Reconnecting After Almost 30 Years

I am facing a change. I have developed a parastomal hernia and the colorectal surgeon suggested an IRA. They could try to patch the hernia with mesh, but it would likely reoccur. He said no to a J-pouch because I have Crohn's and he just will not do that. I have 10 inches of colon, including rectum, to reattach to. I've had my ileostomy for 29 1/2 years and have longed to be reconnected ever since. I have not had any flare-ups since the original ileostomy surgery. All scopes have been negative for Crohn's. I've asked my gastroenterologist several times over the years if I could be reattached, and each time he said no because of the original diagnosis of Crohn's. Now this presents itself. I feel it's a very difficult decision and an easy one at the same time. I truly believe I wouldn't be here today if I hadn't had the colectomy/ileostomy years ago, and I am so grateful for the pain-free years I have had.

But I feel I have to go ahead with the IRA. It's what I always wanted. I hate how my body looks now, always self-conscious… I've done some research and understand the risks. Yes, I am scared of the unknown, but I think I would regret it if I passed up the opportunity now while I'm not too old (57) to have it. I pray that those unused parts remember what to do when attached 😟. I guess I just need to hear from this group to talk it out, but I haven't seen anyone in a similar situation to chat with. I'd love to hear if anyone has heard of someone being reattached after almost 30 years. 💜

Hi River's

It looks like you have made your decision already. Hopefully, everything goes well during and after the surgery, but if not, you can always go back to the bag. Xx

Very good point.

I don't think she's made a decision. She is weighing heavily on the idea that her colon, what's left of it (10 inches-dormant), is usable after 30 years idle, could actually still function, making the choice easier—worth it.

30 years? Non-usage? I would really consider and think this through. That is a long time being non-functional.

Your age is a healing factor. Complications too.

I have heard a story from a member after 20 years she got IRA, that's what it's called—direct hook up to what's left of the large colon from the small colon. She was happy with her decision. So that's one I heard success.

You have 10 inches left of it.

That can be a big issue too.

Another woman here, "crapycolon," will answer you. She has an IRA too. Not sure about how long she waited in-between.

Your doctors are giving you good advice because Crohn's usually doesn't go away with surgery. It's lifelong. J-pouches usually fail over time. Hernia repairs fail too.

I get wanting to improve body image. I do understand that.

If I were younger, I would consider the IRA if I had that option, but seek out those 20, 30-year folks who waited.

Sometimes the odds are in your favor with this surgery. Other times one is not so lucky. From what you have mentioned, you need to

research idle colons. People here will chime in. They are here.

You are in the right place.

I only know someone that had a reversal after 10 years, so it's a big difference to your circumstances. They're very happy with the outcome.

It's what you've always wanted and had your heart set on. I say go for it. No one can give a 100% guarantee on the outcome of any reversal surgery, even if it was only 3 months after having an ileostomy.

Wishing you well and hope it all goes well for you.

Thank you so much for your info! I'll check idle colons in the forum! I am weighing heavy to the side of IRA. I thought it wasn't even an option until the hernia diagnosis. So it's a lot to take in!

Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister

Hi, I can't speak to a long length of time other than the number of years I was sick before the colectomy. I'm only a year and a few months into my IRA. The connection itself had 4 months of healing time before being put into use. Have they talked about or done a couple of tests (you will know if you had them) that give an idea if your pelvic floor muscles will do what you need them to do?

When you say 10” of colon left including rectum… you're including rectum in that measurement? Do you know how many inches the rectum actually is?

For reference, I have 8” of rectum hooked up to the end of my small intestine… no abdominal colon left. So far, so good on that aspect of an IRA.

I have never been definitively diagnosed with UC or Crohn's.

Not sure how your health system works… are you able to request a second opinion?

No, I guess I don't really know how much of it is rectum. Something I will definitely ask again about.
I don't remember his exact words, but the surgeon basically said that my 10 inches is adequate for the surgery to be successful.

