Author Topic: Ulcerative colitis?  (Read 1300 times)

Cassi307

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Ulcerative colitis?
« on: March 04, 2017, 01:12:21 PM »
I haven't been here for awhile but I need info from people with experience.

In October I had my first bout of painful left lower abdominal pain that lasted a few weeks. During that time I had two abdominal CAT scans but they were negative. I was told there was no way that it was diverticulitis. It was suggested that I was constipated but since I was having multiple bowel movements I thought that was an absurd suggestion. After the initial few weeks the pain faded and disappeared. They would not do a colonoscopy because I had one in 2014.

I just had it happen again. I was so ill with this one. I skipped the GI doc this time because I felt he didn't believe me anyway. I asked my rheum and he didn't think it was sjogrens connected. There's no diarrhea or bloody stools,only frequent urges to go. My symptoms aren't classic for ulcerative colitis but I was wondering because each pain episode occurred while my inflammation markers were high and I was in a flare.

Can anyone relate to this? I see the GI doc on Monday. He is the same guy I saw last time and he is the head of Gastrointestinal at our local med center. I am going to insist they do some testing because I do not want to go thru this again. Thoughts?
Sjogren's, seronegative RA,  ckd, hyperparathyroidism, asthma,  osteoporosis, tremors, macular degeneration. Meds:  cardizem cd, low dose Prednisone, Rituxan, Preservision, calcium with d

irish

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Re: Ulcerative colitis?
« Reply #1 on: March 04, 2017, 06:03:06 PM »
My late hubby had Celiac sprue and eventually had diverticulitis. But, he also had other symptoms that were indicative of ulcerative colitis. He did had some bloody stool at times. He had the full GI work up and colon biopsy of this tissue in the lower left hand quadrant of the bowel. It came back indicative of ulcerative colitis. He was put on Asacol which is a pill that helps with the inflammation. He didn't take it all the time as the pill is a deep red and people with celiac have problems with the deep dyes in pills. He would take it when he could feel a spell coming. Spring and fall and high stress times really kick up the colitis.

Well, many years later he was back to GI and had scoping for the umpteenth time and they did a biopsy again. This time it came back as microscopic colitis which is more common in celiac disease. This made sense. According to the doc testing had improved and they were able to differentiate the types of colitis more easily. The doc explained that the ulcerative colitis affects the upper mucus membranes in the colon and there is more sloughing of tissue and bleeding with this colitis. These people can get extremely ill and need to be followed closely as bleeding and infection can be dangerous and hospitalization is often necessary.
 
The doctor said that the microscopic colitis attacks the basement membrane in the colon and can cause some bleeding but is not generally as acute with the bleeding and doesn't generally slough tissue or at least as much tissue. In other words it is a milder form of colitis. With that being said I will say that my hubby suffered greatly during these attacks and occasionally would miss work. He also noticed that certain foods would set it off. Lettuce was really something that kicked off his colon.

I would ask the doc for at least a biopsy of the colon areas. These areas are usually abraided or red scuffed up tissue that looks bright red as opposed to the pink of healthy tissues. A biopsy shows a certain type of tissue and cells that are common to colitis. They can differentiate the types of colitis usually. I hope you can get some help. There is no reason that you are not getting help. This is a real illness and it might behoove you to do a search for a good GI doc in your area or state that specializes in the autoimmune diseases of the colon. Good luck and keep us updated. Irish
« Last Edit: March 05, 2017, 12:05:16 AM by irish »

Cassi307

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Re: Ulcerative colitis?
« Reply #2 on: March 04, 2017, 07:22:42 PM »
Thanks Irish.
We have two hospital groups here: Barnabas and Carepoint. I can't use Carepoint because Carepoint and Horizon are suing each other. I have already tried two other GI docs from Barnabas when I had pancreatitis and they were not good. I no longer drive so my options are limited. I plan to push my current guy. I also have the benefit of a patient care coordinator at Horizon who said she will advocate for me.
I need answers. I don't want to do this again.
Sjogren's, seronegative RA,  ckd, hyperparathyroidism, asthma,  osteoporosis, tremors, macular degeneration. Meds:  cardizem cd, low dose Prednisone, Rituxan, Preservision, calcium with d

irish

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Re: Ulcerative colitis?
« Reply #3 on: March 04, 2017, 11:55:20 PM »
Good luck to you. I am glad that you have an advocate. Irish