First time forum, long time sick

[BeckyW825]

Hello there!

This is my first time trying a forum, ever. I have had issues for as long as I can remember, but was finally diagnosed with Crohns 8 years ago. I have been through Pentasa, Asacol, numerous rounds of Entocort and Prednisone. I am currently on Remicade every 6 weeks, Entocort, and heading towards Imuran. Right now I am having a particular tough time with a flare. My worst time was when I was pregnant with my youngest. I didn't think that one was ever going to end.

I have 2 children, ages 5 1/2 and 19 months. It is really tough because I work full time and am frequently so fatigued that I just want to sleep. I also get severe joint pains and arthritis associated with my Crohns flares so "mommy time" is somewhat difficult.

I am always looking for new ideas or learning about what others have been through or treatments that have worked for them.

Thanks!

 

[Grant]

Hi Becky, you sound very brave to me & combining bringing up children with severe Crohns must be awful. All I can say is I hope you get better really soon.
Hopefully Imuran will be the one for you & you can put this behind you.
Best Wishes
Grant

 

[Angrybird]

Hello and welcome to the forum

I am sorry to hear you are not doing do well at the moment, have you been put on the pred again to get things under control before the Imuran is started? What tests (if any) have been done recently to check on what is happening inside? What symptoms have you been getting? Also have you had any of your vitamin levels checked - especially your B12 and vitamin D? Have you tried any type of changes in diet and if so notice any improvement?

We do have a treatment forum that is worth looking at to get info on the Imuran but also so you can talk to others on the same meds you are currently taking if you wish: http://www.crohnsforum.com/forumdisplay.php?f=16.

Will be keeping fingers crossed you can be feeling better soon.

AB
xx

 

[David]

Hi Becky Welcome to the community though I'm sorry to hear you're having a tough time right now

How long have you been on the Remicade? Are the going to combine Imuran with it or stop the Remicade? Did the arthritis start before or after the Remicade treatments?

Sorry for all the questions! Angrybird has a good suggestion about the vitamins as well, people with Crohn's are so commonly deficient in those and proper supplementation can make a huge difference if you are.

 

[Gianni]

Hey Becky! First off welcome to the forums. I think you will find these forums extremely helpful as everyone brings different knowledge to the table. I also would highly recommend getting a vitamin panel done and then supplementing accordingly.

All the best

Gianni

 

[BeckyW825]

Wow, thanks for all the support! I'll try to answer all the questions . I think we are planning another scope and maybe MR enterography. I really hate prednisone so we tend to stick with antibiotics and entocort for flares. I took 2 weeks of flagyl and cipro with no effect besides a horrible case of oral thrush that took another 2 weeks of diflucan to clear up. I've been on remicade for 4.5 years now and even stayed on it thru my pregnancy. I think the plan is to add the imuran to remicade. I'm a little worried about the lymphoma effects tho.. The arthritis usually only accompanies flares with terrible pains in my hips, knees, and hands. Plus I get lovely night sweats and even a case of hydradenitis.

I've had my B12 checked and it's been normal. I live in NH where sunlight isn't always plentiful, so checking vitamin D isn't always common practice. Does anyone have diet suggestions? I already eat very healthy as my husband and I are health conscious and try to teach our kids to eat well. Special diets can be pricey and I want to try to only prepare one meal to suffice the family.

 

[David]

I think it's understandable to be concerned about the potential for lymphoma, but that is very rare, especially in females. I'd still be concerned though just because that's how my mind works so I totally understand how you feel.

Do you by chance know what your specific B12 level was last time you were tested?

There's a ton of diet suggestions in our Diet Forum. My personal favorites are the paleo diet and specific carbohydrate diet. But the key is finding what works best for you.