Personal Low Point. Help me understand!

So I had my J pouch for 3 years and it worked fine. I always ate and drank whatever I wanted. If I had too much candy, junk food, soda or alcohol then the next 24 hours were bad. I went to the bathroom a lot and urgently but after a day it always passed as I resumed to a normal diet. At one point, at a regular check-up my doctor saw I had pouchitis. I got ciprofloxacin, did the 2 week regiment and badaboom, I was back to normal for months until next time I might have overdone it with dietary junk of some sort.

The year 2018 has been a Low point. I have had to go on cipro before when I had pouchitis but throughout this year the bouts came more and more often. Long story short, now I take cipro for two weeks (and it even takes longer to kick in than before - at the beginning I was going to the bathroom like a pro within hours) and within a few days I'm on the crapper constantly until I give up and start taking cipro for two weeks.

The reason I haven't been able to take any other course of action than cipro has been because I have been traveling the world most of the summer. I have not been able to get a hold of my doctor at home. 

I have had rashes this year in different places which I figure is a side effect of the constant bombardment of  antibiotics. The rashes went out of control a couple of weeks ago and something made me believe it was Candida. So I went to a back alley pharmacy i Taiwan and got a fungal cream and it worked like a charm on my rashes (but naturally it did nothing with the pouchitis). So maybe the pouchitis is fungal? 

Of course during vaction times it is hard to stay away from junk food and alcohol. But it really bugs me that I was able to handle it just a year ago but now I think it might be what kick starts the pouchitis again everytime after just one course of junk or one drink of alcohol. Can somebody explain this to me?!

So right now, my main issues are:

  • Rashes... my whole body is itchy. The worst is probably the butt... whatever I do; fungal cream, my usual go to barrier cream, lidocaine cream or any type of cream has no effect and it has been weeks now.
  • Recurrent pouchitis - comes back within a few days, but the nature of it is still unknown because I have not been to the doctor...
  • Diet seems to matter a million times more than a year ago (seriously WHY?!)
  • Anxiety and worry; can the doctor do anything to kick recurrent pouchitis, besides experimenting with different antibiotics? I find very little about success stories on the web  

 

Long post, but if somebody takes the time and reads it and offers some useful advice I will be ever so greatful!

- A fellow J-pouch warrior from Sweden

Original Post

Fredrick,

I had the same issue as you back in 2010. You can’t stay on any one antibiotic for a protracted period of time, particularly Cipro. Cipro is especially effective at killing skin bacteria and you must rotate off of it or you WILL eventually fight fungal infections. The fungal infections are due to fungi operating to multiply and take over the empty spaces left in your anatomy by dead bacteria. This usually happens in the skin first. 

The raging pouchitis likely isn’t a fungal infection but rather a bacterial  inflammation that needs to be treated with another antibiotic. Due to a resistance to Cipro by the Pouch bacteria or other bad bacteria not being worked on by Cipro. You may have a bacterial overgrowth situation.

When I had the mother of all yeast infections in 2010 it started as a rash in my legpits and spread down my legs. Antifungal creams don’t help because they have water. Fungal infections are nourished by moisture and darkness. Do the following and you will knock it out within 3 weeks:

1. Get a prescription for Difllucan- antifungal pill.

2. Get a prescription for Xifaxin- antibiotic that stays in your gut. This will allow your skin bacteria to replenish and work on the bacteria in your Pouch.  Then rotate onto another antibiotic like augmentin or tinidazole before returning to cipro.

3. Use a blow dryer after showering on all areas of body where rash appears and especially anal area, legpits and armpits.

4. Apply Zeabsorb AF (antifungal powder) to all areas where rash appears at bedtime. It’s available over the counter at most pharmacies.

5. Stop applying all creams to your body. They have water and nourish a yeast infection. I spread the yeast infection by putting Desitin on it. You are feeding it the moisture that it needs. Stop feeding the fungi!

6. If possible get in the sun or a tanning bed and lightly expose the fungi to intense light. They need darkness. Cipro will have desensitized your skin to sunlight so be careful and don’t overdo it. But it will help.

