I don't know about that. one of the articles that was posted about pouchitis that I cannot seem to relocate, it was authored by Bo Shen et al. seemed to address the fact that pouchitis is actually a much more complicated issue that what was originally thought. seems from reading other's experiences here, that while my dx was changed clinically to crohns and so I now get crohns meds, that others haven't changed their dx but are treated with Remicade, etc ie crohns meds for chronic pouchitis.

my observation is that docs have different routines with abx tx for pouchitis. in the past my old doc in nyc used a weeks worth of Flagyl. Here in ca, my directs me to take it for 10 days. I have seen other patients on longer terms, and sometimes both Cipro and Flagyl together. I suppose the thought process might be to be sure its killed. but I hear your hesitation. other patients and I did it before I swapped out for the biologics, rotate out abx monthly, for me it was 3 different abx, exchanged and rotated.

how can I connect with the people I see on here who have the exact same thing I have.? familial poloposis with j pouch now bad case of pouchitis...

Tyler, I'd be a lot more nervous about leaving untreated ulcers in my pouch for that long than I would be about treating them with antibiotics. You're most likely to do fine on the antibiotic.

palm55152 posted:

how can I connect with the people I see on here who have the exact same thing I have.? familial poloposis with j pouch now bad case of pouchitis...

palm there is a FAP dialog or topic, I just saw it, not sure how so I cannot easily explain it, but it does exist. Jan created last year.

There is an FAP Forum, but I don't see anything about pouchitis there.

https://www.j-pouch.org/forum/fap-forum

There also is a Pouchitis Forum.

https://www.j-pouch.org/forum/pouchitis-1

Jan

Temoty- I have taken rotating antibiotics for over 20 years, continuously without respite, to treat pouchitis, so the answer to your question is a resounding no.  I would be much more worried about that inflammation in the J Pouch and not treating it adequately.

I saw some members who have the same thing--dx familial polyposis but I don't know how to reach them or even if I can. jan you have been a great help--still fighting the fight. picked up rx for Percocet yesterday--hope this helps more--also am more aware of my diet then i was when this started back in jan--hard to believe it will be a year and went undiagnosed until a few months ago..ty

Pouchitis is quite uncommon in those without IBD. SIBO (small intestine bacterial overgrowth) is fairly common though. Since you mentioned the skin rash before, I now wonder if there is a cleliac disease/gluten intolerance connection for you. It came to mind after Mysticobra (Richard) posted about his skin eruptions following his surgery. https://www.j-pouch.org/topic/h...moval-of-their-colon

If you want to send a message to a member, just click on their screen name. A drop down list will pop up. Choose "Start Private Message." Prior to the new formatting, it was called a private dialog.

Jan

well they kept thinking I had shingles(in a bad place)   finally after some surgery and ct I was diagnosed with this pouchitis. but 30 years ago when I had colon ca I developed a bad infection that took many surgeries and 2 years to fix. that area is what hurts me.. whenever I play tennis or any sport--the red ulcer things come back but don't bother me and only a few are there. I keep taking breaths  but so far I just have to fight the fight and it gets expensive  lol  ty again  just talking with you helps me

thanks for all the advice. I'll go ahead and start the CIPRO as soon as I stop the CEPHALEXIN.

I am replying to the person who has FAP - there is a group on here of FAP people.  I am one of them.  I've had pouch for 30 years.  I'd be glad to hear from you.  I know it can be so depressing at times - lots of ups and downs with the pouch.  I've had many problems thru the years - but also many times when things were good.  It's never as easy as it was pre pouch - I can't even remember what that was like!  Anyway, please write me if you need to vent or have questions. 

angie I am JoEllen  so nice to meet you. what is fap?? I had colon ca at 40..am now 70..first time with this pouchitis stuff so very depressing. what do you know about joint pain and cipro/flagyl??  I am a tennis/pickleball player. I played the other day (with pain pills of course) and had no problem.now I have awful joint aches..

