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Hello all!

I’ve been going through a rough patch mentally in regards to my pouch, and wanted to know how everyone else manages to cope. I had my pouch surgery two years ago after many failed medications and was kind of pressured into it since I was really underweight and honestly just very sick. But the reality of this surgery hadn’t set in until a few months back. Does anyone get overwhelmed knowing you can never go back to your old body? That if the pouch fails that a permanent osteomy is the only thing left? That it can have such a grand variety of troubles? Some nights my mind just won’t stop jumping to the worst possible outcome and every slight change my pouch has sends me into an anxiety frenzy.

For example, last night, I had to use the bathroom during my sleep, which never happens. Needless to say I woke up today and have been crazy anxious. Or when my pouch is slower than usual I’m on edge about it all day. And I know that pouches have their good days and bad days but it’s still scary. Crazy to think I had even worse variability and GI issues with a Colon and wasn’t half as worried or anxious as I am now!

So how does everyone else cope with accepting this life altering surgery? I’m happy with my pouch and grateful it has given me a normal life for the past two years, but I fell as if I’m constantly wondering how long it’ll last… Anyone feel this way?

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I have never felt completely comfortable with the pouch.  Part of my anxiety though has to do with the PTSD that follows surgery.  I got the major hack job type of colectomy in 2004, not the laproscopic type of surgery which seems less horrific and violent, but I don't really know.  Either way, the body remembers what happened even if the conscious mind was knocked out.  For me, there are muscles all around that area that are on guard at all hours.  That is an anxiety/post-trauma response.  I'm working on that through yoga. The sympathetic nervous system is difficult to override! 

@Sara Marie,

I’m really sorry to hear you went through that. I’m also a firm believer that even though we’re unconscious our brain never forgets it. I had a laparoscopic surgery and it was quite uncomfortable, I can’t even imagine a fully open abdominal surgery.  No one really understands what it’s like to be on that table or in that hospital bed until it happens to them. I had a traumatic experience during surgery too, I was awake the three times they took the intubation tube out of me. Why they’d wait till I was fully conscious, I have no idea!

I never even thought about how much trauma that might have caused me subconsciously. I hope you heal and I’ll take up your advice on yoga. Glad to know I’m not the only one 100% comfortable with the surgery. I wonder if anyone actually is!

wish you the best!

I like your quote about the fruit and the tree. I should take back what I said about the sympathetic nervous system being difficult to override.  It can be done pretty easily, but if it's in the habit of being vigilant, it's difficult to keep it from doing what it always does as soon as you stop attending to it.  Breathing, meditating, using visualizations, self-talk, journeying, all that stuff can be really effective too!  It's any of that stuff that gets us out of the problematic (primarily western) way of thinking that our bodies are just tools to carry around our heads!

It's good to acknowledge the trauma with one who has had a similar experience!  I wonder if any part of the trauma is affected by the care and respect (or lack thereof) shown to a person when they're in that vulnerable state? Part of the trauma experience is a lack of being able to escape a situation deemed unsafe, so...if those who are handling our bodies/surgeries make sure to keep us feeling as safe as possible, could that produce better results?  I dunno!

Best to you, too!

Last edited by Sara Marie

Hello Valen,

I had my BIG surgery in 2000. I was just shy of 40 yrs old. I have suffered with pouchitis and leakage at night. I also worry, sometimes, about the future. What will it be like when I’m much older. Will I be able to control my urge to go. Will my pouch fail.

I’m in a good place right now. Fingers crossed. I eat Metamucil wafers daily and take VSL #3. I like what Chook2 said. I’m not going to think about the future. I’m going to live right now. Today.

Take care. Enjoy your good health right now.

The pouches have a high survival rate -this is medical terminology, does not mean "survival", it means "no-back-to-ostomy" in this context-, as studies show over 90 percent survival rate in 25 years. How old will you be in 25 years?

Newer j-pouches have a higher success rate than that, because the surgeons now have decades long experience on this surgery. This means mechanical failure is less common among new pouches, and also you can get a redo surgery in case of mechanical failure.

Putting on weight apparently cause anatomical changes, thus mechanical issues, so you need to be careful about that.

