Still experiencing issues with my cuffitis

My appointment was canceled do to a major snow storm we had here Tuesday and tonight we have a high of -20 lol yes and it’s expected to get colder -35 why does Canada not own a island 🌴 in the Caribbean ??
Ok update I know its only been a little under two weeks since I started the suppositories but things are getting worst everyday all my old symptoms are coming back
Gas pain , an average of 15 bm a day , I have yet had an accident but I am now walking extremely fast to the bathroom plus bleeding when I wipe which I suspect is hemorrhoids. I never use toilet paper I have a squeeze bottle I use then pat it down and then apply one of my diaper or barrier creams .
The gastro said I was 5 cm inflammed cuffitis and ulcerations around the staples in the pouch.

Right now the aggravation has come back I am sick of feeling unwell. I want to be optimistic and in the back of my head I know it has to heal up , it’s just since June 2017 I have been sick everyday and I want to see the light at the end of the tunnel not more pain.

My appointment is tomorrow with the gastro. Does anyone have any suggestions remember the two antibiotics made me feel like a normal person again I truly felt like myself but after 2 weeks on them I was experiencing heart palpitations so I stopped which was his plan anyways and I was only to continue up a few days later if the symptoms returned but by then I had the palpitations off ahd on so I started up with the suppositories which is what I am still doing today .

I’d discuss a steroid like Entocort with your GI. I took that for my pouchitis. It could help with your pouchitis, cuffitis and inflammation.

I’m not sure if you’re familiar with Entocort but it is non systemic so it has much fewer side effects than other steroids. It’s released in your intestines.

I’d also discuss the surgery that Bull101 had and if taking a steroid would be an issue for that if you’re going to have it in the next ~6 months.

I always like to make up a list of questions for my GI prior to going to my appointment and then taking notes while I am discussing it with him.

I’ve always heard Cuba refered to as Canada’s Florida. As an American and occasional cigar smoker I’ve been jealous of Canadians for their access to Cuba.

ks1905 said...
I’d discuss a steroid like Entocort with your GI. I took that for my pouchitis. It could help with your pouchitis, cuffitis and inflammation.

I’m not sure if you’re familiar with Entocort but it is non systemic so it has much fewer side effects than other steroids. It’s released in your intestines.

I’d also discuss the surgery that Bull101 had and if taking a steroid would be an issue for that if you’re going to have it in the next ~6 months.

I always like to make up a list of questions for my GI prior to going to my appointment and then taking notes while I am discussing it with him.

I’ve always heard Cuba refered to as Canada’s Florida. As an American and occasional cigar smoker I’ve been jealous of Canadians for their access to Cuba.

Ks1905 I had success years ago with entocort enemas for my UC and I am lucky I have never had any side effects to steroids. I would rather try that then go back on cipro unless he could recommend another antibiotic without those side effects.
I have a list already made out , I know what it’s like to get into the office with a few questions and only remember one.

Regarding Cuba yes we head down there often my daughter was just there last week with her boyfriend . You can’t beat the clear blue water and my other half picks up cigars since they are the best he says.
Will post this afternoon what the doctor recommended
Thanks guys for your help .

3timechamp said...
Oh lord. Oh Valli I feel terrible for u. Hey all us UCers have taken most of meds that would seem to help u now so at least u will get some great advice here. Hope all goes well with Dr. 0 degrees here in N.Y. You guys and upper mid west states are getting the ddddddeeeeeeeeeppppppp freeze. Cmon God help Valli get to 100%. Let us know how u make out at Drs

It was -12 here last night. I stayed home from work just in case the power went out or my furnace acted up; I think my pipes would freeze before I knew it.

Up past Syracuse is supposed to get 5+ feet of snow through Saturday. Lake effect snow.

There are some UC patients that were triggered or flared from antibiotics and now they need to take them for their J-pouch treatments. Most of the time Antibiotics are a no-go for UC'ers.

3timechamp and KS1905 well I survived our coldest day so far . Visit with gastro went well his thinking is I had pouchitis and by the time I had my scope it was healed from the antibiotics.

He showed me the images taken of my pouch and rectum cuff I was blown away from the high quality of each one. You can see the area of ulceration where the staples are placed and a slight red and white patch section where he assumes was inflamed . The rectal cuff area was full of blood sort of took my breath away compared to my healthy looking pink pouch .
He wants me back on antibiotics his thinking is that within 2-3 days last time all my symptoms were gone and my words exactly I felt normal again .
His first choice was a cephalosporins which I have an allergy to so he prescribed two additional ones . I took the script in and the first one had a link tied to cephalosporin the pharmacist said so she wants to talk to the doctor directly and the second is doxycycline. The one he often treats patients with if they don’t do well on cipro or Flagyl is amoxicillin/clavulanate but it’s tied directly to cephalosporin so now doxycycline is his 5th choice .. not happy with that .
Ok falling asleep again , which is good news because I hardly sleep .
Will finish in the morning
Stay warm everyone

ks1905 said...
Did you discuss a steroid like entocort?

