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wondering how this has helped other's with this disease?

I went to see my GI Doctor today. He told me there is no known cure for my inflammatory bowel disease.And I'll just have to make the best of it and he will give me med's or what-ever to help me cope with it. He prescribed Cholestyramine to take twice a day for my flares. He informed me that this might give me constipation and if so to back off or stop taking till the diarrhea comes back. My questions is for anyone who has taking this and what benefits they got from it, if any??? Please I am needing some feed back here.
Thank you!! marvanha..
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Avatar universal
I dont agree that everyone needs to take meds to treat crohns or US, i have had crohns for 13yrs and when i first got it they gave me meds for the crohns but it was not making it all go away.  over the past few years I have stopped taking the meds for crohns and only took the meds for the systoms, I have also changed my diet to suit my body. and I am like every other normal person now.  meds are good for some people and some do need to take them to be able to do things but not everyone needs to take them to control their problem there are so much more treatment out now these days.  I am no longer on any meds not even for systoms when I do have a slight problem I re check my diet then go from there.  
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Avatar universal
I am someone who tested negative to gluten but found out that taking gluten out of my diet stopped my bleeding within days and my other symptoms got better also.

The is no medical reason to eat gluten. Why would you have to ask your doctor about removing gluten? It's a very healthy diet. Just because it didn;t work for you doesn't mean anything. As TrudieC said there are many studies backing up how a gluten-free diet helps UC (and many other diseases as well).

If more GI doctors followed an "integrated treatment" protocol including diet control more UC'ers would get better faster. Drugs alone are only part of the story.
My 2 cents.
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483733 tn?1326798446
There are many scientific reports where it was reported after studies that they did find that many people with inflammatory bowel disease benefitted from a gluten free diet.  Here is a link to one of them http://www.ncbi.nlm.nih.gov/pubmed/17553753.  Not everyone benefits but it is worth a try.  Most doctors will recommend a low residue diet.  Try both and see.  
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Avatar universal
Hi Trudie,
I am not at all sure you are correct in saying that a gluten free diet will help with UC - gluten intolerance (it is not an allergy) can be tested by blood draws, and eliminating gluten without a gastro's advice is not to be recommended. I have recently had a severe flare after an allergic reaction to Remicade...I was tested for gluten intolerance, cut out gluten, yet still had severe diarrhea. My gastro (one of the best in England) advised me that I was not intolerant to gluten.

I would respectfully advise you to be careful in what you advise to new patients unless you can back it up with scientific evidence, especially when a patient does not have adequate medical insurance to get definitive advice from a qualified IBD nutritionist as to their diet.Where is the "proof" that you state? I think this is dangerous advice.

Liz.
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Avatar universal
Thank you!! I will inform my health advocate of our talk and see what she might think as I have to go thru her with any concerns I have. I know she told me once that if my GI doctor doesn't respond to my issues she is taking matters into her own hands and will then set it up to where I will go to another GI doctor in another city which is as much as 50 miles away and she said they as my health advocate will cover the expense. So maybe that is what I am facing in the near future. I do know she does want me to go ahead and have the upper scope done he set-up and she might be wanting to see what direction he will take from there. Because of me not having the money and I am getting the state aid help I guess everything is done in steps that take forever to manage in the mean time I sit and worry bout everything. I want to thank you again for all your info and you caring enough to take time out of your own stressful life to communicate with me and show you care and just know I care about you and all others who unfortunately have a serious illness. Thanks and GOD BLESS!!! P.S. I will keep you informed.
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483733 tn?1326798446
I really think you need another GI doctor.  IBD needs to be treated (and not the way you are currently) and you need a definitive diagnosis as to whether it is Crohn's or ulcerative colitis and the issues in your throat might be an indicator of Crohn's as it can be anywhere in your digestive system.  It is important they know your family history.  I can't say whether you should take the questran or not.  You do need to be on one of the anti-inflammatory drugs I listed.  That is standard protocol for IBD.  
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Avatar universal
I was told quite a few years back by another doctor that I have what he called (colitis) back then now they call it ulcerative colitis and the doctor I am seeing now just said I have a relatively mild case of IBD and he just needs to monitor it. Because i have been having such a difficult time with my throat closing up on me he has and a knot has formed right above my adams apple he is doing the upper scope on me the 20th of this month. I have some pretty good days and a lot of bad ones too!!! So should I be taking the questran or not? Or do I need to be taking something else as well from what I read of your info. I get worried some times. He told me to get fiber and to buy something like the tucks pads to keep it clean down there and because I have real bad swelling down there I use preparation h suppositories (I started using on my own) and he told me it won't hurt anything to go ahead and continue using that. I have and have had pain on my left side for years with swelling which my family say they can see the swelling with my clothes on and speaking of clothes I hate wearing anything tight. I usually run around the house with my lose pj's or gowns all the time when I know I don't have to leave the house. I have not been well for several years and this year they (the doctor's) are finally listening to me. I go in the 14th of this month to have my second testing done (they think) i have sleep apeana sorry misspelled it I know!!! and in Jan I had the finishing touches on my female parts being removed. I spoke to Marie Michelle bout that back when that was going on.Back a year ago my regular doctor sent me to have a ct w/contrast and all these things was coming up (cyst on my left ovary) now a completed hysterectomy inflammatory signs in my bowels so they sent me to my GI I have now he did the lower scope and said I have a bad case of hemmirods and brushed me off saying I am making a big  deal out of the ct scan, said he doesn't believe in them and now he finally after my health advocate spoke to him he said I have IBD, but not as serious as I am worrying over??? I read all the info and heard a lot of people say it is serious and not to take it lightly. So you believe I need another GI then?? Trudi I am so sorry I am rambling on, but I don't know of any body else who (other then my niece who died of crhons) who I can vent to or get ideals from or anything else. Thank you so much for the info and for just listening to me vent. GOD BLESS :):):)
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483733 tn?1326798446
Which do you have - ulcerative colitis or crohn's?  It is important to treat it so it doesn't get bad.  I had ulcerative colitis for 10 years before my bowel perforated and I had surgery to remove it and then had an ileal pouch built.  My son has severe ulcerative colitis but it is in remission with Imuran.  You need to see a different GI doctor.  Here is some information on treatments for you - I've added a couple of notes:

