Feeling worse-what would you do?

[Keralin]

Hey ya'll. I'm relatively new to this stuff, and was hoping to seek a little guidance from the more experienced. I've had a working diagnosis of Crohn's since mid-August. My doc put me on Asacol HD in an attempt to better my situation, although his first recommendation was Entocort. Maybe it was a placebo effect, but after about 10 days I started to feel a little less nauseated and and noticed a tiny increase in my energy level. Unfortunately, that wasn't long lived and I feel like the floor has dropped out from underneath of me. I'm right back where I started, possibly feeling even worse, and I'm having abdominal pain in places that were pain free before. I've lost another 5 pounds since my appointment, making me even more underweight (I'm 5'6 and currently 93lbs). Even the thought of food is making me retch today.

My next appointment isn't until the 24th of this month. Should I wait it out and see if things improve again, or should I try to get an appointment sooner? I know there has to be a reason that he keeps setting my appointments one month apart, but dang, this is miserable. Any advice?

 

[DJW]

Hi Keralin. Sorry your going through this. The early stage is the toughest. So much to take in. I'd suggest giving the office a call. It can't hurt. I'd also suggest keeping a journal. Foods that work and don't work along with symptoms. It's easy to forget things when your in with the doc. Best wishes.

 

[shamrock15]

Unfortunately, many of our bowel meds take a long time to act. Asacol wasn't useful in my case at all - it is aimed mostly at the colon rather than the small bowel. I haven't taken entocort before, but believe it is similar in function to prednisone. It might be a good option. I don't know if you are getting vomiting with the pain - if you are, you may want to go to the ER when it happens. It is possible that the inflammation is causing obstruction and it can be dangerous. If it gets too rough, go to the hospital.

 

[Keralin]

My follow-up visit didn't really get me anywhere. My doc pulled me off of Asacol, and put me on Entocort. It has been a week, and I'm not feeling any change. Some of my symptoms are actually worsening, and even though my appetite is coming back, as in I feel hunger (steroid induced, I'm sure), I'm still unable to eat an appreciable amount of food. The drastic weight loss is alarming to him, so he referred me to a doctor at MUSC. He also ordered a CT Enterography, which I have the pleasure of doing tomorrow.

I had a contrast/barium CT, ultrasound, egd, colonoscopy, and gastric emptying study; all of which came back normal with the exception of some non-specific colitis in the colon. The only thing we're working with is the dozen or so ulcers that showed up during the capsule endoscopy. My cbc's, cmp's, and c-rp continue to come back normal, so he's really at a loss as to what's causing such severe malaise. Also, my Prometheus ibd serology test came back positive for IBD, but consistent with Ulcerative Colitis, yet my diagnosis stands as Crohn's disease. I guess it's not an exact science...

I had a checkup with my PCP last week, and she thinks I have something neurological going on, as I have severe muscle spasms, balance issues, pretty bad headaches, and involuntary eye movements in one eye. Some of that stuff had been present long before my bowels went apesh*t, and she was dismissive about it at that point, stating "your electrolytes are probably off". I had an MRI, and as far as the tech could tell everything looked normal. Something doesn't add up. I'm trying to play House MD here, and I'm not coming up with much. I feel like the Crohn's disease accounts for SOME of the stuff, but the focus has been on my guts for so long, that I wonder if an entirely different possible illness is being ignored.

Oh well. Whine, whine, whine. How do you all stay sane?!

 

[DJW]

Hi Keralin. Vent away. IBD is a nasty group of diseases that affect us on so many levels. We've all been there. Lean on your support groups (in person and online). Hang in there. We are here for you.

 

[Kit]

Keralin so sorry you are going through this. A journal is a great idea. I wrote down what I ate and how it made me feel. That helped me to know what foods i could eat. When I was nauseous ginger ale and crackers/toast were my favorite. I hope the drs can figure out soon what is going on, and yes you can have more than one thing going on.

 

[Axelfl3333]

Crohns is a pain,it could have been working away for a few years I suspect mine was, as someone on another reply said and there right the medication can be slow to kick in.patience I,m afraid,check on the dietary advice it's helpful and it's a good thing your getting some appetite back you,ll need it.good luck

 

[Keralin]

Thanks, guys. I appreciate your kind words. My support system right now is my husband, and he's active duty military, so we're about 600 miles from "home". I'm trying my hardest to fake it as to not overburden him. I do have an appointment with a dietitian in a couple of weeks, and am in the process of putting a food log together. Patience is definitely in short supply, but I sure am working on it

 

[iriechic]

Hey Keralin,
I'm a born and raised South Carolina girl. I see you live there now, not sure if it's your home state. Anyhow, I had to drop a line to say hey from one S.Carolinian to another! Sorry you are dealing with this disease. It's literally stinks, I wish there was a cure so this forum wouldn't be needed and no more suffering. God bless you for keeping a strong front for your husband. My poor hubby hears all the whining. I hope you have great success at MUSC. My brother went to dental med school there. I'm sure Charlotte, or Raleigh, NC, or Atlanta, GA, might be good places too? I only suggest alternatives prematurely because one friend tried MUSC for a bit but then went to Boston, MA, for further treatment. I think it all depends though because every patient is so unique and so are the doctors and their treatments. Wishing you super health and fantastic, compassionate physicians

 

[Keralin]

Hi Irie! I'm originally from Ohio, but I've settled right into SC. It took me a little while to acclimate to the heat, coming from Alaska, but I actually enjoy it now! MUSC is definitely the last stop down here. If we don't start figuring stuff out soon, I'm going north to OSU or Cleveland Clinic. After I jump through all of the insurance hoops, of course.