Recently taken-down friends

Valli, It great your GI doc was able to give you a diagnosis. I hope the meds help and you start to feel better. ☺️

I had my 1st follow up with my surgeon and GI doc on Weds. I have been having this pain on my left side buttock area for a few weeks now. It almost feels like the pain you get from riding a bike too long. Almost like a bruised butt bone. The only thing is the pain increases when emptying my pouch. And it's uncomfortable to sit down so I lean to the side. The surgeon didn't think anything of it and said it should go away with time. GI thinks it's muscular and said to take Tylenol and use heat/ice. It's not improving but not getting worse either. It really is frustrating when no one has a clue as to why I'm having issues now. Oh well, I will continue doing the heat/ice and hope it goes away. 😒

---

~Diagnosed in 2001 - Left Side UC
-Vit D, Vit C, Multivitamin

Previously tried colozal, lialda, asipro, sulfasalazine, rowasa, canasa, hydrocortisone enemas, Imuran and Humira - they all failed or made symptoms worse.

**Step 1 of 3 - Surgery on 1/29/18**
**Step 2 of 3 - Surgery on 8/6/18**
**Step 3 of 3 - Surgery on 11/12/18**

valli1234 said...

Riseagainstbadmusic I had a biopsy done of the colon after my first operation, that is why I dont understand why she is doing another biopsy and that was ordered by the surgeon she was the one that thought maybe crohns. My new gastro thinks pouchitis. When did they take your biopsies? And what where your symptoms.

It was weird, had 4 scopes and biopsies done prior to them finding out it was crohns. They didn't know why they couldn't have seen it before. But it was really obvious to them during the last scope and said the biopsies would come back as crohns, and they confirmed it when they got the biopsies back. I had some rather deep ulcers up above the pouch, quite a ways above the pouch. I knew something wasn't right because the blood was dark, not light. I knew the ulcers were higher up in my GI because of that and the awful pain. It was a different kind of pain that I was used to with UC. And I've never had blood that dark before, and it was every single bowel movement. They were treating it as pouchitis and cuffitis and the cipro/flagyl did not work for very long and it didn't stop the bleeding. After it was confirmed to be crohns they put me back on prednisone, methotrexate and remicade. A month after my remicade infusion it came back so now I am every four weeks with the remicade infusions. And I haven't had any ulcer bleeding since. I get scoped next week to see how it's been. My GI did call to tell me I was developing antibodies to it, so I don't know how much longer it will work. But it's nice to not be bleeding 8 times per day.

Post Edited (Riseagainstbadmusic) : 1/5/2019 1:56:09 AM (GMT-7)

3timechamp said...
Valli feel bad with what your going thru. Hope u get on right path to recovery. I changed my primary care Dr few years back bc she gave me anti biotic that caused me big D and put me in hospital for 4 days. When I asked why she gave me that she was speechless. Told her she should know about her patients and what they can and can not take. She wasn't happy at my bedside in hospital. I couldn't give a sh....... how she felt. Drs are like car mechanics u hope u get a good one. Not easy at all. Going to see plastic surgeon Wednesday then we schedule surgery. Hope by end of month. Be well and good luck

We have to be our own and best advocates, I always ask if I can take a medicine and if there are any interactions to UC, bleeding, or any of my medications. If there is a questions then I run it by my GI and go from there. A couple of years ago I did my loading dose of Stelara (4 doses at once) and then four weeks later I was bit with a tick that was confirmed to have Lyme Disease. I called Stelara, my GI, met with 3 infectious disease doctors and nobody had a clear answer for me on what to do with my next dose of Stelara. My GI went and asked the head of infectious disease department at NYP Cornell and got me the best advice available. I never ended up with Lyme.

FYI, now that you are without a colon and UC you still should not take NSAIDs. I confirmed this with my GI.

---

Keith

DX'd with Severe Pancolitis June 2005
Previous Meds: 5ASAs, Predisone, 6-MP. Remicade, Humira, Simponi, Cimzia & Cyclosporine
3-step J-Pouch surgery: 2013 & 2014

Current Condition: Chronic Pouchitis -- Not as bad as I thought it would be
Current Meds: Stelara
Total Hip Replacement: 12/16 -- Thanks Prednisone!!!
www.healingwell.com/community/default.aspx?f=38&m=3755226

3timechamp said...
Keith what are NSAIDS??

Pain pills like ibuprofen, Advil, Motrin. They will cause stomach bleeds in people who have a history with ulcers. One every once in a while wouldn't hurt, but anything more than that and you're playing with fire.

