I also put this on the chrons discussion and ibs becasue it may help

I haven't been here for awhile, last time I was here I was trying the holistic treatment to what I thought was chrons secondary to colitis,:( . Anyway for a recap I was diagnosed with Chrons secondary to colitis, the medicine I was on did not work, so I went the holistic way. That worked about half, I was taking Probiotics, Fish oil and Anti-inflammatorys from Chiropractors blend. My symptoms were getting less and less but my diet very bland, and I was loosing weight. I had a tumor removed that was non-cancer and my surgeon referred me to a gastro dr. he was also a cancer Dr. But specialized in cancer of the digestive tract. I do not have any cancer in my body, I do not want cancer so I was scared. This is what he told me and his treatment. I can not actually keep you as a patient but since you were referred by a colleague I am going to help you, you do not have Chron's, or colitis( I almost hugged him lol) He said what he thinks I have gets confused for that and IBS I don't have that either YEAH!!, this is what I may have, there is a duct that produces biliary fluid and sometimes it does not function properly, now he used terms I could not follow but he put me on Cholestyramine for oral suspension USP, I started it Thursday of last week, today I am symptom and pain free, the other thing he said that can cause these symptoms in women is the Episiotomy or tearing, it can cause problems in the bowel and it may take years to show up. So he referred me to a Urogyn Dr. I tell you this because he told me Chrons develops in most people between 20-25 and 55-60 I got it at thirty. Also this Dr works at one of the best hospitals in the United States, The Cancer Treatment Centers of America, they study they research they no, and hopefully I pray end my long journey of suffering, :) if anyone wants to take this info to there dr it could be worth the try to get checked, my dr told me most dr's don't look for these issues.

Let me add they scoped me from beginning to end. they told me chrons seconday to colitis. Ulcers in the small intestine. I also swallowed the capsule, and they scopped my stomach. This dr told me that some meds can cause ulcers. I was on Naproxen prior to the scope. But I had symptoms since 1993, I went to numerous Dr's. they told me Chrons, Colitis, Ibs. None of the meds worked. I was sick most of the time. I was so bad I could not eat out, I lost bowel control. But I am serious is only been since Thursday, at first I was sore in the stomach area but that is subsiding, I kinda googled it but this time I am just going to listen to the DR. no herbal supplements, I tested the limits yesterday I had pizza and I didn't get sick :) . That drink I take daily it tastes bland but it works so far, he also has done some blood work I am waiting on results, When he checked my Vit d levels they were 21, my WBC count was low and I had zero energy, today I feel so much better I have an appetite, I am still weak and maybe this is not the answer but I shared and I pray it is.

Post Edited (dusty1999) : 11/9/2015 8:02:05 AM (GMT-7)

I smell snake oil.

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Thyroid forum moderator

Ulcerative colitis; 9th year of remission with Remicade. Inflammatory osteoarthritis; osteonecrosis from steroids. Grave's disease post-RAI and now on Levothyroxine. Type II diabetes induced by steroids. #ucsucks

Cholestyamine is often rx'd to people that have their gall bladders removed & end up with diarrhea for several weeks after surgery.

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Susie
Moderator Chronic Pain & Psoriasis Forums

I still have my gallbladder, my natural pathetic said that it promotes colestrol which comes through that duct so they may be thinking its clogged or has scar tissue, but the gastro dr said it mimics chrons/colitis and IBS. that's why some people get that diagnosis. I hope he is right, and that stuff he prescribed is working I ate at Hardees and not sick :) . Guess I shouldn't test the waters but I cant help it its been so long since I could eat it all looks so good :) .

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bertha gordon

I hope you find relief with this new treatment. You started it only Thursday of last week, so hopefully it continues working.

What you describe is very odd, a little hard to follow, and I think there must be more to this story. You did admit you didn't follow all of what your doctor said, so it's possible that key details were infact missed. I understand your excitement, we're all very frustrated when things aren't working and we're suffering/miserable.

However, I do not believe many, if any of the rest of us were misdiagnosed as you say. The age ranges you cite are the most common age ranges for uc diagnosis, but not the only ages possible. I was diagnosed with uc at 32 and everything was conclusive biopsies, scope, and the medications have worked very well for me, so I have no doubt in my diagnosis.

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Moderator Ulcerative Colitis
John, 37, UC in remission
Rx: Remicade @5mgs/kg/8wks + 6MP @50mgs
I had read Everyone Poops, but didn't realize that a uc diagnosis meant I'd now have to poop for everybody.

Post Edited (iPoop) : 11/9/2015 2:06:49 PM (GMT-7)

The initial IBD diagnosis thing is confusing, but the bile issues is apparently pretty common. My doctor has tried cholestyramine and welchol for me too. I was had okay colonoscopy results and terrible symptoms, so they suspected too much bile. The meds are basically cholesterol medications that soak up excess bile that a malfunctioning gallbladder might produce. I guess that some people have gallbladder issues that don't show up on tests (no stones, structurally normal, etc...) and these meds really, really help them.
In my case, the problem was mesalamine intolerance. But for those of you who have IBS as well as IBD, this might be worthwhile.

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Pan colitis and rapid gastric emptying
Currently: Medrol, Imuran, Klonopin as needed, Wellbutrin, supplements (NAC, zinc, fiber).
Tried: all of the 5 ASAs, Flagyl, Cipro, Canasa, hydrocortisone suppositories, prednisone, Uceris, Entocort, and FODMAP, SCD, an elimination, and intermittent liquid diets.
Mesalamine intolerant.

If I've read your posts correctly all your colonoscopies were clear but small bowel tests showed ulcers in the small intestine? (Also, did you really go 19 years without a single colonoscopy then have 4 in one year??)

I'm no expert but to me it doesn't seem that obvious that you had Crohn's, let alone colitis. There's several causes of small bowel ulcers. Normally there are other signs of small bowel Crohn's, e.g. thickening of the bowel wall. I wouldn't be surprised if your gastro doc was on the money and has correctly diagnosed and treated your issue: I certainly hope so.

But unfortunately few of us who make our way to these boards have been misdiagnosed. We really have IBD, sadly.

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Dx Crohn's in summer of 2000. (Yay )
Tried and failed: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, various diets.
Had surgery Feb '13 - subtotal colectomy with end ileostomy. First thing to put me into remission in 13 years.
Had second surgery 10th July '15 to reverse the stoma and connect the ileum to the rectum. Feeling rough.

Martinco said...
I hope what you're saying is true and that you get better. I would rather not dismiss what you have to say is a lie, but rather investigate for myself. Medicine and alternative therapies work for me so I believe that I do have ulcerative colitis. However if this can just help one person who meds have failed then this post was worth it

Good grief, there's being rightly sceptical and then there's just being, well, obtruse. People, cholestyramine is a common and frequently prescribed medication. I never doubted the topic creator's sincerity from the first post but if I had, the subsequent posts would have confirmed it for me. It's literally as simple as the GI reckoning dusty has a gallbladder issue instead of Crohn's or colitis. Dusty was trying to help out. Unfortunately 99% of the people here won't be able to benefit from it, but it was a kind thought.