Pain question

[Miss]

pain question

Everyone talks about their pain and discomfort.
I have never had any pain with crohns. I'm wondering if this is even a correct diagnosis.
The only symptom I have had is bloody stool. I went to the gastro in June and had a colonoscopy. Most of my colon was pretty inflamed so they started me on prednisone and asacol. Within two days I was much worse. I called and they upped my prednisone but I think I was having a reaction to the asacol. I did seem a little better from upping the prednisone for a week or so but then got really bad. I was having 20-30 bm all bloody water basically daily for weeks and a low fever. I kept telling the gastro I was worse but apparently they didn't take me seriously.
I ended up going to the ER on my own. They kept me there for twelve days and did another scope and I was tremendously worse. This was about two months after the first scope. The put me on sulfasalazine, an IV steroid, and started remicade. I was so malnurished that they ran a pic line in me and gave me TPN for four days.
All this time they told me my upper GI and CT scan are totally normal, nothing wrong with me other than the colon being so inflamed. I never have any pain anywhere no matter what I eat or whatever. I don't even have pain with bm.
I'm starting to question wether it's even crohns at this point or I got inflamed originally from a virus, fungus, bacteria, parasite, whatever.
The asacol definately made me much worse than I was when I originally went to the gastro.
I have read many posts and different sites on being tested for a specific crohns gene, has anyone here had that done and how does it work?
If my problem isn't actually crohns I would like to find out the cause and how to treat it without doing the remicade.
After my first remicade treatment I got thrush.
After the second one I got thrush again, rash on my face, spots they called petechaie sp? I also have muscle and joint weakness that I didn't have before.
They are saying it's all from the prednisone but I never got this before any remicade treatments and was on pred before them so I really feel I'm having a reaction to the remicade.
However they measure inflamation, mine was fourteen in the hospital about five weeks ago and now I'm down to two. The treatments have definately helped, I was having less bm the day after first infusion. I've had no blood or D for weeks and go once or twice a day now.
I am really concerned about these side effects, they are listed on remicade as serious and to contact your doctor immediately but the gastro says it's from the prednisone?
Any help here would be appreciated.

Thanks,

Miss

 

[teeny5]

Some people don't seem to get pain. Did they do blood tests too? My GI ran a ton of tests to make sure I didn't have a virus or anything. Had blood, stool and urine samples taken. I would push for further tests or get a second opinion if you don't trust the diagnosis. IBD can be difficult, but they should rule out everything else first.

I had the Prometheus test to look for Crohn's, IBD, and UC markers. Came out "not consistent with IBD." But, I do have visual signs of the disease in my colon. So, who knows. For some the test helps the DR. determine what type of IBD you have so they can better tailor a treatment plan. For me it didn't help at all.

Good luck...hope you get the answers you need soon.

 

[Crohns08]

Have they done tests for celiac sprue? What about bloodwork? Are you even anemic?

 

[Miss]

Have they done tests for celiac sprue? What about bloodwork? Are you even anemic?
__________________
Thanks for the replies.
They said celiac came back negative but I heard that can be thrown off if you already are gluten free, which I was at the time of testing. Tons of bloodwork but I'm not even sure what all they looked for. Severely anemic, was down around an eight in the hospital am now up around nine and a half, they said normal is twelve and higher. I'm not sure how bad it was when I got to the ER but the dr that admitted me was talking about transfusion but we held off on that and it gradually came up. However they measure inflamation mine was fourteen and now I'm down around two so major improvement there.


Miss

 

[RHOV]

an iron supplement may help you with anemia. i take an iron pill and a multivitamin w./ iron. ask your doctor!

 

[ladyB]

I agree that if you are inflammed you would think it would be painful.
I'd try for a second opinion. Your health is worth it.
Keep us posted.

 

[dayng1016]

Welcome aboard, Miss!!
I would definitely see about another opinion if our not satisfied with the first. I myself am seeking another one too, just to make sure. I get the pain, no diarrhea, instead I get constipation, bloated, fullness after eating anything, and too many other issues to list. I had a colonoscopy, 4 CT's, 2 small bowel series, no blood work (specific to IBD), just the basic to check blood count etc., not anemic, but have lost approx 20lbs. I agree with the others on getting tested for celiac sprue. I also had that done, and so far all but are back and normal.
Good luck and keep us posted.

 

[Colt]

This sounds like standard Ulcerative Colitis. You are only being affected in the colon, you have no signs of fistulas or abscesses, no strictures, your extra-intestinal symptoms are very minor or non-existent, and you have no pain. I honestly wonder how on earth your doctor came up with crohn's disease instead of UC.

UC does not hurt, or if it does it's because of muscle spasms associated with the diarrhea and it's not as bad. UC only affects the first layer of the intestines whereas crohn's disease will affect the intestine all the way through. The first layer does not have nerves. It can't feel. The constant daily pain from crohn's disease (other than the peaks caused by strictures and such) comes from that damage deep into the tissue where there are nerves.

Considering that your doctor found no ulceration (not unlikely for early crohn's or UC) to test the depth of damage on I can only think of one thing that could have gotten you a crohn's diagnosis. Your doctor jumped on the first thing that came to mind and for some reason your doctor is more familiar with crohn's disease.

 

[Miss]

The one doctor in the hospital mentioned ulcerative colitis but when I asked the next doctor about the comment he acted like they are basically the same thing and treated the same? Pretty much like whatever, whichever one you have? I'm thinking I need a definate diagnosis, second opinion here.

Thanks,

Miss

This sounds like standard Ulcerative Colitis. You are only being affected in the colon, you have no signs of fistulas or abscesses, no strictures, your extra-intestinal symptoms are very minor or non-existent, and you have no pain. I honestly wonder how on earth your doctor came up with crohn's disease instead of UC.

UC does not hurt, or if it does it's because of muscle spasms associated with the diarrhea and it's not as bad. UC only affects the first layer of the intestines whereas crohn's disease will affect the intestine all the way through. The first layer does not have nerves. It can't feel. The constant daily pain from crohn's disease (other than the peaks caused by strictures and such) comes from that damage deep into the tissue where there are nerves.

Considering that your doctor found no ulceration (not unlikely for early crohn's or UC) to test the depth of damage on I can only think of one thing that could have gotten you a crohn's diagnosis. Your doctor jumped on the first thing that came to mind and for some reason your doctor is more familiar with crohn's disease.

 

[Miss]

I'm scheduled for another remicade treatment next week but don't see the GI again until November. I'm almost afraid to have this next treatment given the stuff that has happened since the last one. I'm wonderring what will pop up next. The eye issues and joint/muscle stiffness/achiness is what concerns me the most as far as the side affects.

Miss

 

[Colt]

Crohn's and UC have similar treatments but it's not exactly the same. Various drugs affect different parts of the intestines and so it's important to know when you only have to worry about the colon like in UC. It's also important to know so that you can look or not look for certain complications which are different.