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Okay, so I have to vent first, and then I have a question towards the end of my post (but I won't blame you guys if you skim to my question .

Anyway, I had a 6 month consecutive stay in the hospital in 2019, whereby I underwent 9 surgeries and was on TPN for a year (six months in the hospital and six months at home). Basically, I had gone to the ER in excruciating pain in Jan of '19, for what thought might be a few night stay, yet didn't get released until June of that same year (ugh).  It turned out that I had developed a a volvulus, or twisted small intestine (or whatever I have left of it), and after the initial surgery to repair it, everything that could go wrong, went wrong, hence, the 9 'corrective' surgeries. And ever since I was released, my pouch has been more active than EVER (I had my initial JPouch surgery almost 25 years ago at age 27, and while the pouch drove me a little crazy sometimes, somehow I was able to deal with it and it didn't seem as life-altering as it is now).

Within minutes of eating anything, I feel the urge to go. It wakes me up at least 5x per night, and even when I seem to empty (the pouch), I'll get back into bed, all snuggled up and warm, and then I have the sensation to go - AGAIN!!! (and that can happen several times EACH time I wake up, arghhh!!!!). So while I was probably going to the restroom 20-30x/day from my original surgery, for the past year, it's been more like 40-50x/day - even if only a little discharge or air/gas comes out. IT IS DRIVING ME ABSOLUTELY INSANE, and, of course, friends and family can't possibly understand what it's truly like, even when they sincerely try. Lately, practically everyday that I wake up, my first thought is "Ugh, another day of HAVING to eat."  And how sad is it that eating (besides sex and sleep) is one of universal pleasures (seriously, who doesn't like to eat?) that's RUINED because of this disease and surgery, and it makes me cry, every single day. As a kid, I was always a 'good eater,' yet always remained thin/normal, as I was very active/athletic, but now, not only do I not derive any pleasure (or, very little at this point), I don't know how I can live another 30 years like this. I'm considering going back to an ileostomy (I had to have a temporary one for about 3 years, when my gut needed a major break, as I had developed an extremely painful fistula in 2000), but as most of you here know, the ileostomy just brings on a host of so many other problems (the skin breaking down was just ONE issue among many that drove me crazy on a constant basis). Plus, I'm divorced and 50 years old, so the thought of having to date with an ileostomy at this point in my life is truly depressing.

Sorry, I have one more thing to vent about, lol: : does anyone here have family members and friends who question your diet constantly, even though the reason we have to go so many times/day is due perhaps 95% because of the sheer VOLUME of food vs what we actually eat?!? In other words, while some foods may be more irritating than others for us, in various way, it's not WHAT we eat that make us have to go to the bathroom so much - it's simply because we eat!!! I swear, I feel like I'm going to strangle the next person who says to me: "Maybe you should see a nutritionist." Don't they realize that we practically all have PhDs in nutrition, at least in our own bodies, in terms of how certain foods might affect us negatively? (eg, I can't eat spicy foods because it badly irritates my skin on the way out). But that doesn't solve the issue of FREQUENCY of bathroom visits!!!

Ok, so here's my question (but thank you for reading thus far!) and it's mainly for those who have PERMANENT ileastomies, though I'm not sure how many here would have one (???): I'm wondering if when they remove ALL of the tissue, whether that resolves any 'urgency to go' issues (because even with the temporary ileostomy, I'd often have the sensation to go the 'old-fashioned' way and would often have to wear maxi pads for leakage at night). So I'm thinking that maybe a permanent ileostomy resolves that issue, in and of itself, by getting rid of all of the tissues and muscles down by the anus? Because at this point, I'm not sure that I have a choice anymore, as I feel like I'm prisoner of my home and bathroom Thanks in advance for any input, or even if just to commiserate with me...

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Wow Kath, so much to digest here! No pun intended.

At first I thought perhaps you were starting from square one following your surgery for volvulus and all the aftermath of that. However, it would appear you are about a year out from that mess, so things should be beginning to settle in, not maintaining this level of intolerable dysfunction. But, it definitely can take longer to adapt.

Eating is supposed to stimulate peristalsis, which is great in an intact GI system. Once the colon is removed, the body adjusts in time by slowing and absorbing water better from the small intestine. I am probably telling you something you have probably already explored with your doctors, but this sounds a lot like short bowel syndrome.

If you have tried all the options for slowing the gut to get better function, then it does make sense to look at end ileostomy, or perhaps a continent ileostomy (Koch pouch or BCIR). There is the possibility to salvage a healthy j-pouch to use for a continent pouch. An attractive option if you do not want to lose any more small bowel and have worries about issues with ostomy bags.