Hi RS,

Maybe I'm missing something here... you had Crohn's... but they removed your colon, even though Crohn's doesn't really extend into the colon? If that's not why they removed it... why did they? And they won't give you a J-pouch because you have Crohn's... but they'll reconnect your small bowel to what's left of your colon if you have Crohn's? Were they sober when they said that?

From your profile, I'm guessing they also removed some of your small bowel too. So other than the 10" of colon... how much small bowel do you still have, and what parts did they remove? Do you still have your terminal ileum and ileocecal valve? If not, you better plan on knowing where all the bathrooms are once you're reconnected.

Me thinks you might want to have a more detailed talk with your surgeon to find out what's actually left to be connected and specifically ask what your life is going to be like post-reconnection, with only 1/6 (about 17%) of your colon left in play. That's not going to be enough to absorb your bile or a lot of water to hydrate you... so get a second and third opinion too.

And sure, you can always revert back to being an ostomate, but each time they cut your intestine to do that they remove some bowel near the cut... so you lose bowel every time. And then there's the pain and recovery, as it'll be open surgery. You've got a lot to think about... just make sure your docs are telling it to you straight... and there's a consensus of opinions from more than one surgeon/gastro. Don't mean to be a party-pooper with all this, but you really want to go into this with your eyes wide open, if you know what I mean.

;O)

Thank you for your reply,

In fact, Crohn's disease can affect any part of your GI tract, and in my case, with my very first surgery, they removed the affected area (in 1983 when not as much was known), which was my terminal ileum and a small portion of my colon. Later, in 1994, after extreme abscess and not responding to treatments, they removed the rest of my colon, giving me the ileostomy. They told me at the time that they left enough colon attached to the rectum to support a reversal but was never advised up until now. I have not had any kind of Crohn's flare since my ileostomy surgery, and maybe this is why they are saying IRA is acceptable now. And throw in the parastomal hernia, and that's what they are suggesting for treatment.
As for hydration, with even a small amount of colon in use, it should improve my ability to absorb fluids compared to how I am functioning now with only my small bowel in play. Or is there something I'm misunderstanding from your comment?

Thank you, and yes, I can always go back to an ostomy. I think I would always wonder if I could have managed the hook-up if I don't try. I'm trying to live my life with no regrets. 💗 I have agreed to put my name on the waiting list, which they told me in my area can be anywhere from 6 to 12 months. I may change my mind before then, but I feel I have to try. 🙂

Right about CD affecting the entire digestive tract.

I was told UC becomes CD eventually, so to me it's I.B.D. It just gets too confusing having both symptoms of each.

Fudge it. Inflammatory bowel disease. Suck on that, doctor.

You can have symptoms of UC, yet have CD too! Vice versa.

Nasty illness.

They labeled me Crohn's colitis.

They covered their butts saying that, when 20 years later they took my butt.

@RiverS, I was reviewing your first post and had some interest in knowing a few things about you and your condition.

For example, the real reason that is motivating you to get the IRA, which you explained you hate the way you look.

And fix the hernia which brought you here as well.

You are aware hernia repairs fail.

A lot of us have hernias and as long as there is no pain, we aren't getting it fixed.

Re: your looks, or figure? Women are more critical on this subject than men are, but why not get a second opinion? Yeah, post a picture.

You will no doubt get an unbiased answer from males and females here.

I was told recently, a woman—a co-worker or stranger—complimenting another is the sincerest form of humanity.

Of course, men, well, complimenting other men rarely occurs.

I like your profile photo. It seems a bit animated, cartoonish, but you look stunning there.

This was the social aspect of my interest.

Medically, people here on the forum know their stuff. It's through trial and error and the desire to share what happens and happened next.

A wealth of good honest input.

But no two people are the same.

With a colon as yours being idle for 30 years, if you are and have been in good health, then I'd say you're in better shape than most of us. Likely a success story, well, better than me I mean.

