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First diagnosed with UC, now with Crohns

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Crohn's Disease
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Posted 3/31/2018 11:58 AM (GMT 0)
Hi all! I'm 34 and diagnosed with Crohn's just 4 days ago on 3-27-18. I will try to keep this as short as humanly possible and keep it simple to follow.

~2007 I had my first colonoscopy due to bright red blood and some mucus when having a bowel movement (my only 2 symptoms). I was diagnosed with Ulcerative Proctitis (inflammation was limited to my rectum area) and given Canasa Suppositories which cleared me up in no time. No issues again until fall/winter of 2015.

~2015 Same symptoms as in 2007. Bright red blood with some mucus (my only 2 symptoms). I had another colonoscopy that showed inflammation in my rectum. However, this time, although the rest of my colon looked healthy, the biopsy showed non-active disease a little bit higher up. Still consider Ulcerative Proctitis, possibly left-sided colitis) This time I was put on Lialda (1 pill a day). Cleared up, and stopped the Lialda. No issues until the following fall/winter of 2016

~2016 Exact same symptoms as above, took the Lialda, it cleared up. No issues until the following fall/winter of 2017.

~2017 Bright red blood, mucus, but this time....I'm going to the bathroom a lot more (diarrahea) and am having urgency. The Lialda is not working. Doctor increase Lialda to the max, and prescribed Rowasa enemas for 2 weeks. After just the FIRST DAY of the Rowasa, ALL symptoms went away. After 2 weeks of enemas, and 4 weeks of max Lialda, doctor told me I was all good and could stop all medicine. After a week off of the Lialda, mild bleeding came back. Doctor scheduled a colonoscopy and endoscopy. Endoscopy was normal. Colonoscopy showed inflammation in rectum area (what we excepted), but also showed a small inflammed area at the other end of the colon. Normal areas in between. I now have Crohn's.

THE ONLY symptoms I have ever had was bright red blood, mucus, urgency, and loose/diarrhea bowels. I suppose I should be thankful. But I have A LOT of questions. My doctor encouraged me to get a second opinion so I see that doctor on 4.19.18. I am on Lialda until then. He mentioned Humira and another type of injection and I just was SHOCKED at what type of treatment I will have to do. I'm scared of the side effects. I FEEL good, I don't want to do treatments if it will make me feel sick all the time.

For now...I just wanted to share my story. Is this normal to have Crohn's with only these very mild symptoms? What can I expect? Are the injections worth it?

Any advice, comments, opinions are very, very much appreciated!!!!
Posted 3/31/2018 12:25 PM (GMT 0)
I don't usually question a doctor's diagnosis but I'm not convinced you do have Crohn's. I think you could just have UC with a caecal patch. More information on it in this thread.

/www.healingwell.com/community/default.aspx?f=38&m=1557255

If you had a colonoscopy, presumably biopsies were taken. Biopsies usually confirm whether it's Crohn's or UC. Admittedly there are some cases where the biopsies are non-specific or ambiguous and so a definite diagnosis can't be given. But I'm wondering what your biopsies showed.

I'm annoyed at your doctor for telling you to stop all medication. You should have stayed on Lialda at least, if not the enemas.

Humira (and possibly methotrexate? You mentioned another type of injection) does seem overkill, unless the inflammation was severe. In which case it's reasonable to put you on a biologic. But since enemas worked so well before, I'm not sure what your doctor's reasoning is for not giving the enemas another go.

It can be normal for Crohn's to present mildly, yes. Sometimes because it really is a mild case; at other times because it hasn't had long enough to develop into something worse. I don't know which category you fall into.

I'm glad you're getting a second opinion. If the second doctor confirms Crohn's, then I'd be inclined to accept the diagnosis. (Apologies if this reply is all over the place. I'm severely sleep deprived :-/)
Posted 3/31/2018 1:09 PM (GMT 0)
Thanks for the reply. The other medication he mentioned was Remicade. I remembered after seeing your medications listed. Biopsies were taken and he said that both inflamed areas showed the same thing. What that was idk. My mind was all over the place I didn't think to ask. But it seems that he is basing his decision on the fact I had healthy tissue in between the inflamed parts. My small bowel was fine. He told me that they like to start out strong with treatment with Crohns and then they can back it down if I'm doing well. But he did come across as though i did not have severe inflammation. Im having normal bowel movements, it just has some blood with it. I'm just so confused.
Posted 3/31/2018 1:35 PM (GMT 0)
I agree with NCOT & I sure get that 2nd opinion. In the meantime, call the drs office & tell them you need a copy of your scopes & the biopsy report too. You should always keep a file of your own with test results. Drs offices are use to patients wanting copies so it should not be a big deal with them. I will give your dr credit for wanting the 2nd opinion.

Take care.
Posted 3/31/2018 3:45 PM (GMT 0)
I only had mild symptoms for years an years an didnt think much of it so didnt decide to get it checked out even though that was stupid, they dont normally diagnose people with crohns an then it changes to uc i thought the reverse was true for most people but i guess you never know , I havent taken any meds for crohns as i didnt know i had it until my surgery but i dont blame you not wanting to take those strong drugs but i think i would have tried them if i could go back in time beofre my colon burst and if i knew i had crohns i would have tried it as knowing what could happen now i would rather i didnt have to have my colon out , if the meds make you feel bad you can change to another or stop them

Post Edited (lazyminimoo) : 3/31/2018 10:53:39 AM (GMT-6)

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