Any J Pouchers out there that had Anismus and Intussusception as a reason why they got one and can y

Hi, I really need shared experiences. Thankyou.


If you read my sig you see exactly what happened, where I'm at. Yesterday July 26th/2016, met surgeon. I am 7 mos out of 2 emergency surgeries for untwisting small bowel and adhesions during my hospital stay Nov 23-Dec 23/2016.

Those 2 surgeries were 9 mos out of a Feb., 2015 total colectomy due to redundant bowel, anismus, intussusception. I was 89 pounds. Typically 115. Back at my reg weight again. Back then at 89 pounds, can't get it out, can't put it in. Now I'm good nutrition wise.

Here's the deal with me. My surgeons valid concerns are, if we do a straight reversal, he thinks it won't work. We did that Nov 23/ 2015 when he originally went in to give me an ileostomy. Found twisted small bowel, adhesions, fixed it, attached me back up, I felt with gloved fingers, my rectum still folding, closing my passage. No go due to it all folding in on itself so Dec 15/2015 put in loop ileo. Which brings him to, he doesn't think straight reversal will work, even having had time to heal and strengthen.

My options, stay with loop, go to end ileo, or try J Pouch.

J Pouch risks. If taking my rectum out, using 2 feet of small intestine making Pouch, works, I'm good to go.

BUT

If taking my rectum which fixes the telescoping, BUT the pelvic floor dysfunction Anismus, tightens the area to prevent

evac, I'm in trouble. Then they have to go back in, do an end ileostomy, AND I'm left with potential short bowel syndrome.

Out of 4 patients my hospital has done with my condition, 2 turned out very well. 2 did not. I asked him.

The 2 that did not, are close to short bowel syndrome having no colon like myself, PLUS now, they've lost 2 ft of small intestine, due to J Pouch procedure and are back in an ileostomy with a shorter small intestine.

I have much thinking to do. I am a fitness girl. Love beaches. Water, boating and yes, vain in that aspect, bikini girl. Wanted to be back to "my normal". With ileostomy, yes, I can eat, work out, back to business.

Prior it got so bad I had to tape a garbage bag around my body laying on my couch with knees bent and feet on ground for 2 years to evac. It would only come out that way. So high dosing laxatives to empty in a bag on my couch. I was so so sick, couldn't eat to go through it daily. I finally wrote an impact letter to a to surgeon to help me. He fast tracked me through the system. NO one else believed I was so bad, 8 others before him, refused to give me function test, told me to take what I was already taking to evac. It was awful. I was treated like I had mental problems and just wouldn't eat. Complete medical abuse.

So, I have a top, plus humane surgeon now point being.

Is vanity a good reason to risk a 50% chance of regressing to a "worse" condition" if J Pouch doesn't work?

Of course not.

So, looking for those that have my conditions, that are in a J Pouch, and I would like to know, how are you doing?

I'm researching as much as I can.

My surgeon says, "take till mid Aug to make your decision" if you want end ileostomy from your current loop ileo, or try J Pouch knowing the risk." It weighs heavy on him, he expressed that he didn't want to see me health or business or activity wise go back to or possibly worse, than the way I was due to J Pouch not working and getting short bowel syndrome.

However, he understands, if I want to try. He's very "human".

He told me, most with anismus, and intussusception, get ileo for resolution.

So, from his top hospital for gastro in my country's perspective, I've a 50% chance for J Pouch to work, using 2 out of 4 patients that tried J pouch with my condition and had it work.

I ...........................he kind of left me thinking my options were easier resolution when I got my end ileo at our 1 month post op appointment 6 mos ago.

I guess they want you out of your head to heal. However I'm a realist, so walking into my reversal appointment 7 mos after ileo, and hearing it was actually this "iffy/risky", was................I wish I'd been told upfront at my 1 month out ileo post op. I'm just made that way.

I appreciate full facts pronto and then I internalize and process the information. I don't like things being withheld. Oh well.



