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>

Windows Live: Keep your friends up to date with what you do online. Find out more.

[Guest guest]

Hi Holly,

I really appreciate your information. We have been floating along on a bubble of "my DH has crohns but it is mild" and wham, this partial obstruction hit and I guess I am in a bit of a panic with the thought of Remicade/Humira and the potential for surgery. I was really pinning my hopes on this diet taking care of the disease and being able to manage it with the diet. I really think this flare was caused from stress and the 3 capsules of L-acidophilus at once but I am sure the GI won't really care about that. Did I see in a previous post that you live in Oregon? We are thinking of checking out the two SCD GI's on the SCD list in the Portland area and wondered if you were familiar with either. Thanks again for your info. Heidi

To: BTVC-SCD From: spookyhurst@...Date: Tue, 1 Sep 2009 01:18:54 +0000Subject: Re: Holly

Hi Heidi,I was diagnosed with crohn's in 1996, although I had been sick for a couple of years before that. The only surgery I've had is gallbladder removal in 2003. I've had multiple obstructions though. The first one that I was hospitalized for was in 2002. Each time, they just loaded me up with pain meds and anti-nausea meds for a day or 2, as well as prednisone. Typically, I would only be in the hospital for 3 or 4 days. A couple of years ago, I had a complete obstruction and they wanted to do surgery. I chose not to, and it resolved itself pretty quickly. I went to the hospital on Wednesday evening (the symptoms had started that morning), and was released Saturday morning. I'm really glad I didn't do surgery then, since I hadn't yet found SCD.I just got back from my surgeon, and we agreed that I will have my first resection. The ileocecal valve is scarred so bad that it's only 7mm wide. Since you can't heal scar tissue, both the surgeon and I agree that it's best to take it out before it causes a major problem. The rest of my intestines appear to be in good shape, so they won't have to take much out. Plus, the surgeon said that I could quit taking Humira after the surgery. Hurray!As far as your husband goes, it depends on whether his narrow spot is inflammation or scar tissue. If it's "just" inflammation, that can be fixed without surgery. SCD and/or meds can heal it. If it's scar tissue, then surgery would be something you would need to think about.I decided I'd rather have the surgery when I'm doing relatively well rather than wait and potentially need an emergency resection when I'm really sick. I'm hopeful that SCD will allow me to heal and never need a second one!I hope your husband won't need surgery though!HollyCrohn'sSCD 12/01/08 >> > 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> >

Hotmail® is up to 70% faster. Now good news travels really fast. Try it now.