Re: Re: Irene/crohn's

[Guest guest]

Hi Barbara, thanks! almost the same age...I was 17, when I started getting sick. I have it

in the mild form, it causes very severe pain. Was told recently, sI houldn't been having any

pain at all...it's not normal!

They say AI for me was caused from the medications. I have Arthritis (pain in most

(of my finger joints), which is related to my Crohn's and flare-ups. I only spent a weekend

in hospital last year because of it. In the same month, I was diagnosed with Raynaud's

Disease and Drug Induced Lupus.

I've never tried probiotics. The only natural I take, is the Multivitamins. I try everyday

to avoid stress, sometimes, stress drags me in...lol! That's why I decided, to take the day

as it comes and if a stressful situation arises...I stay clear of it...I don't let people anymore

drag me into it...

like for ex: in hospital I was admitted for a Bowel Obstruction...GI was trying to make me

admit I was anorexic/bulimic, which is false, just to make him feel better, I turn around

and his students were there and I say...if you think I'm Anorexic/Bulimic you're so totally

wrong...he got up and left and never came back for the duration of my stay....

Later that night, one of the students...apologized to me for his behavior and attitude

problem

IrenePF 03/07 Raynaud's Disease 09/07Crohn's Disease 03/95 Asthma 02/92

Re: Irene/crohn's

Hi Irene, yes, you saw correctly. I have had Crohn's for many years,but fortunately for me it's one of the milder AI problems that I have.I've had some terrible times with it though, don't get me wrong.Spent one whole summer at home because of it.I think what is working for me is the probiotics that I take. I quittaking prednisone 2-1/2 years ago, along with all the other meds theDocs want me to take, and only use natural supplements now. Duringperiods of stress I still have a hard time of it, but not nearly asbad as it used to be. I keep searching for healthy alternatives to thetoxic drugs they want us to use, and the probiotics seem to be thebest thing yet for my Crohn's.We don't know what caused my AI diseases, but there is a strongindication that it is familial. I've been sick since I was 15. Over 32years now of dealing with this junk!!! I hope that this is a good day for you and you're

getting some relieffrom all the pain. My prayers are with you!Hugs!Babs in Texas> > > >> > > > Hi All,> > > >> > > > Sorry I haven't posted in a few days again, but I am back from> > > > Birmingham. Still don't know anything definite other than the> > > > diagnosis I already have of UIP. First when I got there, they did> > > > ABGs (OMG!! It hurt so bad!! I had it done once before and Ididn't> > > > even feel it, but not this time. She had to pry (her words)). Then> > > > I had to do PFTs, which showed 57% lung function, compared to the> > 68%> > > > I had in December. Next, I

visited with the doc. Actually there> > > > were 2 docs. The first one was a fellow of Dr. de Andrade (who was> > > > the Assistant Professor). His name was Dr. , very nice guy.> > > > He took down all my history and said he thinks I may havepulmonary> > > > hypertension (which would explain the rapid heart rate). Hedid exam> > > > and then goes to discuss with Dr. de Andrade, who comes backin and> > > > again, very nice guy. He explains that it is very rare in a woman> > > > under the age of 50 to have pulmonary fibrosis and since Ihave been> > > > sick for 6 years already, even more rare, not unheard of, justrare.> > > > So I am a model case!! Anyhoo, due to this fact that I AM so rare,> > > > he thinks there is an underlying disease causing the PF, so I get>

> > > blood work (10 tubes of blood) for various autoimmune diseases. He> > > > is leaning towards Sjogren's or scleroderma (mostlyscleroderma for> > > > which also there is no cure). Dr.. did a heart exam and> looked> > > > at the veins in my neck before talking to Dr. de Andrade whodecided> > > > I needed another chest CT (my last one was in February 2008), so I> > > > had that done (without contrast thank God!!) and also that Ineeded> > > > an ultrasound of my heart to check for blood flow to the heart and> > > > for any blockages to the valves. All in all, he said if Idon't hear> > > > from them in a week, to call them to get the results. Other than> > > > that, he didn't change any of my medications, except todecrease the> > > > prednisone even

further to 10 mg a day. He said he wants me to get> > > > off the prednisone completely, so NO MORE STEROIDS!! YEAH!!!! I> > > > told him I had gained 20 pounds since being on them starting in> > > > January, and told him I have moon faces and he agreed.. Hesaid they> > > > want me lean and healthy and I did not need to be on that forsure.> > > > Any weight gain is out of the question, he said. He told me I have> > > > to keep moving. He told me to eat lean proteins, fruits, andveggies> > > > and no snacks. He PROMISED me the weight will come off. He said he> > > > expects me to lose 10 pounds rather quickly. I sure hope he is> > > > right, because I am miserable and I told him so, too!! He saidthere> > > > are no real medications to treat PF, and I knew that, but he said>

> > > when I come back, I can decide either to go with the Imuran and N-> > > > Acetyl-Cysteine (NAC), which is all the best they know at thispoint> > > > to give patients with PF, or I can try an experimental drug> > (clinical> > > > trial), which I don't know what the side effects will be, but I am> > > > kinda leaning towards doing anyway, because I feel like even if it> > > > doesn't help me, it may help some other person with this stupid> > > > disease on down the road and it would be worth it. As for lung> > > > transplant, I don't yet qualify because my sats are not low enough> > > > and I am not on oxygen yet. Note that I said "YET." He saidthe key> > > > to prolonging oxygen use as long as possible is to stay as active> > and> > > > healthy as

possible and that is what I am going to try and do.> > > > (my grandson) is here with me this summer, and he really> > > > helps to keep me motivated and I think I need that right now. Also> > > > the docs were really glad to know that I am in pulmonary rehab and> > > > that I am going to stay in the Wellness Program when I getdone with> > > > the rehab program. All in all, even though I did get some not so> > > > good news, I feel like I got some good news, also, so until next> > week> > > > or whenever I get the results, I am just trying to keep my self in> > > > exercise and health mode the best I can and keep going.> > > >> > > > So that was my Birmingham visit. My parents went with me and we> > > > really had a nice trip. I don't know what I would do

without them.> > > > They have been my rock through all of this. Thank God for my Mama> > > > and Daddy!!> > > >> > > > I hope you all have a great week and now that I am back I hopeto be> > > > able to keep up with posts better and write more than I havebeen. I> > > > do reads all the posts and think of each and every one of you> > > > everyday. You are my air family and you are my rock, as well.Don't> > > > know what I would do without you guys, either!! I love you all!!> > > >> > > > Have a great day!!> > > >> > > > Caro> > > >> > >> >> > > > > > ____________ _________ _________ _________ _________ _________ _> Yahoo! Canada Toolbar: Search from anywhere on the

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