Hows class of 2018 surgery comrades doing??

Things are going well with me.Everything flows thru me but only need bathroom 1-2 maybe 3x a day.Not eating much because of another possible hernia so trying to keep gut flatter.

I am not class of 2018, but things are still the same for me. Not much to report. I live a very dramafree life compared to my life with UC.

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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

Drama/issue free is a good life when discussing UC

Whats another surgery when u have had 3 already?? I mentioned to the plastic surgeon who did my hernia surgery that with my spleen surgery in 77 i have been sliced open 4x .I asked if i get free bagels if i go to 6 surgeries??? ha ha.Song where is your hernia?? Mine was at top of my stomach,i had a vertical incision with all my colorectal surgeries-lucky me.I take imodium/lomitil when i remember.

Woogy,

Do you ever cycle off of antibiotics or take an antibiotic holiday? Talk to your GI, the antibiotic holiday may be a good thing to do. You don't want these to lose their effect or get Thrush.

My problem was that I would always get thrush from antibiotics after a certain amount of time.

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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

ks1905 said...
Woogy,

Do you ever cycle off of antibiotics or take an antibiotic holiday? Talk to your GI, the antibiotic holiday may be a good thing to do. You don't want these to lose their effect or get Thrush.

My problem was that I would always get thrush from antibiotics after a certain amount of time.

No I asked my doctor about this and they said there is no need. I'm really concerned that eventually they will start to not work since I've been on them for so long. Again, when I asked my GI doc they said that won't happen. I really hope not because this is the best I've felt in a very long time.

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~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**

Adrina- I was not doing well at that point after takedown either. I was having a lot of pelvic pressure, terrible frequency, butt burn and intense itching. I was pretty miserable. I think it was around three months post takedown that I started to see the tiniest light at the end of the tunnel. Things got better after that but it was super slow. Having said all that- I would talk to your GI about the weight loss and other symptoms.

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45 yr old woman, diagnosed in fall of 2014 6 months after having 2nd baby. tried just about every drug under the sun with no luck. also tried probiotics, supplements and accupuncture.
Jpouch surgery step1 of 2 August 2018. Final surgery scheduled for nov 2018

1 year Aug 21st that i had surgery 3-been ok since except hernia

Hi guys it’s so nice to hear from everyone .
I just had my 1 year take down anniversary this week. I truly love to hear so many of you are doing well.
I have come to accept this is the way my pouch reacts to food I am still at the 10-15 mark for bathroom trips and my nights can be horrible but at this point I don’t care. My days are ok the morning is when I am able to function without running to the bathroom . I eat very little because I get upset about pooping all the time but it really makes no difference.
After finishing the FMT last month I saw a difference in the gas pain i was experience all the time . By the 4 th transplant all the gas pain disappeared and that alone is enough for me to be satisfied with the results .
I find after eating, I have 3-5 hours till I start hitting the toilet
Last night I had two small pieces of pizza just cheese and about 4 hours later it burned coming out . I had to have a sitz bath to control the pain in my back door area.
What I don’t understand is I have had pizza a time or two before and I was ok with it . Which is why I just accept this will be my new norm.

Other then that life is good
Had a few weeks at the cottage and another one coming up so my summer has been very relaxing.

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49 year old female mother of 4
UC since 1993 remission off and on
The last flare-up was 2008 till 2009 remission till June 2017
Hospitalized November 2017 for 5 weeks
Anemia 4 blood transfusions in hospital
prednisone, asacol, pentasa,encort enemas, steriod enemas, hurmia all failed
Dec/17 Total colectomy
March/2018 2nd surgery J pouch
Take down 3rd surgery Aug/ 18
Cuffitis sept/Mar 2019

songlady said...
Hi all! I have been meaning to check in! Pouch is doing good! We just got back from a week away, with time in a city and time on a lake, canoeing and swimming. All drama free, though I did make sure to pack calmoseptine to deal with the results of adventurous eating and the testing of local craft brews. ! I am still taking some immodium and lomotil, and metamucil, but less than I was. Surgeon said the chemo has made my recovery slower than otherwise might be the case. But I cannot believe how much the whole frequency/gas/etc thing has continued to get better over the months! Yay!

