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Posted 8/10/2011 10:21 PM (GMT 0)
Hi guys,

Finally got back in touch with my family doc today as I have been having so much diarrhea and feeling so weak and sick all the time.  Just taking a shower will leave me breathless and tired.  I have zero energy to do hardly anything.

He thinks that all my diarrhea is causing my electrolites to be low and that is causing my weakness.   Yesterday, I probably went like 15 times, and by 2 pm when he called today I had already gone 7 times. He wants me to take 1/2 Immodium every morning to try to slow the diarrhea down.  I told him 1 Immodium will stop my diarrhea, but can sometimes have rebound effects, so we will try 1/2 tab instead.  Wants me to do some follow up blood tests to check my levels.  And he is keeping me out of work for another week.  So I am out until 8/26/11 at this point and that I am to call him during that week and let him know how I am feeling, and if more time off is needed he will give it to me.  My GI is out untill 8-29-11 so I was glad to be able to talk to one of my docs again. 

Can I say I sure do miss my constipation?!?  All my tests point to no active Crohns, but this sure does feel like Crohns, cramps, diarrhea, yuck gut, you name it.  But....I did hear my family doc say something about some inflammation.  So its possible that is whats going on.  I just hate that when you feel this bad, then they try to say its not Crohns.  I would bet my bottom dollar its my Crohns.  It sure and the heck isn't IBS.  Although I do have that also, it never lasts more than 3-4 days.  This has been going on over a month.

So thats the latest on me.  I sure hope I get feeling better soon, this is getting really old.  Hugs all!

Posted 8/11/2011 1:12 AM (GMT 0)
Hope you can get the D slowed down , how's your bloodwork doing I am still getting my B-12 needle once a month and it has made a big difference for me . Glad your getting some time to rest .Take care
Posted 8/11/2011 2:41 AM (GMT 0)
Hi Gail! I am glad to hear from you. I've been checking the boards wondering how you are faring. I am not so glad to hear you are having so much D.

I am glad your family doc will work with you. I hope you get the D under control soon. I can see how that would upset your electrolyte balance and make you really tired. Instead of water, perhaps you can try drinking just pedialyte? I'd say gatorade, but my husband has trouble with all the sugar in gatorade. Or perhaps one of those vitamin drinks with stevia (I think power water or vitamin water is one of them).

Are you still on steroids? Continuing your probiotic regimen? Have you tried any of the liquid diets - ensure or boost to get some energy? My husband does well on boost glucose control (even though it has splenda). He's not good on ensure because it has so much sugar - it gives him gas and makes his cramping and D worse.

((Hugs)). I hope you get better soon Gail. This has been a really rough patch.

PV
Posted 8/11/2011 3:28 AM (GMT 0)
Nanners ,you sound anemic . Has doc checked that yet ? Hope you feel better soon .
Posted 8/11/2011 3:29 AM (GMT 0)
Boo. I find It pretty much goes like when im constipated and cant pass I wish for d, and when I poop myself I wish for constipation. ha. Hope you feel better soon : )
Posted 8/11/2011 6:59 AM (GMT 0)
Hi Gail,
Big Hugs to you. Can you do gator aid? It may help you because of
so much D.

TBW
Posted 8/11/2011 11:04 AM (GMT 0)
Hi Gail

You wright that all test pionts to that it´s not your crohn that´s active. What have they checked? My own blood tests dosen´t allways show when my crohn is active for example are my crp selldom high just get a slightly rased platletlevel and my hemoglobinlevel decreases. But when they do a colonoskopy there are inflamation.

If your feeling that bad I also think tsitodawg is right, some stronger meds probably is the ting you need.
Take care

"abroad"
Posted 8/11/2011 11:22 AM (GMT 0)

Gail...hoping you get some energy back soon.  If the imodium causes back lash for you, is it possible for them to try cholestyramine short term?  Our symptoms have sounded so similar in the past except for you as C and me as D.  I am just wondering if now you have come over to the dark side :-)

Cholestyramine has been wonderous for me that is the only reason I recommend it.  You might just need to get past this patch and not need it long term like I do.  I don't find it overly backs me up.

Hoping for relief soon

Posted 8/11/2011 12:45 PM (GMT 0)
Gail, Habs is right about the Questran. As you know I take it VERY occasionally, but it does sort of do a reset on my system. Like I have way more bile salts than usually for some reason and this brings me back to what I am used to handling. BUT, I would not start with a full dose if you did try it. I would work your way up.

