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ChristineinDenver

ChristineinDenver

Joined
Oct 27, 2012
Messages
38
Looking for a spot to chat about my "semi colon," which is my affectionate term for my J-Pouch. I had the colectomy on May 1, 2012, and the ileostomy take-down on June 12. I wish I could say it was all happily ever after (as I was promised!!) but it's not. Not to be too dramatic, but you've all heard of "leaky gut syndrome?" Well I have "leaky butt syndrome," and it just doesnt appear to be getting better.

I'm now six months out and am still going 20+ times a day. Is this really better than active colitis? I mean it is in many ways, no anemia, no immunosuppresants, but not seeing the end of the rainbow here. I am trying to remain positive, going to see a new gastroenterologist next week. Now Im on Cholestryramine for the diarrhea and its not taking care of it.

So I thought Id reach out and maybe there are others out there that have had the procedure and dealt with some of this too!
 
Sorry to hear you are having such problems! Of course this is not how things are supposed to work. Why are you seeing a new GI doctor instead of the surgeon who worked on you? I had the jpouch way back in 1987, but it failed so I had a permanent ileostomy made around 1991. My jpouch suffered from chronic pouchitis, I developed abscesses and had other problems. The most likely reason my jpouch failed was due to my illness. I had my entire colon and retum removed, but at that time they left a little stump from the rectum in order to connect the jpouch. It's possible that my illness had remained in that stump somewhere and was causing the problems. Now that I've been diagnosed with Crohn's this year, seems more likely the illness caused the problems with the jpouch. I believe they do that surgery differently now, so I'm not as familiar with what can go wrong. Your surgeon would be the expert on that stuff. Hope it works out soon!
 
Amy had a proctolectomy so she cant help with the Jpouch.

I sure hope they find out what is causing the issue for you! And I am hoping it is something simple.
 
I met with the new gastroenterologist yesterday, and he believes that it isnt the JPouch, but rather that my pelvic floor muscles seem to be shot. I do have four daughters, all of them were large babies (10.3 lbs for the youngest), and i birthed them all vaginally. This doctor is doing another endoscopy tomorrow morning (for which I have to do a bit of prep) and he is also sending me to have measurement of my sphincter muscle strength (anal nanometry). While I think this makes the most sense given all my symptoms I am sitting here ready to burst into tears because I am so much farther away from being whole again than I thought.

Has anyone else had this type of testing done? It sounds like if the "physical therapy" part of this doesnt work I am likely in for more surgery.

Again, not having my best day.
 
2thFairy said:
I thought I read she had a J-pouch at one point, though.
Click to expand...

Not that I recall. She has crohn's not UC. But I may have forgotten if she had a J pouch. I'm trying to think who all has one at this point and scratching me wee head!
 
I'm sorry to hear that.

I was suggested to do kegels as much as possible while I'm not using my colon. I have my reversal in January but a friend of mine who had a J-Pouch said he didn't listen and do the kegels and he regretted it because he did have a hard time with frequency and urgency for a while after his takedown.

For you I would imagine the problem would be multiplied having so many large weighted vaginal births.

Kegels are kinda like trying to hold in your poo and then releasing. They say to hold it for a couple seconds and then relax. I don't know if this helps you at all but it is supposed to help strengthen the anal spincter and pelvic floor muscles.
 
I can see where he's coming from with testing your pelvic floor muscles. However, that doesnt explain the big D.

I had a surgeon check my muscle when I was asking for a reversal. I passed!

With all the best muscle in the world, it wont help with the big D on a bad day though?! Have they tested your stool? Any other tests being done? I think the GI should have something to help I would hope in the way of ideas?
 
Well the funny thing is (if any of this is funny) is that I have been doing them since the surgery six months ago...or at least thinking I was doing them. I may never have had good strength there but until my dx of colitis I suffered through the first 42 years of life with constipation ~ so I would never have known it was an issue. Just having a really really hard day and imagine the lack of sleep is contributing as I am waking about once an hour to go at night.
 
Terriernut said:
Not that I recall. She has crohn's not UC. But I may have forgotten if she had a J pouch. I'm trying to think who all has one at this point and scratching me wee head!
Click to expand...

Okay... I found the thread; it's 2 years old. She says she had a J-pouch for seven years before it failed and she was diagnosed with Crohn's.
 
Hi Terriernut, they will test my stool again tomorrow during the endoscopy and recheck all of the connections. There is one medication that they havent used yet, and will do so, but first want to check out the strength issue to make sure that's it. The medicine is called octreotide and they tell me it will pull the liquid from my small intestine to firm it up. Has anyone used it before?
 
The pelvic muscles are important so you don't have leaks, but I agree that the diarrhea won't be affected by that. Hmm.... I'd like to know more about this as it unfolds. So sorry you are stressed even more now!
 
Im just having a bad day. Im sure everyone here can understand. Well meaning friends and family ask all the time how I am and I am so sick of saying that Im getting better when I dont think I am. And Im tired and I feel like I need a break, not more testing. But I know its the right thing and that it might actually work. I just want to see the light at the end of the tunnel and the tunnel just got so much longer.
 
Christine, the lack sleep is a killer. I am hoping they will get you sorted asap. From suffering with the big D most of my adult life, I am quite familiar with what you are going through. It just wears you down so much!

Hang in there, lets hope they figure it out for you! :rosette2:

Toothy...you're a gem to have found that. Hoping I can remember who all else has a J pouch, or had one. I'm mentalpausal ya know.
 
I was wondering, are you on anything like Imodium or fiber?

I was also told that after a takedown many people still need to be on Imodium/fiber daily to help with the removal of the colon.

Again... just throwing stuff out there to try any maybe be helpful. A little. :)
 
I have heard of octreotide from doctor's dictations (my job), but haven't heard any of the results. If you do try it, I am very curious of your experience. I may need it in the future!
 
