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Newly diagnosed and concerned about my recent flare up

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Crohn's Disease
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Posted 8/17/2015 1:46 PM (GMT 0)
34years old and freaking out!!!

New to the forum and recently diagnosed after many years of thinking it was IBS like issues.

Pan colotis crohn's with peri anal disease. Been informed Remicade is the decision for treatment and waiting to get that started.

However, I have had a major flare up for the last week, with up to 12 times a day with blood and mucus every time and because this is all new to me... WHEN SHOULD I BE CONCERNED AND GO TO THE DOCTOR OR HOSPITAL?

Stomach cramping, severe urgency, waking up in the middle of the night, Immediately after eating needing to be by the bathroom, extreme fatigue and joints pain throughout the body

Any help or support would be appreciated. My GI doctor is VERY hard to get ahold of to see and not sure the next step if I have flare ups like this often.

thank you all in advance
Posted 8/17/2015 3:38 PM (GMT 0)
Hi Crystalle,

Your symptoms definitely do sound like IBD with all that bleeding especially...I too suffered for decades with your symptoms but I was either allergic or non-responsive to oral meds so I flared for over 2 decades until I developed a recto-vaginal fistula which made me a candidate for either Remicade or Humira. I chose Humira for convenience and it did put my crohn's colitis in remission as well as healed the inflammation in the recto-vaginal fistula (apparently the tract will stay forever but when not inflamed it's not suppose to be an issue, new to the fistula experience and that sure scared the heck out of me!) I know the nocturnal bowel movements are especially hard since we need sleep when flaring so badly.

I was honestly at my wits end as it was, then when the fistula appeared I didn't know what I was going to do for my pain since pain meds just made me more constipated so I started smoking mj and that has made a world of difference. I also have IBS mostly constipation but sometimes alternates with diarrhea especially during my menstrual cycle, the mj definitely helps give my gut a break from BM's and any discomfort, which is better now since the Humira has taken away the inflammation but for my IBS I still use mj for cutting down frequency issues with it.

You can call your GI and ask if you should go to the hospital before they start you on Remicade and see what s/he says, I don't know if there's a whole lot they can do for you at the hospital other thatn tube feed you to rest your bowels and maybe give you prednisone to help give you a break before starting Remicade which I know can take some time to get organized. Hopefully the Remi will give you a full remission and you can put this ugly flare behind you!!
Posted 8/17/2015 3:47 PM (GMT 0)
@pb4 Thank you so much for your reply. I had 2 fistulas removed from the rectum in 2011 and during the colonoscopy last month they discovered inflammation throughout the entire colon ( hence the pan colitis diagnosis) they also removed what they thought was a polyp but might have been an inflammation nodule or something as it came back negative. Overall a challenging diagnosis with not alot of answers on what to do when I flare etc. But I guess that will happen more soon.

I see my GI wed for my MRI results to hopefully see that there is no fistulas internally ( which they are concerned about)

How did you know you had the rectal vaginal fistula? Also do you know if HUMIRA is easier than REMICADE from those you have spoken with?
Posted 8/17/2015 9:51 PM (GMT 0)
@BRelaxed

Thank you. I am seeing a new GI Wednesday so I should be able ti wait until then. This is all good advise. I will have more answers then and once I do plan to make the decision to get this tackled asap.

Thank you again
Posted 8/17/2015 11:55 PM (GMT 0)
I knew I had the RV fistula when I started passing gas out of my vagina, what a terrifying and low experience to go through, I was just glad I never passed stool through it which was my second biggest fear of happening...especially since that's usually what happens after you start passing the air/gas, it was humiliating enough with the air and I heard that passing stool through there is quite painful...I felt more than enough pain and pressure in my vaginal and anus/rectum areas since I was also severely constipated (thanks to the IBS and CD coexisting together.

I do the Humira shots myself and I find it more convenient than getting Remi infusions....I've heard Humira works generally better for CD and that both work wonderfully for fistulas for the most part (might depend on how complicated the fistulas are) my GI let me choose between the 2 so I chose Humira, plus I heard more often, that with Humira since it's made with human protein doesn't seem necessary to take other meds like Imuran for less chance of developing antibodies to it and since I'm either allergic or non-responsive to those oral meds I figured Humira fit me better. Both offer patient assistance through the US and Canada (I'm in Canada) of course everyone responds different to meds, and they often say if one biologic doesn't work the next one usually does...trial and error.

Trial and error for you diet too, the GI's aren't generally educated in how to deal with what foods to avoid, if you can find a good dietitian that specializes with IBD and gut issued patients you'll likely fare better otherwise it's all trial and error on your part so a dietitian can be very helpful!
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