Gas and cuffitis pain so unbearable

notsosicklygirl said...

Bull101 said...
I had terrible gas as well at first for a few months, luckily it settled down for me after a while (I hope it does for you too).

In terms of butt burn, my surgeon actually told me that all the creams etc. were hurting not helping....with all the creams and the constant baths + more cream, you create a moisture build up that actually breaks down the skin not helps heal it. His suggestion was baby powder to help keep the area dry, which helped tremendously for me. Try that see if it helps....

That happened to me too. I was soaking, and using a handheld bidet, creams, wipes. It made a perfect environment for the breakdown of the fragile skin around my bottom. Though, if you're going a ton, you have to do something!! Sometimes drying helps more than loading up on the cream. Ilex is a cream that creates a barrier - it might help. Everyone is different, once I had to get an Rx cream to calm my bottom because i was using so many creams it caused yeast to flourish. have you tried psyllium husk? I wonder if something like bentyl would help with the spasms? Also, Keith's suggestion of opium tincture. That could really slow you down. Are you doing better today?

Ok help me out here I picked up the prednisone Tuesday night and I was going to start wed morning well I started to feel better Tuesday and wed it was a total switch the cramps and spasms were gone still experiencing gas but I can live with that. But the pain was gone till this afternoon
So I thought I don’t want to start it if I don’t have too . Yes I know I waited 2 weeks to get this going and all of a sudden I start feeling more like myself ( normal ) I was going to give it to today to see . But I can tell it was just wishful thinking I tend to have these normal days every few weeks makes me think everything must be settling down then it hits me like a dump truck and guess what the truck was back again . I just took my prednisone now 6 tablets once a day for 2 weeks then decrease by 1 per week. Regarding the opium haven’t tired or heard about it . I still have my Percocets which I take if needed and that’s only on rough nights . Or nights I want to ignore my boyfriend lol

And regarding the butt burn I have tried the “ not using cream “ and it only ended up burning my butt completely. The problem I think is my turn around for food is sometimes only 4 hours that’s from when I eat till I see it coming out , it’s like it’s still full of acid and it comes out like foam ( sorry for the detail ) where other times it’s pure liquid which is most of the time. I rarely have formed little guys. It’s the foam trips that burn and hurt like hell.
I have been taking pepto bismol all week and I think it may have helped a bit .
I am going to be optimistic and say the prednisone will do the trick. If not I am going back to my surgeon and asking for a dam refund because this sucks lol 😝

Questran for the butt burn.

Seriously. Can't believe nobody has mentioned that so far. It's been a game changer for me. I've tried every ointment going, including calmoseptine, and nothing really helped. The burning and itching were still excruciating. Sometimes I dreaded going to the toilet it was that bad.

But Questran has nipped all that in the bud.

I'm in a bad mood right now though, as having just recently discovered Questran I'm now having trouble tracking it down. Have just come back home from trying to fill in a prescription at a pharmacy without any luck. I'll try again Monday at a different place. But the pharmacist told me that there was a national problem, which sounds bad. Asked her if it was Brexit and she didn't know.

NiceCupOfTea said...
Questran for the butt burn.

Seriously. Can't believe nobody has mentioned that so far. It's been a game changer for me. I've tried every ointment going, including calmoseptine, and nothing really helped. The burning and itching were still excruciating. Sometimes I dreaded going to the toilet it was that bad.

But Questran has nipped all that in the bud.

I'm in a bad mood right now though, as having just recently discovered Questran I'm now having trouble tracking it down. Have just come back home from trying to fill in a prescription at a pharmacy without any luck. I'll try again Monday at a different place. But the pharmacist told me that there was a national problem, which sounds bad. Asked her if it was Brexit and she didn't know.

NCOT thank you for the suggestion but I don’t think that’s available in Canada sequestrant (Questran) is that correct and sorry you have run out of it there. I feel your pain you find something that works then it’s gone . Hoping you have luck tracking some down.

Oh, poor you, valli!! I hope the pred does its magic thing asap.
I take colestipol, a generic for something similar to the Questran NCOT mentioned. It was prescribed to be taken twice a day, but I am taking it only once a day at this point. I can't tell it does a lot; it does thicken up my stool some.
Obviously, we're all different, but it was taking on small doses of metamucil twice a day that really helped me break the butt burn cycle. It seemed like it diluted the stool enough that it was less acidic.
I've also upped the number of probiotics I am taking: visbiome morning and right before dinner, florajen mid- day. I've been doing that only a week, so it's hard to say if there's a lasting benefit yet.
I could feel exactly what you meant when you had a good day and thought, "yes! I am better!" Oh, gosh, how many times have I been in that place along these decades.
I feel for you! (((hugs)))

songlady said...
Oh, poor you, valli!! I hope the pred does its magic thing asap.
I take colestipol, a generic for something similar to the Questran NCOT mentioned. It was prescribed to be taken twice a day, but I am taking it only once a day at this point. I can't tell it does a lot; it does thicken up my stool some.
Obviously, we're all different, but it was taking on small doses of metamucil twice a day that really helped me break the butt burn cycle. It seemed like it diluted the stool enough that it was less acidic.
I've also upped the number of probiotics I am taking: visbiome morning and right before dinner, florajen mid- day. I've been doing that only a week, so it's hard to say if there's a lasting benefit yet.
I could feel exactly what you meant when you had a good day and thought, "yes! I am better!" Oh, gosh, how many times have I been in that place along these decades.
I feel for you! (((hugs)))

Thank you Songlady for the warm wishes. It’s just so tiring because like you said you feel great and normal one day and then it hits you like a ton of bricks and given bathroom trip later.
I am torn I want the pure diarrhea because it doesn’t hurt during the exit but I know it depletes me of my fluids because within a few hours I start with the dizzy spells and thinking it may have been the culprit regarding my heart palpitations. And the formed stools like I had all day yesterday were enough to make me cry during the night . I had to sitz baths back to back I just got out of soaking my bsck door dried myself off and the overwhelming urge hit I was bsck on the toilet and songlady I have been thought 3 child births last two twins coming out and I swear for that 10 mins last night after that BM I thought this is the same level of pain I felt with the twins . Sorry that is messed up no one should feel that after a BM mind you it was on average my 10th of the evening.
Anyways I pray the prednisone kicks in soon like today that would be great .

