Hi VIcki

I am really no expert in adhsions but...

As a kid I had them at my old colostomy site and every time that I exercised or played  I would get sharp pain just there. 

In the last few years I started building them again (I don't usually build a lot) and I feel either stabbing, strangling, or kicking-in-the-gut sort of pain (in my case very localized and pin-pointable)...it can put me on my knees. It can also cause blockages and occlusions that do or don't require immediate surgery.

The flu-like symptoms that you mention make me think of either some sort of narrowing in the gut, a twist that gets aggravated with movement, a hernia somewhere hiding...if they are saying that it isn't the pouch then maybe they should be looking higher up? A pouch that flops over?

Not everything shows up on traditional exams...you sort of need to have a great radiologist who is willing to experiment and find different ways to visualize your pouch/guts...

When no one had found the source of my problems (and no one believed me either) my Canadian surgeon gave me expicit instructions for an exam (opacification) of the pouch/guts.

I had my radiologist (the man is an true gentleman and life saver) drip opac (the contrast gunk) very slowly into my pouch then start injecting until it was full...took a while...he took pictures the whole time...then he turned me over on my left side...right...sitting, standing and bending over...(embarassing but it worked)...we discovered 2 things.

My pouch was down (I have a k pouch hooked to the abdominal wall and it can 'slip' off) which meant that it would flop or roll when full or if I did certain movements (yoga, running, turning over in bed) and it would block the gut until it rolled back into place. Needed to be full to roll back but it occluded when twisted!  I also had a hernia that it got stuck up in in 2009 (my surgeon flew over here to do emergency surgery on that one)...it has happened a few times on me...

None of these things showed on the other tests.

Some surgeons sort of give up on you when you do not fit into their little boxes...So they say chuck it and move on...you may need a second opinion or just a more optimistic (and creative) surgeon.

Also, do not neglect the other parts of your body...not everything is pouch related just because it effects our guts. Could be anything from a generalized infection to galbladder on through.

Have you had bloodwork done recently?

Hope that you find the cause and save your pouch

Sharon

I could feel my adhesions, especially the one were my temp stoma was.  They tested me by having me drink barium (small bowel study), consistency of water, and then have x-rays every 15 minutes or so.  They didn't see any kinks or structures etc so did nothing. The way fluid goes through our abdomens is different than when we have food going through them.  My local surgeon said that I needed to realize I'd have problems from time to time.  He didn't even call then partial obstructions.  

My first small bowl study results were that it took 30 minutes for the barium to reach my j-pouch,  One year later my surgeon ordered the next one and it took 2.5 hours.  There was something causing it to slow down and that was because my scaring had turned into adhesions.  

My recent surgery to divert to a permanent ileostomy was awesome.  My surgeon spend 3 hours lysing all of my adhesions.  The mesh placed in my abdomen fixing my hernia was all stuck to my intestines.  She had to peel them off and there were adhesions in the rest of my intestines too.  I feel so much better I don't even mind my ileostomy.  I also am going to a medical professional that does A.C.T. treatments.  She'd gotten rid of some of my adhesions before my pouch scope in Feb.  We stopped doing the treatments until after my surgery.  I can feel little knots forming in my abdomen and she busts them up plus she feels more of them as well.  I'm determined to not let them reform!

One of the residents told me that they would all come back.  I wanted to tell her no way were they all coming back!  Plus why did my surgeon, her boss, spend so much time getting rid of them?  Besides my j-pouch surgeries I'd had other abdominal ones and they were all open and not lapro ones.

My local internist and my GI at Mayo felt them throughout my abdomen and my internist prescribed Norco pain medication because I was in pain every day  The last 8 months I used my j-pouch I was on a soft food diet.  I'm now eating solid foods.  I use to get hit with pain soon after I ate any thing. 

Has any of your doctors examined your abdomen to try and feel if you have any?  If you are interested in the A.R.T., active release technique, please look them up on-line.  There is a search engine so you can find medical professionals that do it close to where you live.

They don't operate on us to get rid of adhesions unless there is a blockage or there is a need to operate for another reason - like my diversion to an ileostomy.

I hope you can find relief, keep your k-pouch and prove that doctor wrong! 

Thank you, thank you for the information. I have learned so much from this site.