Dietary Restrictions: Iron supplements may offset anemia caused by ongoing blood loss in the stool. Raw fruits and vegetables should be avoided to reduce injury to the inflamed lining of the large intestine. A diet free of dairy products may decrease symptoms and is worth trying but need not be continued if no benefit is noted. (Trudie - it has been proven that a gluten free diet can help as well.  And try to avoid sugar as it can increase diarrhea)

Antidiarrheal Drugs: Drugs with anticholinergic effects (such as many antihistamines and some antidepressants) or small doses of loperamide Some Trade Names
IMODIUM
or diphenoxylate are taken for relatively mild diarrhea. For more intense diarrhea, higher doses of diphenoxylate or deodorized opium tincture, loperamide Some Trade Names
IMODIUM
, or codeine may be needed. In severe cases, however, a doctor must closely monitor the person taking these antidiarrheal drugs to avoid precipitating toxic megacolon.

Anti-inflammatory Drugs: Drugs such as sulfasalazine Some Trade Names
AZULFIDINE
, olsalazine Some Trade Names
DIPENTUM
, mesalamine Some Trade Names
ASACOLCANASA
, and balsalazide Some Trade Names
COLAZAL
are used to reduce the inflammation of ulcerative colitis and to prevent flare-ups of symptoms. These drugs usually are taken by mouth, but mesalamine Some Trade Names
ASACOLCANASA
can also be given as an enema or a suppository. Whether given by mouth or rectally, these drugs are at best moderately effective for treating mild or moderately active disease, but they are more effective for maintaining remission and possibly even reducing the long-term risk of colorectal cancer. ( Trudie - these are the drugs given to help prevent flares - you  need to be on these).

People with moderately severe disease who are not confined to bed usually take oral corticosteroids such as prednisone. Prednisone in fairly high doses frequently induces a dramatic remission. After prednisone controls the inflammation of ulcerative colitis, sulfasalazine Some Trade Names
AZULFIDINE
, olsalazine Some Trade Names
DIPENTUM
, or mesalamine Some Trade Names
ASACOLCANASA
often is given to maintain the improvement. Gradually, the prednisone dosage is decreased, and ultimately, the prednisone is discontinued. Prolonged corticosteroid treatment almost always produces side effects. When mild or moderate ulcerative colitis is limited to the left side of the large intestine (descending colon) and the rectum, enemas or suppositories with a corticosteroid or mesalamine Some Trade Names
ASACOLCANASA
may be helpful.

If the disease becomes severe, the person is hospitalized, and corticosteroids and fluids are given intravenously. People with heavy rectal bleeding may require blood transfusions.

Immunomodulating Drugs: Drugs such as azathioprine Some Trade Names
IMURAN
and mercaptopurine Some Trade Names
PURINETHOL
have been used to maintain remissions in people with ulcerative colitis who would otherwise need long-term corticosteroid therapy. These drugs inhibit the function of T cells, which are an important component of the immune system. However, these drugs are slow to act, and a benefit may not be seen for 1 to 4 months. They also have potentially serious side effects that require close monitoring by the doctor.

Cyclosporine Some Trade Names
NEORALSANDIMMUNE
has been given to some people who have severe flare-ups and have not responded to corticosteroid therapy. Most of these people respond initially to the cyclosporine Some Trade Names
NEORALSANDIMMUNE
, but some may still ultimately require surgery.

Infliximab Some Trade Names
REMICADE
, which is derived from monoclonal antibodies and given intravenously, is beneficial for some people with ulcerative colitis. This drug may be given to people who do not respond to corticosteroids or who develop symptoms whenever corticosteroid doses are lowered, despite the optimal use of other immunomodulating agents.

  


  
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Avatar universal
yes that is all he gave me?? said that he can not do any more then that for now??? he just admitted to me that day in his office what I have known all along.said he can only keep things calmed down, but it is a disease that doesn't go away.  back when he first took on my case he was rude bout my problems, until my health advocate got involved and said (whatever it was she said to him) cause now he acts better towards me. I have my good days, but for the most part a lot of bad days and the questan oh btw I have the generic form (cholestyramine powder 4 grams twice a day.  help some just not much as with all meds they have put me on they don't help me all the time and the pain I go thru when I have an attack is so unbearable at times I feel like I could pass out from it. Trudie what is expected with a disease like this?? yes I have read all the info i have been giving and found on medhelp and so forth. Thanks so much for getting back to me and sorry so long for me getting on here to see the responds I got. Thanks again yours truly Marvanh              p.s. he said mine is not severe yet, but it could lead to that???
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483733 tn?1326798446
Is that all your doctor gave you?  You should be on additional meds to control the disease, not just something to control the symptoms.
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Avatar universal
I've been on Questran (cholestramine) for about 25 years now. The benifits are that it forms up the stools. Actually the Questran was made to lower collestrerol but we take it for "other" side effects. I was told it kinds of soaks up the bile acids. I know for me if I didn't have it I wouldn't be able to go anywhere. I would need to take a portable commode. with me. Hope this helps.
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