Eating nothing except for drinking water. Some people add lemon to the water. Then you eat over a small time period and then start the fast again. I think the term is "intermittent fasting"

The most common fast is 18-24 hours but some will do it upto 4 days and then take some time off from fasting.

It is a weight loss technique which is also used to lower diabetics(type-2) blood sugar levels to prediabetic levels.

I'm just wondering if you group your intake around one time of day then maybe things will be easier on your back door with fewer uses throughout the entire day; give it some time to heal and maybe you can sleep better at night.

ks1905 said...
What did your scope show?

Mostly just inflammation in your rectal cuff? Was there any inflammation in your pouch? My GI says under a microscope there is always inflammation in every j-pouch. I'm wondering how significant the inflammation is in your pouch.

I'd inquire what was done with your rectal cuff; maybe you need the surgery that Bull101 had? It really improved his QOL.

Regarding the fasting I could never do that . I would end up killing those near me , I truly enjoy food. I can go hours without food but not days . I am not a big eater anyways but after about 7-8 hours without it I get cranky and you don’t want to be around me . I was thinking of maybe doing a liquid diet eating mush food like baby food mild stuff like sweet potato, carrots and some fruit .
My scope showed 5-7cm inflammation in the cuff little inflammation by the staples in the pouch which he said was normal and I think that’s it. But I had been on the antibiotics for 5 days by then and felt so much better . Wondering what it looks like now.

Going to see him next Wednesday but I am hoping the prednisone will have kicked in by then . Regarding bull101 was it the scraping of the cuff ?

valli1234 said...
NCOT thank you for the suggestion but I don’t think that’s available in Canada sequestrant (Questran) is that correct and sorry you have run out of it there. I feel your pain you find something that works then it’s gone . Hoping you have luck tracking some down.

*scratches head* How can it not be available in Canada? I'd double check that if I were you. The generic name is cholestyramine.

Anyway, I got a refill for a month. Had an argument with the receptionist about putting it on repeat prescription but that's another story :-/

Hey Valli,

Sorry to hear you're still having so many issues. I really hope the Prednisone works for you. I know how you feel, I'm still having issues with the pouchitis. I felt good until this week when I'm down to talking the antibiotic once a day. Ugh this has been so frustrating. I need to reach out to my GI, I can't use the creams anymore. Any time I try to use something to help with the butt burn I end up getting a rash. That's no fun either. And I agree, I would rather have the loose stools, they're less painful.

I'm hoping to see my naturopath soon and see if there is something natural I can try. It can't be any worse than what I'm dealing when now. Something has to give for us soon.

I've only had Cipro. The first round was twice a day for two weeks. This round it was twice a day for two weeks and once a day for a week. My last dose was last night. Though all this week I can feel the symptoms returning. I had an endoscopy at my appt on Feb 20th. There were ulcers in my pouch. I don't know the location of the ulcers and they couldn't see the cuff because there was to much stool. It wasn't a scheduled scope, was at a follow up appt and when I told my GI the symptoms were returning he wanted to take a look. That wasn't fun but it was great to see the pouch on the screen.

I will try the Pepto and see if that helps. I'm increasing my probiotics now that I'm off the antibiotic. Keeping my fingers crossed.

Yes I believe I had issues from day 1. Even in the hospital after my takedown, I had issues going. I could never empty my pouch fully. Then I started to feel normal for a little while - but I wasn't eating a whole lot at the time, (I would feel so full after a couple bites at that time), but then having issues once I started eating fully.

The doc gave me mesalamine suppositories after my MRE since it showed inflammation in the cuff and the pouch. But once I started feeling better on the antibiotics he had me stop the suppository. But since that's not a steriod I wonder if it even would work. I guess I will email my doc again and ask him if I can use the steriod suppositories. Ugh, this is really frustrating. I would prefer to not use biologics but if that's what it takes to feel normal again, I will do it. I can't take this anymore.

I feel woogy frustration. None of us want to go on biologicals . I feel so cheated out going through all these operations only to have now go back on the top guns. Not to mention the cost now. I have no private insurance I get only what the government helps out with and it’s not all drugs . For the Hurma it was covered under compassion by the company it self. I applied for it and received it. This is what happens when one works for themselves .

But at the end of the day Keith I will go on it. I understand you suffered 3 years I bet you wished you went on them sooner. Makes sense
Just mad right now at myself , my surgeon and my surgeon and ohhh my surgeon lol . She promised I would feel like myself again and having these operations were the best thing . I am sorry I am bitter right now . I get I have to suck it up . I will tomorrow’s a new day so there is always hope there 👼👼

ks1905 said...
If it is just your cuff then I’d have that scrapping procedure before trying a biological.

If the Entocort costs too much then I’d ask for steroid enemas instead. They are less systemic than Prednisone so you’ll have fewer side effects.

Will do writing them both down so I don’t forget tomorrow.

Keith what happened when you got off the antibiotics each time did all your symptoms return?