In the case of chronic pouchitis, or chrons of the pouch; as my nurse said,  medicine will be more advanced than it is now in 10-20 years! There will many many more biologics/antibiotics available, and Drs will know a lot more about how they work.

You need to take care of yourself very well, a diet that is good both for your pouch and the rest of the body, not being sedentary, and keeping stress/anxiety away is very important for your pouch. The same applies for all health problems. That is the best you can do.

Also, I sometimes think, if I get an ostomy at the a age of 75, and still have a good life, that would not be the end of the world. I would have on average on 10 years left to live, and those are the most unhealthy years of life for everyone, so things would not be that different than the others. If you are a fit, healthy 75 year old with and ostomy, you will be doing much better than the rest of the population.  Just focus on keeping your entire body healthy, not the j-pouch alone.

Last edited by Elif

@Elif

Thanks so much for that info, it was actually really helpful. As a medical student at the moment I'm kind of embarrassed that I haven't even researched my own surgery! Maybe one day I'll be brave enough.

In 25 years I'll be 43! I guess thats a great way to look at it too. 43 is young but like you said, medicine will advance so much by then, maybe they'll be able to grow my colon back (kidding! maybe?)

I keep a relatively good diet I think, but I wouldn't say I'm perfect at it, which was hard to accept at first. I couldn't have 'good' food for almost two years and it sucked, so if I'm craving it I'll let myself indulge sometimes, only because it'll make me happy. I found that exercise is really great on the pouch too. Wish you the best!  

There are major J-pouch researchers in this area that I recommend that you follow their publications, as a medical student. You could just specialize in this area, and become your own GI!!!

You probably would be the only GI specialized in j-pouches with a j-pouch, so you would be a star!

https://pubmed.ncbi.nlm.nih.gov/12131084/

https://pubmed.ncbi.nlm.nih.gov/23299522/

https://pubmed.ncbi.nlm.nih.gov/34825957/

https://pubmed.ncbi.nlm.nih.gov/31496616/

The fact that there are not many papers for j-pouch survival rate after 25 years is not because they fail, it is because the procedure is not very old, and large data sets for this analysis does not exist.

In 10 years, there will be many publications on survival rate of j-pouches at 35 years, because data for this analysis is being collected now and in the upcoming 10 years.

In 20 years, there will be many publications on survival rate of j-pouches at 45 years, because data for that analysis is being collected now and in the upcoming 20 years.

@Elif

Just read a few articles, really interesting and somewhat reliving. As much as I love this page, sometimes all the information on here can be overwhelming, so seeing real medical reports are great. Actually, I think I might stay far from GI as a specialty (enough of that for one lifetime!!) but it would be funny to be a GI with a jpouch. I really owe you a lot of thanks for these

@Valen posted:

@Elif

Just read a few articles, really interesting and somewhat reliving. As much as I love this page, sometimes all the information on here can be overwhelming, so seeing real medical reports are great. Actually, I think I might stay far from GI as a specialty (enough of that for one lifetime!!) but it would be funny to be a GI with a jpouch. I really owe you a lot of thanks for these

You could also become a colorectal surgeon specialized in j-pouch surgery! That would be equally funny! In either case, you would be a famous Dr in your field, and that is always an advantage when it comes to finding jobs, and career progression.

Last edited by Elif
@Elif posted:

The fact that there are not many papers for j-pouch survival rate after 25 years is not because they fail, it is because the procedure is not very old, and large data sets for this analysis does not exist.

In 10 years, there will be many publications on survival rate of j-pouches at 35 years, because data for this analysis is being collected now and in the upcoming 10 years.

In 20 years, there will be many publications on survival rate of j-pouches at 45 years, because data for that analysis is being collected now and in the upcoming 20 years.

EXACTLY!

i have had mine for 17 years,  it’s been a nightmare for 17 years too ! fistula’s , blockages, bleeding, leaking. So much bile leaking that my butt hole is raw 24/7 . It’s horrible . I pray, give thanks cuz i know I would be dead without all these surgeries and I workout like a mad women lol its my anxiety relief method and has been my entire life . We are pretty amazing people! The battles we face daily are something to be proud of.  

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