New and scared

[Darlin]

Hi everyone! I can't believe that I am posting here. I think I'm in denial and would love feedback. I have a very long story and will try to keep it very short being my first post. I have been sick for 11 years. I am a 42 year old female, married, with 2 teenage kids. My symptoms are like the rest of yours'. Lots and lots of poo. Always loose to watery. Never ever normal. Somedays only 3 poos a day and some days 10+ I do experience pain some days and sometimes while I'm "going" I get severe pain on the lower right side as I'm "letting go" so to speak. Always mucos and sometimes blood. Sometimes severe bleeding to the point of the appearance of filling the toilet red. So over the years I've been told, "proctitis" "microscopic colitis" "ibs" remissions" blah blah blah................................................my last emergency visit was the scariest the amount of blood was riduculous! I took pictures with my phone (how sad is that) but it got me more attention and much faster. So I met with the specialist yesterday. He looked at my reports as I waited, watching........he said are you losing weight? I said well maybe - i'm 8 pounds lighter than the last time I weighed myself but I hate scales and avoid them so not sure when or how fast I lost it. I am losing my hair and it breaks. He said the biopsies showed mild inflamation and he did see "patchy redness and inflamation through my colon" I told him I hate hovering and want a name for it. Told him patchy sounds like crohn's to me so he used the word "crohn's disease" with the hand sign of quotation marks. He prescribed me Mesalazine. So is I don't even really know if I have been officially diagnosed! Grrrrrrr! Is he cautious perhaps since he thinks it's mild? I'm supposed to go back in 3 months for follow up, but earlier if the meds cause severe diarrhea :lol2::lol2::lol2: any feedback would be appreciated since I am somewhat confused. Do I have it? Or don't I?

 

[littlefreebird]

hi, welcome to the forum! big hugs to you! sorry you're having such a hard time.
i don't really have an answer to your question, only what you describe does sound like crohn's but as you say, your doctor may have been reluctant to diagnose as it was mild.
crohn's is very hard to diagnose as other conditions have similar symptoms e.g. ulcerative colitis & ibs.
i'm afraid it'l be a waiting game until you see him again. until then try not to worry! hope the meds work! take care. hannah.x

 

[Astra]

Hiya Darlin
and welcome

first off, you don't bleed with IBS, and you don't lose weight with it neither.
I was diagnosed at 42 too, and the gastro called it mild too.
I was also prescribed Pentasa (mesalazine) and this worked for 5 years, til a major flare last year, hospital, steroids, etc etc.
I'm still taking Pentasa and it's doing ok.
If he's mentioned Crohn's then it's highly likely you've got it judging by the inflammation he's spotted, but I'd be inclined to persist even further, and ask him once and for all, 'Have I got a definite dx of Crohn's or what?'
Give the Pentasa a chance, but to be honest this med will only work once you've got the inflammation under control and a course of Prednisolone might do the trick.
You've come away from him with no answers, research all you can on this forum, write all your questions down, make an appt with him and start quizzing him!
Knowledge is power!
Good luck
Joan xxx

 

[xJillx]

Hi Darlin and welcome! It can take many people to get an official diagnosis. Why? I am not sure. From my opinion, it seems doctors rely so heavily on biospies. Without supportive results, they won't make an official diagnosis.

I am pretty much in the same boat as you. I certainly have Crohn's symptoms (similar to yours, especially the mucus) and inflammation (even ulcers) is present in my colon/terminal ileum. However, my biopsies have yet to reveal Crohn's. So, my GI still is hesitant to say I officially have Crohn's. It is so very frustrating.