Ileum affected folks...

[horseluvnhonee]

Hi all,

First off...just wanted to thank all of you for your warm welcome and recommendations..means a lot to me. As everyone suggested, I did make an appt with a GI doc...it is set for March 5th.

I have been having a ton of belly pain since my colonoscopy...uggggh. I may be neurotic but I am quite convinced that if I do have Crohn's....I'm thinking it definitely is in my terminal ileum area. I'm a nurse so sometimes get ahead of myself on things but my tummy pain really does correlate with where the terminal ileum is located. The pain just seems to get more constant and more annoying each day. It's not bendng me over but I'd call it a very 'agonizing ache". It almost feels like there's a constant cramp there that just wont go away. Every once and awhile it will get sharp but it doesnt last long...it is enough to make me sweat for a minute though. Also I feel like the belly pain is going straight thru to my back in the same place...anyone get this? Also...occasionally..all of a sudden..my pain...will affect more of the left side too...definitely not very often....but feels like the same pain...just on the other side.

Have been doing horrible in the joint department too.....very painful joints...seems to be skipping around..even from minute to minute. One minute, it's in my big toe, next minute....its in my knee. I've also been having a lot of repeated night sweats ....like 5 different times during one night. Also running fevers between 99.4 and 101...not terribly high but enough to make me feel like I have the flu.

Constipation is a little better since Ive been taking the Miralax. About every other time I go....I have the thick pink tinged mucus....just doesn't look right at all!!! Also...ileum involvement would just make sense due to my B12 deficiency.

Ok...I don't really know what the point of this post was..maybe just to vent a little and see if any of you great folks with ileum involvement have anything similar to what I'm experiencing? Sounds like the capsule endoscopy is going to be a strong possibility...looks like the doc I am seeing specializes in that and IBD....I have a cousin with Crohns that went to this particular doc...and she loved her....so I am hopeful!

Ok..hope everyone is well....I'll keep you updated. Thanks again..

Olivia

 

[imisspopcorn]

I'm strictly ileum too!.....Your pain sounds very similar to mine. I never had constipation only Diarrhea......Good luck with the appointment. I found Tylenol does help with the stomach and joint pain, only it doesn't last long. I'm a nurse too....I've found out more inforamtion about this disease then I ever did in school or on the job by coming on this forum. I hope you feel better Olivia.

 

[farm]

They think mine is in the ileum as well but they've never been able to get a scope up that far. Last year they took out my asending and transverse colon along with some of the small bowel. Now they think it's further up in the ileum.

Nice handle by the way. I've got a couple horses.

 

[Mountaingem]

You're symptoms and mine are so alike, except as imisspopcorn says, I haven't had constipation, either. I have it in the low bowel, as well, but it doesn't flare at the same time as ileum.
You might want to visit a Rheumatologist,too, they do wonders for Crohn's related arthritis.

 

[horseluvnhonee]

Hmmm....thanks everyone...it's sounding like I may be on the right track with things?? I have been working with a rheumy for about the last year. I started with the joint pain, muscle pain, fevers, etc before any of the GI stuff ever showed its face. My rheumy is actually the one who made the connection that all my autoimmune type stuff may be linked to IBD.....she was really confused about the B12 being so low, my ferritin was low, etc. It was only after she asked me about bowel sx that I came out with the fact that I had been having the mucus, blood, etc. Like I said in a previous post....I've always had some twinge of right sided pain but also have endometriosis pretty bad so always blamed things on that.

Another question...anyone have heel or plantar fascitis(sp?) type pain? That is one of my newest symptoms that I mentioned to my rheumy at my last appt, she said heel pain is commonly seen in people with IBD...??...it was news to me but she is really experienced.

OK...thanks again everyone..you are all awesome!

 

[horseluvnhonee]

Oh...p.s: Imisspopcorn....you are beautiful!!! I've noticed that on here....Crohn's must affect good looking peeps....everyone on here is gorgeous..(myself excluded..lol). Thanks so much again....so glad to have found you guys. Hoping I can get to the bottom of this...I'm to the point where i just want to know what's going on!!!! I've been taking Vicodin prn since the start of all this....because it's the only way I can function for the most part...between work and taking care of my wonderful little 2 year old guy...it just gets to be too much sometimes. I have taken a intermittent leave...so if I have to miss d/t fatigue, pain, etc....it doesn't make me feel like the world is ending..lol...I'm not one that likes to miss work but...have missed plenty either r/t this or endo,etc. Ok..enough rambling..thanks again all..

 

[shazamataz]

Hi Olivia, mine is in the ileum as well and when I admitted myself to hospital it was because of lower right pain that radiated into my back as well as lots of night sweats and fevers and I was also very blocked up. Coulnd't really eat so lost a lot of weight over about a month. If you have fevers and sweats you MAY have an abscess (I had 3) so please if fevers/sweats get worse get to the ER ASAP!!!