Just checking in--Saturday October 6th is "World Ostomy Day"--so Happy World Ostomy Day! I will be celebrating my 1 year "stomaversary" (the anniversarybof my total colectomy) on Oct. 17th! I cannot...
So good to hear from you! Thanks ipoop!...
Thank you Countess, NSSG, and Sara! I figure I shared all the bad times so it's only fair that I update now that things are going well. I want others to know that there is light at the end of the...
Guysssss! Update: I've been working really hard to get healthy and back in shape since my colectomy in Oct. '17. I cannot believe it's been 9 months already! As I previously wrote, the hardest part...
Thank you FG! I haven't been around, so how have you been doing?...
GeniusUC, You seem very mature and level-headed. Here's what I can share--I had my total colectomy in October 2017 and my ostomy will be permanent. I can do everything I did prior to surgery--wear...
Hey Kanva! Still think of you! So glad you are loving life post-op! ❤...
Hey ipoop! I really feel that a permanent ostomy is the right decision for me. Because my diagnosis was changed from UC to Crohn's Colitis, due to severe perianal disease--I'm sure you remember but...
Hey guys, it's been 3 months since I last posted and I feel kind of bad that I "abandoned" the forums for a bit, but I have been busy living all the life I missed while I was sick... ...I was riding...
That's amazing! Congrats!...
Yay for improvement Kanva! Have a great weekend!...
Hey NSSG! Not trying to "hijack" Kanva's thread but for the record I am good! Finally weaned off prednisone & definitely experiencing adrenal fatigue as well as some rectal inflammation, but it's...
Kanva-- My record was FIVE bag changes in one day. And sometimes it's bad for a few days, and then something I do starts working and everything goes smoothly for a bit. I've had blow-outs in public...
I would feel very agitated after taking biologics (akin to anxiety but more just moody and uncomfortable) and very exhausted. I can't say they gave me insomnia or panic attacks though....
Minnie-- Congrats on your PhD! Yes it sounds like you were in "fight or flight" survival mode and now you are crashing. It also sounds like the Remicade isn't working very well anymore. You might...
Hi NCOT! Glad you're gettinng out and about! XO...
Well if you are in NYC as your name suggests, then you should consider seeing a GI and CRS at Mt. Sinai--they are the best. It does sound likely that you have a fistula. I am sorry to tell you that...
Well then why not have your rectum removed?? After the rectum is removed and your butt is sewn up (barbie butt) you should be fine! Everyone with a permanent ostomy eventually needs their rectum...
Kanva-- I've had A LOT of leaks, like more than a dozen in the last 12 weeks. So obviously, I'm not an expert. I have super thick output and that is definitely part of my problem. No advice, I just...
I'm so excited to read about your results! I had a colectomy in October and feel better but still have blood/mucus from what's left of my colon/rectum and I have joint and muscle pain, fatigue, and...
Hey NSSG and friends! Happy New Year! Since I gelt the best I had in years, I was really busy over the holidays, entertaining in my home and doing lots of fun stuff with toddler. I drank wine! I had...
Congrats on surgery! FWIW, eating a few marshmallows just before you want to change your bag (maybe 10 minutes) will stop/slow the output long enough to get the job done without too much hassle....
Yeah you are not in remission (read your history and you have really never been in remission in 2017) and you will most likely flare when you get down to 20mg and below. When that happens (it...
Congrats! I had my surgery in October. It was such a relief--free at last! I'm with the rest of them--don't do business while in the hospital b/c pain meds make you loopy without you realizing it....
UBT-- So glad the Stelara has given you some quality of life, but of course I hate to see you struggling with the fiztulas. I was supposed to see IBD Specialist before Christmas but changed my...
Me too! Me too! I definitely intend to meet up with you Clo! It would also be fun to meet up as a group of Crohnie girlfriends! I'm in Baton Rouge, so just 4 hours or so from Houston!...
As far as acommodations go, Cleveland Clinic should have plenty of affordable options--wherever you go, I would suggest looking into VRBO or homeaway or some other sort of website where owners list...
