• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Hi to you all

Hi,

I'm new and this is my story.

My granny died of bowel cancer, my mother had crohns and my sister has ulcerative colitis. Growing up I thought that men went to the toilet once a day at the same time and women went at least 20 times. You didn't settle down for a nice bath in our house without interuption and you certainly never locked the door.

I started seeing the doctor with symptoms nearly 30 years ago. I've been diagnosed with gall stones and a dodgy gall bladder. Then they went for the good old fall back of IBS. Which in my mind is a lazy diagnosis. It doesn't help when they start the sentence with "the most common cause for your symptoms is.....".

I kept saying that perhaps they should look at my family history which was rife with IBD but it wasn't until I had worked my way through all the doctors in the surgery and found a new one and shouted at her until she sent me for a colonoscopy that I finally got a result.

This of course wasn't my first colonoscopy. By the way, when did they stop giving you sedation for these? On my last ones I had to make polite conversation with a nurse (who was holding my hand) while 2 other guys were blowing air up my bum! You have to pay a lot of money to have that done in some places - if you know what I mean!

Anyway, when the doctor came to see me after that procedure he said he was sorry to say he had discovered lesions. I said hooray!

Since then I've been taking Pentasa (Mesalazine) but it doesn't appear to be working any more so I'm in the process of moving over to Azathioprine. Let's see what that does.

The one thing I want to know is, how can I possibly be this fat when the food doesn't actually stay in my body that long? I know it's gross but I can actually identify what I've eaten on a meal by meal basis.

I should be at least 50 pounds lighter than I am.

Anyway, that's me and I'm pleased to meet you all.

Jan x
 
Welcome Jan!

I don't know if I could handle a colonoscopy without sedation. OUCH!

I was put on Pentasa for a time and it did not work for me. Right now I am on Colazol, but I have also done well on Asacol. For some reason the Pentasa just was not for me.

I feel you about being fat. I had been struggling to keep weight on for so long and now I am just getting bigger and bigger. I am not eating a ton, when I do I go to the bathroom shortly after. What is the deal?

Hope you like the forums. There are a lot of good people here with great information.
 
Welcome Jan, I can't imagine a colonoscopy without sedation, I was upset last week when I didn't get the pre-sedation. I have been taking Pentasa for 8 years and it has stopped working. My Dr. said we are going to try Remicade. And yes, I know about the weight thing, I had severe diarrhea for 14 years before Dx and I was told they didn't know what was wrong with me. They just looked at me, said I was skinny enough, it couldn't be Crohn's. Well 14 years later and the right Dr. (he did the colonscopy right) he said ya you so have Crohn's, but also said, "why haven't you lost weight?" I have struggle to lose the 35 lbs, with no help from this rotten disease, lol.....
 

Dexky

To save time...Ask Dusty!
Location
Kentucky
This of course wasn't my first colonoscopy. By the way, when did they stop giving you sedation for these? On my last ones I had to make polite conversation with a nurse (who was holding my hand) while 2 other guys were blowing air up my bum! You have to pay a lot of money to have that done in some places - if you know what I mean!
:ylol: Oh Jan, I do hope you stick around!! You're gonna fit right in with this bunch. Good luck!! You'll get some of our big guns with plenty of answers for you. Oh, man :ylol2:
 

DustyKat

Super Moderator
Hi Jan and :welcome:

I'm glad you found your way here. I hope the Imuran does the trick for you. As you have already found out the weight thing is just another peculiarity of Crohns,some people don't have the weight loss issues that others do. I often wonder if it has to do not so much with the malabsorption and amount of diarrhoea but if you are actually able to eat much or have an appetite in the first place...............hmmmmmm (((shrug))).

I hope you stick around 'cause this is a great place with loads of info and friendly people and it would be great to have you here.

Welcome aboard!

All the best, :)
Dusty
 
Hi Jan,
Welcome! I am FAT! Many many years of pred have taken its toll. Lost 85 lbs last year during terrible flare and still way overweight. A big prob for me is that I can't eat fiber and sometimes only carbs can be tolerated....oh well.
Enjoy the support here!
Debbie
 
ok finally

I was thinking it was just me...but i too have to lose about 25 lbs...I thought everyone who had crohns was just normally skinny...(well i used to weigh 125lbs)...I have had crohns since I was 19 (now 47) have had 3 resections and besides being tired and a tad overweight, I Have not had it that bad. I get b12 injections and iron injections but it could be worse right...I have avoided most meds as I dont like the side effects...(the worst being my hair falling out) and its thin to begin with...I was just put back on Imuran but had a really bad episode where i thought i was having a heart attack and ended up calling 911 and put in Emerg...so again, I stopped taking Imuran...these drugs are lethal if you ask me...Prednisone is another drug I will NEVER take...did me right in the last time...it was hell...
 

