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Does this seem like a reasonable course of action to you?

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Crohn's Disease
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Posted 4/15/2014 11:54 AM (GMT 0)
I'm not looking for treatment options, just want to know if my decision process seems sound (or in denial). 

Some of you know me some don't so here's a brief summary...followed by a long story (sorry).  Was dx'd 24 years ago when my TI ruptured.  Realize I had symptoms my whole life before that.  For 11 years post ER resection (1990-2001), I was pretty mild and was treated with only Pentasa and I was really low fibre no red meat diet.  Had little kick ups here and there, but no major pain just loose stools.  2001-flare up calmed by a 3 month course of prednisone and went back to similar diet and same Pentasa.  2001-2012-no major flare ups, but had 1 fistula and non-related surgeries.  Started eating a little more foods than I used to in 2004.  Late 2012 spent time in ER/IP, doc not really working with pred for me.  Pains on and off since that i did not used to have, random C when I am usually D without meds.  Some pains are Knock me to the ground, some days limited/no pain.  Joint pains come more strongly now.  Can not tolerate anything with fibre again.  Have not been my old self since.

So this last round of budesonide did not start to do anything until I got 1.5 months in and then weeks later it was taper time and not so good again.  Saw GI yesterday.  Does not think a scope will show anything and I am scheduled for a SBFT.  He gave me prednisone...somewhat unwillingly.  He says that if we do not see improvement with this round of pred, we have to talk 6mp or Humira (he even gave me a talking humira pen to review).  I forgot to ask about the pill cam - brain shut off yesterday.

My thoughts...I am going through the worst emotional & stressful time of my life starting right after my 2012 admit.  I also appear to be changing hormonally and starting "the change" (haha makes you sound like a werewolf).  I am having high blood pressure and have a family history of skin type cancers.  I am thinking that before I go the 6mp/Humira option, I want to ride out all my other bodily changes and get my swollen legs under control (maybe this flare up is everything else in my body changing and my guts are trying to adjust - you know how we feel more lousy when we women have our period???)  I can live with changing my diet to a more strict regime again & I am willing to live with some of the new pain....at least for some more time to see if I can avoid the bigger meds for longer.  Does that sound like a rational decision?

Posted 4/15/2014 1:04 PM (GMT 0)
Hi Habs,

I think your reasoning is sound, and ideally that would be a good plan. I think the results of the SBFT will be crucial in determining how you proceed, as well as whether or not the pred has any benefit for you.

I don't know if your inflammatory markers (ESR,CRP) are useful indicators for you. If they are, and they are high (as well as platelet count) then starting on a biologic right away would be sensible. They are the best drugs we have as far as altering disease course, and they can work relatively quickly. It isn't absolutely necessary to add 6mp.

You shouldn't settle for living with that sort of pain. It is amazing what we get used to living with, and how we accommodate the pain and dysfunction.... like survivors of a long battle. You deserve to be healthy, and at peace. And, you should be able to eat normally.

Yeah the stress would not be helping, nor the hormonal changes (there are some good herbal preparations).

Hope things settle for you, and that you get to focus on yourself first and foremost.

Good luck with everything.
Posted 4/15/2014 2:57 PM (GMT 0)
If you are able to control things with diet and supplements, I think that is completely reasonable. I would keep a close eye on things and if you are not getting better, a biologic is a good option. You definitely don't want to end up with another rupture so if you need the medication, I wouldnt hesitate on that either.

Good luck!
Posted 4/15/2014 3:47 PM (GMT 0)
I don't know if you can make any concrete decisions until you have more small bowel tests done to see exactly how things are, remember me? I had no sensations (tenesmus feelings) and yet my rectum is apparently at it's worst based on my last colonoscopy results, basically you can't decide based solely on how you're feeling, you should probably find out for sure what degree of disease activity you're dealing with first (just my opinion). Biologics can be scary, if you have family history of any kind of cancers you need to make sure your GI knows, although they do monitor patients very closely (via blood work) while on biologics there's always an increased risk of nasty side effects (worse than pred side effects in the sense that it weakens the immune system and can cause cancers to appear, is my understanding if there is a family history there).

I hope you find relief soon, I feel for you because I know how life stresses alone can take it's toll let alone dealing with CD.
Posted 4/15/2014 11:58 PM (GMT 0)
You didn't state what dosage of prednisone the GI prescribed. A word of caution regarding your hypertension and prednisone. Higher doses of prednisone can drive BP up. I learned the hard way. Ended up in the ER with hypertensive crisis. That said, monitor your BP carefully while on the BP.

Also, what are you doing to address the high BP and swollen legs? Those two can go together. The doctor needs to get to the bottom of the BP and swelling. A reduction in hormones when one enters menopause can cause fluid retention and therefore leg swelling. That same fluid retention can cause high blood pressure. There are other diseases that can cause high BP and fluid retention. Some of those can be made worse by some CD meds. Just saying I think you need to address this too...
Posted 4/16/2014 1:13 AM (GMT 0)
Hi Habs,
I think I worry about similar things and I certainly don't have the answers. I do think that going on results from the tests like the SBFT makes more sense than deciding based on symptoms. Given that you have had a resection, I think you want to make sure you first try the dissolvable capsule if you decide to do the pill cam test. I'm sorry life has been stressful for you...it does make figuring everything out so much harder.
Posted 4/16/2014 11:39 AM (GMT 0)
Thanks for all  the input folks!

Ides...I am addressing the hi BP and swollen legs with my GP (love that man!).  I see him in a couple of weeks.  He is rulling out anything else he can think of before faulting to the water pill.  I really want to get that under control before I start moving into bigger meds.

Oh...and this time we are doing 40mg for 2 weeks, then 7 days at 35, tapering by 5mg each week

And...I am going ot be good about waiting for the SBFT results.  All the other test show no major inflammation so we just don't know why I am still ahving more pain than I used to (the only change I know that is not organic is my change in eating a little more roughage)....I am just not a Positive Polly about finding anything with one more test.  But I will see.  If it shows nothing more than the scopes CTs and labs have shown (labs showed only slight increases in markers), then I am not going the biologic route.  If it shows more...then I will consider the option more.

I just want to really get all the other medical things stabilized first.  I never was worried about the cancer risk on the bigger meds--my worry was more why start them if I am not bad off and run out of options if things got worse.  I must admit---the cancer worry is in my head more now especially after talking to my sister about her nasty mess with cancer not med related.

Thanks for listening folks!!!  Got my paper towel roll ready to go with me to the SBFT to gag down that gunk on the 28th!

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