouch hardened and it was no longer possible. My doctor said that in his opinion, we have a better quality of life with the bag than with the reconnection. His reasoning is that with the bag we have control on when to empty it (well, most of the time). Once you're reconnected, there is no sphincter control of your rectum, therefore you have to wear pampers permanently. He also thinks the bag is a better option for intimacy, as you can keep odors under control.

Hi Elberix.

Thank you so much for sharing. This is exactly the things I need to know and the things I am afraid of. You mentioned sphincter control of your rectum. I wondered about this. I did ask the doctor about control, and he said in time things will improve but it could start off a little slowly. Is what you're saying true? That I would have no control? Also, you mentioned the odor. As awful as it is to talk about, it is a real concern and I am going to be very honest here. The smells from emptying the bag sometimes are foul! This is obviously from having no large intestine and not being able to pass gas, which all goes into the bag as you know. This is something I wondered about too. I really appreciate your advice. I have absolutely no faith in surgeons or doctors. Their job is to cut people open and try to fix problems. However, if things don't go to plan, I would be the one left with bad health and a lot of downtime.

Hi Feealicious, I just wanted to quickly post about odor control with the pouch. I found that using an ostomy deodorant really helps with the odor. Early on, people would say to me, ileostomies do not smell.... well they were incorrect. Stool does smell, sometimes stronger than other times. I use a few brands that do help with odor control such as M9, Safe and Simple, and Nascent. I have a bottle of Ostofresh and need to give it a try. I have a pretty sensitive nose so I still detect a slight odor but it is reduced with these products. I also know a few fellow mates that make up their own natural deodorizers. Final note, I change my pouch every day.... mostly because the filter clogs and won't work so a fresh one replaces the used one. Add some pouch deodorant and off I go. Good luck! LH

Dear Feealicious, that's what my doctor said: no control. Maybe there are outcomes with some or total control of stool release. I just don't like the idea of wearing diapers all the time. While the odor in the pouch can be overwhelming, it usually happens in the privacy of a restroom. I do have faith in surgeons to fix things, as you said. A surgery is what made it possible for me to continue living. But if you think about it, our bodies have been artificially modified to get rid of the illness that afflicted us. A reconnection would be a further modification, so the result is hard to predict.

Hi there Feealicious,

I have had lots of experience with this exact situation.

UC gave me a surprise present when I was about 24/25 (that was a very long year!!), my plastic friend, now permanent, Ileostomy. After about 3 years I was given the option of a J-Pouch. I jumped at the chance and said go for it!!

I had a great experience with the J-Pouch for about six years and then the Pouchitis began. First thing you need to know is that when Pouchitis begins then the Pouch cannot be saved!! In my case, the Ulcerative Colitis emerged in my Rectal stump, almost none of that is left except for the Sphincter. The Sphincter was enough to reignite the Colitis. The docs use different names. You will hear it called Pouchitis, simply an inflamed pouch, etc., but the result is the same, the Pouch fails and it needs to be removed or at least deactivated. It was, as I say, really great for several years.

The toilet visits are 10 or 12 a day for several months after the Pouch is constructed. After about a year, I was down to about four or five visits a day. This is when my life felt halfway normal again. I could ride my bike for five or six hours at a time!!!! all over San Francisco and the GG Bridge. I had a gorgeous girlfriend for about a year, actually had three GFs during my Pouch Period. The third and final GF began calling me "the Tidy Bowl Man" when my visits began to rise in number. This was after about 7 years with the Pouch. In the end, I could not depend on my Sphincter to function while we were being intimate. I never had an "accident" but sometimes I would have to jump up and run to the bathroom.....obviously causing much stress and ruining a delicate moment. This situation was a deal breaker as far as my GF was concerned.

Actually, I did not blame her, I couldn't ask her to put up with that so I believe now that I engineered a breakup to avoid any feelings of guilt she might have had. We finally split. I knew that my dance with "Normality" was over and it was back to pain and 10-20 visits a day...eventually. It felt like shitting razor blades for years. I would not give up on the Pouch and get the Ileo back. The docs kept telling me that we could fix it. I used Vicodin to control the pain and the frequency. This worked for a long time but addiction will become a problem for many people using Vicodin or other Narcotics for an extended period of time.

My final word on the Pouch.....You might get between five and seven years of good times with it but it will eventually fail, in less than ten years typically. I am torn between regretting it and looking back at the beautiful memories that I created while I had the J-Pouch. Those years are like a different world in which I lived for a while, knowing that I would have to revert to the Bag eventually. I really don't think that I regret it because of those memories and the wonderful people I met during that time.