Do the above and you will knock it out in 2 weeks.

My rash was all over my legpits, scrotum and legs and groin and I completely was better in 2 weeks.

Going forward rotate cipro, Xifaxin, augmentin and tinidazole for antibiotics every 1-2 weeks and if still you have Pouch symptoms get a biological drug (Remicade, Entyvio, etc.). It sounds like you may need to be on a biological drug eventually. That’s the next line of treatment after antibiotics.

Good luck!

I have had the same problem for some time now. When I first had my jpouch, I was 18 and did not have the slightest regard for diet and began to drink alcohol heavily. Then around 2 years ago ( at the age of 31) I began having all of the same symptoms you described, in addition to having my eczema flair out uncontrollably. After flagyll antibiotics I was able to get things under control. I have come to the conclusion that my body has become much more susceptible to inflammation now. Your body needs to maintain a balance in order for there to be peace in your gut. This unfortunately means staying away from booze and too much coffee.  Also, chlorophyll from green leafy vegetables is your friend!  I have preached it before, this will help get you on track during a flair up. I hope this helps! 

Some of us develop antibiotic-dependent pouchitis, and just have to stay on antibiotics. Ideally you can find several that work and rotate them in 2-3-week intervals. It’s very hard to do this without several doctors appointments over a period of time (or at least regular communication) and I can’t think of a good way to do this while traveling the world.

It’s possible that you don’t have antibiotic dependent pouchitis, but just don’t get a complete resolution from Cipro any more. In that case another antibiotic (Flagyl, Xifaxan, whatever) might properly resolve your current pouchitis and get you back to your happier state of health. It’s sure worth a try.

Although CT presents fungal infections as a certainty, they are just one possible side effect of Cipro. I’ve been lucky enough to avoid them in spite of years of continuous CIpro and Flagyl treatment. Keeping the skin dry should help a lot.  I would have preferred to rotate antibiotics if others had been effective, but the unchanging therapy works just fine sometimes. 

Thanks everyone for your helpful replies! 

I'm going to the doctor on Wednesday. They'll do an endoscopic examination (hurray...). They will probably see that it's inflamed. However I will push for resolute treatment of the of what I think is a yeast infection.

A question about your experiance with antibiotics. The first one I tried, years ago, was Flagyl and it did not work at all. Simply didn't do anything with my pouchitis then. Cipro worked well. Out of curiosity; has anyone had the opposite? Cipro useless, Flagyl lifesaver? 

Xifaxan sounds like a miracle drug, without having tried it. Strong antibiotic that works exclusively in the gastrointernal tract, Amazing - what's the downside? What are your experiances with Xifaxan long term? Can it loose effectiveness over time?

P.S. to CTBARRISTER - special thanks. Your post sparked enthusiasm in a moment when I needed it the most! Also very informative  

Xifaxan did nothing for me, and it’s extremely expensive. For some folks it’s very helpful. Any antibiotic has the potential to lose effectiveness over time.

Flagyl did nothing for me alone, but when Cipro alone stopped doing the job, adding Flagyl  was exactly what I needed. I’ve worked to find the lowest effective dose of both drugs, and they have worked well for years. I had already learned that none of the usual single antibiotics for pouchitis rotation other than Cipro worked for me.

When you say rotate, is it the doctor's instruction? Do I have to come upp with an antibiotic rotation plan or will the doctor instruct me?

How does a typical cycle of different antibiotics look? Length of treatment, downtime between types of antibiotics, etc.

My doctors basically have told me to rotate when the time is right but usually around 2 weeks or so. I have antibiotic dependent pouchitis which means if I go off for like 5-6 days things start to get really hairy. So I am on a permanent rotation since 1995. Along the way I made mistakes and learned from them. I should also note that with Cipro I get what I like to call “false start” fungal infections. I will feel itchy and maybe see a red patch in my armpits or on my legs and then it will be gone. Usually your body can fight it off. When I had the really bad fungal infection in 2010, coupled with a massive breakout of warts which are a viral infection of the skin, it was a perfect storm of factors:

1. 1000 mg Cipro daily and 1000 mg flagyl and no rotation for months- significant bacteria kill.