3timechamp said...
Keith what are NSAIDS??

You now know what they are. I had problems recovering from my hip replacement surgery because I couldn’t take NSAIDs (normally prescribed after surgery) and I refused Helprin shots because of the bleeding risk. The surgeon I chose specialized in using a new boot device to lower the blood clotting risk. He sent me home with them to use for two weeks after surgery.

We always need to consider the IBD implications when dealing with any medical issues.

---

Keith

DX'd with Severe Pancolitis June 2005
Previous Meds: 5ASAs, Predisone, 6-MP. Remicade, Humira, Simponi, Cimzia & Cyclosporine
3-step J-Pouch surgery: 2013 & 2014

Current Condition: Chronic Pouchitis -- Not as bad as I thought it would be
Current Meds: Stelara
Total Hip Replacement: 12/16 -- Thanks Prednisone!!!
www.healingwell.com/community/default.aspx?f=38&m=3755226

Woogy - NSAIDs can cause GI bleeding. Ibuprofen products (Advil, Motrin, ETC) CAN CAUSE UC - like symPtoms in people who do not even have UC.
My guess is that we all respond differently. about 30 years ago I took Advil for a few days for a bad backache and went into the bloodiest flare of my UC career. So, for me - I won't chance them. Two c-SECTIONS, two hip replacements, not a single NSAID. Some opioids, but I don't seem to suffer effects from them and can get off them easily.

After reversal surgery my CR surgeon told me never to take them again. (But, since I gave them up 30 years ago, I didn't even question him!)

In other news.... I have been doing OK. December is the busiest time of my work year, and it was really difficult with my mother's death early in the month. I'm still dealing with her affairs, minimal as they were.... so emotionally I'm sort of blah. Even with the holidays (my favorite!) I just didn't feel much of anything, highs or lows. I've lurked some but haven't signed in lately.

I have a regularly scheduled appt with my CR surgeon tomorrow. Will ask him about the possible pouchitis (after being off the antibiotics awhile, I am not feeling as perfect as I was when I was on them..... except that they made my hands and feet more numb and tingly, which worried me. They already feel that way from last year's chemo. )

Then DH and I are driving to see family, away for a week. It's a 12 hour drive, and we are splitting it over 2 days. I think I am getting psyched - a week ago I was almost paralyzed with nervousness about it! But I know I need to get away and I am hoping this will help.

Valli, sorry for all your trials; and Champ, sorry about the hernia. Let's hope for a good 2019 all in all!

---

Age 62. Diagnosed UP 1983, UC 1986
Step One surgery on 12/28/17.
Surgery: planned. The colon cancer they found: a surprise.
Prior meds: sulfasalizine, Asacol, Delzicol, Lialda,
6 MP, Humira, Metamucil
two hips replaced thanks to pred.
6 months of chemo finished 7/9/18
Reversal to J pouch 8/9/18

Thanks for the post guys I wrote back two nights ago and like a few times before instead of the submit key I hit the cancel.... that is it no more late night computer time for me lol. My other half is a shift worker ( police officer ) so when I stay at his house I am forced to stay in bed all night just bathroom trips when I am at my house 6 houses away I can stay up as long as I like. lol

Fantastic news I feel NORMAL yes I actually for the first time since May 2017 the beginning of my nightmare feel like Valli again, no running to the bathroom all night long, no serve gas pains and no back door pain.I started taking the cirpo and flagyl Thursday morning and by Saturday there was a day and night difference. My BM look normal ( ok they are black but who cares) they do not cause spasms coming out and I only go maybe twice a night compared to 10 times a night on average, I literally had no control of when I would get up..
My boyfriend is so pissed he wants to make a follow up appointment with my surgeon just so he can say" Look here after just 2 days she feels normal again and she should have put me on cipro and flagly months ago when she said none of this is right what she is experiencing are all the symptoms of pouchitis". I told him she is most not worth the heartache lets move on and enjoy good health.
I have my pouch scope with the gastro Wednesday, curious to see if my pouch is already simmered down and if it would still show signs of inflammation but it really doesn't matter because I am showing no signs of all the symptoms I had they are no non existing.

And regarding the NSAIDs I never take them when I had my colitis I once took the gel ones and ended up with a flare for 6 months. I would still avoid them just because I am guessing not too many of us have a lot of luck with GI issues and Advil is notorious for causing stomach issues. I would stay away from them and stick to Tylenol.

