What should I do??

Hi All,

I need some suggestions. I am in a BAD flare, going on ten months, and I have a few problems. I gained over 60 lbs in three months due to the prednisone, hard on my self esteem too. I am now just off the pred. I have been on remicade since April. It made a HUGE difference. I have horrible hip pain and my right foot swells so much I can't walk. I am currently in physical therapy for my back pain, that I never had before the pred. My hip pain gets so bad I can't walk. I also feel weak all the time and it is hard to hold my ten month old daughter (she is only 16lbs or so). I am also nauses(Spelled wrong) all the time. So I went to my dr, whom I adore, and she said this is all probably from the weight gain, not all my fault. She said if I don't feel better in 5 weeks she'll refer me to a rheumatologist. I feel like a whiner because I feel better, but I am still sleeping all the time. I can't bend over to put my shoes on, 'cus I'm fat, aznd even if I could my feet are so swollen my shoes don't fit. Any suggestions? I am most concerned about being so weak and not being able to do daily activites, load dishwasher, do laundry, carry my baby girl, etc. Then I think it also may be my depression. Luckily I am on summer break, I'm a teacher. I have started exercising, but it's hard on my joints. I can't swim because it is too hard to get in and out of my swim suit. Sorry this is so lng, but when do I know to listen to me or if it is whining? I always think, I'm not that sick, but I feel like life is passing me by and this flare is never ending? Help. Thanks for letting me vent. It was a rough day. We are drowning in medical bills and I'm not even better.

Thanks,

Kgirlie

Hang in there K! I have always been tiny until the evil prednisone and I gained weight too

sorry i meant your pain is legitimate not illegitimate. Percoset is making it hard to type tonight

Hi kgirlie,

Just a note to say how sorry I am that you have to deal with this. Ides has given you some good advice on going to see a rheumatologist asap, but I wanted to add a few practical things you might like to consider:
* it is possible to buy shoes with velcro fastenings. Some of these are adjustable and can be easier to for those with swollen feet to wear
* does your region have a home help service for people facing disability or serious medical conditions? If you haven't been plugged into such a service, it might be a good idea to ask your doctor if such a service is available to you
* if you can get a referral to an occupational therapist, s/he might be able to recommend some aids to help you with your household chores. If no referral is available, try ringing or dropping into a shop that sells medical equipment for elderly / disabled people. You'll be amazed at what's available to help you put on shoes, do housework etc.

I hope these tips help. Best wishes to you,

I.

The Remicade helped my arthritis associated with CD at first. While it continued to help maintain my gut remission, I started having arthritis flares while on Remicade. That was one of the reasons they took me off and put me on Humira. Then I had a reaction to that and had to stop it. then my enthesitis went into overdrive and the arthritic flare went into overdrive.

Your therapist is a smart gal. She is correct that you should be checked for AVN with the type of hip pain you are having. AVN can be caused not only by steroid use but is one of the extraintestinal manifestations of Crohn's. I have AVN in both femurs.

We've all been there kgirlie, with the "is it just in my head ?" thing. It's not just you, it is that tough.
Ides' advice is pure gold. I would suggest you take it. The scenario she suggests is commonly underrecognised by doctors, since so many know little or nothing about extraintestinal symptoms of Crohns.