Emailed you...
Hey UBT! So you talked to Mayo but I suggest you speak with Cleveland Clinic and also Mount Sinai hospital in New York--much closer to you than where we are in South. My hospital is ranked 27th...
I miss you! Think of you often as I adjust to life with an ostomy. I don't know if you saw my latest update but pathology on my colon came back that it was definitely Crohn's and not UC. My CRS said...
Actually I was hardly passing any stool, it was mostly just blood...all day every day...for 10 months until I had surgery this past October. While on high-dose prednisone and stelara--I don't know...
For the record, I had a very obvious perianal fistula and had an MRI in March which showed *nothing*--no fistula at all. Mine was superficial (did not go through any muscle), so much so that my CRS...
The PPD test is really inaccurate. I always tested positive on the PPD but negative on chest x-rays and more importantly I test negative on the *quantiferon gold* blood test. I had a GI try to tell...
Pregnancy put me into FULL REMISSION! It was glorious--I did take a lot of Pentasa during my pregnancy, but I barfed it up or skipped it half the time with no ill effects. And I was able to quit...
Thank you FG-- Excellent timing to read this as I just woke up (4:45am) to empty my bag and toss back my prednisone (I do better when I take it very early in the morning). And I was feeling...
NCOT, My heart goes out to you. I'm sorry for your loss. I'm sorry you didn't get the parents you deserved--thst your dad is an abusive *%# abd that your mother obviously allowed it and didn't do...
Hey NSSG! Isn't it nuts?! I did not have any of the definitive markers for Crohn's in my bloodwork. No, they have not checked my upper GI via scope but I did have an MRI where I had to drink all the...
Good to hear that you're doping much better! Wow so it was Crohn's disease, I assume you'll just stick with the end-ileo and appliance then?[/quote] I know right?! I mean I got *better* when I...
UPDATE: Hey guys So I saw my CRS today and got the results of my pathology for my colon... It's Crohn's. Without a doubt. I was surprised. I really genuinely thought they would say it was UC. The CRS...
Yes I have dealt with thrombosed hemorrhoids this year--they really are unmistakeable so I do not understand how your doctors did not give you a diagnosis. They are incredibly painful and I'm sorry...
I've used a dexamethasone steroid mouthwash. But what has really helped me is rinsing my mouth with a solution of 50/50 water and hydrogen peroxide--the peroxide is anti-bacterial and has made a...
TAM-- I saw that you are quitting Xeljanz. What are you going to do? I hope my results from surgery make you feel less afraid of it. And I did it with a toddler and sick husband and on high-dose...
Thanks FG! I haven't spoken to my CRS yet about his recommendations (ostomy vs.j-pouch) and last I knew pathology had not released their report on my colon--it still remains to be seen if I have UC...
Yes I agree with you that nurses with ostomies or who have had ostomies have a lot to offer to ostomy patients. And there is a shortage of ostomy nurses, from what I've heard. I have a BA in...
NSSG! I didn't see your original post or I would have replied (I was 2 days post-op so still pretty loopy on meds). Thank you for thinking of me! I am now 3.5 weeks post-op and no regrets--the...
Hey Fletch! No real advice--I have always had bowel issues (constipation) from a young age and have never known "perfection" so-to-speak. Female hormones make the immune system flare and that is why...
I was told that eventually you will require a second surgery, either to continue with the j-pouch or to remove the rectum--but I'm sure some people have stopped at one surgery. I had my colectomy 3...
I "failed" Stelara but it was ok as far as side effects go--save for it made at least half my hair fall out, which was not cool....
Are you on Remicade or some other biologic? The biologics are said to help heal fistulas. I have a perianal fistula but it didn't go through the muscle and I never had a seton or anything--I took...
The Cipro tears me up every time, so my guess is that is what is making your D worse. The chills and general feeling like dog poo can be attributed to the Xeljanz and then possibly the UTI. If you...