Hi JoEllen.  First off - if you are playing tennis/pickleball at 70, I'd say you are doing amazingly well.  I wish I could help you regarding joint pain and Cipro/flagyl - one thing that has not gone yet is my joints! Jan may have ideas for you.  She is the moderator and really knows all the ins and outs about just about everything to do with what we are all facing.  If she doesn't know, she helps point people in the direction of what questions to ask or where to find more information. 

FAP is an acronym for familial adenomatous polyposis.  It is a syndrome which is autosomal dominant and is inherited as is characterized by the early onset of hundred to thousands of adenomatous polyps throughout the colon.  My father's mother had it and she and 10 siblings died from it. My father was diagnosed with colon cancer at age 23. He had part of his colon removed...He was scoped every 6 months for many years and had polyps removed - no anesthesia! 

At age 50, he did the j pouch. It was pretty new at the time.  My sister and I were both tested and both have it.  We got our j pouches at age 18 (sister) and 23 (me). FAP is one of those syndromes that not many people know about - and of course, there are so many things like this - rare things that don't make the news.  My father is now 78 - almost 79.  He never dreamed he would live this long.  His brother lived to age 90 - his brother did not have FAP - nor did his children.  My father grew up feeling that FAP was a death sentence - as that was all he saw - one aunt or uncle dying of this at very early ages.  He has had cancer come up again in his pouch...this was about 5 years ago - they were able to excise it and he is doing well.

That's a bit of our FAP story. I'm so sorry about your joint pain and I hope others on the forum may have some ideas about it and what you might do to cope.  I am so inspired you are playing tennis!!  I am definitely not active enough - used to be a runner. I am a walker now, but I need to walk more.  So, you inspired me to get out there and do it!

Cipro I think can cause joint pain. I believe, Jan, would be able to confirm, that its in the class of antibiotics that potentially risks damage to tendons/ligaments. Flagyl potentially can cause neuropathy.

Yes, Cipro is associated with tendonopathies, and specifically Achilles tendon rupture. It is also dose dependent, so the higher the dose you are on and longer duration, the more likely the side effect will occur. Flagyl can cause joint pain too, but the main side effect (other than the metalic taste and nausea) is peripheral neuropathies (tingling and numbness in the hands and/or feet.

At age 70, some joint pain with very active endeavors is par for the course. The older you get, the more important it is to stretch and warm up before exercise. You may have some typical osteoarthritis going on that only causes you problems with this sort of exercise. I have enteropathic arthritis and am 60. I have not been able to play tennis for 15+ years because of it. If your pain is more activity oriented I would think it is more likely osteoarthritis.

Being on Cipro might be giving you just enough effect to make it more apparent. If  you were having a real drug side effect, it would be more constant, I would think. Still, since you are troubled by this, you definitely should discuss other options with your doctor. I am still confounded by the fact that you are on long term antibiotics for non IBD related pouchitis. I would be concerned about what the true cause of your pouchitis. Did you have radiation treatment for your cancer? If so, there may be damage from that.

Jan

hi  it is so nice to have this group. my career was in hospice-so I was 40 and working when I had colon ca..angie--I know it is familial but the strange part is it only came out in me--no one else in my family had any cancer--then I did have 2 knee replacement,double hernia surgery and on and on it goes.because of where my problem is I had trouble even walking. now with the help of pain pills I am much better. itake this f/c 500mg twice a day--I am laughing at myself as I write this because I have been bumping into walls--yes I know the wall is there but I go into it anyway--there has to be some humor in all of this!! my 96 yo mother was diagnosed 3 years ago with ca of the esoph. well I took over and she is alive and ok--a bit grouchy but..... re chemo etc--no no no never had it and never will. I think that's why I made it to 70. so now I am slower and don't play tennis/pickleball everyday but I do still play a lot of duplicate bridge.. I try to stay busy . sine my colon ca I have al;ways had sleep problems..nice to know others do too--ty all so much  joEllen

by the way-since I have found all of you i can get by for now without the dr..ty

I was on a course of Cipro for a uti.  Toward the end of taking Cipro my dentist found a fistula in the upper palate of my mouth (not related to IBD, apparently) and prescribed Amoxicillin because he can't complete the root canal procedure if the fistula doesn't close.  So.....I've been on antibiotics back to back.  My pouch didn't mind the Cipro.  It is rebelling just a bit on the Amoxicillin.  I've been using Calmoseptine after not needing it for almost 9 years!  Thank God it works for me!  Best wishes!

