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

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Ulcerative Colitis
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Posted 11/9/2015 7:45 AM (GMT -7)
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.
Posted 11/9/2015 7:48 AM (GMT -7)
Let me get this right, you have had a colonoscopy and found inflammation in your bowels but you don't have IBD?
Posted 11/9/2015 7:57 AM (GMT -7)
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)

Posted 11/9/2015 8:07 AM (GMT -7)
I am only giving the information, I am willing to go down any avenue to be healthy again. I also know this Dr is the Cadillac of Dr's he works in a amazing hospital and the testing they do is advanced so I will trust him. After all the other Dr's prescribed medicine I took it I had other side affects, and I still had chrons/colitis symptoms so what do I have to loose, and if one person reads my story asks the dr and it works for them yeah, :) .
Posted 11/9/2015 8:17 AM (GMT -7)
I smell snake oil.
Posted 11/9/2015 9:22 AM (GMT -7)
I remember someone else saying they took cholestyramine and a quick look-up gave this:

Cholestyramine is also used in the control of other types of bile acid diarrhea. The primary, idiopathic form of bile acid diarrhea is a common cause of chronic functional diarrhea, often misdiagnosed as diarrhea-predominant irritable bowel syndrome (IBS-D), and most of these patients respond to cholestyramine.[3

I don't think this is "snake oil" since it is not something being promoted to sell.
Cholestyramine is also used to treat C. dificile.
Maybe it can help someone to check it out.
Posted 11/9/2015 9:37 AM (GMT -7)
Cholestyamine is often rx'd to people that have their gall bladders removed & end up with diarrhea for several weeks after surgery.
Posted 11/9/2015 10:51 AM (GMT -7)
No I am not selling anything, I have been a sufferer. I only shared what I learned. You can use it or ignore it. also if you would prefer I delete it I will.
Posted 11/9/2015 12:11 PM (GMT -7)
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 :) .
Posted 11/9/2015 12:30 PM (GMT -7)
I use Colesevelam (name brand Welchol) tablets to mitigate bile acid diarrhea. Since I had my ileocecal valve removed, I have more than average bile acid flowing into my colon.

But this is unlikely to cause the patterns of chronic inflammation seen in biopsies, or ulcerations specific to UC and CD.

I also do not thin CD secondary to US is a thing. You can have Crohn's colitis, or you can have CD misdiagnoised as UC; but UC does not cause CD. That is what secondary means.

I can see how bile acid issues and IBS-D can be confused or misdiagnoised. It is less clear how bile acid issues and IBD can be confused.

I doubt the things this doctor is supposed to have said. It is possible you did not understand, or you are leaving out some important bit of the story.

I do agree that if you seem to have yellow acidic (stinging) diarrhea after bleeding stops, that there may be some bile acid issues that could benefit form treatment.
Posted 11/9/2015 2:02 PM (GMT -7)
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.
Posted 11/9/2015 2:28 PM (GMT -7)
I gave the facts as they were given to me, also I never said all I said some were misdiagnosed. Anyway here is the info if it needs to be deleted let me know. I do pray its my solution. I did not stay on my drs plan it was not working. I took the meds prescribed daily same time and ate a bland diet, did not work. I could sit down and recoup my last 22 years of suffering but that would be a long story.
started 1993, I am glutin, lactose free. I
went to numerous drs told me lots of things from its not real to IBS
In 2012 I had 4 colonoscopies, a endoscopy, tested for lactose intolerance, gluten allergy. all ok
then they had me swallow the capsule, said I had chrons secondary to colitis.(yes this is what he said)
Put me on steroids, calmed it that's all Lots of antibiotics.
2013 numerous tests. Scopes.
Flagyl, good while I was on it, did probably 6 rounds of flagyl and prednisone in 2013.
2014 more tests, showed ulcers still in small intestine, tried pentasa. More antibiotics, pain meds. Lost and gained weight, sick most of the time, had 2 strokes. losing bowel control 2-3 times a week
2014 quit all meds went to a naturalpathic Dr. Some relief, did find out the digestive enzymes he put me on were the same concept as the Cholestyramine I am taking now. Not as strong. This is what it is I gave the info, as it was given to me. If this dr is wrong and I get sick again then so be it. I am not loosing anything on the chrons meds I was sick. I could let them give me the bag but I am not ready to say ok. I only posted this in hopes to help someone, and to share what I learned.
Posted 11/9/2015 5:47 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.
Posted 11/10/2015 5:05 AM (GMT -7)
:) thankyou L Rachael, a little positive is all I need. I wonder if a natural form of this would help you. My Naturalpath said digestive enzymes is all it is, only stronger. And yes I agree it was confusing, lots of tests and meds, I am praying this is it.
Posted 11/10/2015 6:13 AM (GMT -7)
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.
Posted 11/10/2015 8:13 AM (GMT -7)
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
Posted 11/10/2015 8:25 AM (GMT -7)

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.
Posted 1/24/2021 9:55 PM (GMT -7)
I seem to have something quite similar to Dusty, the original poster.

I was diagnosed as having ulcerative colitis by my general practitioner using sigmoidoscopy and biopsies 11 years ago.

Like Dusty, and like many of you, I have been suffering ever since. I’ve had good periods that included a full year of solidify poop. But, mostly, I’ve had diarrhea and mucus.

On top of it all, I’ve had lots of joint problems, including numerous tears in my menisci, arthritis in my thumbs, surgery in my left elbow and most recently a tear in my left rotator cuff. Plus, my thyroid is just a mess. It is, my doctors say, under attack from my immune system.

Well, things were going along pretty well with the colitis until about two months ago. I slipped into a flare that has me going diarrhea perhaps 12 times a day - although it has been worse since drinking the colonoscopy prep several days ago.

I went to a new gastro and he said he suspected I had been misdiagnosed.

He wanted a colonoscopy.

He got up there on Thursday and saw no inflammation at all.

He showed me pictures and to my untrained eye he is right. The colon looks beautiful.

I was awake for those sigmoidoscopies that my gp used to perform and I could see the inflammation and ulcers on screen back then. It looked terrible back then.

So, I woke up and the gastro said, “I told you it isn’t colitis.”

I can’t say I disagree with him.

He did biopsies but the results won’t be back for two weeks. But, he seems to have no doubt about what they will reveal.

So, he told me pretty much the same as the op’s doctor told her - that sometimes there’s a problem with the bile duct. He told me to pick up my prescriptions and he said I should feel much better very soon. The medications are 625 mg of colesevelam and 20 mg of pantoprazol, a ppi.

The pharmacy is having a difficult time filling the prescriptions so I have nothing to report on that score, yet. But, I wanted to say that the original poster is not nuts. I was told much that same as she was told. I know it was years ago. But, for what it is worth, here it is.
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