Hello all,

I recently posted in the "pouchitis" section of the site about recurrent problems I have been having with my pouch...strictures, inflammation, ulcers in and above the pouch. I also have all over body aches, stiffness and a lot of anal pressure and pain.

I have been dealing with this for over a year now on and off since being hospitalized with a partial obstruction resulting from a severe stricture. Since then, I've had numerous scopes and dialations. My most recent scope yesterday showed a stricture and pouchitis. I am currently in alot of pain.

I have been eating NSAIDS like candy because Tylenol does nothing to help my pain. I use analpram and zylocaine jelly locally and that helps a little for localized pain, however does not last long and does nothing for my all over achiness, urgency and internal burning pain.

I know that taking the NSAIDS has probably done more harm than good and may be causing some of the issues. I have been told not to take them, wait for the biopsies to come back and we'll go from there. I pray this is not Crohns. In the meantime I guess I have to just grin and bear it.

I told my doc that hydrocodone has been very effective in the past with minimal side effects, but because of the new rules in Florida for controlled substances she will not write me a script. I'm not sure if norcotics are the answer anyway, but I dont know what else to do. I am sooooo tired of hurting and overall feeling like crap all the time.

Does anyone have an thoughts, experience, advice on pain management for pain caused by pouchitis, stricture, etc.?

As always, any info will be appreciated greatly!

Thanks,
Alex

That's nuts, if you can't get hydrocodone then no one should be able to. Where I live we have to have a paper prescription and it can't be called in. Can you call her back or your primary care doctor for a prescription? My surgeon hands out prescriptions for 20-30 pills, like they are diamonds, at a time. My Internist takes care of my pain management and writes the hydrocodone/tylenol scripts.

NSAIDs are not good expecially if you are having any bleeding or ulcers as they thin your blood.

I hope you have time today to contact the doctors and not got through the weekend in pain. ER visits are very expensive.

Hope you are feeling painless - soon!

well from my experience pills dont agree with my j-pouch.also if you have a stricture taking anything that would consitpate you would make things worse.have you heard of a pain patch?it might be more effective and easier on your body.i was on pain meds for years and i had to get off of them because they did more harm than good.last year i couldnt sleep,could barely stand and felt very sick because the pain meds lost their effectiveness on me.if not a patch than liquid like roxicodone.roxicet causes severe constipation if taken in higher doses.

I would ask about being put on Neurontin (Gabapentin). I was just put on it for pain management for my IC and it has worked instantly. It blocks the signals to the brain so your body doesn't feel the pain. Look into it and see if it is an option. It is an anti-seizure med but it is given out for a lot of other issues. Pain, numbness, bi-polar, menapause symptoms, tingling, etc.

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000940/

I was able to get away with ibuprofen and other NSAIDs for years, but then developed chronic pouchitis and liver and had to stop. I now only take them only a couple of weeks at a time when absolutely necessary for my arthritis flares. Otherwise, I stick with my Azulfidine, Simponi, and Vicodin. Plus, I get periodic steroid injections in my more painful joints. Just had both shoulders done this week.

After abstaining from NSAIDs I just had a scope this week and my GI said my mucosa looked the best he'd ever seen.

Get on some maintenance treatment for your arthritic pain and do not accept a Crohn's diagnosis while you are taking NSAIDs. Have you been evaluated by a rheumatologist?

Jan

Thank you for your responces!

Here's a quick update...after contacting my GI and PCP numerous times on Friday, I finally got some scripts... I had had a pelvic ultrasound a few days prior that when they received the results on Friday revealed a hemoragic (burst) cyst on my right ovary. Maybe my pcp felt sorry for me dealing with that and the pouchitis pain, because she finally wrote me a script for Hydrocodone. My GI doc had not received my biopsy results and had I not called, I probably wouldn't have heard from her, but... I basically demanded she do something for me because I didn't want to be miserable all weekend. She called in a script for Cipro.