Yes - this forum is great and I agree - so much good information and no, I don't run to the dr. anymore like I used to.  Obviously, I do go to dr. for check ups and unbearable pain, etc. - but I just figure - I'm older I've had all this to deal with for so long, of course i'm tired.  So many times I would go - oh no! a test would show blood in my urine - this happened twice.  Twice thru the years had cystoscopy? I think that is how you spell it  - where they look into your bladder. That is a very unpleasant test - short but awful.  Well, both times - "all looks great" .  this is one of many examples of this type of thing or some other need for a bunch of testing that led nowhere.  So, I sort of lost faith in spending all that time and money at doctors - unless absolutely necessary. Also, watched my Dad try to get help  - he tried to test for chronic fatigue years ago, etc. - well, they couldn't ever figure out a specific diagnosis. So, he muddled along and worked until age 69.5.  I really don't know how he did it -but he did. I think he had some great secretaries who helped take a lot of load off his plate. (There's a shocker - a female secretary taking care of a man in the work world!) Ya gotta laugh - such is the world and life!

It is not unusual to have FAP only show up in one sibling - are you sure you have FAP? Or did you have colon cancer - FAP is hundred to thousands of polyps literally carpeting your colon.  I'm just double checking.  You can only get it if one of your parents had it.  I think you are doing amazingly well to be doing what you are doing and taking care of your mother.  I know caregiving is extremely difficult - I see my parents getting close to needing more care and I live across the country from them - so far they have said, "no" when asked if they want me to come help full time.  So, will cross that bridge when it comes.  I have truly enjoyed writing to you on this forum - it's helped me tremendously to talk about this with others who truly understand what all of this is like.  I'm so glad you got on the forum and shared your story. 

and I am so glad I found you..i had fap. they said the genes are there but it only came out in me-- lucky me. this is the first time I have had serious trouble(since January) no one knew what to do--the drs. the meds. the expensive creams. the skin area is very sensitive and painful--ok so what else is new-- now I have oxycodone instead of hydrocodone-- both the same for me--but very helpful. I sure hope I don't become a pill popper but whatever works I don't know if I am allowed to give you my e-mail address??  JoEllen

Yes, you can - there is a way to send me a private message - I think.  I have to look around on this as I'm pretty new to the forum, too.  I will try to figure out how to private message you and send you my e-mail. 

I know what you mean about fear of pill popping.  I took dilaudid (sp) - a form of morphine - during all the surgeries for pouch and then during later surgeries (hysterectomy, oophorectomy) and then they botched that surgery and I had to have small intestine repaired where they perforated it.  This is the magic painkiller for me - plain morphine makes me crazy.  Anyway, I've always gotten off of it pretty easily - mainly as I was so afraid of becoming an addict.  If you are in pain, you take the meds.  Then, see if you can get off them (slowly) and see if pain lessens.  I'm sure you have already tried A and D ointment and using baby wipes every time you go. I have definitely been through periods of time when it was awful and painful - but so far it has always gotten better. So sorry you are dealing with the pain - this getting older is really quite something.  We must laugh!

Your story is really interesting - you do have FAP and neither parent had it?  There must be a genetic thing going on here - as in a recessive gene they did not know about or it skipped a generation or something science does not know about.  I would love to write with you more via e-mail to learn more about this. 

