Pain everyday

I have had my BCIR for just over one year and experience discomfort (I don’t think of it as pain) when my pouch is full or I have an excess of gas. Emptying the pouch brings relief, and sometimes I have to do it 2-4 hours after the last intubation. It is possible that your pouch did not develop to an optimal capacity (600-1000 cc’s) during the first several months after your surgery. Another possibility is that you are not able to fully empty your pouch. These are things you should ask your surgeon about. A third possibility is excess gas, which dairy products are known to produce for some people. Other posts on this forum list various gas producing foods. A lot of what we pouchers do is trial and error: see what works best for us. Hope things work out for you.

Thanks Billv,
I have asked my surgeon but he says he has no idea ! I am careful with what I eat and try to stay away from gas producing foods but still
I end up with these pains. If I take panadeine forte it goes away but I don't want to have to do this all the time. The doctors are no help
as they say maybe I will have to stay on pain killers all the time. They just don't know enough about it.

Hi Cathy,
I’m sorry to hear that you need to take pain medication for your pouch problem. Narcotics can be habit forming and lose effectiveness when used for an extended period of time, so be careful with them. Another possible source for your pain is adhesions, which result from abdominal surgery. I have had 4 abdominal operations and developed a number of adhesions, but fortunately (at least to this point of time) they have not produced any problems with my former jpouch or current BCIR. Has your surgeon considered this possibility?

The Cleveland Clinic located in Cleveland, Ohio USA has an excellent reputation for dealing with pouch problems. Perhaps your surgeon could contact them for advice in handling your condition. I also understand that they do remote consultations whereby they review the patient’s medical records (no costly travel to Cleveland is needed) and make recommendations. I read about this in a forum post some time ago, and I recall the cost as being around $900 US.

I like your picture and it brings back fond memories of when I was involved in breeding of warmbloods and participating in competitions. Please PM me if you have any questions.
Bill

Hi Cathy

I hope you see this message. Let us know what you have done about the pain. You need a GI doctor now to do a small bowel follow thru to look at the 20 or so feet of your small bowel. Sounds like you are obstructed some where. I am going thru the same thing. Antibiotics relieve it for the time I take them then it returns full force. Did they do a CAT scan on the kock pouch to see if you have narrowed at the opening into the pouch. I had one twice and have had to have scar tissue and dilation done. Once it instantly relieved the pain and now this month I had it done again but no relief. Soooo I know have to look at the rest of the bowel to see what is causing the pain.
Let me know Jeanne

Jeannie: Who did the dialation for you and how long has it been since you were dialated? My opening was dialated about two years ago and it has worked well ever since.

Hi Jeannie,
Thank you for your reply, it certainly sounds like that could be the problem. I will talk to my doctor about this. Thanks again as I really have no one else to advise me. I will let you know how I go.