But to say you have not had any flare-ups of Crohn's causes me pause. I am happy to know this, but

IBD can manifest itself as some very odd symptoms.

One I am going through is gout, arthritis, swelling of finger joints.

This all increased after my Ken butt surgery. Are these flares, too? Symptoms of IBD?

Some would think not. But I do. Yes, they are.

So explain, please, you are not experiencing any other health conditions that might even be remotely related to the IBD?

If you have no other conditions and a clean bill of health, that is very encouraging to opt for reversal.

I'm thinking this decision you make is your "change" for the better.

I definitely will not be posting pictures of what I am most vulnerable and self-conscious about, even here, among others with similar issues.

I try not to focus on my other ailments, those things I have no control over. I do have other health conditions that have occurred because of Crohn's disease, but I don't consider them flares by any means. From age 14 to 27, I was on high doses of prednisone because other treatments weren't working. This was the only drug that would. I've developed what they've called avascular necrosis or osteonecrosis, affecting my lower back and lower body joints. Three surgeries on my right ankle to fuse the ankle and subtalar joints. Arthritis (runs in my family), kidney stones out the yin-yang, surgery for gallstones, and blockages from adhesions. But currently, I have constant abdominal pain from the hernia and adhesions and rely on pain meds to get me through the days. This consideration of IRA is not only cosmetic. Far from it.

You babble a lot. Why anyone would tell another to post a picture of their health issue is beyond me. 🤷‍♂️ If someone wants to, by choice, that's on them to take the comments they'll get. But to try and pressure someone into posting their picture. 🙄

I will say a prayer for you! God bless you.

💗Thank you, JesB XO 🙏

💗Thank you, JesB XO 🙏

Hi Rivers. I had a colostomy reversal in January, along with repairing the huge hernia I had underneath my colostomy. I have a completely different medical scenario, so I can't really offer you any advice, but I absolutely understand why you want to try. I also did not want to spend life wondering "what if" - and if I had to go back to the bag, I was okay with it (luckily things have been good so far). Praying for you to have the best possible outcome in whatever choice you make!

Thank you, DexieB, for your comment 💗 I wish you continued success with your reversal 🙏

Thank you, AlexT 🙏

Hi Riv,

Sorry for my late reply. Spring is busy here on the farm. You're right about the Crohn's. I keep thinking back to when I was diagnosed, and back then Crohn's and UC were very different, with Crohn's only being from mouth to terminal ileum and UC only in the colon to the ass. As more and more people got jacked with IBS autoimmune issues, Crohn's was extended all the way to the ass. Both are essentially the same with only the level of mucosal inflammation being the determinant, so it's a bit of semantics.

My point was that with only 10" of colon, you're not going to get much absorption. Especially if it's the descending colon that attaches to your rectum. That part of your colon acts more like a trash compactor than a sponge, as most of the liquid entering the colon is absorbed higher up in the ascending and transverse sections. Your liver bile is also absorbed higher up, so that amount of liquid won't change either, and that can be as much as a liter per day all by itself.

The other fly in the ointment (that you should talk to your surgeon about) is that Crohn's has a high propensity to reinitiate at an anastomosis. They don't know why, but it does. Not saying that will happen, it's just something to consider, as is scar tissue forming at the anastomosis. Some people develop a lot of it, some enough to live with no further surgical intervention.

A final thing to consider is your anal sphincter is controlled by pressure on the colon wall. This can be from formed poop or liquid poop, so the feeling of urgency to go will be there in both cases. And watery stools are much more challenging for your muscles to hold in than firm ones. Over time, frequent watery stools can cause the muscles in your rectum and ass to weaken, and that's not good.

So I'm just suggesting you discuss all these factors with your surgeon(s) and get second opinions before proceeding. I'm always amazed at how surgeons trivialize the things that end up making our lives miserable, while touting the benefits of what they do best. I hope that helps clarify my previous comments. If not, just shout!

;O)

Thanks for your response, w30bob. Definitely a lot of angles to consider!