Hey all, Had my colon out in '09 after developing dysplasia and battling moderate to severe UC for about 9 years. It was a rough road when I had the disease and when I had my colon out. Lots of...
Thanks, everyone! Actually it's harder to kick this cancer after IBD. Apparently it is much more resilient to chemo and radiation. It often comes back, and when it does, it goes to liver, lung, brain...
My doc started mentioning surgery about year six of my disease, and I never thought I would have it or need it. My disease was fairly bad. I had to leave college and work for a year because of it at...
Hi All I have an ileostomy - S-pouch - and tend to get stuff "stuck" so I go periodially to my out-of-town surgeon to get dilated under anesthesia and cleaned out. I haven't been in about a year. I...
My doc actually wants to try for another reattachment. First did not go well and almost killed me, but he's confident this time would go better. While I haven't decided, and I'm a little...
Thanks all!!...
Hi all, My insurance just changed and I rely on Eakin seals, but they're quit costly now. I was just at my doc and the ostomy nurse recommended something by Coloplast or Convatec that is similar but...
Hi Salamore, Thanks! Yes, I have one, and no, it hasn't caused too much trouble. My stomas (they revised mine after I kept getting dehydrated and sick) have never been very good. I need convexity...
Thanks, everyone. These are good ideas. It just takes so long to get into one. I will push it with my primary doc. Everyone seems so laid-back. I'm the ONLY one who is ALARMED other than my surgeon...
I have not. I have inquired about seeing an endocrinologist, but the wait is incredibly long. I was going to go to a bariatric surgeon - not for surgery but to see if he had any insight. honestly, i...
Thanks, Sue. I was thinking about Weight Watchers ... I had a bad experience with a previous nutritionist when I had UC. She ended up asking me what I could eat and didn't really help me much. I...
I'm two years out, and jeans still bother me. I find that skinny jeans or jeggings don't hurt as much (the waistband is the problem, I think). But traditional jeans cause discomfort and I almost...
Yes, my doc actually diagnosed me with PTSD when my UC got really bad. After a series of surgeries and other health issues since losing my colon, I experience quite a bit of it. Even now I have...
I've always had some weight challenges - even when I had UC - but the last year and a half has been incredibly challenging. I had UC for 10 years. Had surgery at the Cleveland Clinic. They told me it...
Convex really helped me (I wear Marlens) and when my skin is bad, I use the Hollihesive skin things and/or the Eakin seals. They don't irritate like paste and while they may not last awhile, they...
Sometimes every three days, other times four times a day. I never know....
Hi all. I really could use some insight. I've always had some weight challenges - even when I had UC - but the last year and a half has been incredibly challenging. I had UC for 10 years. Had surgery...
Thanks, I am going to post there, too. I should have added that I just turned 30 in April. Thanks for the link - will look into it. I just feel like the doctors seem to appreciate my frustration but...
I have no colon, either, and eat greens. They do come out like they went in, and sometimes I lay off if I'm feeling a little bloated or full, but I eat salad pretty regularly....
Mary, Welcome and I'm sorry you're part of the club. Have you given any thought to surgery? I did Remicade and Humira and I didn't notice anything, but my doc said some of her patients did. Or...
I had UC for about 10 years and started to develop precancerous changes, so I had to have mine out. Mine never went into remission fully and I was on all the drugs and nothing really worked. I had...
I had one when I had colitis ... it might be worth a shot to try until you feel like you are up for walking. I've been post-surgery (first surgery to get ostomy in july 09, reversal in nov. 09, and...
Wet wipes, and DEFINITELY some A&D or Bordreaux Butt Paste. I tries what the hospital had, too. Good luck to you! Cleveland Clinic is awesome. Feel like I live there half of the year. :o)...
I work as a reporter for a weekly newspaper - but when I got sick - I worked in day care!!! Kind of odd how that's a theme here. Day care (I was a college student at the college's day care) was...
I am getting my colon out asap. Had no idea he had UC. I always say that after suffering with this 8 years, if I get cancer, I'm gonna kill somebody. I haven't had a scope in maybe 2 years - my...
I'm thinking of you guys - how awful. Good luck. And I'm glad you found us....
Remicade did nothing - but I did enjoy watching tv for a few hours and snacking on Lornadoons. It also gave me a kick in the butt when I felt sorry for myself, seeing people with cancer getting...
Before they figured out what I had, I would drink wine when I ate and I was able to keep food in me ... but beer definitely does a number on me. I feel good in the a.m. but as the day goes on feel...
While I don't want to play doctor, they always tell me not to take Ibuprofen but I live on the stuff for sinus pain ... so ... I haven't seen it cause me too many problems, I just really try to limit...
MBX, you captured my life with your post. I've been okay flying, but the few times I've flown, I was not real sick, so I was okay. That's a tough one though, I'm sure, for many. Sucky, sucky, sucky....
Thanks summer, and everyone else. Info is greatly appreciated. I plan to talk to a few "live" j-pouchers. Sucks we have to get to this point, doesn't it? In the back of my mind, I thought for sure...
I've been having the same thing. Seemed to increase the longer I've been sick. I know it's partly panic/anxiety b/c I will start to feel like I have to find a bathroom NOW and something distracts me...
I'm currently going back to my ENT - had sinus surgery when I was 21 and tonsils out as a kid. Always have had allergy/sinus issues. They run in the fam. My allergies actually started going crazy...
Hate to be a downer, but my problem is my potential surgeon (who is tops in the city I live in) said it's best to have C-sections if you have this, which is fine, but I would prefer not having to...
I've had something similar, went off second round of prednisone several months ago. My primary had me take a blood test to show my Vitamin D levels and other things, and wouldn't you know they were...
You have to push to get the right doctor and not stop til the diagnosis makes sense. The first dr I saw told me to take some lactobacillus and come back in 3 months. I was going 20+ times a day had...
my hair ( always a bit wavy) got super curly when I lost a lot of it and went on Imuran. After a few years though, and since hair grew back, it's back to old self....
I took it about 3 or 4 time and a couple days after the latest, had to go to the after hours clinic because I literally couldn't move. My body froze. Doc on duty called a GI doc, who diagnosed it as...
I did Remicade three or four times, never noticed much, except I received it where patients were being treated for cancer, so it was a great reminder of how much worse I could be. The last try, I got...
I am 26, have had colitis (with just a few mnths remission in total) for 7 years and just started exploring surgery. I've tried all the drugs out there except for Humira and worry about the effects...