Crohn's 35

Inactive Account
I was thinking it was just me...but i too have to lose about 25 lbs...I thought everyone who had crohns was just normally skinny...(well i used to weigh 125lbs)...I have had crohns since I was 19 (now 47) have had 3 resections and besides being tired and a tad overweight, I Have not had it that bad. I get b12 injections and iron injections but it could be worse right...I have avoided most meds as I dont like the side effects...(the worst being my hair falling out) and its thin to begin with...I was just put back on Imuran but had a really bad episode where i thought i was having a heart attack and ended up calling 911 and put in Emerg...so again, I stopped taking Imuran...these drugs are lethal if you ask me...Prednisone is another drug I will NEVER take...did me right in the last time...it was hell...
HI Sylvie :big wave: welcome to the forum and another Canadian! I know how you feel about the meds, and I too have had resections but when you are in pain you do what you have to do to have some quality of life!

It would be great if you could tell us your story on a YOUR story thread so we can all welcome you to our great community! Glad you joined us here!
 
Thank you...

I'm just trying to figure out how to use this site...I will post my story...but thanks for the welcome...I would love to tell my story...its a long one though..:ysmile:
 

Crohn's 35

Inactive Account
I'm just trying to figure out how to use this site...I will post my story...but thanks for the welcome...I would love to tell my story...its a long one though..:ysmile:
HI there, ha, dont worry I have been on here for almost 3 years and still have problems lol.

Go to the main board and you will see the YOUR story thread, click on it and create a new thread and tell us your story. Doesnt matter how long it is, we are still here for you, and it is wonderful to have new people here, this is a great site with many wonderful and helping people and get first hand information. Welcome!

Glad you are here!:thumleft:
 

Astra

Moderator
Hi Jan
and welcome fellow Brit (where are you?)

good luck with the Aza, I was allergic to it!
Pentasa is my maintenance drug, been taking it for 5 years now with no problems.
so glad you got a dx, I had the old IBS for 15 years, so I hear ya sister!
glad you found us, you'll fit right in here with us lot, lots of laughs and great support!
lotsa luv
Joan xxx
 
Hi Joan (Astra) - I'm not far away from you. I'm in Kendal. Funnily enough hubby is from St Helens.

Been having a fight with the consultant who wanted me to go onto the steroids but I refused as I'd seen the side effects my sister had with them and they don't work anyway. Well it didn't work with her so I'm pretty sure they wouldn't work for me.

So I'm now on the Azathioprine. Only been taking them since last Thursday. Let's hope they work.

Sylvie - I am terrified that my hair is going to drop out. I've got fine hair too and I'm really vain about it.

Thank you all for a lovely warm welcome. Especially my fellow chunkies! It's nice to know that I'm not on my own.

BTW - my consultant is really cute, but how can you flirt with a guy who's blown compressed air up your bum! ;-)

Jan x
 
Hi Joan (Astra) - I'm not far away from you. I'm in Kendal. Funnily enough hubby is from St Helens.

Been having a fight with the consultant who wanted me to go onto the steroids but I refused as I'd seen the side effects my sister had with them and they don't work anyway. Well it didn't work with her so I'm pretty sure they wouldn't work for me.

So I'm now on the Azathioprine. Only been taking them since last Thursday. Let's hope they work.

Sylvie - I am terrified that my hair is going to drop out. I've got fine hair too and I'm really vain about it.

Thank you all for a lovely warm welcome. Especially my fellow chunkies! It's nice to know that I'm not on my own.

BTW - my consultant is really cute, but how can you flirt with a guy who's blown compressed air up your bum! ;-)

Jan x
omg Jan, thats so cute...when you say consultant, are you referring to your specialist? I go to a big hospital downtown (a teaching hospital) and I have come across some really hot dr's..but yes..cant really hit on them after all they've already seen/done...on another note, I have very fine hair as well, guess its hereditary..however, I found this great stuff that I found worked as I had a really bad fallout when i was on pred..i was on azath for 4 weeks and i noticed my hair falling out..in the shower especially...that is one side effect i cant deal with (i know some may think thats nuts) but when you have fine hair to begin with..you cant afford to lose more..and besides having ulcers in my bowels i feel pretty good...I am really at a loss on what to do concering the drugs...so I will just wait it out and see...let me know how it works for you
 

Astra

Moderator
Hiya Jan!

I love Kendal, I got married there!
small world, your hubby from round here! I might know him! ha ha
I've had hair loss too, got very paranoid with it, but it goes in spurts, grows back quickly too! At first I thought it was Pred, Pentasa or Aza, but I believe it's a Crohnie thang!
My gastro is gorgeous! He looks like Peter Andre! If you wanna good laugh, read my thread when I went to see him 2 weeks ago! I was mortified!
xxxx
 
Hi Joan,

Hubby moved up here when he was 18, that was in 1982. Although he does tend to make an impression on people.

Where's your thread on the Peter Andre guy? I'm still finding my way round this site and it's taking a while.

Jan x
 
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