Rectal prolapse surgery?

Hey Megals, sounds like our stories are kinda similar, although mine was due primarily to my pouch twisting but I did have prolapse too. I had my pouch tacked down to my tailbone, twice. The first time my surgeon used a temporary mesh and a bikini line incision. The idea was that I would grow scar tissue to hold my pouch in place since my problem was due to lack of scar tissue. Fast forward three years and it happened again because I didn't grow scar tissue. I had to have emergency open surgery to untwist and temporarily suture my pouch down and let it heal since it ballooned to the size of a football. Six weeks later I had another open surgery to temporarily tack it down. Both surgeries were through a midline incision from about two inches above my belly button all the way down to my bikini line incision. I will be honest and say that the recovery was a little more difficult because the incisions required my whole abdomen. The first surgery was more difficult but I think that's because of the situation and it being an emergency. The second wasn't too bad. You will be fine :-) My last surgery was almost three months ago and I'm now doing well :-)

Hi Megals,
I am sorry to hear that you will be having a rectal prolapse surgery but it sounds like a promising surgery for your situation. I don't know anything about prolapses but I am having difficulty with my j pouch as well including 2 hospitalizations in the past 4 months with partial bowel obstructions. If you don't mind, what were your symptoms with the rectal prolapse? And how was it discovered and diagnosed? Thanks.

Hi Savannah! I'm so sorry to hear about all the issues you're having :/ I went from going around 6-8 times per day to struggling to go once. I had a CT scan and scope and both were normal. My surgeon then ordered a test called a defogram and that's what showed the prolapses. They were able to see the problem right away with that test. I hope you're feeling better soon!

Thank you for summarizing your symptoms, Megals! You have been through so much and you are so young! I sincerely hope your next surgery and recovery will go smoothly. I had a chance to read some of your previous posts so now I am better informed about your experiences, the defogram test, and rectal and intestinal prolapses in general. I have had some similar kinds of symptoms, I think, although my "obstructions" feel like they are largely due to trapped gas blocking the passage of stool whereby fermentation occurs and a continuing build up of bad flora causes more gas. Does this sound like your experience or did your "not being able to go" feel differently? Excessive trapped gas is my primary symptom and once I expel the wind, which seems everlasting, I can go OK but I am afraid to venture from a liquid/soft food diet as I know that resuming to eat will trigger another episode of the trapped gas-bloating-distention-misery scenario. It's like not eating much of anything is my only way to feel OK. Anyway, it is good to understand that a CT scan and the scope did not Dx your prolapses. I will be prepared for that kind of situation as I head into my scope tomorrow. Not that I would ever want to have the defogram test as it sounds so embarrassing, but it is reassuring to hear that you and others have survived this test and it can detect problems otherwise missed. Take good care, Megals. I am sending hugs and best wishes for your upcoming surgery!

The way prolapse commonly works is that everything looks fine until you bear down or strain. This pushes the unstable structure (in this case the pouch) instead of the contents. A pouch mashed into the anal canal won't let much of anything through. I suspect that liquid may be more likely to drain with gravity (or at least less straining) than gas, which could make it seem like gas is the cause, rather than it simply getting stuck behind a prolapsed pouch.

Hi Scott,
I am afraid that I may have a prolapse issue as you described. Your explanation was helpful as it does feel like "something" is blocking me from emptying my pouch. Upon eating much of anything at all, I get terribly bloated, and distended and when I gently press down with my hands over my distended abdomen, while bearing down, it's like I am repositioning my insides and gas and stool are usually released. After my CT scan with contrast the radiologist said he saw inflammation in the pouch but the anus was dilated. This seemed a little unclear to me at the time so I didn't ask for further explanation. Does that mean no strictures or narrowing? Or can you have a narrow opening that is still dilated? Anyway, tomorrow I see my GI doc and will have a scope of the pouch so perhaps there will be more answers; but then again, perhaps not as according to Megals (and your post)a prolapse or prolapses may not be visible without the more embarrassing tests that involve bearing down and emptying with observation. Anyway. I am pretty scared right now. I am glad I am also scheduled for a consult at Mayo next week. If you have further thoughts or possible reassurance, it would be appreciated. Thank you, Scott.

Me again, Scott. Like I was wondering can a minor twist, kink or fold be something that my doc could manipulate back in place during the scope procedure? Thanks. If so, I could maybe give him a heads up.

I can answer that. Most likely, no. This is not like unbunching your panties, where you just undo the kink. That is what happens when you have the occasional partial obstruction that rights itself.

With prolapse, it is a structural defect that occurs over time due to ongoing weakness, pressure and/or narrowing. Like an over-stretched pouch or weak pelvic floor, it cannot be manipulated back in place.

