My story...

[Arby]

Hello, I'm a 51 ear old male from NJ. Here is my story (long)

Last February I was 250 lbs. Today I am 170 lbs. I first noticed symptoms last June. My regular Dr. thought it was Lyme Disease. I was tired, My ankles were swollen, etc.... Well, he was wrong.

The Diarrhea started in September as well as the weight loss. My regular Dr. sent me to a Gastroenterologist and I had my 1st Colonoscopy in mid-Sept 2009. I was diagnosed with Severe Ulceration Colitis. My weight continued to drop. By thanksgiving I was anemic and check myself into the hospital where I spent 7 days. My GI didn't want me to take Prednesone but the Dr. in the hospital put me on it. I was taking 80mg a day. While in the hospital I was given a pint of blood and Iron infusions. When I left the hospital I was 190 lbs.

The Prednesone was great. I still wasn't in remission but I was gaining weight. Before the prednesone I had no desire for food but i quickly went up to 210lbs. Then we started the tapering off.

I went on 2 months of Short Term Disability from work and even though I was sick as a dog. I had to go back February 1st.

At this point I'll list my meds:
Apriso,
6mp
Bentyl
Entocort
Probyotic

Nothing has worked. I'm on the toilet every 1 - 2 hours and Male Depends is my underwear.

I'll Continue... By late July I was anemic again. I went into to hospital for 9 days starting August 20th. I had 2 blood transfusions and nightly Iron drips. I had a colonoscopy and this time it was finally diagnosed with Crohn's. I also have a perianal fistula.

Since I've been active for over a year my Dr. is sending me to a Big Shot GI for a consultation. I just want to have 1 good day.

There's more to tell but this is enough for a 1st post.

 

[Dexky]

Welcome Arby! When do you get to see the big shot GI? Dusty, one of our resident nurses, has started a wiki article about keeping a diary of your symptoms. It could really come in handy when you do get your appt. Here's a link...

http://www.crohnsforum.com/wiki/Diary-Inclusions

Good luck!! I hope you get that day and many, many more!!

 

[lynx]

Hi, Hang in there I know it is rough as hell. I went pretty much through the same stuff first time around when I was diagnosed with UC. I lost close to 75 pounds in a manner of about 5 months..was stupid and didn't go to the doctor or hospital until i could not stop throwing up every hour...yeah ...kinda like a brick. Anyway...hang in there and Dexky is right on with the diary thing...it can help the doctor and you keep track of what your disease it up to. I hope you get relief soon.

 

[lseibert]

:bigwave: Arby,

Wow, you've had it rough I know what it's like to want just one good day! I hope the new doctor can help you with that. Welcome to the forum, it's a great place for information and the people are great. Hope you find what you're looking for here, I know that I have!

:hang: :rosette2:

:getwell::getwell:

 

[CDDad]

Welcome Arby,
You are having such a tough time. Reminds me a bit of me before my last surgery. I'm also in NJ and my "Big shot" GI was Dr Present at Mt Sinai. Who are you going to see? Like you, I was on the toilet every 1-2 hours, and the only drug that helped was Low dose codeine. You don't hear about it too much, and I guess it's old school, but Dr Present prescribed that.

Good luck to you for some relief soon.

 

[DustyKat]

Hi Arby and :welcome:

I'm glad you found your way here. I'm so sorry to hear that you are going through such a rough time and nothing is working for you. I hope the appointment with the big shot GI isn't too far away and he will have some new options for you to knock this on the head. Good luck, keep us posted and welcome aboard!

Take care,
Dusty

 

[Astra]

Hi Arby
and welcome

Like Joe, I was given Codeine Phosphate for the diarrhea, it does stop it.
Good luck with your new specialist, let us know how you get on
lotsa luv
Joan xxx

 

[rottengut91]

Hey Arby...Welcome
Sorry to hear you've had a hard time. Not unlike many here though. Glad you found your way to the forum. You'll find very insightful info. The folks here are wonderful and very supportive. Browse the forums. Hope you stick around. Good luck with the new doc. Hope you find the answers and relief you need. See you around.

 

[Arby]

Thank you all for such great support. My biggest concern is diet. I've been on the low residual diet and a High Fiber Diet. I've just read about a high fat diet for Crohn's as well as the benefits of Coconut Oil so I just started that.

I don't have a trigger food. It doesn't matter. I still have the diarrhea. I don't drink Alcohol, I've stayed away from spicy food. I just don't know what to eat!

Any all all input will be appreciated.

 

[FireflyX]

That's one hell of a weight drop. I was 85lbs at my worst, weight loss is the worst symptom in my opinion.

Has your doctor ever mentioned TNF Blockers? They do work quite well. I had Infliximab and was in remission almost instantly for over a year. I'm now on Humira which is helping with a lot of my symptoms.

Anyway hope you get well soon

 

[Beans]

Further to what FireflyX said, infliximab (also known as Remicade) is often used when nothing else works and is good at treating fistulae. It is an infusion drug and an immunosupressor. Also very expensive - thousands of dollars for each infusion. It might be something to ask your dr. about and consider.

I am looking at starting Imuran in the future but things to have settled down for m right now so we are waiting to see if activity starts back up again. If you take an immunosuppressor, some things you can do to increase your immune system are:

1. drink green tea 1-2 cups/day
2. take turmeric capsules

My naturopath mentioned the turmeric to me at our last session in the event I start Imuran.

I hope things turn around for you soon!

 

[DustyKat]

Have you tried a medication called Questran Lite? It is a powder that you mix with water, juice or highly liquid foods. It works by absorbing bile salts, perhaps you have some involvement of your terminal ileum and this may be causing your chronic diarrhoea??? Anyway might be worth a try.

Dusty.