Introducing myself!

[Jonny C]

Hi everyone!
After being one of the many "silent witnesses" to the forum I decided to finally show myself.

I was diagnosed with UC on November 18. And just in case anyone has doubts about IBD being hereditary...

- My grandmother had UC
- My dad has had Crohn's for 30 years (took every drug ever created, ileostomy about 18 years ago, on humira now)
- My nephew has had Crohn's for 9 years (diagnosed at 16 months old! Remicade was the only thing that got him into remission)
- My cousin has had UC for 12 years (long-term remission)

We are quite the colonic family. And I realize this has made things a lot easier for me. I'm sure for many of you, you were the first and only person you know to deal with this crap (pun incredibly intended). I came into this diagnosis already knowing a lot more than the average bear, and knowing for years that something like this could befall me.

Doc started me at 60 mg of Prednisone, and I've tapered down to 35 mg and will continue tapering by 5 mg per week. I'm pretty happy about the fact that I haven't had any noticable side effects. It even cleared up my acne-prone skin! (I'm 29 and still get zits. I mean, come on). I'm also on sulfasalazine. I'm pretty sure I'm in remission now. I was curious as to how many of you flared up again after you were done with the pred. I'm hoping the sulfasalazine is all I will need for a long time, but ya never know.

I'm very happy to join the forum and can only say how amazed I am at the perseverance of so many of you. You guys rock! :dance:

 

[Crohn's 35]

Hi Jonny :welcome: to the forum! I too come from a family of CD and UC, almost everyone except my mom has a form of IBD or IBS. I have CD and have had it the longest. As for Prednisone I find as soon as I get down to 20mg the flare comes back and others find that too. I cant take immunosuppressors, they affect my liver and make me sick.

Funny most people complain of getting acne on Pred lol. 60mg is very high you must be just whizzy along with energy...and eating everything that isnt nailed down :lol:

We are a great community and try to share or experiences as well as laughs, God knows laughter isnt around enough. Glad you joined... wonder why so many people lurk so long before joining? WE don't bite, not on enough prednisone for that:lol2: and too salty, trying to stay away from that. :lol2:

 

[Jonny C]

Thanks for the welcome Pen :smile:

Yeah the energy boost was great, especially since I had a huuuuuge project at work, and I got so much done so quick. And I almost enjoyed it! (almost)

20 mg eh? Well I guess I should be thankful I'll still be at 25 come Christmas!

 

[IHateColons]

I'm from a long line of sucky colons as well. Dad has diverticulitis; Uncle has colon cancer; Grandma has colitis, etc. etc. etc.
Sounds like you have a great attitude which is what UC patients MUST have.
Be careful with the Prednisone because I'm pretty sure that's what made my colon rupture in two places.
Also, stay on the sulfa stuff as long as you can because the alternatives are SO expensive.
Has your dad ever thought about having an ileostomy reversal?

 

[Jonny C]

I don't know if an ileostomy reversal is possible for my dad, because I'm not sure how much of his colon is even left. I know his rectum is totally gone. He has been having a lot of problems with skin irritation and bleeding lately, because he's actually flaring at the stoma. His doctor is considering moving it to his left side from his right.

And yes, sucky colons are sucky. Just the other day my friend posted to Facebook about how he can have as much Chipotle as he wants because he has a "golden colon." I kinda, sorta wanted to punch him.

 

[IHateColons]

Haha! I would have punched him. I loved chipotle but that darn corn salsa will get you every time. Speaking of which, my dad has decided to make corn on the cob tonight. How lovely of him.

 

[KWalker]

Welcome! That's amazing that so many people in your family have a history of this (not saying that's a good thing). I'm the exact opposite, I was the first in my family to have any sort of bowel problem. I also still get acne sometimes and I'm 21, so I know what you're going through that way.

Oh, and prednisone sucks!

 

[Jonny C]

Thanks Walker! What an age for you to be going through this. I keep telling myself I was lucky to get through high school and college with my worst illness being a hangover.

Come to think of it, prednisone reminds me of high school. It's like that friend that pretends to be on your side 100% but will turn around and stab you in the back. Think Brenda and Kelly from 90210. West Beverly 4 life.

 

[Jessi]

Hello and welcome to the family, Jonny. I'm glad you finally decided to join. This is the best forum I have found on IBD. You definitely came to the right place.

Like KWalker, I was the first in my family to be diagnosed with IBD. So it was a major shocker for me. I was put on 60 mg of prednisone, too. But I tapered a lot faster. I went down 10 mg every week. It gave me terrible acne. I've never had it before in my life and never realized how painful acne is. Prednisone stopped my bleeding right away. Now I'm in remission with Remicade being my only maintenance drug. High hopes for you, too!! :hug:

I hope you stick around with us. Welcome once again.

 

[Jonny C]

Thanks for the warm welcome Jessi! I think I jinxed myself with the post about no side effects.. I'm starting to see the first signs of puffiness in the face. My grandmother will have even more cheek to squeeze this Christmas! :hug:

 

[Richard414]

Welcome Jonny C!
I was diagnosed with UC at age 26 and sulfasalazine controlled it pretty well for over 30 years. As I got older the flares got worse and the extensive scar tissue in my colon was a concern for becoming cancerous. I had my colon removed at age 62 and now, 3 years later am functioning pretty well with a j-pouch. Good luck! I hope the sulfasalazine works for you. BTW, 60mg pred. drives me up the wall...so wired and can't sleep. ( I currently am on 30mg for pyoderma gangrenosum, another manifestation of our wacko immune system.

 

[Jonny C]

Oh wow, Richard, I just came across pyoderma gangrenosum on the Internets for the first time last night when I was reading the UC article on Wikipedia. I hope your's isn't as bad as the unsightly picture they have up there!

 

[Richard414]

Not that bad but probably would be if left untreated. It developed quite rapidly and my GP didn't know what it was and just treated with antibiotics at first which did nothing. When finally got on prednisone it helped almost immediately but when reduced PG returned. So now on Pred. indefinitely.

 

[stratford]

Hi Jonny C

Thanks for sharing your story.
I'm the only person in my family to ever be diagnosed with Crohn's.
I'm mid 40's now and i've never become a Dad as it always worried me too much i might pass the illness on.
I've come across some nasty,sometimes disgusting, attitudes due to this.

Best wishes to you and your family

 

[Richard414]

I'm mid 40's now and i've never become a Dad as it always worried me too much i might pass the illness on.

Have you considered adoption? I was in my 50's when my wife and I adopted a baby girl.

 

[Jonny C]

I'm mid 40's now and i've never become a Dad as it always worried me too much i might pass the illness on.
I've come across some nasty,sometimes disgusting, attitudes due to this.

I totally understand this. When my nephew was diagnosed, my sister's husband (heretofore referred to as "ass") was resentful of my dad and stopped just short of outright blaming him for his son's illness. Thankfully, my sister divorced that ass.

 

[scottsma]

hi,Stephani

:thumright:welcome to the forum.I'm a newbie too and this is a great forum.lots of advice and also lots of laffs.Time flies when you're on so do all the little jobs etc beforehand.hope you're having a GOOD day today.