About me

[BELIEVER]

Well here goes....

I am 25, married for 6 years to my soulmate, whom with I have the most beautiful 2 year old son.

It all started in Sep 08. I started having the "D". It just wouldn't stop. Started the normal anti-diuretics and it didn't do anything. No biggie, just some bug...thought it would pass. Then I started to lose weight....rapidly. And then the vomiting started. So by 15 Sep 08, I went from 185 lbs to 165 lbs. Go to the ER. They take some blood, stool samples and X-ray. Nothing's there. Pump some fluids in me and send me home with a sheet telling me all the reasons I could have diarrhea and told to try the BRAT diet. GO home...try the brat diet, nothing is working...back to ER this time at 155 lbs. Dr.'s say its stress....send me home after the normal array of blood and stool samples. Get appointment with Family doc. He pushes on my stomach...no pain and I say this diarrhea thing happened before and cleared up with some anti-biotic....get Ammoxcacillen and Flagyl....go home and get immediately worse...back to ER

Dr. says I think you might have Celiac disease refers me to GI.

Oct 08--See GI for 5 minutes get immediately admitted to hospital for upper/lower scoping. In hospital for a week, GI says Crohn's Disease...and I'm 141 lbs now. Go home on 40mg Prednisone and eat like a rock star trying to put some weight back on...(still having "D" 5-10 times a day!!)

Nov 08...GI starts Imuran 50mg/day dose and lowers Pred to 30. Still having "D" 5-10 times a day then something happens before T-Day. Start Vomiting again and "D" doesn't end. Back to Hospital

Dec 08...GI starts Remicade and I feel great! Quickly switches to Humira and ups Imuran to 75mg/lowers Pred to 20mg/day. Out of hospital 2 weeks and back in (D won't stop and keep losing weight down to 120 lbs) Get out 24 Dec 08 on nighttime TPN, Entocort, continue w/ Humira.

Jan 08...Full time TPN, 100mg injectible cortisone some weight gain 130lbs, and Humira. (STILL HAVING THE "D") Ended up in the ER for vomiting and pain after taking meds on empty stomach b/c GI put me on bowel rest for a few days. GI STOPS Imuran ??

Today...Full time TPN, 100mg injectable cortisone, Entocort, Humira 138lbs

That's kinda it...still confused about it all. Got an appointment with an IBD gooroo on Monday at Oshner's..We will see what he says. (I come off steroids then too)

I am still unsure if this is even Crohn's (IT isn't denial, but no one in family has it, never any pain, bleeding, mucus, etc, our issues before?!) The story I referenced earlier was travelers diarrhea (came back from England) and a night of bad sushi! BAMA and Sushi are 2 words that don't go together!!

But I know either way God has a plan for me...I love this site...you guys are awesome. Everyone knows everyone.....Still looking for advice on foods though! I CANNOT TOLERATE SUGAR/High Fructose Corn syrup AT ALL!!! Keeps me running for the toilet more than I do now. Steroids have it down to 3-4 loose/watery stools a day.

I am still a newby when you consider I have really only been in treatment since Nov 08. How long does the "D" last?? What is a flare? The things I ponder on......ANY HELP. Plan on starting the SCD when I have more weight on...can't do it now without losing to much weight...I attempted to start it and lost 5lbs....

Look forward to meeting/talking w/ you all! God Bless!

 

[danman]

your in a flare now, untill you go into remission and feel well.

How long does D last, who knows

Welcome to the site, hope we can help you with all this.

 

[Sojourn]

How long does the "D" last?? What is a flare?

That's something you may get a lot of different responses to. I've never really understood what a flare was in my case. I got progressively worse from the time I was diagnosed. Even though I had a couple of years where I could get by pretty well using Immodium and the low residue diet, I could always feel a little pain in my right side and a lump that slowly grew larger. As the lump and pain grew, which was an abscess which birthed a fistula, I continued to get worse. So for me it was progressive.

Even after having the abscess, fistula, and part of my colon removed, now a year and a half later I can feel a very slight pain in that lower right quadrant if I press down real hard. It's not a lump yet, but that's how it started so I'm concerned it may be rearing up again.

In any event, welcome to the forum. It's really a mystery how this disease effects people differently. You'll find from reading this forum that there is no standard diet or method of relief that works for everyone. It seems, though, that those who are persistent ultimately find some method that makes life livable. And sometimes surgeries or additional medications are needed along the road.

 

[BELIEVER]

Thank guys..good to meet you...Since I've been stuck at the house for weeks, this has really been my only mode of anything...Please keep the posts coming....Really, coming to the forum and getting support and advice is the best part of my day!

 

[CD68]

When I switched from the oncology gastro to the IBD gastro the whole diagnostic process started all over again even though the first gastro was sure that it was Crohn's. I thought that I would show up with all my files and films and the new Gastro would agree, hook me up with some good meds, and in no time have me farting glitter and pooping rainbows.

Instead, he used that first meeting to plan out we needed to do in order to have to rule out rare diseases, have more certainty in the Crohn's diagnosis and ascertain the extent to which it had progressed.

He ordered up even more blood tests on top of the ones that I already had. He requested to see the original pathology slides the original gastro did to re evaluate the biopsies himself, sent off a blood sample to a company out in California called Prometheus which is doing cutting edge diagnostics for Crohn's. This is the only company in the US that does these tests. My insurance considered them out of network and I got charged the full amount. :ybatty:

On my next visit we did small bowel endoscopy...the pill cam. That was exciting. It wasn't until he got the results of all these tests together, the third visit, that he gave me a diagnosis. He just wanted to be sure.

 

[daisy_dueller]

First of all...CD: LOL to farting glitter and pooping rainbows!! Bahahaha!

Second of all...welcome Believer!! I, too am a newbie, and am loving these boards...lots of personality here!!

I hope you continue on a good path...seems you are doing a bit better
To answer your D question: I have had D for...EVER. I don't think I can remember the last time it was solid...so it's different for everyone. For me, it's just a fact of life now. Even when I'm not in a flare. Everything else can be perfectly fine, but the D doesn't go away. Hopefully it does for you

Is your TPN temporary?? Is that your only source of nutrition right now?? Just curious...not sure how they work??