There are quite a number of members here who have converted to an end ileostomy successfully and also a continent ileostomy. Take a look at the K-pouch Forum and Ostomy Forum while you wait for more replies.

You have been through a lot so I think you know what your best path is. I can only empathize because I only had a short stint on TPN and never had complications as serious as yours. I actually enjoy food too much and battle obesity, but there are others here who have had similar problems as you.

Best wishes on your journey!


Last edited by Jan Dollar

I had my jpouch removed 3 yrs ago, after 25 yrs with a jpouch.  First I had a jpouch disconnection done (the final straw was a septic abscess) and an end ileostomy made.  During the next yr while the abscess healed, I still had lots of discharge from my bottom.  Apparently, this is normal, as what's still there - the jpouch - continues to produce mucous which needs to come out.  I did not always know when the discharge would happen, so I wore pads all the time.

I finally had my jpouch removed along with everything else a yr. later.  I had a "Barbie Butt" done, so everything is closed down there, although my surgeon closed me from the inside and left a small opening for drainage.  (I still don't fully understand this as opposed to a completely closed butt.)  There is absolutely no more urge to "go".   If permanent ileostomy becomes your decision, I'd advise discussing butt closure (wish I knew the technical term for this!) during your presurgical visits.  Butt closure of course, removes all options in the future as far as redos, etc.

My stoma is longer - so very important - that helps to avoid a lot of the skin issues that came with the temporary ileostomy 25 yrs ago.  I never was a big eater, but now I can eat spicy foods and anything else again without worrying about the butt burn!  Food seems to move through me pretty fast, but I have nothing to compare my transit time with.  At this point, it all seems "normal" to me.

Have you talked to your surgeon about removal, redo, etc.?  I'm really sorry you're going through such difficult times, it sounds like a dreadful ordeal.  I'd be happy to answer any other questions.  Best wishes.

Jan - thank you so much for your input. You described so well some procedures that I was only vaguely familiar with. I think it's safe to say that I do, in fact, have small bowel syndrome, but I'm not too familiar with the Koch pouch or BCIR. I will definitely look into these things that you suggested with my GI/colorectal surgeon.

Good luck to you too, on your continued journey and, with your own diet, if you want to drop a few pounds!! (THINK: portion control - it's the key to everything ).

Dear N/A, I sent this privately, but I just wanted to post my response (to your response) here too:

Thank you for your detailed response to my question. My surgeon tends to avoid even the discussion of what a permanent ileostomy would be like - and having the 'Barbie Butt' (LOL at your not knowing the scientific term - that happens to me all of the time too!). But your post made perfect sense and I'm going to print our a copy of your response (and the others) to my original post to discuss with my colorectal surgeon (I think that he, like many surgeons, see 'success,' if everything is working, regardless of how difficult it makes our daily lives). He's a wonderful man and surgeon, but that's something that's always annoyed me - that he doesn't truly internalize how poor our quality of life may be, even if technically the surgery was a "success." I truly believe it's a common attribute among surgeons.

Again, thank you for sharing your experience, and additional thoughts for the predicament that I'm in. Best of luck to you, too, going forward

I am sorry you are going through this! This is what I would do if I were you: I would talk to another gastro or surgeon (second opinions) about my issues and see if there is anything they can do, if they say there is not anything out there to try, I would get an ileostomy or the K-pouch at this point.

Hope things get better for you Keep us updated

Last edited by Lauren Of Emerald City

Hi Katt,

I am so, so sorry...this is a nightmare inside of a nightmare.

Without going into too many details, I have a K pouch, the ancestor of the J pouch and the big cousin of the is a continent ileal pouch. I have a tiny stoma that is flush with the skinm very low on the abdomen...I cover it with either an oversized bandaid or a folded kleenex.

I use a catheter to intubate and empty my pouch anywhere from 4-8xs/day...most often in under 3 minutes. The process in 100% painless.

My disease did not allow for the j pouch option even if it had existed at the time (1979) and I have never regretted it.

An ileal pouch is an option when your j pouch is no longer working with your exit and making your life can be emptied at will, you sleep through the night and unless you have a big problem, you can hold it for hours and never leak.

Yes, as I aged I had complications but those have been managed. The only major problem is that there are fewer BCIR and K pouch surgeons around today than 10yrs may have difficulty finding one near where you live.

You can PM me if you want some info...

In the meantime, do not forget to nourish yourself even if you are afraid to need to keep your strength up to are still in the healing process after all of the trauma and surgery that you have been through. Your body needs proteins. Give it time and see if you can retrain it never know.

Some foods stimulate your system more than others while others will help to slow things down...carbs & starches like rice can help a bit...also bowel slowers can help too.

Take care and do not give up


Last edited by skn69

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