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Crohn's Disease Forum

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Joined
Nov 12, 2006
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Hi all, I am new here and you will all have to bear w/ me. A dear friend led me here and I hope i can learn and maybe help some others out -

i have had Crohn's 25+ years. Was told I was crazy by my 1st Dr. was put on Valium. Later on got really sick weighed in at 146 lbs. I am 6'4". I was so skinny I had to run around in the shower to get wet. Anyway, I had 3" of duodenum removed. Felt like a million dollars before taxes for 5 years.

Crohn's came back - had another op - gastrojejunostomy. [That's a $50 word]. All that that op did was I could eat again. Trips to BR and pain and nausea came back immediately.

Have been on prednisone for years and years - trying Pentasa and ENtocort now.

I'll stop now b4 I put everyone to sleep.
 
Hi Harry!!!! :)

Now you know I am SO glad to see you joined too! I just found this spot a few days ago and thought of you immediately! You have so much to share my friend!! That and your sense of humor to go with it! :lol:

Thanks for joining Harry....ya know I love ya~You've always been there for me.

Hugs~Nancy
 
Hey Harry, welcome to the forum. It is a great place with great people. I hope you feel better soon.
 
Thanks for the welcome Jeff. I think I'll really enjoy this forum. Been w/ Mr. Crohn's for 25 - 35 years . I lose count. Anyway I'll feel better tomorrow or the next day etc.
My life is a yo-yo. Good one day not so good the next - but any day I get out of bed breathing - that's pretty good. eh?
 
Hi Harry,

thank you for the entertaining posts and welcome to the forum. I am glad your old friend (and our new friend) brought you here.

Are you currently on any meds?
 
Hello harryjr,
I'm new to this board also & have already learned alot~

Hope you can get off that horrid prednisone & feel better soon.

Joy
 
WELCOME ABOARD ... I am sure that you will find the awnsers that you are looking for here & I will pray for you that you will find the help that your looking for too.
 
lol @ running around in the shower to get wet. I've been there!! Welcome to the forum and hope you get as much out of it as I have. Take Care
 
Hi my meds ? Have a few minutes?

Here goes: Advair: prilosec: Entocort: Pentasa: wellbutrin: rhinocort: lomotil: tigan: klonopin: whew!

Every time I sneeze I think I cure someone.
 
Aloha Harry & welcome to the family! I'm liking you a lot already. Hope you'll give us all a chance to spend plenty of time with you.
 
Feel like UGGGGGHHHHHHHHHHHHHH

Hi fellow members and meberesses,

I guess I didnt impress anyone on the C forum eh? God I'm miseraable.
Was in the BR alllllll night Saturday. Couldn't get away from it.

This morning I have awakened several times soaking wet. Argggggggggggggggggggggg

What is going on? This is the Holidays and I'm supposed to be happy and jolly and healthy?
Hah . S eems the ole system goes wonky every holiday or is it my imagination?

Ate sensiibly 2 days ago. ---------- oatmeal and chix soup. Buk buk bugawk!

Gotta find my sense of humor quick. I know it's her somewhere.
Thanks for holding my hand.


If you find a needle in a haystack ... don't tell anyone.


Bad day here. Head feels like it is going to crack open. This makes my tummy do the polka. Good thing is I havent been to the BR alot today. Didn't eat any solids yesterday to ---- well you know.

I am new and I posted a "complaining" post somewhere in this forum but I don't know where. I was depressed [yes I get depressed] and hurting. I apologize for being cranky.

Where is that sense of humor??

I would appreciate it if someone could tell me how to insert "letters" or "posts" without me having to search around for 1/2 hour.
I know I can learn it - but coaching would help.

Whew!
I feel better already just letting off some steam.:eek:

Hang in there
 
Hi Harry, and welcome, sorry you're having a tough time, hopefully things will start to improve soon. I note you've been on steroids for years and that you're now on Pentasa (I've also been on this for years - am due to change to remicade). Have you tried I muran or remicade? I am sorry as I live in the UK I am not familiar with all the meds you listed. Just thought that if your symptoms aren't improving maybe your doc could consider changing your meds?


Ruth
 
ruthymg said:
Hi Harry, and welcome, sorry you're having a tough time, hopefully things will start to improve soon. I note you've been on steroids for years and that you're now on Pentasa (I've also been on this for years - am due to change to remicade). Have you tried I muran or remicade? I am sorry as I live in the UK I am not familiar with all the meds you listed. Just thought that if your symptoms aren't improving maybe your doc could consider changing your meds?


Ruth

My Gastro Dr. hasn't suggested Imuran or Remicade. Seeing I'm paying 100% out of pocket I'd say Remicade is just a dream for me. Drat.

Dr trying to wean me off Entocort, but my body isn't liking that approach.

Good gnus ! I had a reg Dr. physical today and am inok shape. BP good, cholesterol fine, eyes ears nose mouth good. South of the belly button[border] is all there an dworking well. No fever. steady weight. Soooooooooooooo
I guess I have a few 100, 000 miles left on my odometer.

So I can stick around and help and get help on this forum.
 
Glad we still have you for quite some time Harry ;).

Entcort can be hard to ween off of (like any corticosteroid), but it is doable. Just be patient. It may seem like slow progress but it takes time for your body to kick in and take over from free riding off of the drug. Slow and steady wins the race... and gets you off the drug!
 
New here, 50+ years old,,,just got a call fro my regular doctor,,test from stool came back chrones. WOW sent me for a loop. Found this sight and a glad to see so uch support. I went to get the appointment for a colonoscopy and that doctor said the test is not alwasy accurate. Now Im really spinning.. DO I or Don't I have it. I hate test!!!
Now I have so many questions. I got a enema kit and thought I would do a cleansing, today I feel so uch better. ANyone else tried eneams?
Thanks for being here.
To
 
Hi Tom,

Welcome to the forum. In the future I recommend trying to make a seperate thread for each topic/question. In each forum there is a button that reads "new thread". Click that to make a new thread and post topic.

Anyways enemas can provide temporary relief. You should try not to use them regularly for relief, as you can become reliant on them. Instead try to exercise daily if possible (cardiovascular activities) and drink A LOT of water (at least 2 Litres or about 8 cups). This can help with bowel movement regularity and consistency. Hope that helps and look forward to seeing you around the forum.
 
So, it looks like a welcome is due to tom and harry... I guess dick didn't make it yet?

My first run in with IBD was a diagnostic nightmare... Test after test failed to give a definitive diagnosis... (Where have we heard that before?) Long story short? A doc prescribed steroid enemas... one a day for 45 days at $10 per.. Ouch and double ouch.. So help me, between the gymnastics I needed to do in order to take these enemas as prescribed, and the pain that followed as they did their work (had to try to hold the contents in for approx 45 minutes to an hour, plus contort my body so the enemas reached as much of the colon as possible).. Well, the cure was worse than the disease (as far as pain goes).. Anyway, they worked
(or seemed to.. problem went away for over a decade).. When I 1st became sick again, I feared a repeat of the enema treatment.. (out of the mouths of babes). I was relieved at first when told that the extent of my disease this time ruled out the enema treatment ( a person can only contort so much).. Now, in retrospect, I would gladly go thru that hell again for twice as long if I could get a decade long remission.. Funny how life is simpler in retrospect.. Anyway, welcome to Harry & Tom
 

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