RE: Re: Holly

[Guest guest]

Holly, and everyone: I have only had time to skim the posts in question due

to a heavy work schedule and yet another headache--but I need to chime in

and just say, I think this part of what you say is very right on. Everyone

has things that work for them, and not others. Using the example of dosing,

I never knew to split doses at all, and got down to 1.25 mg. a day--and then

went hyper again, which may have been caused by going too far down when I

should really have taken 1.25 twice a day, who knows? But I did get good

results to that point, on once a day MMI dosing. Now I take it in two doses,

and notice no fluctuation of symptoms during any given 24 hour period. For

me, if I took it 3 times a day I'd risk forgetting 1/3 of my dose every day.

I am simply too concentrated on work, when I'm working, and have not a

second to think of a personal thing like taking a pill.

Moreover, I agree that we should say what works as a FOR ME this works kind

of thing, not a YOU SHOULD or for that matter, shouldn't, do something. I

know that there are probably people in this group who think 'if someone

doesn't get on the nutritional bandwagon that I'm on, they will never get

better', for instance. But that may not be true. Hey, there are even people

out there in the real world happy with their RAI results, right?

So, I agree we should be calm, and that stressing over the disease could

have as much adverse affect on any of us as forgetting to take our meds...or

listening to a wacko doctor. We are here to help each other, and I think

most of the time we do a darn good job of it, too!

Best to everyone, and Alyssa, I do think if everyone didn't remember the

last time you went hyper, nobody would have been so alarmed at your two

days. Hopefully they will not stress your body, and you will be able to get

off the rollercoaster. It always amazes me, when someone responds really

fast to the meds--for me, coming up on 9 years on tapazole, I get a bit

jealous.

Terry

>

> Reply-To: graves_support

> Date: Wed, 4 Dec 2002 14:45:18 -0500

> To: " graves_support graves_support >

> Subject: RE: Re: LABS BACK/RAI BAIT - To Holly and all

>

> There have been several issues come up lately where I felt like the advice

> given out, not just by you, but by others, has been so " you have to do this

> or really bad things are going to happen " , when it's just not true. It

> scares newcomers. It makes people think they HAVE to do something that

> might not really be necessary for them. For example, the adamancy about

> splitting doses. I can see where it helps some people to split their tap or

> MMI, but nothing I've read says it's necessary, and I for one found that I

> do better taking it all at night. If it works for you, great, but that

> doesn't mean everyone has to do it. It's wrong to say that someone is not

> going to heal if they don't split their PTU doses into three a day. I agree

> and so does the medical community, that PTU needs to be taken every 12

> hours, but to tell someone they won't heal if they don't take it every 8

> hours is causing undo stress on some people. Look at all the frantic posts

> where people are asking how to split these odd doses and people waking at 3

> in the morning to take their third dose.....I'm sorry, that's not good for

> anyone. It's never good to interrupt your sleep. You can't HEAL without

> good sleep.

>

> Sometimes obsessing about the disease we have just enables it to continue,

> and I feel like sometimes this group, including me, enables other people to

> obsess about this disease.

[Guest guest]

Thanks for the reply Holly! Have you had an obstruction or resection before? How long have you been diagnosed with CD? I am hoping that just because my husband had a partial obstruction that his GI won't suggest surgery! Thanks again, Heidi

To: BTVC-SCD From: spookyhurst@...Date: Mon, 31 Aug 2009 21:25:50 +0000Subject: Re: Holly

Hi Heidi,Two weeks ago, I had too much fruit in one day. The cherry caflouti probably was the main problem. I started having pain "contractions" a couple hours after eating. Luckily, I was able to hold out and not go to the ER. The pain finally subsided after vomiting in the middle of the night.The next day, I only drank liquids. I also had some prednisone pills left over and did a prednisone "burst" (40 mg for 2 days, 30 mg for 2, 20 mg for 2 days, and 10 mg for 2 days). Then I added in some yogurt on the 2nd day, and the 3rd day I also had 1 egg. Day 4 & 5 I had 2 eggs. Then I started eating squash pie filling (I ran the squash through a food mill so that it was pure mush), cheesecake, cheese, and an almond butter brownie. I just added back zucchini, meat, and green beans a couple days ago.I'd say I'm probably back to normal now, but I'm only going to eat stage 1 & 2 foods for awhile. I see my surgeon this afternoon (appointment made before the obstruction), so I'll find out more then. I anticipate that I'll be having a resection within the next couple months though.I hope your husband gets to feeling better soon! It's no fun dealing with this sort of thing.HollyCrohn'sSCD 12/01/08 >> > Hi Holly,> > > I hope you don't mind me asking but did your partial obstruction require hospitalization and what follow up care are you doing? We have an appointment with my DH's GI thursday and want to be prepared. Thank you, Heidi>

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