Just Diagnosed

[lilchameleon]

I'm a 26 year old female. I was just diagnosed with Crohns pretty suddenly. I was on vacation in Denver 2 weeks ago when I developed SEVERE abdominal pain. I toughed it out for a day thinking maybe I had a bug, but then it became unbearable and my boyfriend took me to the ER. A CT scan revealed I had lots of inflammation in the ileum area. Since I was a long way from home (St. Louis), they decided to keep me in the hospital for a few days. They started me on prednisone, and initially morphine for the pain. After a couple days I was able to travel back to STL for further treatment. I found an amazing doctor here that took me almost immediately for an appointment. I had a colonoscopy done today, which my new GI Dr. was able to confirm with about 90% certainty that I have Crohns. I've been on a mostly liquids low fiber diet for the last 2 weeks. I started at 180lbs a little over 2 weeks ago when this happened and I'm now down to 162lbs as of today. (which as a self conscious woman, I'm not entirely sad about losing all that extra weight!, but it's still a lot for such a small amount of time!). I got the okay to start adding some meats and well cooked veggies into my diet today, so I'm pretty excited about that! (still hoping to not gain back all the weight I lost though I think of it as the only positive of all this, haha). Anyways, I'm tapering off prednisone for a few more weeks and then my doctor is suggesting trying either Humira or Remicade after that is done. He told me to research those two meds a little and we would discuss the two options at my appointment next week. So if anyone has some insight on those two meds that would be awesome!

My concerns about the medications are that firstly, I saw that they can increase your risk for lymphoma. My dad died very quickly from squamous cell carcinoma when he was just 38, so I'm kind of leery of anything that give me a greater risk of cancer- given my family history!

Also, my other concern is that whatever medication I decide on- I am planning on trying to conceive within the next 3-4 years, so I want to pick something that doesn't have adverse side effects on fertility or pregnancy.

I know these are things I will/can discuss with my doctor next week, but I'd love to hear from you guys too! My doctor told me to look for forums to kind of learn more about the condition, since it's all new to me.

 

[seebee]

Welcome to the forum. There is a wealth of information to be had on here. It sounds like you found yourself a good doctor. My doctor insists that I visit my dermatologist once a year for body checks due to increased skin cancer risks. I don't have any experience with Remicade or Humira as I'm on 6mp but I'm sure someone else who does will be along shortly.

 

[teeny5]

Welcome to the forum. Glad to hear you have found what seems to be a great doctor! I know how you feel about the weight. I lost a ton of weight and needed to put it back on, but gained too much back and now need to drop a few pounds

 

[dave13]

Welcome to the forum

It is great you have a GI you can talk to and discuss treatment options. Keep the line of communication open and ask questions.Something I do to this day is write down questions I have for the next time I see my GI or colorectal surgeon.I bring my notebook to my appointments,my doctors encourage it.


http://www.crohnsforum.com/wiki/Humira. Here is a source for information you may find helpful. Remicade is in wiki as well.Have you heard of 'top down' or 'bottom up' approach? Some doctors want to hit this disease with a heavy hammer from the beginning,top down.Others want to start with the mildest approach,bottom up.Remicade is considered a heavy hammer,I have Remicade infusions.Ask your GI what he/she thinks and why.Ask what would happen,in there opinion, if you didn't take these drugs.Ask about options.

The Remicade and Humira support groups are a great place to ask questions.

Here is a link to those who wish to conceive support group. http://www.crohnsforum.com/showthread.php?t=14859

 

[David]

Welcome to the community. I'm sorry to hear of your recent struggles

In addition to what others said, I'd be sure to check out the Humira and Remicade subforums under our Treatment forum.

I wish you well!

 

[Madhu]

Welcome to the forum. My husband is on Remicade (started just last week) and he already feels better. Risk of cancer is extremely low with Remicade/Humira but I understand your concern, given your family history. Make sure you discuss with your GI openly about the risks and do not google too much and get scared on your own (this is what i did ). Our GI said risk for blood cancer is usually 1 out of 100, and with Remicade it increases to 3 out of 100. We also got a second opinion and was told that more than the negatives, Remicade has hell a lot of positives. And I agree with that. Good luck to you

 

[lilchameleon]

Thanks for the advice! I'll check out the remicade/humira forums!

 

[lilchameleon]

I am also curious about possibly not relying on medication? I know Crohn's can be very serious, but since I have had little no symptoms of it until these past few weeks, I'm wondering if perhaps just treating my flare with the prednisone and then seeing if I stay in remission is in option? I know this is something I can ask my doctor as well. I just wasn't sure if anyone else had ever tried that route?

 

[AnnieYa]

I am also curious about possibly not relying on medication? I know Crohn's can be very serious, but since I have had little no symptoms of it until these past few weeks, I'm wondering if perhaps just treating my flare with the prednisone and then seeing if I stay in remission is in option? I know this is something I can ask my doctor as well. I just wasn't sure if anyone else had ever tried that route?

Haven't tried it, but when I returned to my consultant after symptoms began returning at the 25mg mark, he indicated that it was a potential route for some people to get into remission with the course of steroids and not need a maintenance drug. However, I'm not sure how common this is and the steroids can still have an impact for an indeterminate amount of time after you finish them (I was told my cheeks had gotten puffier two weeks after finishing).

 

[dave13]

I am also curious about possibly not relying on medication? I know Crohn's can be very serious, but since I have had little no symptoms of it until these past few weeks, I'm wondering if perhaps just treating my flare with the prednisone and then seeing if I stay in remission is in option? I know this is something I can ask my doctor as well. I just wasn't sure if anyone else had ever tried that route?

A big concern when not treating this disease is the damage that can happen over time.Let us know what your GI says.