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Think I am starting to flare

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Crohn's Disease
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Posted 6/20/2011 7:01 PM (GMT 0)
I apologize up front that this might just be more of a vent of frustration....

As some of you may know I had a resecton back in March. (Now 14 weeks post op)  things seemed to be going really well.  I was having very close to normal formed BMs and only maybe 2 a day.  Had some nausea troubles which were taken care of with gerd meds.  I was back to eating some fruits and veggies as well with no issues.

Well the past week or so I have gone back to watery or mucousy BM and going 5-10 a day.  I am also getting pain sometimes an hour or so after eating in my typical right mid side.  There does not be any rhyme or reason for the pain.  I cannot pinpoint the foods or anything that seem to make it worse.

I want to be in denial, but am scared to be....Two resections in 2.5 years which were both filled with complications have me scared that this will just never end.

I did stop the remicade just before surgery as I was becoming allergic to it.  I was not in complete remission with it either and was on a double dose at 6 week intervals.  But I have stayed on the Imuran straight through and was so hopefull that staying on it would keep things under control.

Should I just ride this through for a bit and see if it will calm itself down?  Or should I put in that call to the GI??  Blood work is no indication for me, so I would end up needing a scope which has only been successful for me in the past 50% of the time.

What options for meds are left for me??  Cimzia and Tsybari are not approved for Crohn's in Canada yet as far as I am aware.  I have already failed Humira and am allergic to remicade.  What is next??  I am a little overwhelmed here!

Thanks for listening (reading)

Tanya

 

Posted 6/20/2011 8:27 PM (GMT 0)
I'm so sorry about this, Tanya. If it's back, it's probably mild so take drastic measures to try and get it under control fast.

Aside from imuran, have you thought about adding pentasa? You could try a quick round of pred and maybe some cholestyramine too. Get on some probiotics, if you're not already.

Otherwise, what are you doing in terms of diet? Try going gluten free, all natural, bland, you know, the typical flaring diet lots of CDers use. Or try one of the other diets, if you're desperate.

As you know, I've also been having "d" ever since surgery, but in my case, I think it's IBS and just surgery issues still. Could it be the same for you?
Posted 6/20/2011 8:29 PM (GMT 0)
Oh, in regards to the hysterectomy, my GYN said that hormones will also still affect the bowels because I left my ovaries in. Did you leave in your ovaries? Maybe this is hormonal as well.

Just offering better alternatives than the dreaded CD.

Take care.
Posted 6/21/2011 12:16 PM (GMT 0)
Hi Roni,
Pentasa and I do not get along very well.. It causes me great amounts of nausea!! Asacol does not work for me either..
I do take probiotics everyday...
I am really feeling this is a flare.
As you may remember the doc put me on a high fibre diet right from the start. I was doing amazing!! Best I had been in years. But oh so short lived it seems :( I have cut out the fruits and veggies once again, but have no relief. I typically do the low residue diet. Lived on it for years actually.
I would think it was from the surgery if I hadnt already gone to formed BM and fewer times.

It just may be hormonal for me...I do still have my ovaries. I will give it another day or so and see what happens.
That is one thing I hate about this disease, You just cannot tell for sure what is a flare and what isn't sometimes. It is all just a big guessing game.
Posted 6/21/2011 8:46 PM (GMT 0)
I've been eating a little more fibre too, but not high fibre. I'm still mostly sticking to the same sort of foods I ate before, just added more beef and a little more multi-grains and the odd handful of nuts/seeds.

I hope the flare gets under control quickly.
Posted 6/22/2011 10:23 AM (GMT 0)
Our GI's at the clinic we go to all feel Pentasa is of no use at all. What about getting an MRE? It's non-invasive, you have to fast and drink a litre drink of your choice with the contrast in it. Perhaps a low residue diet in the meantime.

Good Luck, hope things calm down.

Tom.  

Posted 6/25/2011 7:40 AM (GMT 0)
You have failed remicade, humira, asacol and pentasa.

A combination of Wellbutrin, LDN and SCD or any other typical diet without grains, starches, milk products could be helping you.

There are some people in here using Wellbutrin doing much better, there are others using LDN with the same results and doing a diet like the Gaps or the SCD could do the trick with these medicines.
Posted 6/25/2011 3:57 PM (GMT 0)
Remember its not always the Crohns. You could have SIBO or Cdiff and they can cause similar symptoms. I know how you feel, I am flaring again myself. My GI is trying to say its possibly Cdiff, but my symptoms don't make those of Cdiff, but I will do the test to please the doc. He did start me on Entocort though. I would stop this quickly and not let it get out of control. Hugs!
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