Oh Im on it all right now:
Paregoric 4Xday
Lomotil (like immodium, but stronger) 4xday
cholestyramine 3xday (just got bumped up from 1xday)
vicodin 2 tabs at night
metamucil 1t day

I should be set up like cement ~ but Im not. Which is why the Octreotide is the next addition

And the mentalpausal and analpausal did make me laugh out loud! Im Peri-mentalpausal...which is probably adding to feeling down today.
 
katiesue1506 said:
I was wondering, are you on anything like Imodium or fiber?

I was also told that after a takedown many people still need to be on Imodium/fiber daily to help with the removal of the colon.

Again... just throwing stuff out there to try any maybe be helpful. A little. :)
Click to expand...


Yep, definitely need to add a little bulk and fiber or something like immodium is a great way to do that. The number of times you need to use the restroom will decrease after surgery so if it seems like a lot at first, it's ok. But buy going more frequently you may experience some skin irritations down below so keep something handy for that just in case. Lots of choices available at any drugstore- I used a few different ones and they all helped.
 
So my endoscopy went well and confirmed that my sphincter muscles are weak and my anal opening is too large. Makes me think of Gilda Radner's SNL character Roseanne Roseannadanna, "If its not one thing, its another...." More tests set for next week, anal manometry, ultrasound and a nerve test. Might need another surgical fix or just physical therapy. I am alternating between being happy that there seems to be an identifiable issue and being discouraged at the prospect of another surgery, another recovery, etc.

In terms of adding the fiber, I have played around with the amounts and cannot seem to find an amount that works for me. Anyone out there have a plan (preferably one that minimizes night time bathroom calls?).

PS ~ In the looking at the bright side of things, after being on clear liquids for 24 hours I had nothing left in my system to wake me and slept for 7 straight hours!!! Unfortunately, a clear liquid diet isnt a feasible long term plan ;-).
 
Ah Gilda Radnor (RIP) and Roseanne Roseandana, yes you have a sense of humour Christine! (I'm originally from Golden Colorado by the way..and raised in Arvada so :cheerss:)

Lets hope physical therapy will do the trick for you and no surgery. As for the big D, with all that you are on and it not helping...Oi vey. They really need to find the reason behind that to save your poor behind!

I dont know what tests they have run to try and figure it out, or are they thinking it will settle for you over time after the surgery?
 
There are three tests all in my bottom ~ one is a nerve test to make sure that's all humming along properly, there's an anal manometry to test the strength of my sphincter and finally an anal ultrasound to see if there is any abnormality or scar tissue that is hindering my ability to hold it in.

The D part, yes I think if I was constipated like I used to be the other stuff wouldnt be an issue. I honestly dont know what else to do. I was up 8 times last night running to the bathroom, wearing a sanitary pad (as always) because there were accidents. And Im only a few steps from the bathroom.

I am weary from all of this.
 
Christine, what tests are they doing to determine why you have so much diarrhea? I mean that should be sorted for you as well.

Oh hun, I hope they can help you. I remember sleeping on the loo, there was no help for it. I get it, I really do.

:rosette2:
 
I dont know what tests they can do in addition to the stool samples Ive had. I have also been on a 14 day course of flagyl. Everything has come back negative. I have been gluten free for three weeks and its not been a noticeable difference. I am considering having the Alcat blood test done to test for food allergies ~ it will be out of pocket as the gastro doc doesnt think a food allergy is making this happen. Any thoughts?
 
Are they going to let you try the octreotide? Geez.... this really sucks. Hang in there, Christine!
 
So I go in tomorrow morning first thing and have anal manometry, a nerve test and an ultrasound to determine the extent of my sphincter weakness issues. I received the results of the endoscopy I had last week, and the doc doesnt think its pouchitis as the inflammation is minimal (I dont think any is good but what do I know?). This new doc really believes that the majority of my going issues stem from the sphincter problems. We'll see. I am not convinced I guess.

I did this past weekend read up on some studies done at NYU where the researchers had good results with Glutamine, boswellia, and a probiotic sacch'o something. Have started all of these. Just want my poor gut to heal!!
 
I'm sure it may not be helping if the muscles are weak. However, the I'm with you in that they need to find the CAUSE of the diarrhea to begin with.

Good luck!!!!
 
I met with a new surgeon today. The manometry tests all came back that the sphincter is not torn, just very very weak. There is a newly approved procedure, Sacral Nerve Stimulation, which has been approved for bladder control for about 10 years and just this year for Fecal incontinence. I am on the books to have it done December 4th ~ fingers crossed it works for me. The doctors think that I just cannot possible hold it in. I still think the Diarrhea is excessive, but they are definitely downplaying that. The doc said that applesauce is the best consistency that I can hope for. So hopefully the insurance OKs it tomorrow and I can get this done now. Leaving the house is still an issue, Im so sick of this!!
 
I am having a resection where the ileum and colon meet. It will be open, not laparoscopic. I have a nasty stricture there.
 
Why do they have you on Flagyl? If if is for the small amount of inflammation you mentioned they should have you on Cipro. It would bulk up your stools. My 4 year old has a j-pouch and had pelvic floor weakness caused by 6 month of constant rectal prolapse. The Cipro gave her formed stools without Lopermide. It was amazing. Where Flagyl made her D much worse and she had neuropathy we think. :eek2:

Rowan does pelvic thrusts to strengthen her muscles down there. She is very young so explaining a kegel is difficult. She has some incontinence once a week. Her poo is never formed now. Applesauce is the consistency. We do use Lopermide, VSL probiotics, psyillium, and lots of bananas and mashed potatoes! :dance:

I hope your feeling better... Seriously consider Cipro if you can take it.
 

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