I'm so sorry you aren't making more strides to feel better, but at least your doctor has given you some more time off so you can relax a bit and not stress about that.
Posted 8/11/2011 2:07 PM (GMT 0)
Hi guys,

Per my docs all my tests look pretty good, if not on the low normal side. I am borderline anemic, but not enough for an iron infusion. The Immodium stops the d, although this morning I have already gone twice, I am going to wait till I go 3 times before I take the next dose as I don't know why, but I want some of it out at least. But when the d is stopped I do feel somewhat better, so that is a good thing.

Stronger meds are not needed at this point. I was steroids before the hospitalization and put on them twice while in the hospital and I did not respond to them so not thinking its CD right now. More than likely just from the adhesions and scar tissue. I think I have just gotten so run down that I am in a diarrhea stage, and need to work myself out of it.

I do not have CDiff, been tested twice and both times its negative. Plus I am not passing large amounts of mucous nor does it have a stronge odor. Although doc wants to do another stool test to make sure I don't have any other bugs. He will run more blood tests to make sure my potassium is not getting low again from so much d.


Hopefully, I will start feeling better soon. I can say it is getting pretty old. Hugs!
Posted 8/11/2011 6:59 PM (GMT 0)
The thing that stinks is that with adhesions/scar tissue, they really can't do much to help.

I'm in the same boat, my body loves to create scar tissue and it's always an issue for me. My crohn's hasn't been active the last 3 scopes I've had, yet I've had too many obstructions to count. (luckily they have been partial obstructions and not complete obstructions)

After having a 4 partial obstructions in about 8 months, my surgeon decided to do surgery and try to clear out some scar tissue. Inevitably though, this surgery will create more scar tissue and I'll require surgery again. It's a vicious cycle.

At least if it's crohn's causing it, they can put you on steriods to get rid of the obstruction. I sometimes wish it was just inflammation so they could treat with meds instead of surgery.
Posted 8/11/2011 7:25 PM (GMT 0)
I wouldn't take the bet on whether you are having a mild flare....sure sounds like it.  Hope you recover quickly.
Posted 8/12/2011 6:48 PM (GMT 0)
Nanners, I am taking cholestyramine & just started small 1/2 tab doses of imodium as well. The imodium helps with bowel spasms, but when it wears off...wow, it can even be worse. I was finding that the cholestyramine wasn't helping as much with the spasms, even though it does bulk up the stool a bit.

You are day 2 on imodium? How are you finding it?
Posted 8/13/2011 2:27 PM (GMT 0)
Hope you feel better soon Gail
(((((((((hugs))))))))

Doreen
Posted 8/13/2011 2:28 PM (GMT 0)
Actually today is day 3 and I have not taken it yet as I have gone twice this morning, but not much coming out. Sometimes Immodium can cause rebound symptoms for me, and I think that may be happening. If I have to take it later I will, but for now I am going to hold off. Feeling slightly better, but I think thats becuz I am not going. I have a feeling it will be back:( Hugs and thanks for asking about me!
Posted 8/14/2011 3:08 AM (GMT 0)
(((((((((((((((((Gail)))))))))))))))))))))))
Posted 8/14/2011 2:07 PM (GMT 0)
Thanks Sniper for the hugs, they are greatly appreciated. I am having more rebound problems with the Immodium, so not taking it today. I don't want to go the other way, as I see more problems right now from the constipation, especially when I know I have alot of adhesions and scar tissue.

Stronger meds are not going to do anything for me, because like Becky my problems are LOTS of scar tissue and adhesions from the multiple abdominal surgeries I have had. Doc will not let me use Remicade as it causes rapid healing and would just create more scar tissue in me. Sucks having the stricturing type of Crohns.

Cholesteramine (sp?) I have tried and it made me feel worse. So that is out for me too. But thanks so much for the support guys!
Posted 8/14/2011 8:54 PM (GMT 0)
Nanners, is your CD generally in one location and mostly acute when it's active?
Posted 8/14/2011 10:39 PM (GMT 0)
Roni it was first found in the TI/Cecum area, but that has been removed. Usually my flares are really easy to control. Usually takes no more than some Pred to quiet it back down. But that didn't work this time. I am having the diarrhea and some nausea this time. I am nauseous right now, but I think thats becuz of the Immodium I have been taking. Got me backed up some and getting alot of backwash feelings. I felt okay yesterday and earlier this morning, but back to feeling yucky again. I give!! GI is out until the 29th and family doc is out until a week from tomorrow. Hopefully tomorrow will be a better day. Hugs!
Posted 8/14/2011 11:46 PM (GMT 0)
Imodium probably works better for ppl who don't have CD or bowel spasms. I know what you mean, symptoms can be different from one day to the next.

Before my resection in Feb., I had "d", but if I took anything to bulk it up or stop it, I had horrible obstructions, so be careful with the imodium, as the nausea could be a sign. You already know that, I'm sure.

I hope you feel better soon, and I hope your GI figures out how to fix this in the least invasive way!
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