My Battle

[markymark1985]

Hey everyone, New Here heres my story seeing if anyone can relate/ anyy suggestions?

I have had digestion/ GERD for years now - always been very active and love sports/ working hard

In september I went away for Graduate School and all summer I wasnt feeling to great. I ended up going to Grad school and for 2 months i was battling with Nausea, Indigestion, Burping, Diarehha, mucus/blood in stool etc. Most doctors said it was stress, and they prescribed me high doses of nexium and anti-anxiety drugs - which didnt help out the situation.

I didnt want to leave school (my dream program) but after losing 25 pounds and being malnourished i was forced to. (I am 6 feet 120 pound currently).

I underwent a ton of tests. First a CT scan which came up normal, then an endoscopy/ colonoscopy - the biopsy from the colonoscopy showed inflammation in the Illeum. SO they did a Small bowel follow through - however b/c of my anatomy they were unable to view the Illeum. Next, a nucleuer WBC test was issued - but that too was (-) for chrons. Then the doctor i was seeing basically said he didnt think it was anything serious just go and rest get better.

I called another GI specialist to get a second opinion and saw him a week ago after waiting 3 months with awful reflux, nausea and lower abdominal gas issues. He prescribed me PREDNISOne and said that stress doesnt cause inflammation in your intestines so we need to treat the area and hopefully youll feel better.

I have been to dieticians, psychologists etc. and i am getting anxious b/c so far this predisone is making my tongue even more ulcerated and I am not getting better and I got about 4 months to try to recover before I can go back to school!

I am 99% sure this is chrons (IBD) so are the doc's and I want to try to get it treated...does anyone have a similar story or any more tests that should be run - i see the specialist in 4 weeks aggain after my prednisone tapers offf!

 

[stuart 51]

A similar story

Hi and welcome to the forum, I'm new here also, like you I've had gerd for many years, I'm currently on nexium also, I was told it was the strongest I could have. A lot of my symptoms have been put down to stess and I was on medication for anxiety etc. for years until last year when I got fed up with the constipation it caused, I thought I would improve but I'm actually getting worse. I am however getting tests done a the moment, I've been told that I have inflammation in the small bowel, and I'm on entocort, but not offically crohn's having an MRI scan this week so I'm hoping that will give a clearer picture. I'm not mentioning stress to the gastro doc if I can help it, or that will be it. I hope that you can get sorted out soon, I like to keep active like you and I have a job with lots of heavy lifting which I'm finding hard to cope with. There's a lot of knowledgeable people on the forum who I know can help with lots of info and experience, Stuart

 

[markymark1985]

Yeah, I stopped taking all acid reducers, as I find they cause more problems - Plus I think they are treating my symptoms and not the actual cause (CHRONHS) - I have been out of school/work for 6 months as i dont have a lot of energy and the morning reflux is awful/ nausea. I have been applying for some aprt time summer stuff to get me on my feet for school. I used to be a personal trainer/ very active now after not working out for 6 mths I have lower energy - i think i need to get back into this.....but with decreased absorption its hard to maintain high levels of activity (school, work, exercis etc. I want to be intense / work hard but this suspectvie chrons is killing that

 

[teeny5]

I am not sure if there are any other tests that can be run. I would just be persistent with the doctors and if your meds are not working or giving you side affects that you can't deal with to ask for something else. I had to push and push to get a different medication. My dr. kept saying what I was on was working...it so was not.

 

[daisy_dueller]

I'm not a doctor...but it sure does sound a LOT like Crohn's. If it wasn't...I'd be shocked.

I was actually diagnosed with an MRI...no radiation =
Maybe you could suggest that to your doctor?? You may have to be referred to a specialist (Gastroenterologist) first though...that was the case for me, at least.

I can't believe that will ALL of the symptoms that you had plus the huge weight loss that your doc just told you to go home and get better!!! What a jerk! Either that, or he's lazy and has no business being a doctor! Those are pretty serious symptoms that indicate a larger problem, and for him to just dismiss them like that is ridiculous!

I hope you find some answers soon! This is the worst part...not knowing what the heck is going on in there!

 

[D Bergy]

H-Pylori in my stomach caused me similar symptoms. They were worse than my Crohn's symptoms with the reflux and constant burning. I believe I have always had it, but using lots of antacids allowed it the opportunity to move into my stomach.

I now believe H-Pylori may play a role in Crohn's or is just a coinfection common to the disease. I have no hard proof of that.

I would assume they would have tested for this already, but maybe not. The tests can be wrong, as they were in my case but it would not hurt to try it.

Dan

 

[mRae85]

I got ignored for 8 years before I got diagnosed and like with you, I was put on alot of "brian numbing" pills so I can relate to that... and no, they dont help you at all. I'd also be shocked if this isn't Crohn's, it sounds like it. You might have to go in for another colonoscopy to get a total diagnosis but knowing the Drs have you on pred at least shows that they are going to try to get it under control.

 

[markymark1985]

Hey guys, thanks a lot for your suggestions.......I REALLY appreciate it... Yeah no question I think its chrons and I think the GI specialist feels the same way otherwise i wouldnt be on prednisone............ although ive been on it for over a week now and Im finding no postive results except for an increased appetite (but still have a weird discomfort in my right side and acid/ mouth ulcers)

 

[mRae85]

Just so you know, I've been on pred now for a long time and as of the Monday my Dr started tapering me, but I still feel alot of my symptoms (mainly killer pain in my abdom areas) so I cant say that pred is a "cure all" for any of us, and sometimes it can take some time to find a treatment that really works. What works great with one person, won't do anything for another, just gotta keep looking and keep fighting. Keep us up to date, we'll always be here for ya

 

[ladyB]

:welcome:
Hi! I hope you get the answers you need.
Looking forward to hearing more from you.

 

[Guest]

aw it is sooo frustrating when you know there's something wrong but nobody can tell you what!

i agree, it does sound like Crohn's. i wouldn't know what tests to advise other than what you've had... mine was diagnosed from biopsies, but that was after years of my symptoms being ignored or put down to numerous ridiculous guesses by my gp. keep fighting for diagnosis, but in the meantime maybe treat yourself as if you do have Crohn's and adopt a diet & nutrition plan that a flaring Crohn's patient might have.. see if it helps your symptoms at all.

good luck!

 

[drew_wymore]

Hey Mark,
First welcome to the community. It sure does sound like Crohn's but I'd keep up the battle until you get an answer. As far as the Pred goes, if you aren't seeing relief you could need a higher dose (I know .. it sucks) .. or you might need to give it a little more time to build up in your system. Most of the people on here have been on very long courses in order for it to be useful. I was on it for 7 months ... in doses as high as 60mg so I do really understand the nervousness/anxiety crap it causes.