2. 9 mg entocort - further suppressing immune system

3. Fatigue/stress 

4. Poor shower hygiene which I define as not using a blow dryer where the sun doesn’t shine and just toweling dry- that’s not gonna cut it when you are itchy.

Since I implemented assiduous antibiotic rotations, scrupulous showering hygiene, and started taking Remicade (which enabled me to cut dosages of antibiotics in half), I have had no fungal infections of any significance. If I see a red patch I douse with Zeabsorb AF powder and it’s done before it really started. It’s very rare I even see that now since lowering Cipro dosages after starting Remicade in 2015.

BTW any dermatologist can confirm a yeast infection in 30 seconds by scraping your skin and looking at it under a microscope. It’s like 7th grade biology class revisited. He confirmed mine on the spot.

You might want to get a scrip for Xifaxin. Always rotate into Xifaxin after cipro. It’s a no brainer. Xifaxin stays in your gut, it’s not systemically absorbed, so your skin bacteria can repopulate for 2-3 weeks and then you worry even less about fungal and viral skin infections such as yeast and warts, because the skin bacteria repopulate and crowd out the other less desirable microorganisms in your skin that cause the bad stuff when they overpopulate. 

It’s definitely trial and error. Some antibiotics work better than others. I have rotated cipro, flagyl, augmentin, keflex, tinidazole, Xifaxin and others. Augmentin cannot be taken while I am on Remicade so I am now rotating cipro. flagyl, xifaxin, and tinidazole.

So say I rotate like this:

- I something else than Cipro for two weeks. 

- I pouchitis comes back in a few days/weeks/months

- I take different antibiotic for two weeks

- Pouchitis!

- i take a third antibiotic for two weeks

- Pouchitis!

- I take that first antibiotic for two weeks, etc.

Is that how it works? Or are you guys Always on antibiotics? Or do you start the next round of treatment when pouchitis comes back?

Ditto/ +1 on everything Scott F said. I am always on antibiotics. There is no waiting for the pouchitis to come back. I don’t wait to get sick. But in the past I did try to go off and use other treatments. Didn’t work. It’s like putting your hand on the hot stove and getting burned. You stop touching the hot stove because it burns. So I don’t go off antibiotics because I know what will happen if I do.

I should note that while the pouchitis doesn’t come back as long as I am on antibiotics, there is always inflammation in my Pouch. One of my GIs describes it as “simmering.” It’s been kept that way since 1995. That is a long time.

So I went to the doctor today.

He had a look inside, and to my surprise the inflammation was just moderate in his words. I was ready to learn that my pouch was falling apart.

I pushed for diflucan but he would not prescribe it as he is a GI surgeon and not a dermatologist. He said I should go to a dermatologist myself and figure out if I even have a fungal infection because diflucan is for serious infection of the whole body... sigh.

He did however give me Xifaxin. In his opinion it too kills skin bacteria but what do you guys think? 

He also said that my awful ass-scratching butt burn from hell might be from excessive skin-irritating ileal content due to pouchitis. It might go away during course of Xifaxin treatment. God do I hope he's right... I cannot stand it!

CTBarrister; antibiotics since 1995! That is truly amazing... they should study you haha...

So what would you say that your biggest issue is with having a J-pouch now, now that pouchitis is pretty much under control? The question goes to Scott F also.