Hi Cathy,
There can be a lot of different reasons for the pain, especially since it goes away once you intubate.
1. Pouchitis can cause irritation of the pouch lining and can be relieved through a treatment of antibiotics.
2. Food allergies or sensibilities. Either get tested or try an elimination diet. By keeping a food diary and doing the elimination diet: you do a 24 liquid fast (only water, tea, juices etc) then introduce 1 food at a time, 1 day at a time (I always start with chicken the first day, it is rather pouch-friendly) and then introduce 1 protien per day at a time (you can accumulate them), then vegetables, fruits, nuts or nut butters and seeds and finally carbs (breads, pasta, rice, beans...). Keep the diary going and write how your body/pouch reacted to each new food and do not forget to try them first Alone before mixing the food with another (write down that too. ex. sandwich or chicken & rice...). Do not forget to write what you drank with the food and how much.
You will end up with a very percise list of the foods that are pouch friendly for you and work well together.
3. A pouch twist or the pouch has fallen off of the wall. NO one thinks about this one but it happens more often than you can imagine. I am a bad healer and once my sutures have 'reabsorbed' my pouch just 'collapses' off of the wall. I needed permanent sutures to hold it in place (this is rare but...)Sometimes only part of the pouch is healed or scarred onto the abdomen and it 'partially sinks' and I get a twist. Either way, as soon as it starts to fill it hurts (that is my hint)because it pressesd on things that it shouldn't (bladder, uterus, ovaries. Whatever is in the area at the time). It is very hard to catch this one. You cannot tell in the typical contrast studies because you are laying down on a table! You have got to convince the radiologist to do the study with you 1. on you back. 2. On your right side. 3. on your left side. 4. Standing up!!!!!
It is the only way that they can tell if it is twisted (at the neck of the valve usually which can cause problems intubating too and sometimes leakage when full).
My radiolist acted as if I was a nut case when I asked him to do it that way. Then he finally agreed (I can be very persuasive) and he was shocked. My pouch was litterally hanging sideways. NO wonder I was having problems.
4. A hernia. Sometimes they hide behind the pouch or near the stoma and can be small but painfull when the pouch fills up and pulls down on the abdomen. (sometime they are the result of a twist or cause it...I ended up with my pouch getting 'stuck' inside the hernia and had to have ER surgery to get it out!)
So, those are just some of the possibilities. My first step would be the diet and to have your surgeon book a contrast study (you are awake, it is painless and they drip a contrast fluid into your pouch to visualise the valve first then the whole pouch.)
Once you have that done you will have a better idea of what it is or is not.
Hope that this helps
Sharon

Hi Sharon,
Thank you for all the ideas, I am sure that will give my doctor a good idea where to start. As I said they really have no knowledge of the things that could be happening so would it be ok if I show him your post ? I am really grateful for your reply as I was starting to think I would have to take pain killers for ever.
I love my K pouch and would not go back to the way I was before for anything . It has been a life saver and it will be good to sort out this problem . Thanks again for your help.

Not only can you allow him to read it but you can give him my name and phone number for a long distance 'consultation'.
Just PM me.
Let him know that I am not a medical professional but have been working with them here in France thanks to the help and cooperation of Dr Zane Cohen at the Mount Sinai hospital in Toronto, Canada.
I instruct them on how to do aftercare. (no one here knew what to do with them when I got here).
PM me for any assistance you may need. If worse comes to worse I can put Dr Cohen in direct touch with them.
Sharon

Dr Robert Goldklang, Gastroenterologist (from Scripps Memorial and Encinitas, CA dilated me at Scripps Memorial in Interventionl Radiology. June 11, 2014. Yesterday my pain is just as bad as when it began over a year ago. Sooo the dilation was not my problem. I am desparate now. I will return to Dr Worsey as spending precious time with GI docs up here in northern California is a waste time and expense. They do not want to work on me either. My own GI doctor, Dr Pecha in Folsom, CA and Placerville, CA will not take me seriously when I say "I am in Pain" please help me. He could care less. I am just bummed out today
Jeanne

Jeanne: I would call Dr. Beart in Glendale,Ca 818 244-8161. Not sure he does surgeries anymore, but I believe does consultations and has 2 surgeons that work with him. He was at the Mayo in the 70's and knows a lot about Kpouches. He has helped me a great deal.

Jeannie,
You can also try Dr Cohen's office at Mount Sinai hospital in Toronto...he has an IBD and intesintal disease center that handle's these sort of things very well...
You can litterally tell his secretary that Sharon from Paris has reffered you.
You can email all info to him and ask for a consult.
Sharon

I live with chronic pain. I had celiac plexus nerve blocks that helped a great deal.

hi...BillV is right. And, remember the pouch sits on the right, next to bladder. If that is full and the pouch, it can cause pain.

I'd be sure to empty more often (both urine and KP). Especially after you eat.

Are you irrigating the pouch during interbation to be sure it's all the way empty?

Even mild pouchitis can cause pain.

Try a gastroenterologist if the surgeon is baffled.

Also, during my 30ies and 40ies I had to be on birth control pill due to extreme menses that caused so much pain in my pouch. I had uterine fibroids pushing against it. I had them removed.

Try not to worry, it doesn't have to mean it's some awful going on!

Best, Janice