If it is due to adhesions or stricture, the hope is that the tissues return to normal position after the the cause is dealt with. But, if it has gone on too long, only surgical repair can restore the proper shape and alignment.

Most likely, these things are mot visible on scope, because they inflate your pouch with air for visibility, taking away the effect of gravity and internal pressure. That is except for a stricture. That could be seen.

Jan

Thanks Jan. Not a reassuring response but I am always more relaxed if I feel like I understand what is happening, even if it is difficult to hear. Is there anything I can do to alert my GI in terms of what he might pay extra attention to during the scope, or, should I just let him be the professional that he is? I like and trust him although I will trust the consult and additional testing as needed at Mayo even more. I must say, if it comes to it, the defogram (is that what it is called?) sounds pretty awful. I would be glad to have it in Rochester rather then Minneapolis-the physical distance from it all would be appreciated.

Hi Savannah! I know the defogram was, no pun intended, a crappy test and uncomfortable...but I'd do it again in a heartbeat knowing it helped lead to a diagnosis. Until that test I felt like I was just crazy with all these tests coming up negative. My surgeon is going to suture my rectum to the tissue surrounding my sacrum and small intestine to my abdominal wall (at least that is his plan pre-surgery) good luck with everything you're going through!!

Savannah, while you should not try to self diagnose or tell your doc how to do his job, it is OK to tell him that you are worried about prolapse, pouch collapse or twisting, or whatever lingo you are comfortable with. He can then tell you what he will or will not be able to determine during your scope. The main thing is for you to be very clear and concise regarding your symptoms. Be able to describe your pain, such as if it is constant or in waves, is it sharp or a dull ache. How about bloating? What helps or makes things worse. That sort of thing. These details help him sleuth it out. If you just say, "I'm miserable and want to feel better," there is not much to work with there. I am not saying you have been vague, but that is the main way you can help.

Jan

Jan and Megals,
You have both been so kind and helpful. I will take everything you have said under consideration. Then, it is just a matter of marching forward. My mom was a kind person but could also be tough about challenges and falling flat on your face. She would say: "stand up straight, brush off your skirt, (her era), and act like a woman." I think it comes from the WAVES or something although she was not in the military. Surprisingly, it always made me chuckle as I was a hippie and she sounded like a drill sergeant. Anyway, it's time to do just that and soldier on. Thanks for your advice and support.

That's funny Savannah! I took one of those personality tests (Meyers Briggs I think) a decade or so back and my results were consistent with a field marshal. I thought, "What, me? I don't think so..." My kids and husband all laughed and said it was spot on. Gee, and I thought I was pretty easy going...

Hopefully over the years I have learned to relax a bit!

Jan

As Jan says, the more clearly you describe what's happening, the more effectively your doc can figure out what's going on. I've found that docs seem more comfortable with "could it be X?" than "I think it's X." In any case, prolapse certainly isn't the only possible cause of straining without results; for example, folks here have described sphincters that won't relax when they're supposed to.

I can't see how an opening could be both dilated and narrow, to answer an earlier question.

Good luck!

My daughter just had a pouch pexy on Friday. Her prolapse didnt show up on any of the tests that were done at another famous hospital because the ones they did were when lying down. But we KNEW what was happening. She could feel it and I saw it. Went to CC and it was immediately confirmed by the surgeon simply looking while she was on the toilet bearing down. NOVEL high tech test!! More accurate than a sophisticated MRI! And FREE compared to thousands for the MRI.

Anyway, it was done open with a midline incision and it took three good stitches to the sacrum to hopefully fix the problem. She forms NO adhesions as confirmed by two different colorectal surgeons during different operations. She has had 8 abdominal surgeries and has none. That is likely the reason her stomas always retract as well. She has had 5 now.

She is doing remarkably well (hoping to be discharged wednesday) and we hope in three months after takedown it works! She couldnt empty her pouch and it was very painful for her to try. She would have bleeding as well.

Hi Kelsie,
What were your daughters symptoms that you could see and the docs could see as they observed her? I understand she was having difficulty and pain trying to empty her pouch and this was not dx'd with scopes, etc. when she was lying down. Thanks.

It sounds like they saw the pouch prolapse and emerge through the anus (inside out).

Yes, I held a mirror so I could see the anus and it was very obvious when she pushed I could see the tissue from the pouch start to come through the opening. Dr. Shen does see it during a scope by either having the patient push or he applies suction. If there is a prolapse the pouch will protrude into the anal canal. The first time he did a scope he dx her with prolapse but at that time it wasnt very severe.

My daughters got so bad that she sometimes had to manually push it back in. That was more than she was willing to put up with not to mention it was painful so she had a temporary ileostomy until she could get in for surgery.