That said, I am grateful I was able to start both yesterday. I immediately felt better and as usual, after one or 2 doses of Cipro I felt loads better. I took two doses of pain meds yesterday and only one today. I'm heading to bed soon and don't intend on taking anything else for pain tonight. I'm hoping to not need anything tomorrow.

Jan - Ibuprophen has always been my preferred drug for pain and it seems that might be catching up to me. Tylenol alone is virtually useless to me. I've never heard of Azulfadine or Simpioni but I will check into them. It is increasingly difficult to get a narcotic script in Florida with all of the new rules as a result of Florida being the number one "pill mill" state. Maybe I should see a pain management specialist, who knows. I just know that I would like to find a solution.

My GI actually brought up the fact that this could all be caused by NSAID use so I'm hoping she's not going to push a Chrohn's dx unless she has ruled everything else out. I'm hopeful she will be much more helpful once she has all the information she needs in front of her and we meet the next time.

I haven't seen a rheumatologist but I did have some tests done when I had my last physical that apparently were negative (ESR, rhuematoid something or other, etc.). It probably wouldn't hurt to make an appointment with someone regardless though. It would make sense since I already suffer from another autoimmune disorder.

Hopefully more will be revealed soon!!

Alex

Alex, you sound so much better. I'm glad you got the prescriptions. So sorry to hear about your cyst. You had 2 sources of pain coming from the same area in your body, ouch.

Thanks for letting us know how you are doing.

What I find frustrating is when you are dealing with pain and you have a hard time finding a Dr. that will write you a script. Luckly my regular every day Dr. is very good and will keep me in pain meds, but I have changed GI Dr.'s since I found this site because I could tell after reading posts on here that my GI Dr. that I had was not ready to deal with my pouch. I am much happier now. Maybe you will have to change Dr.'s until you do find one that will address your pain. Good luck to you.

Ouch,I know that pain. I had an ovarian cyst a few weeks post op.

Jan

Hello Nurse Alex,

I also live in Florida. The best thing you can do is start seeing a Pain Management specific doctor. That is what I do because without the pain meds, I wouldn't be able to work. They are strict-you have to go in every month to renew scripts, they won't call them in, and you need to have periodic urine tests-but if you are in that much pain, it is worth it. I also just had an ovarian cyst (same side and everything) burst. Combining pouchitis with everything else can be unbearable.

Starting with a pain management doctor and discussing medication or alternate ways to deal with the pain has been so helpful. I completely encourage you to do the same.

Tammy

Hi Tammy,

Where in Florida are you? My PCP mentioned going to a pain management place but I have no idea where to go. I'm sure she would be able to refer me but with the way things are going in Florida I need to be extremely careful. Any info would be great. I'm in the Orlando area.

Thanks,
Alex

Hi Nurse Alex,
I live in Naples,FL. But there must be something local in Orlando. Sometimes there are also Pain Management offices connected with hospitals. That it how I started seeing on when I lived in Maine. If you have insurance and can look up "types" of doctors that your insurance covers, try looking under "pain management".
I hope you can find something.

I found a pain management clinic. A local clinic that my Primary Doc recommended is on my insurance plan. I went on Friday and they were very nice but the script I got was kind of strange. Hydrocodone 7.5/500, one every 12 hours as needed for pain. I've never heard of q12 hr dosing of hydrocodone. Seems as though the doctor wasn't taking me seriously. The plus side however is that I started feeling better Sunday morning, didn't wake up in horrible pain and haven't really needed the meds anyhow.

Hopefully I'll get some answers soon!

That is a very low level dose... I sympathize with you. I have been treated like (excuse the expression) a junkie so many times that I have been rushed into the ER writhing in pain. I don't know if it is because I am young, or what is this issue. It is frightening that so many doctors know so little about our conditions and the side effects of pain. But I am really glad to hear you are feeling better. Fingers crossed that you stay feeling good.

So sorry you are going through this...chronic pain is the worse. I'm so glad I'm pain free.