Crohn's Disease Support Group

I just found this website last night, and I'm so excited to find a REAL support group. I've looked before and came up with advertisements for medications, most of which I have already taken.

My name is Autumn, I'm 23 years old, and I'm from Missouri. I have two little boys, a husband, and a dog named Lilah. I am attending Missouri State University, studying Psychology. I work in a local shelter for abused children. I love reading, scrapbooking, and spending time with family and friends.

I was diagnosed with Crohn's when I was 15 years old. I remember going to a few different doctors a few times a week for a few months before finally getting a colonoscopy and being diagnosed. I was so embarrassed when my mom told the rest of the family. I didn't talk to her for over two weeks. She couldn't understand why I didn't want anyone to know. I always thought this disease was worse than others because it's humiliating. It's easier to talk about cancer than it is about your diarrhea. After adolescents I became more comfortable discussing it. Maybe I grew up, or maybe it got so bad it consumed my life.

Before the age of eighteen the disease came and went.

After I turned eighteen, the disease is now a constant thing.

I had a terrible pregnancy. I could absorb basically nothing from food and was kept on IV's to keep me and the baby alive. I got even more frequent blood transfusions for anemia. I weighed 115 lbs. when I was 37 weeks pregnant and gave birth to my son who was small for gestational age. Thankfully, we were both okay and got to leave the hospital just three days later.

My next pregnancy was complicated, but not because of the Crohn's. My disease actually improved during pregnancy, but my blood pressure was sky high and I had my son 10 weeks early. He weighed 2 and a half pounds, also small for gestational age.

After the birth of my second child, I was taking Asacol, Prednisone, Imuran, and Remicaid. Steriods help, but you can't take them forever. Once you stop taking them, the disease comes right back. The other drugs made me feel worse, and didn't improve my symptoms.

In October of 2009 I had my appendix removed, along with over a foot of my small intestine, and five inches of my large intestine. Things are better since then. I still have not had a "normal" bowel movement. I am still in the restroom for hours each day, but I'm glad I don't have severe abdominal pain.

In November of 2010, I started having mild pain and blood in stools. I was scoped and told my disease is already back in the same area they cut out before. The doctor wants me to go back on Imuran and Remicaid. I don't want to. If they didn't work last time, what's to say they will now. Remicaid made me wish for death.

I need to find something that works. My doctor keeps telling me to take these drugs like I'm not speaking to him. He told me to "respect the disease" and take my medicines.

Are there no other medicines? Has anything helped you at all? Is there any hope for me? I have also wondered if having Crohn's disease shorten's your life expectancy. I have a lot of questions for others with the disease, and have never met another person with Crohn's.

Any comments would be appreciated.

Post edited by: autumn3843, at: 04/27/2011 04:28 PM

Hi Autumn and welcome to the support group. Sounds like you have really been having some major issues. I'm sorry to hear that. But hopefully having found us you'll have alot of great people to listen and let you know what they have gone thru as well. I have battled crohns just over 20 years. I was diagnosed after my daughter was born. Very hard trying to work full time and raise an infant. How we manage I have no idea. Like you I have tried every medicine out there. Nothing worked, surgeries were my only options. In 08 I was severly ill and my GI started me on cimzia, similiar to humira. I have been in remission since June 10. So a major accomplishment for me.

Speak sincerely with your GI. If you can drag your husband or a family member with you. I take my husband along when I need reinforcement. Do you have a good PCP? Sometimes they can work better with you in getting communication open with your GI. I know its all a complicated mess getting your disease under control. Just hang in there and hopefully you will be feeling much better very soon. Hugs and welcome.

Hi Autumn, Welcome to this site where I have had more answers than from any of my Drs. The drugs are awful but they can control this horrible disease. I am about to go back on Methotrexate which is a bummer (excuse the pun!) but it will help me I know. I'm with the lovely Libit. Talk to your Dr about your concerns. You will find if you go through some of the discussions that many of us have changed Drs until we found one that we could trust and were happy with. That is what I hope you have. My Dr once told me that the disease was much worse than the drugs we have to take. I hope remission comes your way quickly.

Even after the surgery, I was still spending a large portion of my day in the bathroom. Do any of the over the counter medications help you? I would like a prescription med for diarrhea, but have never been offered one. I have seen a few posts about humira. I haven't taken that drug and will look into it. I have been on prednisone several times, and it's the only thing that works for me. The doctor's say I can't take it long term. I don't seem to have bad side effects like some others. I am allergic to flagyll and I HATE Remicaid. I feel like I have the worst flu of my life for 2 days after the IV treatment. I feel like my disease will never go into remission. I think I will spend ever day of the rest of my life like this. The good thing is that I'm used to it, and as long as there isn't too much pain I can deal with it.

I take an otm called imodium. I don't take it a lot but if I have been going constantly for a fews days or I am going out somewhere I will take them as necessary. I have had bowel obstructions from fecal overload so I am very careful about taking this stuff but sometimes you just gotta do what you gotta do. I can't take Flagyll, Pentasa, purinethol, salofalk, salzapyrine and I'm not sure what others. Very frustrating!

Nice to meet you Autumn. You have heard from some of our all stars, but I'll still give you the amateur opinion.

Crohn's did not hit me until the end of July last year. I'll be 60 next month, so it was a major surprise for me. I spent almost two months in the hospital and had a total of a combined two feet of small and large intestine removed. Like you, I don't feel much better. One thing I found out right away was that doctors know very little about Crohn's. That is not a slight toward them, it's just factual. I have problems with the ones who pretend to know. I actually had to insist on surgery. Until I did, they had not even diagnosed Crohn's.

Take the advice the others have given in terms of insisting your doctor listen and find a new one if they don't. The Imodium is also a good idea if used very sparingly.

I am very happy you were able to bring home two children in spite of this disease. Welcome and keep your answers and questions coming.