Fredrick,

Xifaxin mostly stays in the gut and is not systemically absorbed, so when your Doctor said it kills skin bacteria too, I must ask if you checked to make sure he has a medical license because he ought to know what he is prescribing:

https://en.m.wikipedia.org/wiki/Rifaximin

“Because Rifaximin is absorbed poorly, most of the drug taken orally stays in the gastrointestinal tract where the infection takes place.“ (see above link)

Go to a dermatologist and have a scrape taken of your skin and if it’s positive for a fungal infection you may be given diflucan. As I noted above my fungal infection was severe and all over my legpits and groin. It was spreading and out of control and I was given diflucan and diflucan kaboshed it big time in two weeks. It’s also amazing to watch a massive fungal infection on your body die. It was like rubbing death off my skin every day. Sort of like peeling skin but more of a powder-like peeling sensation of death. I felt like I was washing death off my legs and groin for weeks.

You asked what my biggest issue is with the J Pouch. I don’t have any big or biggest issue. I did have my annual scope today and my doc said it looked better than last year. I have a bit of inflammation at the J Pouch inlet (which I always have) but otherwise everything  looks good. So I don’t have any issues at the moment.

Fredrik posted:

CTBarrister; antibiotics since 1995! That is truly amazing... they should study you haha...

Back in 1995 when I embarked on this 23 year journey of chronic antibiotics, I asked my then gastroenterologist, probably the best J Pouch expert in New York City at the time, this question: “can I be on chronic antibiotics long term, for like the next 20 years?” 

His answer: “you’re the Guinea pig.” He went on to explain that because at that time treatment of chronic pouchitis was fairly new (Pouches started being done en masses in Mount Sinai Hospital in NYC in the late 1980s), there were no long term clinical studies. 

So it’s now 2018 and I am still taking antibiotics. But I have learned a few things about how to treat the Pouch beyond that- with diet, and how to manage side effects, one of them being yeast infections which I discussed in this thread. I developed my own protocol and it works for me.

Hi, Fredrik, see if cutting back on the candy, junk food, soda will ease your pouchitis. Eventually you might have to cut these things entirely from your diet. Sugar and j pouch don't get along. You might miss the candy and junk food and sweets, but your pouch will be healthy. It's hard, I know.

Frederik, like CT I generally don’t have any pouch “issues” at all. I’m a little embarrassed to admit I havn’t been scoped in years, and I haven’t had any symptom-related reasons to motivate me. There’s a bit of fussing to keep it that way (two antibiotics, psyllium, VSL #3 DS, Lomotil at bedtime, installing a bidet, emptying before going out), and some people might consider one or more of those to be a big deal, though I don’t. I’m not delighted to be on the antibiotics, but I’m tolerating them just fine, and they are worlds better than pouchitis. My breakfast and dinner prep is a little bit of a production, since I mix the VSL in yogurt, and sometimes that’s a nuisance (e.g. coordinating with others, going out to eat without going home first, traveling), but I make it work - it’s just part of my life. I try to arrange for a refrigerator when I travel, for both the VSL and the yogurt (if I’m able to buy some).  I’m pretty careful to stick to these minor inconveniences within reason. Everyone is different: I tried eliminating carbs, and I found that to be a very big deal, so I was sort of glad when it seemed to make no difference for me.

CT is pushing the innocence of Xifaxan harder than I would. It can sometimes have plenty of side effects, including rash, itching, and a dreadful dermatitis. In most cases it’s very well tolerated, though. It also did nothing for my pouchitis.

It's interesting to hear about your life with a J-pouch; I recognize so much from my own life!

I got Xifaxan and it works well on my pouchitis! So that's great. Now I just have to convince the doctor to prescribe some other antibiotic too to rotate with next time I see him.

I did see on the forum that people talk about how expensive Xifaxan but Jesus I couldn't imagine! It's equivalent to 300 USD for 56 pills in Sweden. Fortfunately for me the government subsides medicine costs (and other aids such as stoma bags etc.) for everyone. So there's a cap of about 200 USD per year per person that you have to pay yourself and everything that exceeds it is paid by the government. So say I take a couple of rounds of Xifaxan per year it can easily cost more than 1000 USD. That is 1000 USD that Big pharma extorts mostly from the government. I do know that there are medicines that cost much much more but still... this is an antibiotic, no custom made miracle drug. I have no words...

