Open main menu ☰
HealingWell
Search Close Search
Health Conditions
Allergies Alzheimer's Disease Anxiety & Panic Disorders Arthritis Breast Cancer Chronic Illness Crohn's Disease Depression Diabetes
Fibromyalgia GERD & Acid Reflux Irritable Bowel Syndrome Lupus Lyme Disease Migraine Headache Multiple Sclerosis Prostate Cancer Ulcerative Colitis

View Conditions A to Z »
Support Forums
Anxiety & Panic Disorders Bipolar Disorder Breast Cancer Chronic Pain Crohn's Disease Depression Diabetes Fibromyalgia GERD & Acid Reflux
Hepatitis Irritable Bowel Syndrome Lupus Lyme Disease Multiple Sclerosis Ostomies Prostate Cancer Rheumatoid Arthritis Ulcerative Colitis

View Forums A to Z »
Log In
Join Us
Close main menu ×
  • Home
  • Health Conditions
    • All Conditions
    • Allergies
    • Alzheimer's Disease
    • Anxiety & Panic Disorders
    • Arthritis
    • Breast Cancer
    • Chronic Illness
    • Crohn's Disease
    • Depression
    • Diabetes
    • Fibromyalgia
    • GERD & Acid Reflux
    • Irritable Bowel Syndrome
    • Lupus
    • Lyme Disease
    • Migraine Headache
    • Multiple Sclerosis
    • Prostate Cancer
    • Ulcerative Colitis
  • Support Forums
    • All Forums
    • Anxiety & Panic Disorders
    • Bipolar Disorder
    • Breast Cancer
    • Chronic Pain
    • Crohn's Disease
    • Depression
    • Diabetes
    • Fibromyalgia
    • GERD & Acid Reflux
    • Hepatitis
    • Irritable Bowel Syndrome
    • Lupus
    • Lyme Disease
    • Multiple Sclerosis
    • Ostomies
    • Prostate Cancer
    • Rheumatoid Arthritis
    • Ulcerative Colitis
  • Log In
  • Join Us
Join Us
☰
Forum Home| Forum Rules| Moderators| Active Topics| Help| Log In

Any relief from Crohn's

Support Forums
>
Ostomies
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
profile picture
PoppaDocbefartin
New Member
Joined : Nov 2020
Posts : 3
Posted 11/19/2020 9:57 PM (GMT -7)
So I'm looking at the option of having a full proctocolectomy in the near future, I have so many questions racing my mind and I just want some closure and I found this place to be informative. Ive had Crohn's for over 11 years and it's always be confined to my rectum and colon if I was to go ahead and have this surgery what are the chances of it moving to the small bowel? Has anyone been in similar situation as mine ? Do you still use Crohn's meds? Was surgery painful? How long did it take for you to recover and do you live a normal life with your ostomy? sad I'm sorry but I have so many questions before I decide what to do.
profile picture
straydog
Forum Moderator
Joined : Feb 2003
Posts : 18251
Posted 11/21/2020 7:07 AM (GMT -7)
Hi, happened to see your post. Sorry to read that you are struggling so much. You say you have crohns, if your colon is involved typically that is UC, crohns affects the small bowel.

What medications have you tried & failed. Typically here in the US a person has to try at least 2 biologics & failed those before insurance will pay for surgery. What is your gi telling you? Have you consulted with a surgeon?

Sorry about all of the questions but your post is a little vague.
profile picture
PoppaDocbefartin
New Member
Joined : Nov 2020
Posts : 3
Posted 11/23/2020 9:35 PM (GMT -7)
Ive tried Imuran and 6MP. Had a reaction to Remicade and refuse to do anymore biologicals. Sometimes I wish it was UC but I've had patches of inflammation through out my Colon it's never effected the small bowel always confined to the rectum and Colon. My GI wants to try Humira but I'm so afraid of what happened last time and the cancer risk scares the living daylights out of me hence why I am considering this surgery
profile picture
halo52208
Regular Member
Joined : Jan 2012
Posts : 279
Posted 12/14/2020 11:08 AM (GMT -7)
Humara is awesome. But by time they tried it my colon couldn't be saved. It also helped my back pain. Check out Zac and Maggie on youtube. She has lots of information.
profile picture
clo2014
Veteran Member
Joined : Feb 2015
Posts : 935
Posted 1/7/2021 7:21 PM (GMT -7)
I am on Remicade. I have severe fistulizing Crohns disease and it is located in my colon. They thought it was UC until the fistulas started.
My Crohns disease started suddenly. Remicade caused such healing. The damage to My colon from the scarring and structures created a complete obstruction in 2016. We decided on a colostomy.

The surgery recovery was painful at the incision site. I was frightened about the stoma and appliances at first-but it was easy to learn and by post surgery week 3 I had it down. Here is the amazing part--once they removed that part of my diseased colon I felt so much better. I can not explain it. Every IBD person at my support group that has had a colostomy said the same thing.. I could not take very many pain meds. (All Pain meds really constipated me) I had 24 hours of tramadol and then it was suck it up and get on with it... So if you can take pain meds...it might not be as bad. It took me about 6 to 8 weeks before I was up and about...really getting around on my own. In 2019 strictures caused my colostomy to fail and they had to go in and fix it. I recovered quicker from that one in some ways.
I am still on Remicade. My family has cancer issues so I was very hesitant to take biologics...but here I am. Its a difficult decision to make and I understand your hesitancy.
If you have any questions feel free to ask.
Oh...most important thing...my quality of life is so much better. I never regret my surgery. And the people in my support group with ostomies...they swim, hike, go horse back riding, lift weights...they live their lives. If they hadn't told me they had an ostomy I would never have known.
✚ New Topic ✚ Reply




HealingWell

About Us  |   Advertise  |   Subscribe  |   Privacy & Disclaimer
Connect With Us
FacebookFacebook TwitterTwitter PinterestPinterest LinkedInLinkedIn
© 1997-2021 HealingWell.com LLC All Rights Reserved. Our website is for informational purposes only. HealingWell.com LLC does not provide medical advice, diagnosis, or treatment.