Forgive my long absence, things have been so hectic. I finally was able to have my one year check up with a surgeon, and she thinks that I probably have pouchitis. If I do, this has probably been going on untreated for six or seven months. That's going by the joint pain I've had that my primary care doctor has diagnosed as Fibromyalgia. 

However this morning I was awake due to this pain being unbearable and I did just a little scratching at the surface so to speak, and found that all of my symptoms match for pouchitis. The surgeon I saw prescribed antibiotics, however I haven't been able to pick them up because of a mix up and missing paperwork at the Social Security office and my health insurance lapsed. So I can't pick up the pills.

Is there ANYTHING I can do to ease these symptoms until I can get things straightened out with Medicare and pick up my medicine? This is really becoming ridiculously painful all up my spine and shoulders and pelvis area. Ibuprofen doesn't work anymore and I'm at a bit of a loss.

Original Post

Cipro and Flagyl are both inexpensive medications. Why not find out what your prescription would cost to fill? You might find it well worth the expense, even without coverage.

People almost always get prompt relief of urgency, leakage, and frequency when their pouchitis is treated. The other symptoms you describe have a more complicated relationship to pouchitis, so it’s harder to predict the benefit you may get.

I did check to see what my prescription would cost, and it's more than I have. I'm allergic to Cipro, but Flagyl isn't a problem, though that isn't what they gave me for a script. 

I'm so sorry to hear this.  Unfortunately, if it is pouchitis that has been untreated for awhile, nothing else is really going to help you other than the antibiotics.  Good news is that once you start, you'll probably feel like a new person within 24 hours.  I guess I take my insurance for granted.  I just picked up months of antibiotics that I use in rotation (Xifaxan, Flagyl, and Alinia) for virtually nothing.  Generic a bottle of Flagyl usually costs me like $1 or $2.  Hope you get this sorted out really soon.

Seirla, just thought of something that you can do today to try to help while you wait to get your insurance figured out.  Pepto Bismol tablets!  Honestly, for me, they worked AS WELL as any of the antibiotics that I've used.  I was taking 2 in the am and 2 in the pm and it kicked my pouchitis in the butt.  It's something worth trying since it's over the counter.  

Seirla, I don't know if you can get to a Costco or if you have a Costco membership, but their pharmacy charges less than drugstores. I had to pick up a prescription and found out Costco charges $25 less than my drugstore. Their annual membership is around $50. I am sorry you are feeling poorly and have to wait for your insurance to sort out. Please try not to stress. Our guts do not like stress. 

I really appreciate the ideas and support from everyone here. It really means a lot when not feeling so good. I do have an update. Social Security found what they were missing and hopefully by the end of the coming week everything will be sorted out. Also, I went down to Walgreens to pick up the medicine with the very last of my money only to find that my secondary MassHealth covered the antibiotics. And after only a single dose, I feel so much better than I have in so long. I've apparently, just going by the symptoms, been suffering this for seven months, with sleepless nights and stomach aches and no one knew anything and a possible misdiagnosis.  I'm still new to this post surgery life, now I'll know if I have it happen again.

Seirla, that's good news. Remember to finish the entire course of the antibiotic. Don't try to save some for next time, even if you start to feel much better after one or two pills. If you stop too soon, the pouchitis bacteria might come back with a fury, faster and stronger than before. 

Maybe ask your doctor if your prescription could have several repeats on it so that you just go to the drugstore and pick it up when needed, without having to contact your surgeon and waiting for them to call it in to the drugstore. Also, if possible, maybe start something for yourself similar to a "home fund" but in this case make it your "health fund".  Each month put aside just a couple of dollars into an account that is only for emergencies or medication in case there is a holdup in your insurance again. It will ease your mind if you know there is small fund for emergencies or medication, as a bridge to help you through. 

Keep getting regular pouch checkups with the surgeon who made your pouch. She will know it best since she created it. Maybe they will let you book a year in advance, just to get into their schedule.

Thank you for the advice. I can try putting a little away each month into my savings account. I also save all the change and have a bowl full of silver, but it's not even half of what I would need right now. The surgeon that I saw is not the one who did my surgery, and didn't even have to look at my pouch to figure out what was wrong.

The surgeon who did to my surgeries, I didn't want to see, because he doesn't listen to me and blew me off with my concerns. I don't even know how long I have been suffering with this, but it is at LEAST since this past June, which was when the pain started in earnest. 