Vicki, adhesions can be hard to prove unless someone is looking at them during surgery. Even then it's hard to be sure that they caused the problem. Some of your symptoms don't seem very adhesion-like (or at least not typical), so my first question would be whether you're absolutely sure you're well-hydrated when you have these symptoms? Dehydration can cause some of the general sensations you describe, and it can also cause constipation and aggravate a variety of GI symptoms. The best way to tell if you're dehydrated is to look at your urine. If it's clear to light colored you're not dehydrated. If it's dark or you're not peeing, that's your biggest problem.

Adhesions can pull on things, twist/kink the intestines, and in the worst cases cut off the blood supply to the intestines. Most people who have any abdominal surgery have some adhesions, but most adhesions don't lead to big problems. When they kink a portion of bowel it can block digested food from passing easily or at all. Sometimes this fixes itself when the bowel unkinks, and sometimes it needs professional help, either to keep you hydrated until it passes, or (occasionally) to unkink the bowel surgically.

For repeatedly troublesome adhesions surgery to cut them is sometimes done. It can be very helpful, but usually also causes new adhesions. The hope is that the new adhesions are less troublesome than the old ones, and it only works out that way sometimes.

I second everything that Scott said.  I was in and out of the hospital for multiple partial to full obstructions over 2 years that we assumed were due to adhesions.  Finally, I had surgery as the obstruction was not resolving.  They lysed several adhesions, one of which was wrapped so tightly, the bowel looked like it was going to get cut in two.  They showed me the pics from the surgery.  Really scary to think scar tissue can do that.  So now I just hope that the surgery will help me instead of hurt me in terms of causing new adhesions, but really, I had no choice.  It's really hard to say whether or not your symptoms are from partial obstructions from adhesions.  A surgeon isn't going to do anything about the adhesions until it's clear there is a full obstruction that isn't resolving on its own.  Sorry to hear about your struggles.  I had my own share of confusion and frustration.  I hope it gets figured out.

Thank you for sharing your knowledge. I am trying to avoid emergency surgery and so I have been as inactive as possible but I am becoming more bloated and nauseous with simple household chores. I am pretty sure after these conversations that adhesions are the cause.

I live in the desert and am always very aware of hydration. My symptoms are always after an exercise of some sort.

Thank you

I'm glad that my surgeon did this last surgery laproscopically.  All of my prior surgeries, going back to the hysterectomy in 1996, were done open.  If you had your surgeries done laproscopically hopefully you don't have as many adhesions as I did. 

Adhesions are often found only when one has surgery (that is how I first learned I had them - during my second surgery, I had a number of adhesions that had to be taken down so the pouch could be formed, and this actually resulted in a longer surgery.). Unfortunately, without exploratory surgery, adhesions are often a probable rather than definite diagnosis, as they don't normally show up on standard x-ray or MRI, although my surgeon did tell me once that they can occasionally be visualized on CT (I assume those would be larger ones). Adhesions also don't necessarily have specific symptoms - you can have pain, cramping, obstructions, constipation, nausea, etc, but those symptoms are general to a number of conditions and so other things must be ruled out.  However, you can sometimes feel adhesions by palpating the abdomen. I can in fact feel mine on occasion, usually after I've eaten; they are right below the old stoma site and feel like a hard lump that moves or shrinks as stool passes. I've several partial obstructions which were likely caused by the adhesions in that area. I think I went through a period last year where my bowel was kinking and unkinking, though an MRI didn't really show anything.  Although I generally don't have pain, every once in a while I'll feel a sharp momentary twinge in the area, probably when a larger particle is passing through.

Adhesions  can be released by surgery, however as more surgery tends to form more adhesions, this is usually only done if there are continually problematic, or if you have an obstruction that cannot pass. In my case, both my surgeon and I agree that they should be managed conservatively unless they become too much of a problem. And really, I'd rather not go under the knife again, so I'm happy to make the necessary modifications to my diet (lower residue) to help avoid this if possible.  There is something called ART - adhesion release therapy - which can be performed by a massage therapist or chiropractor. The idea is to use gentle massage to gradually soften the scar tissue over time. You'd need to find an RMT  specifically skilled in the process, however.

Hey, thanks for the info on adhesions. I just had my first small bowel obstruction since my surgery about 4 years ago. That was not fun. I will check out RMT or learn to do it myself!