I’ve taken xifaxian as an antibiotic for pouchitis. It worked pretty well but wasn’t a long term fix for me. In fact, I used it with the combination of entocort.

I asked about the entocort he said let’s try the antibiotics again we can try that next if they don’t work.
He prescribed doxycycline that is different then the one you mentioned above xifaxain

I never made it to doxycycline for pouchitis but I have taken it for Lyme Disease while I had pouchitis. I was also on Stelara at the time so I couldn't tell you if it made any difference or not for me.

I freaking hated doxycycline, it put me on my butt. I was so tired. It was awful.

So I guess that Amoxicillin is out of the question since you are allergic to it.

Your GI probably didn't want to prescribe both Entocort and Xifaxan because they are both some of the most expensive steroids and antibiotics available. If you are still having problems then I would push for them as an option.

Ah minus 16 that's Ccccoooollldddd. 21 here in the frozen apple. Feb and March then Spring. Supposed to be in 40-50s here in NY next week. Hope you and Song can get on the right track ASAP.. Keep us updated

ks1905 how did you get Lyme disease I cant imagine that was fun. Regarding the price for the meds most are covered under private insurances up here and if not the government has programs to cover prescription costs if you apply. Doxcycline doesn't sound like a drug I want to try it really was his last choice. I think I will wait till he gets back Tuesday and either get the one he suggested on Thursday as long as it has no direct link to my allergies or rifaximin that you suggested. I just looked and I am covered for rifaximin health Canada just approved it this year. I remember from 2017 entocort was not covered under my insurance its been the only medication i had to pay for it was only 80.00 for a box of 6 not a huge deal funny thing is humira was covered which is thousands of dollars.

Thanks 3timechamp and this weekend it is warming up, my other half is skiing up north I will stay here where we are going to get a high of 0 this weekend. You said in you below reply hope you and song get on track, is Song not feeling well.

Argh, valli, sorry about all this! I hope they/you can figure out something. I had missed this thread until just now!

I've had some pouchitis - details are in the "recent/friends" thread. I think (I hope!) I've kicked it at this point. Urgency, accidents... and usually worse mid-afternoon through bedtime. (I eat a lightish breakfast, maybe some oatmeal... so I figure it all; starts up once my system has real food in it.) On a recent roadtrip I had incredibly painful gas, and in the days that followed I had urgency/frequency until I restarted the cipro/flagyl.

I'm in New England, so it has not been balmy here, though not as cold as where you are! And your other half went "up north" to ski? Yikes!

songlady said...
Argh, valli, sorry about all this! I hope they/you can figure out something. I had missed this thread until just now!

I've had some pouchitis - details are in the "recent/friends" thread. I think (I hope!) I've kicked it at this point. Urgency, accidents... and usually worse mid-afternoon through bedtime. (I eat a lightish breakfast, maybe some oatmeal... so I figure it all; starts up once my system has real food in it.) On a recent roadtrip I had incredibly painful gas, and in the days that followed I had urgency/frequency until I restarted the cipro/flagyl.

I'm in New England, so it has not been balmy here, though not as cold as where you are! And your other half went "up north" to ski? Yikes!

Ohh songlady I am so glad the cipro/ Flagyl worked . I remember you saying you were worried about the up coming rd trip what do you think trigger the pouchitis I hope stess can’t do it , considering that’s what caused all my UC flare ups .
You said the gas was pretty painful that’s what I experience it’s the one thing I hate the most . How many days did it take for you to feel better on the meds ?

And New England that’s still pretty far north to suffer with cold depressing winters . Yes my other half is a skiing instructor for a private club up north he goes up every weekend for the winter as a part time job ( he loves it lives for it ) not sure if you can tell but I truly hate the winter ... they say opposites attract guess it’s true .
☃️❌🌴 = him and I

Song have you had the pouchitis before ?

SL,

So is your doctor saying that the pouchitis is chronic? Personally, I’d tried more meds to try to knock it out before I’d accept that diagnosis.

I don’t get much gas unless I’m not treating my pouchitis. I’d say that my gas level is at my pre-UC days.

Bacteria feeds off of carbs. Bacteria is what produces most of your gas. Maybe you want to lower your carb intake.

Song Lady,

Gas and diarrhea can also be caused by SIBO. It’s an easy test and I’ve taken the test previously, there is also a home test for it.

SIBO can happen to jpouchers. Certain antibiotics can cause it and other antibiotics can fix it.