Diseases - IlCat.org

Catherine Said:

Has anyone here taken CIMZIA for CROHN'S DISEASE?

We Answered:

hi ml, I am a female crohn's pt. for 28 yrs.

If you go to the crohn's & colitis foundation's site, you can find the information you are looking for. They have a live chat & hotline run by healthcare experts as well as an open forum where you can post your questions tot others who have taken Cimzia.

This is the BEST site for updated information and education on Crohn's and Ulcerative colitis b/c it's run by people who have it or who have family members that have it.

I hope it works for you.

Diana Said:

Crohn’s disease skin rash?

We Answered:

hey there. i'm 14 and i have pretty severe crohn's disease. after my most recent stay in the hospital (is was put on prednisone again.. ugh) I developed a rash that looks like pimples on my neck, chest, and back. So I brought it up with my doctor and he told me that the most common kind of rash to have with Crohn's is a red splotchy rash located mostly on your legs. And I have also learned that doctor's are wrong a lot of the time, therefore I'd get a second opinion because Crohn's can effect areas not seen by a colonoscopy since it can effect anywhere from the esophagus to the anus. I hope I helped some!

Jim Said:

Questions about Crohn's disease?

We Answered:

hi krissy, I am a female crohn's pt. for 28 yrs. dxed at the age of 12. When I was tested for it many yrs. ago, I had the symptoms of fatigue, abdominal pain, the big C or D, some blood, and a low grade temp.

After my GI scoped me, he didn't find any inflammation in my gut but he still went with his instincts and dxed me as having Crohn's. The inflammation in my colon finally showed up a few yrs. later during another scope & then I was put on 80 mg. of steroids to get things in remission. Unfortunately, when I was 17, I needed to have surgery to save my life so I had a total colectomy done.

Wait until the GI examines you before you jump the gun. If it is Crohns, there are newer treatments to get the symptoms under control such as Remicade, humira, 6MP, Imuran, and Entocort.

The crohn's and colitis foundation has a website with info ranging from how it's dxed, symptoms, newer treatments, women's issues, surgery, to locating a local support group near you. They also have a live chat and hotline run by healthcare experts well versed in IBD. There is also an open forum where pts. and family members can post questions to others who have Crohns.

Take it one day at a time. I wish you the best.

Sonia Said:

Please be kind. This is a serious question. How do you treat Crohn's Disease-associated anal skin tags?

We Answered:

There are many ointments available that can help your daughter, actually. Each person will find that they have their own preference, and some of them are only available by prescription, and may be necessary depending on the severity of the itching, location of the skin tag, and whether or not she is experiencing bleeding due to tearing from when she has BM's. The prescription ones tend to be localized corticosteroids, which reduce inflammation, itching, and swelling--since her physician has probably seen the skin tag, she/he may actually be able to best recommend the type of ointment that will help her...there are many classes of ointments, from simple local anesthetics like lanacane to corticosteroids to vasoconstrictors to astringents. In the meantime, I would try using over the counter Lanacane or some sort of hemorrhoid relief topical relief.

In addition to topical ointments, there are practical considerations. Perianal itching, from tags and otherwise is increased by moisture. I know that wiping after a BM can be incredibly painful in her situation, but it is imperative that she finds a way to clean herself thoroughly, because if she does not, it can irritate her skin. Some patients invest in a bidet to help with this. Usually moist toilettes are preferable to toilet paper. Next, without wiping, she should pat until she is thoroughly dry, because any moisture fosters itching. The moisture from frequent BM's is increased in Crohn's patients and allows yeast and bacteria to build up, as well as just irritates the skin, She should find that being diligent about cleaning and drying is actually helpful.

Reducing the acidity of her diet can help reduce the acidity of her BM's such that if she is having incredible irritation, it is less painful to pass them and the skin becomes less irritated by each one. Tomatoes, carbonated beverages, tea or coffee, milk, cheese and hot peppers are often the offenders that increase the acidity.

Good luck.

Harold Said:

Crohn's Disease treatment in Boston?

We Answered:

If you were only diagnosed in May, I first have to caution that your Dr. may not have yet failed to come up with an effective treatment plan (but I don't have the full picture). Certain drugs like Asacol take several months to kick in, and the wait is frustrating. But, if you have never been placed on one of those drugs, that isn't your concern.

Anyhow, you are always entitled to get a second opinion about your treatment--in fact it is something I would encourage anybody who doesn't LOVE their dr. patient relationship to do. Your disease is chronic, so you will have a long relationship with your Crohn's physician, so you absolutely should be treated by someone you feel is competent.

I happen to work specifically in the field of Inflammatory Bowel Disease clinical research. I work specifically with patients who have refractory disease--that is disease that does not respond to conventional treatment. The good news is it would be hard to have blown through all of your options since May. The bad news is that there are patients for whom standard medications don't seem to work. So what do you do? You find out which of those categories you fall into...

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Just as you thought, you do this by getting a second opinion. Mass. General Hospital has an extremely well respected expert in Crohn's and Ulcerative colitis by the name of Dr. B Sands (I don't want to put his full name on a public forum) & Brigham and Women's is good for Crohn's although my contact there has relocated. If you call Mass General, you of course don't need to see Dr. Sands, b/c he's probably hard to see--ask the person who books his appts who else is extremely good. One of the biggest mistakes patients make when calling our office is that if they can't get an appt with the one guy they've heard of, they don't take an appt with anybody else, when really, they are turning down an appt with somebody who is equally as good but who just doesn't go on the lecture circuit as much--these people work with people they respect and who they train. If Mass General and Brigham Women's don't suit you, go to www.clinicaltrials.gov and do the advanced search for "Crohn's" and "Boston" and look for other institutions where large companies like Abbott, and Elan are doing clinical trials with drugs like Humira/adalimumab, Tysabri/Natalizumab, ABT874, Stem Cells, etc. Big trials only happen with experienced physicians who know what is going on. Whichever place you choose will definitely put you on a proper approach for your IBD and you may find out that you have refractory Crohn's, or you may find out you were misdiagnosed and have ulcerative colitis, or you may find out you respond easily to a drug you have yet to try!
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Now, if you are re-thinking the second opinion because you are waiting for some Asacol to kick in, I do want to say that if your previous doctor was just a regular gastroenterologist, you really should see someone who is more familiar with inflammatory bowel disease. They are less likely to manage you with steroids. Ask a potential Dr. how they view the use of corticosteroids in their treatment of Crohn's--you want to know that your Dr. ultimately always wants to plan to get you off of steroids, even if you sometimes need them when you flare and never puts you on them without an exit strategy. Regular GI's can panic and put a patient with severe Crohn's on steroids and leave them on when they are unresponsive to drugs with which they are familiar . . . this is where the other benefit of seeing a physician at a research institution comes in. If you truly do not respond to all treatments available, you have the option of investigational therapies from a doctor who you already know and trust, rather than being sent to a foreign hospital to see new staff and new people for new-fangled treatments.

Out of curiosity, what are these "very unusual" symptoms you are having? Perhaps they are not that unusual and your physician is simply not that familiar with your disease. It may be of comfort to you to learn that others have the same symptoms if you share...

Do feel free to ask further questions...
Good luck!