Can I get your opinion, please?

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I Gotta Go
Regular Member


Date Joined Sep 2007
Total Posts : 44
   Posted 9/13/2007 4:30 PM (GMT -7)   
Based on your experience and and understanding of IBS and 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.

softy
Veteran Member


Date Joined Jun 2004
Total Posts : 798
   Posted 9/13/2007 7:26 PM (GMT -7)   
Some people believe that you can have both IBS and IBD at the same time.  Regardless, you need to go back to the doctor and get bloodwork and a colonoscopy, maybe even a capsule endoscopy (camera pill to check the small bowel out).  I'm not a doctor but it sounds like if you did/do have IBD that the drug combination you took, Sulfasalazine and Prednisone, put you into remission for a nice long time OR you don't have IBD and have something else going on.  Please go back to the doctor and get this sorted out.
 
Good luck and let us know how it turns out :-)
Take care, Softy
 


SnowyLynne
Veteran Member


Date Joined Apr 2004
Total Posts : 1539
   Posted 9/13/2007 8:35 PM (GMT -7)   
IBS vasillates from constipation to diahrea.It's the nature of IBS.
SnowyLynne


dbab
Veteran Member


Date Joined Jan 2004
Total Posts : 4151
   Posted 9/17/2007 10:04 AM (GMT -7)   
Yours is a really tough situation. One thing that jumped out at me is that the Prednisone worked for you. Prednisone is an immune suppressant so it would not affect your IBS either way, if it is/was IBS. It helped calm down the inflammation which appears to be an immune response. Given that though does not necessarily mean IBD. There are many other causes of over active immune system or autoimmunity. IBD is just one (2 if you count both Crohn's and UC). I was given the UC diagnosis a couple of years ago because I had ulceration and inflammation in my colon. Like you, I was put on a short dose of pred and UC maintenance meds which helped and worked. My last two follow up scopes indicated NO ulceration let alone inflammation, I was taken off the meds and still was fine... thus the UC diagnosis was taken away. In the midst of all this time, it was discovered that I had a connective tissue disease, UCTD (or early lupus). Everyone of my docs now are believing that it probably was the Lupus that attacked my colon (Lupus can attack any organ in your body causing inflammation).

Now I'm not saying that my story can anyway be related to yours however it points out that things aren't always this or that. The frustration in getting any kind of answers or diagnosis I can truly relate to and seeing that you have gone a long time with this (so glad you had a long remission), my heart truly goes out to you.

Inflammation and blood can also be caused by food poisoning and other type of problems. It really pays off to get a full workup and really push your docs with this. I also agree with softy that a pill camera test is a good idea.

I sure hope you can get some answers soon, please keep us updated.

Take Care
"Des"
Co-Moderator ~ IBS Forum
Co-Moderator ~ Lupus Forum 
Dx: IBS 1989, Diverticulosis 2004, Idiopathic Acute Colitis 2006, UCTD 2007
Meds: Plaquenil 400mg, Chlorzoxazone 500mg, Lyrica 50mg, Protonix 40mg, Lodine XL 1000mg, Klonopin PRN, Miralax 17g, Supplements


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I Gotta Go
Regular Member


Date Joined Sep 2007
Total Posts : 44
   Posted 9/17/2007 10:10 AM (GMT -7)   
Des and everyone else,

Thank you for your advice and support. I really appreciate it.

Keriamon
Veteran Member


Date Joined Jun 2005
Total Posts : 2976
   Posted 9/17/2007 10:26 AM (GMT -7)   
So, you have blood in your stools and visible inflammation and even sores. Your doctor puts you on an immune suppressant drug and you get better. Then another doctor looks at you, sees nothing and says you can't have an IBD?

Um, why SHOULD you have visible sores and inflammation and blood in your stool if your medicine had worked so well that you felt fine? Looks to me like the medicine did its job!

Like someone else said, you can have non-inflammation bowel problems (IBS) separate from bowl-inflammed problems (IBD). So yes, you may have IBS on top of the IBD, but I think your doctor was wrong to take the IBD diganosis away completely. Plenty of people go into remission with their IBDs, sometimes for years. When you are in remission, you have no visible inflammation. While your problems may be IBS right now, if I were you, I'd keep a careful eye out to make sure that it didn't turn into another IBD flare. Or, like Des said, you may have SOME auto-immune disease, but not necessarily a bowel-related one. Besides lupus, fibromyalgia can cause a lot of bowel problems too. If the fiber is working, then that's great, but if it stops working and/or you get worse, get blood in your stools, etc., then hurry to go get looked at again.

I Gotta Go
Regular Member


Date Joined Sep 2007
Total Posts : 44
   Posted 9/17/2007 12:51 PM (GMT -7)   
Again, thank you. Very good information to know.

BigLucy
Regular Member


Date Joined Mar 2007
Total Posts : 413
   Posted 9/17/2007 7:48 PM (GMT -7)   
I have both ulcerative colitis and IBS--for sure, 10 years now (actually, longer, undiagnosed).
Dx Ulcerative Colitis 1999; IBS; CP: Asacol x3 x3/day, Rowasa, Proctofoam, Prilosec, Bentyl, Prozac, Endocet (as needed), multi vit, probiotic, fish oil caps x2/day, calcium 1200 mg./day, Prednisone (off/on, unfortunately).


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 9/17/2007 9:25 PM (GMT -7)   
I have both IBS and crohns....with crohns you can have D or C or alternating just like with IBS...a colonoscopy and other tests like a SBFT rules out IBD if there is no inflammation then there is a good chance you're dealing with IBS as there is never inflammation with IBS only with IBD same with bleeding, none with IBS with the exception of hemherroides.

Symptoms of IBD and IBS are similar.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)

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