It still doesn't seem to have solved my butt burn though but we'll see what happens after two weeks of calmer bowel movements. I have a theory. I have suspected the irritation to be because of fungi, ileal content but maybe it's nerves?

I remember my first surgery, my total colectomy. When my scars were healing they eventually started to itch and tickle. I was told it was the sensation of nerves growing back together after being cut. So a couple of weeks ago, when I was in Japan I had a some butt burn because of pouchitis, many bowel movements and many wipes. I was very soar to the point where water would sting like hell. The reason I mention that I was in Japan is because I learned that from trying the water spraying function on one of those super hi-tech Japanese toilets form the future. Shower water would also sting. So maybe the skin was very raw to a point where the nerves would have been damaged. In this scenario the nerves are now growing back and that is what causes the itching... 

I know. VERY far fetched... but maybe? What do you guys think?

P.S. many thanks to everyone on the forum who's there for anyone with J-pouch related questions! This means so much for me and I am certain that countless people have found important answers, guidance and encouragement in times of need and difficulty.

Winterberry posted:

Hi, Fredrik, see if cutting back on the candy, junk food, soda will ease your pouchitis. Eventually you might have to cut these things entirely from your diet. Sugar and j pouch don't get along. You might miss the candy and junk food and sweets, but your pouch will be healthy. It's hard, I know.

Yes I know... Deep down I know it's the key to a substantially healthier GI tract even when on antibiotics. But like you say - it's hard. It's a lifestyle change.

Fredrik,

Xifaxin is indeed one of the more expensive antibiotics out there. Fortunately I have had private insurance but my copays on a 30 day supply have been as much as $40. It’s a highest tier copay drug on most US private health insurance plans. It’s good that it is working and in 2 weeks your skin bacteria will replenish to the point that any lingering fungal infections, if in fact you have one, will be combatted by the rising bacteria count in your skin.

Regarding butt burn: I had it for around a year after takedown and never since- so now about 25 years since I had the post takedown butt burn. I spoke to a knowledgeable pouch expert in New York City who told me that after colon removal, stool has higher alkalinity in it due to there being no colon to regulate the pH of the stool. Why it goes alkaline rather than acidic I don’t know. The Pouch eventually adjusts and either regulates the pH of the stool well, or in other cases, not so well. That seemed like a good theory because mine was present persistently after takedown and then nonexistent, as I said, once I was about a year out.  It just petered out and seemed like something inside me was adjusted.

Very occasionally if I eat something super  spicy I might feel something but generally speaking I have no issues.

Regarding sugar I do believe it can contribute negatively to butt burn and certainly creates a bacterial feeding frenzy that you ideally would like to control if you are dealing with Pouch inflammation. On rare occasions when I consume some sugary foods there is a noticeable difference in my Pouch function which is not good.

Good luck with getting over the B.B.

Fredrik posted:

So I went to the doctor today.

He had a look inside, and to my surprise the inflammation was just moderate in his words. I was ready to learn that my pouch was falling apart.

I pushed for diflucan but he would not prescribe it as he is a GI surgeon and not a dermatologist. He said I should go to a dermatologist myself and figure out if I even have a fungal infection because diflucan is for serious infection of the whole body... sigh.

He did however give me Xifaxin. In his opinion it too kills skin bacteria but what do you guys think? 

He also said that my awful ass-scratching butt burn from hell might be from excessive skin-irritating ileal content due to pouchitis. It might go away during course of Xifaxin treatment. God do I hope he's right... I cannot stand it!

I was in the same boat this summer. Xifaxin for a month. Helped a bunch and afterwards was off antibtioics for a good 2 months before another flare. Also had the worst embarrassing diaper kinda rash normal doctors were little help with. GI doc finally prescribed and antifungal cream that helped but since running out I’ve learned cleaning your bottom help and drying to really well after each bathroom trip helps. Blow dry after showers. Lotrinin foot powder at night if a little irritated. More and more I really think it’s a food allergy though. I’ve cut out dairy and many foods recently and it’s been almost gone.

Add Reply

Likes (0)
Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×