Crohn's Disease Forum » Your Story » Crohns active again


07-25-2009, 10:24 AM   #1
Crohn's 93
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Crohns active again

Just wanted to introduce myself. I'm Dave from Southern Maryland, am 48 yo and have had Crohn's since I was 17. I've had 26 bowel/fistulas operations in past 12 years. My Crohn's has been inactive for about 12 years since I finally had to get an ileostomy. I've been on almost all the meds. and have build up antibodies to Remicade. I'm now on Humira and that's seems to help but the doctor has just up'ed my Humira to once a week which took 3 weeks to get OK'ed by my insurance. I'm hoping this works due to only having about 250 cm of small bowel left with 100 cm infected again with Crohns. I spent half of 1998 and all of 1999 on TPN and sure don't want to go through that again. Now back to re-educating myself on any new treatments or advice.

Dave...
07-25-2009, 10:46 AM   #2
teeny5
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Welcome to the forum!
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"Adopt the pace of nature: her secret is patience. -Ralph Waldo Emerson"
07-25-2009, 01:35 PM   #3
Crohn's 93
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Pen said:
Hi Dave, wow your lifespan of your disease is almost like mine but not near the surgeries, 3 including appendix removal. I get kidney stones, have recently dx with a hiatus hernia and I am 48 but female . Women have different problems. My only lucky thing is I do not bleed and have been on Remicad and Humira and down to one a week too but Peter'd out. Now I am on VSL and is helping me alot, needed to take break from meds. Though it isnt perfect, it is helping me, and if I get bad I take Cipro or Flagy for a few days to calm it down. There is no quick fix but you have to find your own way to keeping it calm. Are you working and do you have support of family? Support goes along way. Any other siblings have it? Take care, keep us updated on how you are managing.

Thanks for the reply, I have not worked since 1999. My doctor wanted to try VSL next but they disqualified me due to having an Ileostomy. If the weekly Humira does not work then it's on to Cimzia. I just this week started the weekly Humira so I just have to wait. I am very fortunate to have an extremely supportive wife. That does make things easier. The only other person in my family who has Crohns is my niece, shes 18 and got it when she was 16. She's had one surgery about 9 months ago and is off all meds and doing great.


Dave...
07-25-2009, 01:36 PM   #4
Crohn's 93
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teeny5 said:
Welcome to the forum!
Thanks for the welcome!

Dave...
07-25-2009, 03:37 PM   #5
beth
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Blimey, you've been through the mill a bit.

07-25-2009, 03:56 PM   #6
bigtruck
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sorry to hear you've had such a rough time sir, welcome aboard
07-25-2009, 05:49 PM   #7
bruscar
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holy shit Dave !!........sorry no pun intended...........You just hang in there Dave as best you can......keep focusing on the positives.......Think what a fantastic person your wife is and how much she must love you to stick by you for such a long and hugely crippling illnes .

Kind regards

Bruscar
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07-25-2009, 09:46 PM   #8
D Bergy
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Hello Dave.

I had to read your post twice to make sure I was not mistaken. 26 operations?

I think you have the record by a long shot. Boy I sure hope that Humira works out for you.
07-26-2009, 09:54 AM   #9
Crohn's 93
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D Bergy said:
Hello Dave.

I had to read your post twice to make sure I was not mistaken. 26 operations?

I think you have the record by a long shot. Boy I sure hope that Humira works out for you.
Not a record I ever wanted... And that's 26 right down the center of my stomach. I've had 6 other surgeries for hernia's and a gull bladder. I still have 2 hernia's that are up high on my stomach but may never need surgery unless they start hurting.

My saving grace is that I live fairly near John Hopkins hospital in Baltimore Maryland USA. My last two major surgeries were at John Hopkins and they opened me up and took what's called 'faceia', (not sure about spelling) a muscle out of both of my legs. They took all my bowel out and took out all the mesh from previous surgeries from other hospitals. They had a plastic surgeon rebuild my stomach wall with the faceia after putting the bowel back. That finally stopped all the fistula problems and got me off the TPN. Still can't believe I went 18 straight months without eating anything, seems like it was someone else that it happened to looking back on those months.

I have been on Remicade for arthritis the last 5 to 6 years I'm am very surprised that my Crohns has come back, I thought once the Ileostomy was on that it was hard for the Crohns to become active again, much less being on the Remicade at the same time. I started feeling bad again when I went from the Remicade to the Humira, just hope the weekly Humira works.

Dave...
08-07-2009, 02:12 AM   #10
Crohn's 93
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Hope this is good news from the Humira being used weekly. I had my third weekly shot yesterday. For the past 5 to 7 days have been feeling much, much better. I have not had anywhere near a good day in the past 10 months so to have a good 7 days is a small bit of heaven. See the GI doctor next Tuesday and I'm sure the taper off the lovely Prednisone will start. Have to do that to make sure it's not just the Prednisone making me feel better.

Dave...

08-07-2009, 07:54 AM   #11
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Hi, Dave. Welcome to the forum. It's a great place to share, get info, ask questions, vent frustrations, tell jokes... whatever!

26 operations... that's awful. Sorry you've had to undergo so much at such a young age (only 48!). I agree, I think you have the current CF record.

I'm also on Humira. Just had my first dose of 4 shots last Friday. I know it's too soon to notice any changes yet, but I'm hopeful.

Keep your head up!
08-07-2009, 06:28 PM   #12
JillianB82
 
Welcome to the forum Dave!!!

I hope you're feeling well soon!!
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