Needing support and advice

[kristihelene]

Ive been dx'd with Crohn's for 8 years, have had two bowel resections and a few adhesion lyses, and current med regimen is remicade, methotrexate, and zofran. Over past two weeks my pain has become unbearable. It's lower abdomen, and ranges from a 5-10, but never goes away. Somewhat diffuse, and does not feel like my past obstructions. I don't want to go to ER so close to Christmas since its most likely just a flare, but I can't take this pain!! Saw PCP last Wed. She mentioned she may write for Prednisone if pain didn't get better after Remicade last Thur, and it's worse! I see her tomorrow so hoping she follow through! I need something to get me through hosting two large family Christmas parties this Wed and Friday (30 people!!). (CRP was elevated at testing last week, but not super high). But I am laying here crying because it hurts so bad tonight!! I hate Crohns!!!!!!

 

[DJW]

This can be a particularly difficult time to be flairing. I've never had much success in this area but many people have had success with warm baths and hot water bottles. If it gets unbearable get to the ER.
Hope you start feeling better soon.

 

[kristihelene]

This can be a particularly difficult time to be flairing. I've never had much success in this area but many people have had success with warm baths and hot water bottles. If it gets unbearable get to the ER.
Hope you start feeling better soon.

Did the hot bath tonight, and have been living with my moist heat attached to my belly! My fear with ER is doc's will all be on-call only for holidays and it'll take forever for GI to get consulted and I'll end up there over Christmas!

 

[DJW]

I hear you. This disease sucks enough all on its own.
Hopefully someone will be along with more ideas.

 

[kristihelene]

Update!!! I got a CT today and it showed I have "epiploic appendagitis". Its apparently very rare, and my PCP has never treated anyone with this so we are waiting for my GI to weigh in, but according to her research and Google, this is a condition that causes inflammation of the pouches outside of the colon and rectum, causing intestinal torsion (twisting) and interruptions in blood flow to intestines (sounds painful, right?). SOOO totally explains my pain, and every nuance the condition describes fits my symptoms perfectly. It is a radiographic diagnosis, so I am sure this is correct. I am happy to know it is not my crohn's flaring or new inflammation!!! I don't need any more strictures. But I am frustrated that crohn's, once again, lends itself to other autoimmune conditions that are rare, hard to treat, and incredibly painful! I am now on steroids and round the clock pain meds, and GI will decide if it needs to be surgically repaired or not. From my research on google, it seems likes its 50/50 if surgery is used... Either way, I know I have a plan to get me through Christmas and for that, I feel BLESSED!!! Thank you all for lending an ear!

 

[UnXmas]

I hope your Christmas is going well, kristihelene. There are definitely positives in having something diagnosed so promptly! Especially when it's something rare, it's good that there are doctors who will run tests to find what's wrong and not just assume it's all just part of Crohn's just because you already have that diagnosis. I hope you get the pain under control very soon.

But don't feel bad if you need to delegate some of the catering to helpful family members.