I definitely plan to take all of the antibiotic. I don't want to take any chances. I can't deal with that pain anymore, I couldn't even move it was so bad before I got the medicine and found that Tylenol helped.

I don't really know how to handle some of this to be honest. The surgeon filled me up with more bullsnot than I've ever dealt with before. Told me that I'd be perfectly fine, ought to be playing basketball, heal completely in a week. He also had results from a CT Scan from the same hospital that said something happened that he said was impossible to happen.

None of it was true. I don't trust him even if he did save my life. He doesn't listen to me and now I'm stuck with him. I was also recently told that people scuba dive with conditions like mine. I should be fine. From the time I got that stupid flu shot that triggered the UC that's nearly killed me dozens of times in the last ten years or so, and even now, people just disregard, underestimate and brush off everything. I don't mean to rant or whine, but it does get a little wearing when no one will listen but for those that have seen it for themselves..

I really do appreciate the advice, and will try to keep up on everything.

Do you have a general practice doctor that you can go to and trust?  He / she can get you through simple health issues while you only need to see your surgeon once a year (or so) for the more thorough pouchoscopy exam. I go to my GP for bloodwork (which is sent to my pouch surgeon so he is updated), flu shot, joint pain, whatever, and she watches over my general health. I see my pouch surgeon only for pouchoscopy now. Keep adding change to the bowl of silver. You think you don't have much in there now, but one day you'll be surprised. I hope the medication you picked up has helped. 

My PCP treats my pain.  I take hydrocodone when needed.  (And no I haven't become addicted.) Surgeon's and GI's don't take care of the pain management as it requires follow-up appointments, in my case anyway. I wish we could take ibuprofen as it worked wonders before I found out I had UC.

I do have my primary care doctor. He does my general stuff only though. I still see my GI specialist, and am going to have to see the surgeon still. My Primary somehow isn't allowed to prescribe controlled substances due to some sort of state law thing. I'm allergic to opiates, so I don't see why I couldn't have the Codeine that really helps my pain wonderfully. I don't get addicted to medications, but I can't even have a good panick medication from my Primary. But I have to call my GI again, and now that my Medicare is fixed as of today, I'm not worried about appointments or medicines anymore thank Gods. Things are slowly straightening out. I still wake up in pain in the morning, but it's not nearly as bad as it was. So it's an improvement. I've been taking Extra Strength Tylenol for pain right now, as before I was on Ibuprofen, which might have made this worse since I was taking it three times a day every day since mid June. Improvement is slow, but anything is a good thing to me.

SEIRLA, codeine is an opiate, so whatever it is that you are allergic to (or unable to tolerate), it isn’t “opiates,” (though one or two specific opiates might not agree with you).

Well I learned something new today. I don't know why a doctor would tell me that it wasn't an opiate when it is. I even googled it just now. Morphine, Percoset and Vicodin I am allergic to. And I'll never touch Oxycontin because I'm pretty sure it would hate me too. So far, the only narcotic pain killers I'm not allergic to are Demerol, Dilaudid, and the Codeine. Which upon googling, I find that  those are all freaking opiates and doctors have lied to me. Good to know that it's not all opiates that hate me. But I don't really know what's what with these stupid allergy lists anymore.

If your GI or surgeon won't prescribe you pain medication then could you go to a pain management specialists.  My dad lived in a state that required more frequent medical appointments to receive his pain medication and his PCP quit prescribing them.  He went to a pain management doctor.  Could it be you live in a state that has a similar requirement?

I'm not sure if I am or not. I could google it though. It's a recent thing if I am, because I used to need the Codeine for my cramps each month, where now I just suffer through it. I'll have to have either my Primary or my GI refer me if my GI can't do it. It's really not that big a deal so long as I can actually get to those appointments.

If you can get by with treating the pouchitis, as the underlying cause you are better off. I would suggest a referral to a rheumatologist, as it appears you may have enteropathic arthritis. This approach may get you better care for your arthritic pain. I have enteropathic arthritis and I am treated with a team approach with my primary MD, rheumatologist, gastroenterologist, and pharmacists.


Do you really think that I've got arthritis? It has crossed my mind, but there's no suspicion of it from my doctors. I haven't asked about it though either. I'd like to find out, I just don't know how to go about it.

Add Reply

Copyright © 2019 The J-Pouch Group. All rights reserved.
Link copied to your clipboard.