I finished radiation for the minor breast cancer on 7/9, and no drama there either. I have a slight tan in an area I've never exposed to the sun, is all, lol.

I do have quite a hernia. I saw my surgeon several weeks ago, and he said we'd see what it looks like when I have my twice-a-year CT scan in mid August (post colon cancer routine). I have a hunch it will need repairing; it does bother me some and I can't imagine it will bother me any less as time goes on...?

Champ - gosh, another one? I may be asking you some questions if I head in the direction of repair surgery.....

How's everyone else?

Songlady it’s so nice to hear from you and I am happy to hear all went well with the radiation . Hopeful the hernia isn’t going to be a big issue and if needed it’s a small repair .
Drama free is the key I truly believe that now.
How is working going ?

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49 year old female mother of 4
UC since 1993 remission off and on
The last flare-up was 2008 till 2009 remission till June 2017
Hospitalized November 2017 for 5 weeks
Anemia 4 blood transfusions in hospital
prednisone, asacol, pentasa,encort enemas, steriod enemas, hurmia all failed
Dec/17 Total colectomy
March/2018 2nd surgery J pouch
Take down 3rd surgery Aug/ 18
Cuffitis sept/Mar 2019

Valli/Song and friends everything going well-being we do interior and exterior work we stay busy til Xmas. I'm happiest i've ever been,life is good.Moms going thru bunch of health issues,cancer,low blood counts,spine fracture,blood transfusions,88 yo etc etc so Mom keeps us all busy if work isn't enough.She had 5 boys in 7 years without disposable diapers so we owe The Boss big time[ha ha].Song- congrats to you on your anniversary,as long as hernia isn't causing u discomfort then live life til u have time and are ready to rest and recover from surgery.Valli and anyone else having a tough recovery from surgery i think about you guys often,i feel guilty that im not having recovery issues.I pray that things will get easier for you.Be well all

colitisresearch said...
Adrina- I was not doing well at that point after takedown either. I was having a lot of pelvic pressure, terrible frequency, butt burn and intense itching. I was pretty miserable. I think it was around three months post takedown that I started to see the tiniest light at the end of the tunnel. Things got better after that but it was super slow. Having said all that- I would talk to your GI about the weight loss and other symptoms.

Thank you this encouraged me. I'm close to three months so hopefully I get better. I combat butt burn by using zinc oxide so I've been fine so far with that.

songlady said...
Andrina - I lost a lot of weight after the colectomy. And now it's coming back on, which for me is NOT a good thing! (I do ok at home, but if we go away for a few days and eat out a lot, I come back a few pounds heavier....)

For how long have you lost weight and when did it start to turn around? If you remember.

valli1234 said...
I find after eating, I have 3-5 hours till I start hitting the toilet

That's about the same time frame I have experienced.

valli1234 said...
Consider yourself part of our class for sure
Sorry to hear you are still experiencing issues . Is it gas cramps you are experiencing?

I suffered with that till about July then I did 4 sessions of FMT and all the gas cramps have subsided .
I too have serve joint pain which i still have now . I was told since my autoimmune disease couldn’t attack my colon any longer ( some mean surgeon removed it lol ) it was attacking my joints . Voltern rub is my favourite friend it helps with most of the pain.

It will get better give it time we all heal differently.

Thank you for including me into the 2018 class Yes it's gas pain. And I can't always pass gas. I only can when I'm laying down. Standing up and passing gas is a big no-no.
So having joint pain means for us that we are still technically flaring then. Ugh. I've been taking Tylenol twice a day to keep my temperature normal (it's usually around 99.1-100.1 every day) and my joints from hurting. Otherwise I can't get through the day.

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UC since 2002
Colectomy 11/8/2018
J-Pouch creation 4/4/2019
Reconnection 5/28/2019

valli1234 said...
Why do you have a fevers everyday ?

I would like to know the same. Before the colectomy I had daily low temperature like this and I was in Tylenol every day. I was flaring.

valli1234 said...

Try the voltern rub it helps my joints I only use extra strength.

Do you mean voltaren gel?

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UC since 2002
Colectomy 11/8/2018
J-Pouch creation 4/4/2019
Reconnection 5/28/2019