Having the reconnection without having the J-Pouch would be a bit of a disaster I think....just my personal opinion!! The Pouch mimics the Sigmoid Colon as a holding area for the "Stinky" stuff. Without the Pouch, there is no "Holding area" at all so the Stinky just comes right out with No Control at all!!! from what I know about it. What caused the most pain for me was almost pure stomach acid that came out my butt. It burned the skin off my butt, leaving the exterior raw and bloody at times, burned the skin right off!!

The inflammation and raw flesh eventually brought a risk of Fistula and Cancer and many other nasty things so I eventually asked for the Ileo back in about 2004. It was a very, very tough adjustment but eventually I came to terms with it.

I am single and quite happy at this point. I may need my Sphincter removed at some point (no real Rectum left) and have my butt sewn up because I have some leakage and inflammation periodically and it may be getting worse.

Therefore, I would not recommend the reconnection without the Pouch. If you get the Pouch then prepare for failure after less than about ten years. The reconnection/ Pouch surgery involves several different surgical procedures and about a year of surgery and recovery before you start using the "Normal" exit properly.

Definitely ask about "Short Bowel Syndrome" if a J-Pouch is created since quite a bit of the small intestine is used in the creation of the Pouch.

I hope this was useful to you in your decision. As I say, I look back fondly on the first few years with the Pouch but the final few years were a real challenge. The main thing to remember is that when the Pouch begins to fail, with Pouchitis, then the game is over and the Pouch must be reversed because it will never get better.

You have a tough decision so I hope I gave you some useful info.....just my story, I'm sure there are many other people who will advise you further.

Hugs, Eamon/Magoo

Hi Feealicious,

I've had my perm ileostomy for five plus years now. When I had it done back in 2010, there were several questions I had asked about it. One was the J-pouch, with what my surgeon told me made me think really hard on it. I did some research on it and wasn't too impressed with it. Sure, like anything else, it has its pros and cons. I still, to this day, have my rectal stump. The surgeon left it with the possibility of getting the J-pouch if my skin couldn't accept the pouching system. I have no problem with my bag. My skin isn't sensitive to the flange or anything else that I have to use. At first, I did have some issues with it leaking and the bile from that was awful, making my skin around my stoma raw as hamburger. Thank goodness all is well now. My thoughts are if a little leak around my stoma was that bad, just the thought of all that acidic bile around my rectum. After all, it's all stomach acid. Not saying that you shouldn't do it, that is your choice. When I went back to my docs for a checkup, one of the nurses asked me why didn't I opt for the J-pouch? My response was, I'd rather see what is happening up front than not be able to see what's happening at the back. I had enough times struggling with the ulcerative colitis that caused me to have the bathroom as my second home. With my ostomy bag, I have a little more control going to the restroom. Not having to worry whether or not I will make it. I was raw enough then and I couldn't imagine going through that again. Just my two cents. It is a lot to think about for sure. But I'm sure whatever you decide will be to your best interest. Good luck on whatever you do. Charleston guy

Thanks Magoo and Charleston Guy for sharing.. You have given me the advice I needed.. I have decided to postpone it .. for now anyway. I cannot afford to be out of work for a long time and I may need a long time if it doesn't all go to plan, which is a huge possibility. So for now I'm going to carry on as I have for the last 18 years, and hope that one day I may meet someone who accepts my faults and all.

I'm happy that I could be of some little help, Feel.. I think someone once said (probably me LOL!!), "Plans are God's practical jokes on us." A week can sometimes become a month in the hospital. Being alone gets to be a pain sometimes, but it has its advantages. I never need to have my travel plans approved!! I never have to wait for the bathroom. As I said in a blog, I've perfected the "point and shoot" emptying technique while standing, so I never have to sit on a strange toilet, a real bonus!!

Best wishes, Eamon

Howdy Feealicious... I am happy you are happy but

I agree, me personally, I would be speaking to my surgeon. They are the ones that know exactly what they did in there and what's there to work with. Not saying don't consider, just saying another opinion is worth the time...

2nd....Surgery is surgery. It all takes time to recover and feel good, but there is always a chance you could be worse off than before. Nothing is guaranteed... except the surgeon gets paid, good or bad!!!

I am an ileostomy mate and, to be honest, I am normal. Just normal with a bag, hun..... We are all who we let ourselves be and who we become, and I refuse to be different (not normal) because I'm in a bag... Love me or leave me is my philosophy in life....

Many of us mates, no matter what type of surgery we have, are normal. We do everything a bagless mate does or can do, and then some. If they don't, that's a personal thing, not a medical thing... The options are endless...

Mister right is out there, just have fun looking, girl

Stay healthy, be sure, be safe

Tracy

That is why I'm just gonna keep my bag.... I kind of figured that out, saying I don't want to go back how things were worried about the need to find a bathroom like now, hell now I can just take my time as I check my bag, it's getting full pull of the road, unzip my Stealth Belt, pull bag out, lean forward and open bag... wipe opening clean with TP, keep on trucking, no dropping drawers