Pouch Issues

That's quite a rough patch you're experiencing. I have two questions, Nora: 

1) You write "as soon as I stop the meds the output is liquid." When you are on Cipro or Flagyl how are things? You might have antibiotic-dependent pouchitis.  I do.

2) Have you tried a variety of soluble fiber products in various doses? They work pretty simply, so I'd expect some effect, even if it's inadequate. 

Scott:  when I take the meds, I feel bloated, constipated, and basically miserable. I tried Lomotil, but that did nothing. Cipro, Flagyl, other antibiotics don't do anything, just the awful "full"feeling.  I can't go the the bathroom either.  Once I stop them, it's like the flood gates open and I'm in the bathroom constantly it seems, as if my pouch was clogged and is now emptying.

i have tried every thickener I could find, even what the doctor recommends, even coconut flakes.  Nothing. I'm thinking this is my normal, but it's the horrendous butt burn that I can't do much longer. The only time I had anything slow down without a full feeling was when I took a pain pill. I tore a rib muscle and took some 5 mg Vicodin for a couple of days and I noticed thick output, not going so much, and no butt burn.  That's the only time I haven't had just liquid.  I've been under stress, but had the symptoms prior, just with the stress it seems to be getting worse!!!

If you respond well to opiates, why not ask for Paragoric, or even codeine to help with this? It is entirely appropriate and better than antibiotics if they are not needed.

Jan

Just to cover all the bases: have you been tested for C diff? The PCR test is the best one that's routinely available, ideally done when you've been off antioibiotics for a couple of weeks.

I see the surgeon next week, I'm going to see about Paragoric.

I did a test, but I never hear back from the gastro office.  There's issue with the staff.  I have to tell them every time, I have no colon.  Aargh!!   

Nora, I am a month out from takedown, and realized yesterday I really only eat one meal a day because of the butt burn. I can get it thicker but tire of the metamucil drink. Haven't tried Lomotil what does that do? I am hoping it gets better because I am going through way too many clothes and sometimes the desitin burns too. I only find relief with a shower but can't stay in shower 24/7 obviously. I am looking for work but am worried (like with UC) about hanging in bathroom and or clothing mess. 

hang in there Sharon! 5 months post takedown here. been through all of that, it was very frustrating. but today things are getting close to normal, still get the occasional buttburn but it is much less severe. dont give up! the worst is behind you (no pun intended!). best wishes, Kevin

Thanks Kevin. I have ok days and just terrible ones. I know I am on the road to new normal it is just hard sometimes. I look forward to being where you are and encouraging others. 

Nora- I've been there and codeine is what helped me. Hope you find a good gastro because your symptoms are awful & if you are looking for a job, codeine would help. 

Good luck to you Nora.

Jan, I periodically have liquid stools for days or even a week at a time when stress is really bad. And the but burn is terrible and the skin barriers are no fun and ruin my underwear. I've also noticed if I ever was on pain pills for medical procedures that thickened things up while other meds never did work. 

Can paragoric be used as needed? And is it addictive, meaning does the body get used to it and then things won't be "normal" unless you use it? My life would be changed forever if I had an effective option for those times when it's basically water and dirt in the potty and burns the heck  out of my skin. It happens with stress and often with travel. Thanks for any info. 

Yes, you can use Paragoric as needed, just as you can with codeine. While the body become tolerant of the analgesic effects of opiates over time, the same is not true of the GI effects. This is why constipation is such a terrible complication for those using opiates for chronic pain. The pain relief lessens, so they need more opiates, and they get more and more constipated. If you take opiates only as needed, and have long "drug holidays" you will not get the analgesic tolerance over time.

That said, if you take a smaller daily dose, you may find you have fewer occasions of these "stress flares." But, you won't know until you try this option.

Jan

Thanks. That's good information to have. My doctor's office needs to see me before prescribing this, so I'll be making

the appointment now. Take care!

@tulsamom I understand what you mean about the watery and painful bm's. I mean I have birthed 2 children without medication, but this hurts. Like last night, I took a shower and felt good because it was clean, for all of 5 minutes. Then I had 3 watery explosions in a row. My dr acts like it should be a walk in the park. She gave me tramadol which doesn't help. Now she is saying rotate regular tylenol with the tramodol. I mean, I have a high tolerance for pain but when I need something, I need it. I asked for a cream that might numb or have analgesic effect but no to that too. Mind you this is the VA. So just take immodium and metamucil and use wipes(which still burn if you wear pads all day every day because it chafes) and see ya in a year. No wonder veterans lose it....

Hi Sharon! Though barrier creams are messy and inconvenient, I have felt total relief when I use Boudreaux's Butt Paste, found in the baby section at Walgreens. It doesn't have that fish oil smell and comes off your hand much easier than other brands. The down side is that you end up wiping it off each time you wipe. If you're home you can clean and dry the area each time to reapply, which protects your skin from damaging acids or whatever is causing the irritation to the skin. Out in the world, just try to get the area as clean as you can with tissue and reapply.

I think the best practice is to get a barrier on at the first sign of liquid stool, before the area becomes "burnt."  That way it doesn't hurt to wipe. And then keep reapplying. I've never accomplished this. I always wait till I'm in pain. Maybe I'll take my own advice now that I've shared it with everyone else. 

So, my doctor said no to Paragoric. Said you can't even get it. He gave me Enteragam. He said it reduces inflammation in the GI tract. I can see why he thinks it might be helpful because I was talking about getting loose movements during stressful times - which translates to inflammation. 

I am extremely unhappy about the beef element of it because I am a vegetarian. But I have given myself a pass when it comes to medicine for my health. I just don't want to try it unless these has been some success with it. Anybody use it to reduce inflammation and have bowel movements return to normal?

Of course you can get paragoric! https://medlineplus.gov/druginfo/meds/a601090.html

I can't say for sure, but I suspect yhat your doctor does not think you need it. I would not be surprised if Enteragam is not on your formulary.

I double checked my own provider's formulary, and it is on there. It may need to be special ordered by your pharmacy, but it is certainly available!

Have you tried lomotil though? That would be the lgical choice before going with paragoric.

Jan

He had a very negative reaction to the idea of it. Oh well.

So did he have any solutions?

I don't know how it is in other states, but in Oklaoma any opiates are nearly impossible to get because of the people who have abused them. I suspect that's why this doctor and all my other doctors would rather cut off an arm than prescribe any of these. The documentation process they have to go through is a deterrent.

He seems to have had really good results from Enteragam with others. But the whole beef thing is too much for me to deal with. I have decided to return the box, unopened. Maybe I'll get an RX of Lomotil. If anyone has any experience with Enteragam, maybe start a new thread and tell us all about it. The doctor said there is a way to get it for $50/month through the company rather that over $400 through a pharmacy. I think that's what he said.

You can get a voucher for substantial savings at http://enteragam.com/hub/

Some vouchers work for a year, but this one seems to require tinkering before each refill. The voucher works at the pharmacy.

Thanks Scott! I returned it today. Wouldn't want to deprive someone else of a very valuable box of product