Can I get your opinion?

Based on your experience and and understanding of IBD, please tell me if what I've been dealing with for the last 15 years is IBD or perhaps IBS. Here's an outline of my story:

-- In Feb. 1992 (I was 33 then) I get real sick. Symptoms include massive watery diarrhea (with no blood -- that I can tell), stomach pain, major fatigue, and eventually nausea which leads to throwing up. This goes on for about a week.

-- I take every over the counter medication I can find at that time to stop the diarrhea and nothing works. I try fasting for several days and I eventually try the BRAT diet. Nothing settles things down for me so I go to a regular family doctor.

-- Doctor puts me on Lomotil (sp?) which also does not phase me. I'm as sick as a dog and seem to be getting worse. It's now been two weeks.

-- Finally the same family doctor (not a specialist) performs a Sidmoidoscopy and declares that she sees quite a few signs (red sores/inflamation in my colon) of what she calls IBD and diagnosis me as such. She also performs a stool test and the lab does find blood in my stools which surprises me.

-- Finally, the doctor prescribes a course of Prednesone (sp?). After about 3 days things really start to settle down and I am finally feeling some relief and start eating normally again (I've lost about 10-15 pounds or more). In fact it works so well I get constipated and have to take a laxative to clear my bowels. When that happens I have for the first time in about 4 weeks formed and somewhat solid eliminations. The Predizone did it.

-- Now that things are under control, the family doctor prescribes Sulfasalazine (sp?) as a maintenance drug. I take that for over a year during which time I am still having multiple BMs per day (around 3-5 but with no blood at all) that are somewhat loose but mostly formed and solid but full of mucus -- lots and lots of mucus. That goes on for about a year, but I'm not sick like I was in the beginning. In fact I feeling pretty good except for the crazy BMs that I'm having at the time.

-- Finally, I go to a GI specialist because of the multiple BMs and mucus I am still having. He performs a full Colonoscopy and finds absolutely nothing. He says I'm clean as a whistle and declares that I have IBS instead of IBD. He suggests that I take a fiber supplement each day. I ask him about my family doctor's diagnosis of IBD and he just shrugs and says he doesn't know how to explain that. He tells me to stop taking the Sulfasalazine. Says I'm just wasting my money on that.

-- So I start taking a lot of fiber and it does really seem to help to a point where I am pretty much back to normal and I find that I don't even need to take the fiber supplement anymore. It's now been 18-24 months since my initial attack and I'm curred!!

-- That was 13 years ago. Since then I have had many, MANY "minor" flare ups but nothing that Immodium AD does not fix for me.

-- Now, today, I am going on my third week of loose watery BMs with no blood but with a fair amount of mucus in them. I was having around 4 BMs per day and now I'm having 2-3 watery BMs per day. I am not feeling any pain nor do I have the awful, fatigue/punk feeling that I experienced 15 years ago, but nothing is taming the watery diarrhea -- even Immodium AD is doing nothing for me.

My current family doctor (not the other family doctor from 15 years ago) is having me submit a stool sample for testing and I'll find out about that in a few days. Also, I do have an appt. with a GI specialist the first of Oct. My current family doctor did do a CT scan of my pelvis and bowels and that came up "normal."

So, that's my story. What do you think I have? IBD, IBS, or is it something else?

Thanks for your support and advice.

I can only say that if it were me I would make sure I saw a GI Specialist. Maybe even more than one (second opinion). In my opinion the regular PC Physician may just not know enough. Good luck with this. :)


Melissa

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Asacol 2x 3 times per day
Hydrocortisone Enema 1 or 2x's per day
8oz Aloe 2x's per day
Zango on and off

Definitely see a good GI specialist. It sounds like you have something that when properly diagnosed might be a heck of a lot easier to control and keep under control than what a lot of folks are dealing with here.

It is really worth putting in the time and effort to get a handle on this and whatever proper maintenance drug can be prescribed to keep you feeling well. The last thing you want is to leave what might be in the "minor" category to escalate into something more serious that will make your life more miserable and harder to control.

The best of luck to you.

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60 yr old male~Colitis 1st diagnosed Jan '05-cleared up within a few wks. Flared again in May '06 ... left sided UC now, fully involved and trying to get in remission. Acute inflammation-pancolitis-tenesmus rectal pain-granulation is showing some healing started. Osteopena of spine from prednisone DX 8/07  July 07 good days & bad days 75mg Imuran 40  mg prednisone (tapering 8/07) 12 Asacol, Lidocaine Hydrochloride Jelly 2%,multi vitamin, iron 3X day, DanActive, chewable calcium, Prilosec 20mg, enalapril 10mg, glipizide 5 mg, zocor 20 mg, baby aspirin, (Fentanyl pain patch 50mg 72 hrs  Morphine Sulf 15 mg twice daily)Colocourt enemas at night. Fosamax and mthly B12 shots folic acid 1mg

I'll be interested to hear what these "new" docs think.

Some things to keep in mind: With IBS there is NO blood. Years can come and go between IBD flares. Doctors can be wrong. (In fact many IBD patients have been misdiagnosed at some point.)

Even if you are feeling well, make sure you keep that appointment with the new GI!

Best of luck!

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Pan-colitis and GERD diagnosed May 2003

 

Asacol 12 per day,  Azathioprine 75mg, Rowasa and Canasa as needed

Aciphex, Effexor XR, BCP, Rhinocort nasal spray

Culturelle, Biotin, Folic Acid, Forvia, Calcium, and B12

 

Osteopenia (hip and spine) from prednisone use.  Started Azathioprine because I was steroid dependent.

 

Co-Mod for the UC forum

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Thank you, all.