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beanie6421

HealingWell Forum
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Member Profile
Display Name
beanie6421
Profile Created
2/11/2003 11:50 AM
Last Seen
12/9/2014 12:19 PM
Total Posts
51

Last 50 Posts

Ulcerative colitis, ostomy, now cancer

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...

12/9/2014 11:44 AM

Ostomies
UC - ostomy - now cancer

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...

12/9/2014 10:51 AM

Ulcerative Colitis
So annoyed!!!

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...

12/9/2014 5:38 AM

Ulcerative Colitis
UC - ostomy - now cancer

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...

12/9/2014 5:31 AM

Ulcerative Colitis
Help with rectail pain

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...

6/8/2014 8:59 PM

Ostomies
Recommendation for item similar to Eakin seals?

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...

1/30/2013 8:52 PM

Ostomies
Recommendation for item similar to Eakin seals?

Thanks all!!...

1/30/2013 8:51 PM

Ostomies
Recommendation for item similar to Eakin seals?

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...

1/29/2013 5:55 PM

Ostomies
Excessive weight gain

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...

12/29/2011 11:17 AM

Ostomies
Weight Gain after subtotal colectomy

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...

12/22/2011 1:54 PM

Ostomies
Excessive weigh gain

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...

12/22/2011 1:52 PM

Ulcerative Colitis
Weight Gain after subtotal colectomy

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...

12/22/2011 12:24 PM

Ostomies
How long until jeans were comfortable?

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...

12/22/2011 12:23 PM

Ostomies
Has anyone gotten PTSD from medical procedures?

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...

12/22/2011 12:17 PM

Ostomies
Weight Gain after subtotal colectomy

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...

12/22/2011 12:11 PM

Ostomies
Major skin irritation

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...

12/22/2011 12:10 PM

Ostomies
How many days do you wear a pouch?

Sometimes every three days, other times four times a day. I never know....

12/22/2011 12:07 PM

Ostomies
Excessive weight gain

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...

12/22/2011 12:06 PM

Ostomies
Excessive weigh gain

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...

12/22/2011 12:06 PM

Ulcerative Colitis
Don't eat green leafy vegetables

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....

12/22/2011 9:58 AM

Ulcerative Colitis
New member

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...

12/22/2011 9:55 AM

Ulcerative Colitis
Excessive weigh gain

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...

12/22/2011 9:52 AM

Ulcerative Colitis
How do you know when it's time?

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...

12/22/2011 9:45 AM

Ulcerative Colitis
silly question - handicapped parking?

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...

3/29/2011 10:06 AM

Ostomies
Expectations after reversal

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)...

3/29/2011 9:57 AM

Ostomies
Jobs full or part time

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...

7/17/2008 11:41 AM

Ulcerative Colitis
Tony Snow

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...

7/17/2008 11:14 AM

Ulcerative Colitis
5 Year Old Daughter with Ulcerative Colitis - Help please?

I'm thinking of you guys - how awful. Good luck. And I'm glad you found us....

7/17/2008 11:11 AM

Ulcerative Colitis
Question for those who have tried Remicade

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...

7/17/2008 11:09 AM

Ulcerative Colitis
drinking alcohol with UC

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...

7/17/2008 10:56 AM

Ulcerative Colitis
I need advil, please advise, i was told to stay away from it.

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...

7/17/2008 10:55 AM

Ulcerative Colitis
panic attacks & UC

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....

7/17/2008 10:52 AM

Ulcerative Colitis
I finally spoke to a J-poucher

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...

7/17/2008 10:48 AM

Ulcerative Colitis
panic attacks & UC

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...

7/10/2008 10:57 AM

Ulcerative Colitis
Sinus Issues

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...

7/10/2008 10:49 AM

Ulcerative Colitis
I finally spoke to a J-poucher

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...

7/10/2008 10:37 AM

Ulcerative Colitis
Body Aches All Over

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...

7/10/2008 10:22 AM

Ulcerative Colitis
hereditary

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...

10/22/2007 9:36 AM

Ulcerative Colitis
son with uc

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....

10/22/2007 9:29 AM

Ulcerative Colitis
Remicade - who all takes them - and how long before you got any results - what bad reactions

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...

10/22/2007 9:23 AM

Ulcerative Colitis
Remicade not working - Humira, Enbrel etc..

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...

10/22/2007 9:14 AM

Ulcerative Colitis
How does surgery actually "cure" you?

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...

10/22/2007 9:05 AM

Ulcerative Colitis
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