I just wanted to add that I have been having ART therapy by a Chiropractor who went through the training.  I wrote about it above and am just adding this here as Renee mentioned it above.  If you are interested please look up their the A.R.T, Active Release Technique site link below.  

http://www.activerelease.com/

After my colectomy I couldn't eat any solids without getting a blockage, so my surgeon suspected adhesions. When he did the takedown, he found it. My intestine was stuck to my pelvis. He detached it and straightened it out, and it's fine now. 

I am in the process of trying to get surgery to remove my j-pouch and go back to ileo loop. I am optimistic (foolishly?), but my surgeon seems hesitant. He is an acclaimed surgeon, but has never done a reversal. Should I be concerned?

If he's leaving the pouch connected and just creating a loop then the surgery isn't very complicated, but it's not a very satisfactory long-term solution for most. I can't tell why he's hesitant (whether he knows a loop ileo may be inadequate, or something else), but surgeons by nature tend to only get hesitant when hesitation is appropriate. If he's planning to remove the pouch, then you really, really don't want to be his first case.

Scott - Thanks for responding, although your last line put a scare in me.  I don't know why he is hesitant either. Is that why you say don't let me be his first or do you think he somehow may lack the surgical experience and perhaps skill to pull it off?

Pouch removal can be difficult surgery. Someone who hasn't done it may have the skills to learn alongside someone who has done many, but he can't have acquired the experience to anticipate the challenges that may crop up during the procedure.

She left my j-pouch in and diverted to a permanent ileostomy.  May I ask why you want a temp ileostomy?  If you are getting your pouch excised then it makes sense to get a permanent ileostomy.  

I agree with Scott.  Please get a 2nd opinion. You can ask him to refer you to someone with the experience doing those procedures. 

Good Luck

TE Marie - I was obviously unclear. I want a permanent ileo.  I am meeting Monday with a colleague of my surgeon for a second opinion. I will ask about referral. I'm starting to feel overwhelmed by all this. I go through periods where I wonder if I have really tried everything possible, but I keep returning to J-pouch removal. So hard not to be impatient given what is going on with me.  

Hi Hockadoo,

I understand your frustration.  I wish I would have gone this route at least 18 months before I did so.  I'm a determined person and was determined to make my j-pouch work.   All that did was to make me dependent on my j-pouch.  What I ate, where I went (mostly didn't go anywhere), and kept me from having any quality of life. The GI at Mayo's that did my first pouch scope there asked if I had my j-pouch surgery there because he said it was the best looking one he'd seen in 5 years, except for the cuffitis. I should have said I bet he said that to all of his patients My surgeon trained at the Cleveland Clinic. I kept thinking that it would someday start acting like it should and it never did.   5 years was too long to keep it up.  

I have so many other health problems I just need to get one of them under control.  I am no longer able to work and am disabled.  I doubt this surgery will help me get back to work but it will help me go to the grocery store or to visit my elderly father again.  

It isn't a mind over matter thing and once I realized it was out of my control the decision was easy.  I'd used all the medications, changed my diet and so on.  I have other health problems and some of them are also auto-immune.  My body just doesn't like me!  

It looks like you have been trying for 2 years and I think that probably is long enough. So don't feel like you are giving up.  You probably are analyzing reality better than I did.

I also kept my j-pouch as wasn't up for the difficult recovery from that surgery.  It involves things like our blood supply and more issues than I want to think about. I might have to get it excised in the future.  

I'm still having cramping pain but am hoping it will soon get better. I just had a procedure. An Interventionist Radiologist, guided by a CT scanner, went in through my butt cheek and drained 40 cc's of fluid that was in a 5 cm sack sitting on my bladder. I was under conscious sedation so it was a breeze. The shortest hospital stay I've ever had ONE day. 

Hopefully you will obtain all the information you need and have a surgeon that has experience with these surgeries.

TE Marie - Thanks for your kind response. My thoughts are with you; hoping for the best. I got my second opinion today. Basically, the doc said it looks like I should get the ileo, but they are not comfortable or experienced enough to do it. Called Cleveland Clinic, told Dr. Remzi now booking into February. So that's about a 3 1/2 month wait.  Going to have him take out the whole damn thing because I don't want to worry about cancer from ulcerative colitis of the cuff. Task now is trying to get my arms around the notion of at least three more months of having to - shall we say - gut it out.