Hi everyone, I know its been a while since I've posted. My hospitalizations over the past few months have been CONSTANT. Ive been to 11 doctors, including Bo Shen at the cleveland clinic in ohio, and no one has seemed to figure out what my problem is. One doctor now thinks she knows whats wrong (and surgery is a necessity) but it is such an anomaly that she needs so much proof to even get a doctor to operate. I might go off into a little rant, so I apologize in advance! I had my takedown surgery in 2010 and even when I had an ostomy i was not doing well. Since then I have been in the bathroom 20+ times a day, EXCRUCIATING cramping and stomach growling and I am just completely debilitated. I am 16 and should be in school, but due to all of these issues I am homeschooling which just makes the depression worse. When I had UC I was a very complicated case, i struggled with it for almost 11 years and become unresponsive to all forms of medications. Doctors have tried to figure out what is wrong with me now, and I have been on basically every medication they can think of (ALL 11 DOCTORS) . The only thing that i have not had is pain medication, due to the fact that everyone surrounding me does not believe that a 16 year old should be on narcotics. I have been suffering for over a year and have basically lost all hope. Since my takedown I have had 5 surgeries for my intestines twisting. All of my scopes come back as if there is nothing wrong at all. I have had a million and one tests and nothing seems to pinpoint the problem. Recently i went to dr. abreu at the university of miami (who is beyond brilliant) and she is one of the onyl doctors who did not believe that i was crazy. oh, did i forget to mention that? Doctors believe im crazy because nothing wrong ever shows up. they think it is all in my head!!!!! SO FRUSTRATING. She did both a pouchoscopy and an endoscopy. In the pouchoscopy she decided to go up further than just the pouch and low and behold she found a peice of intestine stretched out to the width of a softball. It is not moving the food!!!!!! the old food is jsut sitting there and waiting for buildup to move. She says she knows this is the problem, but my surgeon does not want to operate because he does not think that is the problem. She needed to show him PROOF. She decided to insert a capsule to take pictures inside of me that would eventually pass so she could show the films to my doctor. The capsule stayed in the same place for 3 days without moving. I have the complete opposite of an obstruction and it has not shown up on mris, or ct scans. Now I have to wait for another small bowel series so my doctor can have proof for other surgeons to see. Apparently shes never seen anything like it. She is very involved with the ccfa and has contacted a few surgeons to see if they are willing to do a surgery on me due to my age and the complexity of the situation. Every surgeon has said no. Once the small bowel series is completed and there are results she is going to contact a few doctors at the mayo clinic (cleveland clinic surgeons wont operate on me) . At this rate, nothing is going to happen for atleast 3 months, and i am still stuck here in excruciating pain with no quality of life whatsoever. I am so depressed and I have no words to describe how annoyed I am. Has anyone else had a problem even remotely similar to this?

This sounds terrible. Hope your new doctor can get you some answers and results. This may not even be a realistic suggestion, but have you tried laying down on both of your sides, back and forth to maybe help move things along in your intestines. It helps move gas. I sometimes roll around on an exercise ball too. But don't do any of this if you think it would hurt you. Praying for you.

Unfortunately, most pain medications would either be ineffective for this sort of pain, or actually make it worse in the long run (opiates) because they slow the gut and you now seem to know that motility is your underlying issue.

Antispasmotics may help with the cramping pain though.

You've probably gone this route, but is there a GI motility disorder clinic within your traveling distance? Your issues are not completely unheard of and there have been members here who had patches of small bowel with nerve damage, resulting in sections of dysmotility and the symptoms you describe. It is possible for nerves to regenerate, but after a year or so, not likely. Then the only option is to either live with it or have that paralyzed segment removed. That is where the GI motility clinic might be the right place to be. They see what needs to be done, and do it.

Your current doc seems very motivated to get you the help you need, so at least there is that. I know it seems to you that if only they would go in there and take out that stretched segment, that would take care of things. But, there may be other areas that need to be addressed, so they need to make sure that surgery is the right choice. Sometimes things are not so obvious to the naked eye, especially when your body is under the influence of anesthesia.

Jan

This message has been edited. Last edited by: Jan Dollar,

All I can offer are my compassionate thoughts and prayers to you. I am sure you will find a solution soon. We all can empathize with the pain of our fellow j-pouchers who suffer, and are all here for you. You are not crazy, you are human and it is alright to feel the way you do. Hang in there and please keep us posted...we really do care!

Love and blessings to you,
Rich

I too had problems like you are describing. Plus severe rectal pain. My surgeon did several scopes and kept saying he did not find anything wrong, Finally I had such severe pain they had to operate.
He told me afterward that he found the problem, but didnt say what it was. After he went back to the ileostomy, I had no more gut pains.
I hope this helps, and no pain med would even touch that pain, not even IV morphine.