Crohn's Medications

[gah_70]

Just curious to know what medications other Crohn's patients take.  I was diagnosed nearly two years ago, but lucky for me, my pain is minor, compared to many others.  I also have Ovarian Cancer, and the Crohn's was discovered by chance in a CT Scan after I had surgery for the cancer.  I subsequently had a colonoscopy, and the terminal ilium was so narrowed, the doctor could not maneuver the scope in the area to get a biopsy.  I had another CT scan last week, and compared to previous scans, the Crohn's is getting worse.  I am concerned the progression will eventually start causing the pain to get bad.  My doctor has me on 1 gram of Pentasa 4 times a day, and Welchol for the diarrhea.  I was on Entocort for a short time, but it really didn't help anything, and wasn't worth the expense.  Are there any preventative measures about which I may be unaware?  I have an appointment with my GI on 12/20.  I'm curious what questions I might ask him about this.

Thanks for your help.  

[gah_70]

Thank you for your detailed answer.  You have given me some good information to take to my doctor.  I am going to ask my GI for a colonoscopy.  He wants to do them every three years, but due to my cancer diagnosis, I am afraid to wait that long.  I had 12 inches of colon ressected during my debulking surgery.  I am currently going through my first recurrence, and cancer was again found on both my large and small intestines.  Thankfully, it was caught early this time, but I have been in chemo since May.  A lot of times, I can't tell if my tummy troubles are from Crohn's, or from chemo.        

My Oncologist (not my GI) is itching to try Remicade on me.  But like you said, the side effects scare me.  I feel like my immune system is already compromised with the chemo...I don't need anything else in there that might do more harm than good.  I think my ultimate goal is to not have to have any more intestine ressected, though, so I guess I'll do what I have to do.  

Thanks again for your comments.  Best wishes to you!

Gail

[lizziecee]

Hi there - sorry you have had to join us, but welcome.

I was dx via surgical laparotomy with Crohn's in 1970 - endoscopy and colonoscopy were not available then.  My Crohn's initially was around the terminal ileum and confined to the small intestine. It has spread to the whole GI tract now and is termed PanCrohn's Colitis. Initially, there were some 15 different areas involved (ulcers and crypt abscesses) that the surgeon felt were too many to resect. I was put on 60 mg daily of prednisone as that was really the only viable medication at that time to bring the inflammation under control. Over the years I have had many different anti-inflammatory meds and unfortunately, 30 yrs of steroids, which has depleted my bone mass to the extent I now have ostoepenia. I take a bisphosphonate, alendronic acid, weekly for this, plus Calcichew/Vit.D twice daily. I also take a daily folic acid tablet, which is absolutely necessary when taking mtx, as it affects the bone marrow, particularly the red cells, which in my case became macrobiotic until I started folic acid. Additionally, I take one tablet of codeine phosphate, which calms the bowel spasms. I am on a daily Arimidex tablet (an aromatose inhibitor) as my breast cancer was hormone positive.

The big difference to my well-being has been the immuno-suppressant drug, methotrexate, which I self inject weekly, 12.5mg.  I have been taking this for some 7 yrs now, with a break 4 yrs ago when I was having FEC chemo treatment for breast cancer.  There are some newer anti-TNF (tumour necrosis factorA) biologic drugs available, such as Infliximab (remicade), Adalimumab (humira), Certolizumab pegol (Cimzia) and Natalizumab (Tysabril). My gastro has been involved in some trials of these drugs in England, but as I am doing well on methotrexate he is reluctant to prescribe these. They can have serious side effects.

I recently had an upper endocopy and a stricture was found. 4 weeks ago I had my first MRI, with gadolinium injection half way through the procedure, but the results are not through yet. My gastro advised I am looking at a resection of that part of the small intestine, if he and the gastro surgeon deem it necessary. I feel I am lucky in that I have had no resections, since the more intestine is resected, the worse the diarrhea becomes. I take imodium occasionally in the mornings if the diarrhea persists for more than an hour. I feel I now have as much control over this incurable disease as I am ever going to get and am comfortable with my treatment. I did try Entocort some 10 yrs ago when it was on trial in the UK, but it did not help, so I discontinued it and went back onto prednisone.

Each case of Crohn's is specific to the patient and treatments do vary. I have seen quite a number of hospital dieticians over the years, all of whom say that Crohn's is not diet related. Their only advice has been to have a high protein, low fat and low fibre diet. I steer clear of very fibrous vegetables like cauliflower, broccoli, sweetcorn, etc. which are difficult to digest. I never eat junk food which is often too fatty.

Your GI is the best person to give you advice. I would ask him how many IBD patients he has and how are they currently being treated.  Oh, just thought of it - if your terminal ileum is scarred through inflammation, you may not be able to absorb the vitamin B12. It is only absorbed in the terminal ileum. You should have a B12 blood test, and if your levels are depleted, get a regular B12 injection. I have them monthly.

I don't know if it is available in the US, where I assume you are, but you may ask your gastro if he can do a calprotectin stool assay test. This was developed in Nottingham, England, and I have them every 2-3 yrs. If the calprotectin level is higher than normal, 20, (mine is often 80), this means there is inflammation somewhere in the GI tract, and the gastro can then move on to invasive testing, such as the scopes, and alter the meds. If my calprotectin level is high, I usually have a short course of the antibiotic Cipro, a 5 day on, 5 day off regime.

I don't know if this is the kind of information you want, but if you have any queries, please do get back to me and I will help if I can.

Good luck,
Liz.