---

47 year old female mother of 4
UC since 1993 remission off and on
The last flare-up was 2008 till 2009 then remission till June 2017
Hospitalized November for 5 weeks removed my colon Dec 12
Anemia 4 blood transfusions in those 5 weeks.
prednisone, asacol, pentasa,encort enemas, steriod enemas, hurmia all failed
Proctitis Jan 2018
March 19 2nd surgery J pouch
Next surgery late Aug 8 takedown

Great to hear you've already had so much improvement. Imagine you take this course and things are fine for a very long time? I hope so! But yeah, I'd be mad that the surgeon wasn't more helpful. Why make you live in hell for so long when all you needed was proper treatment. I hope you continue to improve and feel well. I probably wouldn't waste my time making a big deal of it regarding the surgeon either, but i would be a bit resentful.

---

Moderator: UC
Currently: no meds 6/15 Step 1 J-pouch Surgery Complete 9/15 Step 2 Complete 11/15 Step 3 Complete
From Sickly to UC Free
Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish

Hi all - Just a quick update that I saw my surgeon yesterday. He was very pleased with how things are coming and with my Daily Poop Count Chart (which he'd asked me to keep.) The numbers tend to be 6-10 per 24 hours period, depending on what I eat, when I am not on antibx. That includes none or maybe once at night.

I might have a hernia. He will take a look at the CT scan I have schedule for next month (scheduled for the oncologist - standard to do this twice a year at this point.) He said that I had such a large weak area of stomach muscle that he did not use mesh, just stitches. I definitely have a bulge near the stoma site and can feel "something" in there when I cough or strain the muscles. But, heck, I won't worry at the moment.

We leave today for Day One of our car trip to see family. A week ago I was really nervous about this, and about being away from my own bathroom, but now I feel ready to get away! The Doc was excited we were going away and brainstormed a list of what I should bring (which of course I'd already thought about and packed, lol, but it was sweet.)

Be back in a week or so!

---

Age 62. Diagnosed UP 1983, UC 1986
Step One surgery on 12/28/17.
Surgery: planned. The colon cancer they found: a surprise.
Prior meds: sulfasalizine, Asacol, Delzicol, Lialda,
6 MP, Humira, Metamucil
two hips replaced thanks to pred.
6 months of chemo finished 7/9/18
Reversal to J pouch 8/9/18

Good luck with your scope

Hi guys a little update had my scope on Wednesday to start I do not remember a thing not even my drive home its amazing what a little IV with meds into my system will do. The doctor took biopsys and wrote down I have inflammation in the last 5 cm of my anus which I believe is the rectal cuff and it is still considered Ulcerative colitis ( cuffitis). And also it showed I have ulcers in the pouch which is due to staples. Other then that my pouch looks ok.
I am to continue on the antibiotics till finished and if the symptoms come back stay on the antibiotics for another month plus a solfalk suppository nightly. What I do not understand is it has to be bacterial right, because once on both antibiotics the first time last week I saw a 90% difference in just two days, I finally have my life back and its all due to the antibiotics so I wonder was it in my pouch and it healed already or the cuffitis?
Hope everyone has a fantastic weekend which to me means two sleep ins..... not looking forward to our weekend weather - 10 brrrr to those of you in the sunny south enjoy it.

---

47 year old female mother of 4
UC since 1993 remission off and on
The last flare-up was 2008 till 2009 then remission till June 2017
Hospitalized November for 5 weeks removed my colon Dec 12
Anemia 4 blood transfusions in those 5 weeks.
prednisone, asacol, pentasa,encort enemas, steriod enemas, hurmia all failed
Proctitis Jan 2018
March 19 2nd surgery J pouch
Next surgery late Aug 8 takedown

3timechamp said...
Valli quess we have summer weather here in NY. Wind chill in teens Where r u in Canada??? Hope your on road to full no issues recovery. I'm sure with cuffitis or pouchitis your healthier then 2017??? Stay warm and healthy

3timechamp I am between Toronto and Niagara Falls so we tend to get the lake effect snow being so close to the lake. I literally have no time off for a vacation in the next few months, I will hibernate for a bit till it warms up. I have 4 more days on my antibiotics fingers crossed the 2 weeks did the trick, I am feeling 100% for awhile there I never thought I would again. Here is to 2019 health and happiness for all of us.

---

47 year old female mother of 4
UC since 1993 remission off and on
The last flare-up was 2008 till 2009 then remission till June 2017
Hospitalized November for 5 weeks removed my colon Dec 12
Anemia 4 blood transfusions in those 5 weeks.
prednisone, asacol, pentasa,encort enemas, steriod enemas, hurmia all failed
Proctitis Jan 2018
March 19 2nd surgery J pouch
Next surgery late Aug 8 takedown