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10 year problem free jpouch other than occasional pouchitis. Surgeon of my jpouch surgery just retired
3 nights ago woke up with pain behind my ostomy incision. Prior to this I was 100% well with no pain and perfect bowel movements. Up till now pain keeps getting worse and now untolerable. On morphine now at hospital ER. The pain is only in my lower right abdomin down to my right testicle. Most sensitive pain is in behind my stoma incision and right groin/pelvis.
2 nights ago did CT scan. Diagnosis pouchitis and tiny Spigelian hernia.  Sent home same day with cipro and flagyl. Took 2 pills with food, took 8 hours to have a small bowel movement after. Not normal. Since then, very small bowel movements, not frequent and no urgency, unlike having pouchitis or a stool filled jpouch which starts getting heavy.  Very bloated and hard to pass gas. I feel a blockage build up from the end of my small intestine going into my pouch.  Stopped the antibiotics because doesn't feel like pouchitis symptoms and seemed like they were causing constipation. That's when the pain was getting unbearable. Back to the ER. Haven't eaten in 24 hours, not because I can't, because I still have an appetite and never had the urge to vomit.  Just don't want to cause a blockage and worse pain. Finally general surgeon sees me just now, keeps poking the crap out of my stoma incision, hurt like hell and said it was fat build up burning itself up. Seriously??
Next day almost pain free and not on any pain meds. So releasing the possible hernia helped.
Diagnosis upon hospital release, A hernia behind stoma incision causing blockage. Sounds very possible but I still think adhesions could be a possibility.


Jim
Last edited by J'd up
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You can be obstructed without it being due to stuck food. Most often it is due to twisting against adhesions. I really can't say whether to trust your doctor or not, but generally they have more knowledge and experience than we do. Personally, I'd be OK with a repeat CT. I know there is radiation, but things can change in a few days. You could ask for an MRI to avoid the radiation.

 

Jan

Thanks for the reply. Well here's an update. Yesterday he pushed the stoma site deeply last night for about a minute, which was extremely painful. And now today I feel no pain, and im not even on pain killers. I guess I over reacted yesterday after searching the forum for hours and hours trying to diagnose myself. But that's ok I guess. Learning is good. So it Could definitely be adhesions twisting the bowel. Maybe I should look into deep tissue massages if that's the case.
I'll update later when I learn more.

Yeah, that does sound like an obstruction. Unless this keeps happening, you can just consider it a blip on the radar and just move on with your life. The take-away lesson is to know that once you've had abdominal surgery you can have an obstruction at any time, and it has little, if anything, to do with what you ate or did or did not do. Some people get good results with deep tissue massage to break up adhesions, but I would be careful to choose someone with that specific skill. Plus, it is possible to tear something unintended or cause internal bleeding (leading to more adhesions). Surgical release is the real ultimate solution, and even that can cause new adhesions.

 

Glad you are feeling better. Do not feel surprised if you are not back to normal for a few days or a week or more. Your gut is pretty swollen inside and it takes time. Sort of like being beat up from the inside.

 

Jan

 

P.S. FYI, a general surgeon did my j-pouch, so not unheard of.

Last edited by Jan Dollar
Thanks for the helpful info.
I guess it's stressful losing your jpouch surgeon and meeting new Drs. But that's life. Well I'm being released from hospital today and it's most likely a hernia at the old stoma with fatty tissue that twisted my bowel (But it can be adhesions too maybe). It's hard to pass proper stools because of the pain from straining.  But at least I can walk now without dieing from pain.  Guess I'll keep monitoring it. If anything changes I'll update this thread. It helps a lot being able to search the forums and being able to find and learn different and unique things about us.

No it did not release on its own. I complained about it for years, in and out of hospitals, years. I keeper theming them the pain is always at the stoma site. Happened right after takedown the first time. My surgeon did not want to do surgery cause eventually it cleared on its own. But it made me miserable. It was only when I had ball bladder surgery did I beg the surgeon to see if he could find the problem and fix it and sure enough that's when he told me he found the intestine adhered to the stoma wall. He released it and that stopped that problem. Unfortunately, after that surgery I developed even more adhesions at other sites that eventually caused me such agony I could no longer eat and then had full adhesion removal surgery. 

Ouch!!  Did it have any effect on your bowel movements? Like constipation, diarrhea or blockage?
I'm having something similar happen right now. I feel a blockage happening behind my stoma site. It sounds like maybe an adhesion or most likely like they originally said a hernia where my intestine is getting twisted within the abdominal hernia.
Might need surgery sooner than later.

Yes, it caused major blockages and major pain at least once a month. No joke, this went on for years. When I blocked nothing would come out, I'd swelled up, I would vomit, and oh the pain! Then once it started to clear id have major diarrhea as that is the intestines way of pushing things out. 

As long as it keep clearing on its own my surgeon would not do anything. It was only when I had the gall bladder out that something was done. 

Why wait, why suffer like me. It sounds like u have no choice anyway. It's a easy surgery.

When I was admitted to the hospital with a twisted small intestine, my surgeon kept pushing on and manipulating my abdominal area.  I thought I'd die from the pain.  He continued to do so on and off all day, every day for about three days while he held off operating.  It wasn't until recently that I realized he probably was trying to release the "knot" my twisted small intestine was in!  It worked!  From then on, whenever I feel "obstructed".....whether I am or not, I do the same thing.  I knead away!

Hi, I was just thinking about doing that. The surgeons resident did it once and the next day the pain was relieved!!!  I feel the pain and blockage coming back now slowly. When you do it, do you do it just on the stoma incision or the whole abdomen?  Also, do u use your fingers or just finger tips?  Do you ever fear that u can tear the abdominal muscle even more when u do it?
That is unfortunately true about having more surgeries. It can fix a problem but at the same time it can create a new problem in the long run. For the meantime I've been trying to press this intestine back through the hernia/fat tissue. The spigelian hernia is so tiny that it can't even be felt. Will see how it feels tomorrow.
Thanks for everyone's input. The update is that my pain has lessened significantly. Although I can't feel the hernia, I know that there's still a blockage. I feel it when the food gets to that general area. For the meantime I'll just keep pushing and massaging away and keeping a heating pad on it. My goal for now is to avoid surgery. I've also been drinking prune juice to keep the bowels flowing. I'll update this thread as I go along. Hopefully it helps someone in the future with a similar condition.
Thanks again.

any udate J'd up?

 

I think I am in a similar situation although maybe not as bad.

 

I have a small Spigelian hernia by the old stoma site. I get a bit of bloating and discomfort when stool/gas passes through there but I have just been putting up with it. I find putting my hand over the stoma site area helps things pass through easier and relieves tension.

 

The surgeon says that as I am very active it could get worse over time and its worth just getting it fixed now.

 

I am a bit nervous that the surgery could make the situation worse but at the same time I would rather just get it sorted now and out the way. It would be nice too to get rid of the discomfort. apparently small hernias can be more uncomfortable...

Last edited by Shainy
The final diagnosis on paper was a spigelan hernia. However, after speaking with a few surgeons and doctors I convinced them that it was most likely caused by adhesions. And they all agreed that it was a good chance that's what it was. So we don't really know exactly. But everything went away on its own. Massaging it also helps. In my ten years with a jpouch it only happened this one time. Sometimes I feel that I know my body and can diagnosis myself better than the professionals. Sometimes you just have to tell them "No, that's not what the problem is" lol 
I think us jpouchers have interesting and unique symptoms sometimes that regular doctors get confused about.

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