Pouchitis...very frustrated

I have been on antibiotics for 17 years, rotating various antibiotics including cipro. I do not even remember what it was like to not take antibiotics.

You may want to try xifaxin, flagyl and augmentin. The cipro works well in tandem with flagyl.

It's possible you will need to take antibiotics chronically as I have for 17 years, but maybe if you stay on them for 2-3 weeks that will do the trick.

I have been on xifaxan for about 4-5 months. I was thinking pouchitis was something you got and then it goes away with meds. I didn't realize it could be so chronic. Thank you for your advice. I will be talking with my doctor.

It is chronic in many cases. In my case the antibiotics merely serve to keep the pouchitis in a "simmering state." If I go off antibiotics, it rapidly goes to a boil and I am dead meat. I am not able to get off for 17 years but my quality of life is pretty decent taking them. Much better than when I was battling UC.

Another chronic pouchitis jpoucher here who has been on antibiotics consistently for 16 months since takedown. You could also have cuffitis if you have anal pain. When I have cuffitis I feel as though someone is putting a boot up my back end.

thanks everyone. I have simply been emailing my doctor. I think it's time to go in and see/talk to him.

From a guy that suffered with severe chronic pouchitis for almost 2 years, I've tried every antibiotic, procedure, treatment etc and nothing helped. It was worse than having UC. I now have an iliostomy (my surgery was in March). After healing, which took about a month, I'm living a normal life, eating and drinking what I want and for the first time, not suffering. It's an adjustment but with acceptance, has changed my life. I check out the pouchitis chats knowing if your condition is chronic, you should consider the bag. There is no magic pill to make chronic pouchitis it go away and in my case at least, life was passing me by. I am drug free. Antibiotics are not good for anyone to be on that long. It's not healthy. I don't want people to be afraid of the bag. No one knows I even have one except those close to me. I'm happy to answer any questions. I am a success story and don't want anyone to suffer like I did.

Like disc jockey I went back to the bag after 3 1/2 years of pouchitis. While many people do take antibiotics indefinitely, that was not how I wanted to live my life. I wanted children and cipro is not allowed during pregnancy. The drugs were making me lethargic and I still had to alter my life even with the drugs. Ileostomy has freed me from all of that.

11 years since I got my ileo and never a moment of regret. Two beautiful children 6 1/2 and 4.

Not saying you need or want an ileo now, just something for you to keep in mind should you find antibiotics don't work for you on any level.

KD1966,

I just got over Pouchitis and mine lasted too long, more then 2 months, although I did not get treated right away. Cipro with flagyl worked best for me.

Also, keep drinking plenty of water. On this site, many informed me to keep hot liquids in your body and use a heating pad at night. I did that and it helped me out.

This site has been a Godsend for me.

Rocket

I handled chronic pouchitis, resulting with bleeding ulcers, for many years. The doctors had me on and off of cipro, which worked until I completed the prescription and then it promptly returned. I recently visited a homeopath and began my remedy. After one day of using said remedy I already saw the results that only occurred after a weeks worth of cipro. I found out that my pouchitis was caused by a chronic bacterial imbalance in my body in which the remedy cured. I was skeptical at first, but now I am completely sold and would highly recommend it to others. You don't need to suffer.

iDesign,

Would you be so kind as to share what that remedy is? What do you recommend?

Thanks!

iDesign,

I second Jon1985 question.

I am seeing a doctor next week who is doing a breatherlizer test which will take 3 hours to infomre me what bad bacteria is in my body.

So I am interested what you are doing for Pouchitis. I think that would be most useful for most of us on this board.

Rocket

Absolutely! I am on day 4 of my homeopathy remedy and I feel great, it's pretty unbelievable really. As I may have mentioned before, I have had pouchitis 24-7 for the last 20 years (no joke); only to get relief from cipro and then only for a few short days before it returned. The gas, diarrhea, and bloating is 95% gone, I can eat pretty much anything with no problems, and the ulcers no longer bleed. Sadly, I really had forgotten what it feels like to feel good, since pouchitis had become 'my normal'.

In addition to the remedy making a world of difference on my pouch, it has also helped with many other every day minor annoyances that I never knew were a 'thing'... like irritability, feeling very tired midway through my day, and my cold intolerance (I was cold when no one else was). The homeopath said these are all symptoms of the bacterial inbalance in my body which was causing the chronic pouchitis and also my seasonal sinus infections.

