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Crohn's Disease Forum » Your Story » Newbie to the forum, not to the disease.


06-04-2010, 01:51 PM   #1
insert_name_here
 
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Newbie to the forum, not to the disease.

Hi everyone!

I decided to join this forum because I've been emotionally struggling with my situation lately and was hoping for support from people who've been there.

I'm a 30 y.o. female, who was diagnosed with Crohns at the age of 13. I've had several hospitalizations as a teen and one bowel resection about 10 years ago. After Remicade came out, I was in remission for almost 10 years (!!!) however, when I started a new, very stressful job, suddenly things started going downhill.

Interestingly, I didn't have a regular "flare up" this time around...no abdominal pain, a huge number of bathroom trips or weight loss. Instead, I developed a horseshoe perianal fistula in January 2009. I've had 7 minor (in comparison to the bowel resection) surgeries in a year and a half. Numerous infections. One failed cook plug placement. I'm currently living with 2 setons, or as I like to call them, butt piercings...the last one having been implanted only a week ago, so I'm still pretty sore.

What I'm trying to do for myself at the moment is lead a less stressful lifestyle, which begins with me quitting my job. I'm hoping the setons help keep everything draining and leave me infection free for a long period of time. I don't want any more hole closure attempts once things settle down because I want to start a family within the next year or so.

I have a few questions for my fellow Crohns buddies:

1) Has anyone been pregnant with an open perianal fistula? I spoke with my surgeon and GYN who are both supportive of me getting preggers once things have been calm for a while. However, I would like to hear the personal experience of anyone who's gone through this.

2) Has anyone with a firm diagnosis of Crohns had any success with a plug or flap procedure?

3) Has anyone decided to live with a seton for the long term? Was that successful for you? For how long?

My main concern about fixing the fistula is bowel incontinence. I would rather live with a seton for many years and wait for new scientific breakthroughs that rush into a surgery that carries the risk of fecal incontinence.

I keep thinking about the BP oil spill...all holes seem difficult to plug! lol!

Thanks in advance to all those who respond.
06-04-2010, 03:49 PM   #2
belle1999
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I can't really help with any of your questions. But, I can say welcome to the forum! I hope that someone around here can answer your questions. I would like to hear what they say as well.
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Diagnosed December 30, 2009
Current Meds: Humira, iron, vitamin d, vitamin c, b12, multivitamin
Also have anemia and anxiety disorder

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06-04-2010, 10:07 PM   #3
crohnicaly stinky
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Location: annandale, Virginia
Welcome to the forum. I'm afraid I can't help much with your questions either but I'm sure someone can.
06-04-2010, 10:19 PM   #4
Entchen
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A quick word of welcome and some *virtual hugs* sent your way.
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Dx: Moderate Crohn's in 3 locations
Doctor's orders: 200 mg Imuran
Have used: 4500 mg Pentasa, 4500 mg Salofalk, Flagyl, Cipro, 50 mg Prednisone, 9 mg Entocort.
Turned my Crohn's life around: ginger for nausea.
Claim to fame: "loopy and floppy" colon
06-05-2010, 06:19 AM   #5
Astra
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Location: St Helens, Merseyside, United Kingdom

My Support Groups:
Big hello
and welcome

sorry can't help you with this one!
xxx
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Joan

Dx Crohn's in TI 2005 symptoms for 15 years prior

BEEN ON -Azathioprine, 6MP, Prednisolone, Pentasa, Budesonide, Metronidazole, Humira, Methotrexate,

NOW ON -Amitriptyline 25mg
21/02/14 Right hemicolectomy surgery




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No-one should make you feel inferior without your consent!

06-05-2010, 06:23 AM   #6
Dexky
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Location: Kentucky

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i've read a lot on this forum but "cook plugs and setons", I've not seen before.
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Mark, father of EJ

EJ dx w/ Crohn's 12/09
PSC 3/10

No more 6mp
Currently in the Humira Club
06-05-2010, 06:24 AM   #7
Lisa
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Location: New York

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I was pregnant with both a perianal and rectovaginal fistula.....no complications, but I did have a c-section.....no surgeries to fix them - a few months after I had my daughter I started Remicade, which cleared up the fistulas.......
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30 plus years and counting with UC/Crohn's!
on remicade since 11/05

While my experiences may not be what everyone has had- I feel it is worthwhile to share any and all experiences that may be beneficial to others.
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Crohn's Disease Forum » Your Story » Newbie to the forum, not to the disease.
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