I think you live in the UK?  You may not want to say on this forum - but some of your word choices sound like you do.  My family (Dad's side - FAP side) comes from Wales - but has been in America since 1650s - a man came from Wales - he was a minister and one of the founders William and Mary College here in the states.( Maybe we are related! You never know!)  I forget how many generations back it goes - I have the paperwork. The rest of his family stayed behind, I believe. He married someone here. I have always wanted to go and see where that side of the family is in England - on my bucket list if I can ever get to it!

I meant to tell you not to be too mad at yourself about bumping into walls!  I seem to do that more often than not and I am not on any painkillers now.  I think it's just getting older and not paying much attention to what I'm doing. 

Again, I will do some looking around this site and see how to private message you to exchange e-mails.

To send a private message, just click on the screen name of the person you want to message. A window will open with a list of options, including start private message.

Jan

Just to correct one thing about FAP: about 20-30% of FAP cases have no affected parent. This happens when a new mutation occurs, either in a sperm or egg cell, or in an early-stage fetus.

Scott,

This is fascinating to me.  I had no idea about this!  All I had heard was the old autosomal dominant pass on information. Well, that explains a lot.  I never could understand going back generation after generation how this wouldn't eventually cause a die out.  I know it's 50/50 - but I have heard research saying they've shown it's actually higher than 50/50 - you may know about that. I am, as you can tell, very unschooled in science, particularly biology.  Can't remember any of it I learned in college.  My husband teaches physics - but he's not a big bio/neuro type of guy.  Cousin is a neurobiologist - but he does not specialize in this syndrome and I've never wanted to bug him about it.  His side didn't get FAP - lucky side, darn it!

So you know anything about what I explained on another post about my sister's experience?  She had genetic testing in Philly   - according to them (who knows) she did not have the gene marker? mutation? for FAP or Lynch or other syndromes. And yet, she has "FAP" as her colon was carpeted with polyps.  As are two of her kids so far. Is that just bad testing, or do you think science has not caught up in the area of genetic testing for FAP - in terms of blood testing.  I find this very interesting - I suppose it doesn't matter now - but it could matter to future generations.  Anything you know or any articles regarding this phenomenon of "no FAP" shown - yet you have it situation? I am curious.Thnx.

Thanks Jan - I knew I saw this, but forgot where.

Angie, I'd suspect that your sister may be a "mosaic," (though I haven't looked up how common that is in FAP). If the mutation occurs in the egg or sperm cell, 100% of the child's cells have the mutation. OTOH, if the mutation occurs in one cell during early embryonic development, part of the body will have the mutation, and the rest will not. If the colon has the mutation, but the cells being tested do not, you'd see the result your sister experienced.

This gets trickier if other family members are involved, and could be considerably more complicated.

Thanks - ok - that makes sense.  I always wondered about that and so did she.  But, again, in terms of practical matters, still had to treat as FAP no matter what the genetic tests said. thanks for replying

angie I am in usa  here in the US--all I know is that they said it has to be in either mother or father(the gene) but it only came out in me lucky huh. re  the walls  no excuse except maybe the meds. I see the wall. I know it is the wall and into it I go--not today tho..

Oh, please do not post personal info, like email addresses in the public forums! Anybody can view these and there are those who use software to mine such data. best to share this via private messaging.

If you don't know how to edit your post, I can do it for you.

Jan

oh I did not think anyone else would do that because of the nature of the forum  I am so very sorry. yes pls help me to private message. I am going out this morning to try and play some pickleball--joints are better but  I am sure this will take a toll. I just get too depressed when I cannot be outside doing something. I told you I cannot take citapham(for depression I think) so now it is worse...I am taking deep breaths it has to pass soon. a year is way too long to be feeling like this  ty again  J

Palm, I deleted your email from the post for you.

To send a private message, just click on Angie's name (in blue) in one of her posts above. A window will open with options, including "start private message." Just click on that and you will be able to send her a private message that only you two view. You can carry on back and forth as much as you like, or exchage private information.

Hope your pickleball goes well. Personally, I am happy to just go for daily walks outside and do some gardening. I agree that being outdoors helps the psyche!

Jan