New Member

Hello, My name is LeeAnne and I am a 28 year old diagnosed about a year now with Chron's. I have the type that gives me small pimple like lesions on my elbows and knees that are now spreading along my legs in various spots. I happened to stumble upon this site by pure chance when I was looking up something about my BMs. Lol. I am currently on Pentasa, Methotrexate, and now I just finished my first 6 weeks treatment of Remicade. Nothing I have tried has helped me with the severe symptoms that I have with my disease. I couldn't take the steroids because of nasty reactions to them and the Methotrexate did not work other than making me lose my hair. I am told that I should be at least 50% or more better on the Remicade by now, but I still feel the same other than having a little more energy than I did before I started the treatments at the end of January. It has been really tough and I am trying to stay strong because I have two young children, but it is so hard. I feel like crying a lot (especially on the bad days) because it seems like nothing is working. I feel trapped in my own home because I am afraid to go anywhere and have an accident. Today has been especially bad with two accidents in one day (normally I go several weeks with only one), and it makes me very depressed when this happens. I don't know if there is anyone out there that is struggling to find the right meds for them, but what happens if these meds don't work? I just want to get back to living a somewhat normal life and be able to travel again (I'm afraid to go to the store for groceries!). I have been very lucky that my husband is so supportive and understanding (as much as he can be), but the more I feel trapped at home, the more depressed I get. To be told that you will get better by such and such a time, and then not feel that way, is really hard. I get hopeful, then feel like my hope is crushed when the meds don't work. I know all of us are struggling with this disease. I have had to teach myself a lot through this process. Is there any advice anyone can give me about this. No one in my family has this and I feel so alone sometimes. Thank you all.

Hello LeeAnne,
I would like to 'second' Vicky's welcome.
Personally I think it is wrong for anyone to suggest that you will get better by such and such a time. Everyone is different and has their own 'time line' for meds to work.
Haven't any experience of Remicade but I am sure that those who have will be able to share their experiences with you.
I know it must seem like a never ending battle right now and it cannot be much fun being 'trapped' at home I am sure that many sufferers will totally empathise with you.
Stay strong :)

LeeAnne- hi, im 28 this year also...you commented on my post, and I saw yours...as you know I'm still seeking information, don't know what the cause of my issues is yet. But I wanted to let you know I hear you and the depth of your sorrow in your situation. I am so so sorry for the hope delayed. A verse in the Bible says "hope deferred makes the heart sick". I also wanted to convey my sympathy as you go through this with 2 small kiddos...and commend you for striving to keep a good attitude for them. May you find true rest tonight and experience fresh strength tomorrow. Take care
-Megan

{{{{MRSvegetable}}}}}, I am glad to hear that you have a little more energy since you started Remicade, but I'm sorry you're not seeing more improvement yet - perhaps the extent of your illness is more than your DR knew. I am often frustrated by trying to communicate how I feel so that my DR will really understand - it is hard! I agree with the others that any timeline anyone gives you is just a guess. On the other hand, you should feel free to complain as often as you want to your DR. S/he needs to understand your level of frustration.

I think in many ways treating Crohn's ends up being a lifestyle decision, not a life/death decision (although there are certainly people here who are dreadfully ill, malnourished, etc.). Maybe that makes GIs less interested in aggressive therapies because they are afraid of potentially awful side effects. My rheumatologist has been pushing me to ask for more aggressive treatment because for a while there I was miserable with joint pain and fatigue and my sadness at having to stop running for exercise. My GI is a conservative physician and does not want me to take biologics - instead he has revised my med schedule so I am certain to get my full dose and that has, in fact, worked. Plus a major life stress of mine is over and that always helps in an autoimmune illness.

So here's my advice - talk to your GI today about how sad you are, disappointed in the results so far of your remicade treatment. Perhaps he needs to increase the dose or frequency. Tell him clearly what you posted here on this forum. Don't be shy!

Learn about dietary changes to see if there's some help there for you.

Talk to your husband about getting relief from whatever stresses you are having at home. Would having a housekeeper be a good idea? It's certainly cheaper than some of the meds we take! What else can you do to be less stressed?