I am hopeful that my body will be able to sustain everything post remedy, but only time will tell. However, this has truly been a phenomenal experience for me thus far and would encourage others to try it. I found it very affordable, compared to traditional healthcare ($150.00 for the 3 hour consultation and $20.00 for the large remedy).

As far as for the kind of remedy, it is all based on your personal consultation with a homeopath. Here is how my experience has gone thus far. The homeopath sat with you for 2-3 hours while I chatted about everything there this is that is me. Following my consultation (approx. 2 weeks)they researched the data they have collected from me, as well as what they took away from our visit and then formulated the perfect remedy for me. Lastly, they sent it to a homeopathy pharmacy to prepare it for me. How the remedy is taken, first seems hocus pocus, but you can see how the steps change the remedy during the process. At first I figured, what do I have to loose, it'll either work or not work, so I played along. From here forward, after about 1-3 weeks on this remedy, I will have a follow-up session to discuss how it is working for me and so they can determine if the remedy needs to be modified or increased/decreased in any way. After some point, I will stop the remedy and only take in the event that the pouchitis returns. I have read that some have one or two relapses before it completely disappears. Something that happened with me is that there was a 2-3 hour 'cleansing' period in which everything pretty much went right through, however, after that is when I saw the outstanding results. I have read that this is normal, gets a smidge worse before better... forcing your body's immune system to kick in stronger to heal itself. Again, nothing that even came close to affecting my day, just a mild annoyance.

I hope this update answers some of your questions. Please feel free to ask me further questions as I know how hard this all can be.

I'm new at this site, so please forgive my delayed response.

IDesign,

God Bless you for this information. That is something I intend on doing.

I hope there are others who see this post know that there is some add'l hope.

If not, maybe it might be a good idea to start a new thread and just copy and paste what you have stated.

It would be a shame that not every has had the opportunity to see this if they do not know its there.

Rocket

idesign,
Do you know what the actual contents are within the homeopathic remedy? I am anxious to do anything possible to rid me of chronic pouchitis and continual antibiotics without having to remove my pouch.

Rocket,
Please report back your results on the breath test as I want to request this from my GI.

Jeane,

My GI did not request this, I actually went to a GI/Nutrionist over a month ago but had to postpone doing this as I was having a terrible time with Pouchitis and was on Cipro and Flagyl.

Then for some unknown reason, she either quit or was fired. I never did find out why. Anyway, will be having this test done tomorrow and had a blood test taken over a week ago for 11 different things.

In any event, I will let you know.

Rocket

Thanks Rocket,

Let me know the details of the test and blood work. I too am very frustrated with this chronic pouchitis and never feeling well and being poisoned by antibiotics 24/7. If I miss one dose I am dead meat with urgency, frequency, butt burn and the like. I also have nausea at times.

I am doing some research on leaky gut syndrome and it may be something you want to look at as due to the pouchitis we may be experiencing this. I am going to see a natural path also.
I will let you know what my research shows as it is all natural remedies to help with the inflammation.

How long has you had your pouch? I have had pouchitis since takedown 26 months ago and have been on augmentin since.

Olive Oil has had very good results with a modified Paleo diet, which basically follows the notion of Dr. Shen, that high protein low carb diet is helpful to pouch function. Since it is probably good for the general public, why not pouchers too? Our (American) diet tends to be WAY to focused on carbs, and leads to all sorts of problems.

http://j-pouch.org/eve/forums/...921/m/2967089816/p/1

Jan

Jan and Jeane,

Thanks for the info. I love Olive Oil and I saw a Nutrioist who said the same thing regarding high protein.

My Urilogist told me that because I develop so many Kidney Stones due to too much Uric Acid, I should be on a low protein diet. Last Thursday, I had a 2.2 centimeter Kidney Stone blasted. Six stone left. However, I laughed when he told me to be on a low-protein diet so I just told him I will choose my poison and that would be Kidney Stones.

Kidney Stones don't scare me and I just do the best I can. I don't let this depress me and even during the procedure, I took this with a grain of salt and made the doctors and nurses laugh.

Rocket

quote:

I love Olive Oil

The poster or the cooking oil or the character from the Popeye cartoon?

DJBHusky,

That was funny response.

I think its the Popeye cartoon. I guess our Colon must be Bruono or is it Bluto?

Rocket

Jeane,

Had my Breathalyzer test this morning which takes a boring 3 hrs to do. Every 20 minutes you breath into like a small ballon. I won't get my results from my test until I see the doctor next month.

Rocket