Newly diagnosed - unsure of options.

[pnwgirl]

I was recently diagnosed with Crohn's disease in the last week following a hospitalization and colonoscopy.

I met with a PA-C under the care of a GI doctor and they are recommending a clinical trial of humira, imuran, and methotrexate. I am hesitant, considering it seems like aggressive treatment though I have been told I have a severe form of the disease. It would be a combination of weekly infusions and injections for 34 weeks.

I am particularly scared about how side effects will affect my ability to work. I was a seemingly healthy, 26 year old planning my wedding and looking forward to starting a family. Methotrexate feels very intimidating. I have a phobia of throwing up and am starting on an anti-anxiety and anti-depressant to help and cope.

I really am just looking for some reassurance that it will all be ok. I am hoping the nausea will be manageable. I'm just not sure where to look or what to think right now.

 

[ronroush7]

Welcome. When the doctor gets the right mixture of medicines you will be fine. Keep us updated

 

[Justanothercp]

Welcome.
Starting on therapies is very daunting. It is a serious condition and they are serious Meds, so it should be taken with consideration. In my journey, I found we had to try different combinations of Meds until we found something I tolerated and something that worked.
The Meds are scary, but after losing a large segment of bowel to surgery, my MD told me we need to do everything we can to slow the process of bowel disease so I don't continue to lose more. I bought into that theory. So I take lots of Meds, for decades now and follow a pretty strict diet (paleo) and so far I have been able to work/play and live life.
Good luck and keep us posted.

 

[DougUte]

pnwgirl,

Welcome to the Forum. :welcome:

I agree with Justanothercp. Crohns is a very serious disease. I also had a very severe case at diagnosis and ended up having 3 feet of small intestine and 6 inches of my colon surgically removed. I have been on Humira for 5 years 4 months.

The meds for this disease are very serious as well. There is an approach that some doctors take to this disease called the Top Down approach. The theory is that you start off with the most potent meds, especially for severe cases. You want to preserve as much of your bowel as possible. The small intestine is responsible for absorbing nutrients from your food. Without a small intestine, you can't live. Sounds to me like your doc may be trying to avoid surgery.

 

[Clash]

My son was started on remicade(a biologic similar to humira) right after dx. The doc added methotrexate shortly after.

My son started with oral methotrexate but moved to methotrexate injections soon after.

He has no side effects from the methotrexate. He takes 1 mg of folic acid daily since methotrexate can deplete folic.

He's been on methotrexate for around 6 years now.

He's had to switch up other meds in an effort to reach remission but has remained in the methotrexate to help with his joint condition and help prevent biologic antibodies with each biologic he's been on.

 

[caretothepeople]

It's sounds like you've been through a lot recently. I'm sorry for that, but it does sound like you're being proactive about getting everything under control which is great. As has been mentioned, medications are often suggested first and it can take time to get things right.

Others have already shared some great tips but as you continue you explore treatment options here's some questions it might be helpful to go over with your doc:

Why do you think this medication will work for my Crohn’s disease? What are the risks of trying it?
What side effects might I experience from taking a it?
Approximately how long should it take to feel better, or to find out that this may not be the right medication for me?
What happens if I miss taking a dose or if I stop taking my medication?
What are my options if I cannot afford medication? Are there any over-the-counter medication options?
Are there other drug options in the pipeline that might work for me?
Should I change my diet or take nutritional supplements? If so, can you recommend a dietician to discuss this with, or any other nutritional supplements?
Do I need to make any other lifestyle changes?
What should I do if the symptoms return? What symptoms are considered an emergency?
When should I come back for a follow-up appointment?