Thankyou for coming by. VG

Hi Bye Bye,

Good to see you. Thanks for the kind words and direction.

I did post this today on Jpouch.org but no reply yet.

However, I was unaware of FB group. Going there now. Good call.

I don't use FB that often so have to be sure, if accepted, the jpouch group is kept private off my friend's list. I make a lot of mistakes on FB with applications. :( I have to be super careful. Not a tech person. (No one knows I'm in an ileo.)

Yes, my deal is rare so I suspect, it could be troublesome finding others to share their experiences.

Thanks so much for coming by. I hope things are good in your corner as well.

VG

I do not have experience with your particular situation, and I agree with Marinanne, there are probably better resources, but I know in the case of people reverting from a jpouch to an ileo, they lose the pouch, which is made of the TI. I had the same concerns. If you use a part of that to make the pouch, and you lose it, can you live a good life after that? Of course preserving the most possible is the best outcome. Since you've already had small bowel surgeries and you have had adhesions, I don't know whether it would be a smart idea to try for a pouch. It sounds like it could be debilitating if things didn't go as planned. With UC, we never had any work on our small intestine, so we have that in 100% condition. It is definitely risky, knowing you're prone to adhesions, and you already have less small intestine than "Normal". At the same time, I believe people have varying amounts to begin with. You have to take into consideration that short bowel is extremely debilitating. I personally would take the end ileo before risking short bowel. I do not know the odds you're facing, but if you read up on ESoR (Rosemary) here, she had short bowel and eventually she allowed herself to wither away because it was no way to live. My end ileo was really a slam dunk. Very easy, no issues, ate what i wanted, felt healthy...

notsosicklygirl said...
I do not have experience with your particular situation, and I agree with Marinanne, there are probably better resources, but I know in the case of people reverting from a jpouch to an ileo, they lose the pouch, which is made of the TI. I had the same concerns. If you use a part of that to make the pouch, and you lose it, can you live a good life after that? Of course preserving the most possible is the best outcome. Since you've already had small bowel surgeries and you have had adhesions, I don't know whether it would be a smart idea to try for a pouch. It sounds like it could be debilitating if things didn't go as planned. With UC, we never had any work on our small intestine, so we have that in 100% condition. It is definitely risky, knowing you're prone to adhesions, and you already have less small intestine than "Normal". At the same time, I believe people have varying amounts to begin with. You have to take into consideration that short bowel is extremely debilitating. I personally would take the end ileo before risking short bowel. I do not know the odds you're facing, but if you read up on ESoR (Rosemary) here, she had short bowel and eventually she allowed herself to wither away because it was no way to live. My end ileo was really a slam dunk. Very easy, no issues, ate what i wanted, felt healthy...

Hi Notsosicklygirl,

So good to see you too.

Yeah, I've grave concerns about this. It's not my small intestine that is the problem aspect as to his concern for the "not working" aspect though.

He is thinking the anismus and rectal dysfunction may prevent me from evacuating. That said, I hear you as well. You're saying no adhesions on your side etc., making small intestine 100% from this aspect. Got it.

Oh, funny you said I have less small bowel than normal.

I wrote my surgeon asking if I do in fact have less small intestine now.

I worded it asking "did you just take adhesions off small bowel without altering length of small intestine OR, if you rid adhesions do you have to cut them out in a way the procedure shortens the length of small intestine?"

I wasn't clear on this. Do you know if a small intestine gets shorter from adhesion removal?

Oh geeze, okay I'll read about Rosemary too.

Okay just read about Rosemary so I'm editing this in. I read, she had 16ft of small, after surgery her surgeon said he took out 3ft so she is stumped why she actually only had 5ft left from original 16 ft. Then I read she was trying TPN which I had to look up.Then very tragically passed. This is an extremely sad sad story. :(

So she had very little small. I have about 20 I think, but I'll confirm this in a few days.Maybe I do have less from adhesion removal.

