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
Hi Jaime, congratulations on starting a new chapter in your life
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
Jaime, sorry about the confusion! I wish you all the best and hope you are blessed with both reproductive and GI health! I also was on a med - clomid - to assist ovulation and conceived after four months. I found out later that you have an increased risk for multiples: a family I know just had healthy triplets. Could you imagine?
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.
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
That's too bad Hannah. I got my results back and I also tested positive for the JC virus. I won't be getting on Tysabri, but working the insurance appeal for Stelara. On prednisone for the interim...if I am able to get on Stelara and it's working well for me, I'll let you know...View Thread
Hi Hannah, thanks for replying. I thought you'd said you were on Tysabri. I'm glad you're finally feeling better. I've been on Remicade in the past and it was very effective for me, but after being on it almost a year, I had an anaphalactic reaction. Bummer. It really worked for me, so I'm hopeful that Tysabri will as well, both being infusions vs injections. And that you're feeling better makes me hopeful too.
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
Hi everyone, I lost response to Humira and Cimzia wasn't effective for me, so Tysabri was recommended. I know that it can be risky due to PML but I had the blood test to see if I'm at increased risk and now waiting about 2wks to get the results. I guess not many people are on it, but I thought that I'd seen someone mention on here that she was on Tysabri. Any information or advice that anyone can offer in relation to this medicine are greatly appreciated, and I'd love to know how it works for you! Thanks all, and hope you are doing well.View Thread
Hi Nicole, I'm sorry your mom isn't feeling well. It's so hard to see our loved ones so sick. I think lbcash gave you some good advice. Your mom needs someone dedicated to her care here. GIs can be difficult to get into. If an ER visit is warrented, that can be a good vehicle to get an appointment sooner. I don't think it's overstating to say that she is in a fight for her life. Time to be assertive and she may need you to be the fighter here if she is too fatigued. She is too young to feel like this and she can't let this go on any any longer. I'm glad to hear that she said she's having some better days...I suspect she wants you to not worry. Very sick people have a way of putting on a good face, saying things are better...better is code for I'm not good, but don't I either don't want to talk about it, or I don't want you to worry. Sorry to be so serious with you, I just care about you and your mom and I encourage you to take an assertive stance for her sake. I hope she feels better soon, please let us know!View Thread
Hello, sorry you've not been feeling well. I also agree w/ sheba and arbob that you should see a good doctor/specialist and have some testing done. I can somewhat understand the hesitation to seek medical advice and trust/be compliant to what the medical professionals want you to do. Though you were young when first sick, I gather you may still be more comfortable trying to figure things out on your own. It is good to get all the information you can, but it will only get you so far. You can not diagnose yourself without this testing, and also you can not prescribe medication if you need it.
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.