Crohns and Colitis Exchange
This is a place for members with Crohn's Disease or Ulcerative Colitis to get ... more
See All
Preferences
My Communities
My Discussions
My Email Digests

I, too, suffered with anal fistulae, so I understand the immensity of pain he must be feeling. He needs to see a different doctor. Its hard to get into a GI dr and if you call the office, he may have to wait for wks/months. I think the best option to be seen right away is to research GI docs and surgeons and see who you want. Surgeon is very very important. His GI is correct is saying that most general surgeons won't operate on someone with crohns. I ran into this myself with my first anal abcess/fistula. So once you've researched and chosen who you want, got to that hospital's emergency room and demand to either see the gi/surgeon while in the er, or an emergency consult set up within the wk. GI offices and surgeons do have times reserved for emergency cases. What area of the country do you live in?
As for medications, there are more options out there than remicade. That said, with the severity of your husband's disease and the fact that he has fistulizing crohns, which is more aggressive and harder totreat, the fact is that he will never achieve remission if he does not go on one of these serious meds. The possible side effects are serious, but rare. And he faces the certainty now of being sick and disabled the rest of his life or getting on the med and the very small possibility of one of the side effects. I hate to scare you. But fistulae do not heal on their own. He already has an established tract and I'm sure he DOES have stool moving through it. His body will continue to make more of these. I ened up with three at one time. He needs medical intervention.
Please keep us posted. I'll be praying for you!View Thread

I was on clomid for 4months when we conceived. Clomid is a very common medicine used for infertility. Did you have testing done to see if you did have problems with ovulation? We had not had a pregnancy in 10yrs of unprotected sex. My husband had sperm tested and I had some bloodwork to test hormone levels before we started the med. It was determined that I had problems ovulating. Has your doctor told you that clomid increases your chance of multiples? Especially if you don't have a problem ovulating. We had a single pregnancy, but someone I know who doesn't have altered ovulation took the med and had triplets!
I don't know if crohns is definitively linked to infertility or even if it was a factor for us. I think the biggest factor could be malnutrition sometimes resulting in the loss of my period for months. For people that have had certain abdominal surguries, like rectal surgury, that can make getting pregnant more difficult bc it alters the way the uterus lies. In that case, clomid wouldn't help.
If people are on clomid for 3-5 months without a pregnancy, it is common for your dr. to order a test called a hysterosalpingogram. This test puts xray dye into your uterus and fallopian tubes and checks for a physical abnormality that would hinder pregnancy, and makes sure the tubes are patent. If you have the test, stay on clomid at least another month or two, bc it's thought to "clean out the tubes" to make it easier to get pregnant

I sure hope you are successful and you are soon blessed with a healthy and wonderful pregnancy & baby! keep us postedView Thread

Poodles had a great idea to see about a consult with a high risk ob. Though you may not be high risk due to crohns alone, the dr could give more insight on the meds at least as a second opinion.
Best of luck!View Thread

When I was pregnant, I was on Humira. My GI was like yours and said that it was safe to be on the med and more dangerous to have a flare. Against medical advice, I went off Humira during pregnancy. I felt that the med was too untested and the potential side-effects too great for me to risk it. Likewise, I did not take it during the few weeks I was able to breast feed. I did feel well during my pregnancy and was able to eat a very healthy diet and was able to gain the appropriate amount of weight (which I was worried about). My baby girl was and continues to be healthy!
After she was born, I did have a recurrence of abcess/fistula and had a colostomy when she was 3mos old. I haven't been able to achieve remission after pregnancy. A theory is that I lost responsiveness to the med because I went off it while pregnant. Now, I've tried Cimzia, but as it works similarly to Humira, it is not effective either. I'm stuck in a little conundrum of what to do med-wise as there aren't a lot of options.
Jamie, you are facing a big decision. The best you can do is get all the information you can from your doctors (#1) and health-care professionals, and hear others' experiences. Ultimately you have to make your own informed decision, for you will have to potentially live with consequences either way. I would never change what I did, though I do have some very serious consequences. But then I have a friend that stayed on her Humira until the last 2mos, had a healthy baby and had just a slight flare after pregnancy. Every reason, choice and result will be as unique as we are.
I wish you the best in your pregnancy and you are going to be a great mom! Enjoy this very special time in your life!
LauraView Thread


View Thread
There aren't many people on this and I guess I just wanted to reach out and see how it's working for you. My GI was hesitant to put me on this without getting a second opinion, and he had me see Dr. Loftus at Mayo Clinic in Rochester, MN. Dr. Loftus agreed this was the best option especially as I'm not eligible for clinical trials of new meds due to the ostomy. I decided not to get on it if I test positive for JC, so he said the next step is to appeal to insurance to accept a med that's currently in trials for crohns. Or to get on anti-rejection meds they give to people who have organ transplants.
You were so sick for so long, and you just needed to get well to save your life. You had no other choice at the time. You don't have an ostomy anymore? Have you ever gotten any information about clinical trials? Your risk factors are really concerning and you know better than anyone that you don't want to be on it too long, especially when you already have other risk factors for PML. Dr. Loftus mentioned Stellara (currently FDA approved for psoriasis) was in late-stage clinical trials for approval. I know you can't take the chance of getting a placebo, but I wonder if there's a way to make sure you're getting the med if you're in a study....or do the insurance appeal...View Thread



You had asked for experiences on flare/remission w/ IBD...I am 31 and have been diagnosed with severe crohns for almost 10yrs. Though it's severe (my GI calls it malignant - just meaning that it's typically unresponsive to treatment) there was a period of time that I was not on medication due to lack of insurance, and I was mostly symptom free for almost 2 years. Every case is completely unique and I would definately not rule out IBD just because you had 6 years without major symptoms.
I guess my advice is to keep gathering as much info as possible and to also utilize your doctor as the most valuable resource you have available to you. Testing is not difficult and it is worthwhile.
Hope you feel better soon!View Thread
See Related Digestive Disorders Communities
Women's Health Newsletter
Find out what women really need.
Other Member Communities
- Dieting Club: 10 - 25 Lbs Member Community Share Your Tips and Support!
- Caregiving Member Community The Support and Understanding You Need!
- Parenting Friends Talking Member Community Get Support from Members Like You!
-
More Related Communities
The opinions expressed in WebMD User-generated content areas like communities, reviews, ratings, or blogs are solely those of the User, who may or may not have medical or scientific training. These opinions do not represent the opinions of WebMD. User-generated content areas are not reviewed by a WebMD physician or any member of the WebMD editorial staff for accuracy, balance, objectivity, or any other reason except for compliance with our Terms and Conditions. Some of these opinions may contain information about treatments or uses of drug products that have not been approved by the U.S. Food and Drug Administration. WebMD does not endorse any specific product, service, or treatment.
Do not consider WebMD User-generated content as medical advice. Never delay or disregard seeking professional medical advice from your doctor or other qualified healthcare provider because of something you have read on WebMD. You should always speak with your doctor before you start, stop, or change any prescribed part of your care plan or treatment. WebMD understands that reading individual, real-life experiences can be a helpful resource, but it is never a substitute for professional medical advice, diagnosis, or treatment from a qualified health care provider. If you think you may have a medical emergency, call your doctor or dial 911 immediately.
Health Solutions From Our Sponsors
©2005-2013 WebMD, LLC. All rights reserved.
WebMD does not provide medical advice, diagnosis or treatment. See additional information.