I also asked my surgeon if some J Pouchers have a bit of their lg colon left too as a result of different situation to begin with. Plus all their small intestine. Do you know the answer to this question?

Short bowel syndrome is serious. :(

I sincerely appreciate your input.

You're both incredibly helpful.

Thankyou. VG

Hi Notsosicklygirl,

Yeah, I'm interested to know the answers to those questions too.
It may take him a week, but as soon as I hear back, I'll post his answers.

I hear what you're saying about J Pouch and UC.

I think for cancer patients, the chemo can kill some nerves and/or it depends on which area the cancer hits as to if they need a J Pouch?

Here's an excerpt from a cancer patient. Seems she had 12" of sigmoid removed, so is left with small intestine and the rest of her colon. How bout that.

I know plenty of people have good outcomes with J Pouches. But I could only quickly find this excerpt to show someone who had colon cancer, still has a lot of large bowel left, small intestine, and needed a J Pouch, so picked this one.

Excerpt:

http://newccboard.colonclub.com/viewtopic.php?t=44533

I have no rectum and lost my sigmoid colon, 12 inches. I have had very limited success with my pouch and my quality of life has been dramatically changed. I do believe location of the pouch has had the most impact on my situation. My only option is for an external colostomy...and that's a long story as to why I still have not opted to get one.

ME: So again, this is a cancer patient excerpt. She had a neg J Pouch experience but I am fully aware many people have positive J Pouch outcomes like yourself and ByeBye. I just wanted to illustrate, it's looking like cance patients may sometimes be recipients of J Pouches too.

I've read a bit on chemo killing nerves putting them in permanent ostomies. I guess chemo can be a factor in being a J Pouch recipient as well as where the cancer hits? Maybe chemo affects the area parallel to my trouble area where it's dysfunctional from nerve damage.

Anyway, so many hypotheticals. I'll definitely post back with my surgeons answers to those above questions. Give me a week.

All bee Bock LOL

Thanks for your help. :)

VG

Hi Bye Bye yes I found it. I joined the wrong one but was accepted.

I'll try J Pouch now and see if I can get accepted there as well.

I understand. I don't feel comfortable either posting public info.

Well, you'll see my exact same story on the J Pouch board as this one in
this thread in the next 24 hours if they accept my friend request.

Then you'll know it's me.

Thankyou so much.

I really appreciate your help as well.

VG

Dr. Karimuddin, right? The man knows his stuff. I don't have any experience on your specific list but I had UC which led to a 3 step J-pouch built by Dr.Karimuddin.

Ask your self are there any specific health reasons other then the fact you do indeed have a bag and all the emotional and visual things that go along with such a thing that you'd risk your life for? If you are fairly comfortable currently with your ileo-life you really have to wonder.

I'm planning on going back to the Ileo, and looking back I think I really wish I'd of given it more time, here I am, in my 20's.. instead of just one surgery I will more than likely end up being under the knife a 4th time.

Oh, also one other thing, you've never had an End Ileo I assume looking at your surgeries. Well, if that's the case let me tell you, the End Ileo is so much easier and just over all better to live with versus the Loop Ileo that it's not even a fair comparison.

Post Edited (Virdent) : 7/30/2016 11:01:34 PM (GMT-6)

I had colonic inertia and anismus. Tried botox injections, 2 spincterectomies, and biofeedback therapy. Nothing helped. I had a total colectomy with end ileostomy. I still struggle to expel rectal mucous.

Have you tried botox injections and biofeedback?

My surgeon said I was not a Candidate for a j pouch. He said I would continue to struggle with anismus. My small intestine is normal transit, though I do have gastroparesis.

I don't know of anyone with anismus that has had a j pouch. Everyone that I have ever spoke with that has ever has anismus who has ever had success with biofeedback therapy has always eventually reverted back to impossible bowel movements.

So, I don't know the answer. If there was ever a cure for anismus, I would have a reversal in a heartbeat though as I struggle with repeated parastomal hernias.