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Crohn's Disease Forum » Your Story » New but old


07-18-2012, 05:28 PM   #1
sarah a
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Join Date: Jul 2012
Location: leeds, United Kingdom
New but old

So this is the first time I have ever joined a support group. But feel I need exactlty that right now. I was diagnosed with chrons at 18 years old and have now had it almost 14 years. For the most part of that, I have lead a normal life, probably down to me been very stubborn and inventing a new kind of "ill". However I have recently had some pretty bad reactions to medications and this isn't the first time. Anything from symptoms been worse to losing all hair has been covered. So now the option of surgery is popping its ugly head round the corner. Firstly I'm very worried about the impact on my life from having small bowel resection. Secondly some sort of t-junction is apparently going to be put in place? I have no idea what this means and my GI is not the best at communicating. So any advice on those two points would be great. Thanks
07-18-2012, 05:33 PM   #2
Astrid
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Join Date: May 2012
Location: Nijmegen, Netherlands
Welcome to the forums. I can't answer your questions, but I wanted to say I'm here to support you if you need to talk. It sukcs you've had these bad med reactions. Hope you do find answers here.
07-18-2012, 05:45 PM   #3
sarah a
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Join Date: Jul 2012
Location: leeds, United Kingdom
Thanks Astrid. Its just really frustrating when no-one seem to want to give you any definate answers. I'm usually quite a tough cookie when it comes to my chrons. But the idea of surgery is quite scary. I can't continue with all side effects from meds though, its effecting my job for a start. I don't have time off sick, but I can't actually do my role when I'm slowly dropping apart. I have always prided myself on the fact that I carry on as normal and working every day is part of that.
07-18-2012, 11:20 PM   #4
David
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Join Date: Feb 2006
Location: Naples, Florida
Hi there and welcome

Your concerns are understandable. Be sure to check out our surgery forum under the Treatment forum (or click that link) for lots of stories and people you can connect with who are in the same boat as you.

I'm not familiar with a T Junction but maybe someone else is. Do you know what specific part of your small intestines is being removed?

We're here for you anytime. Again, welcome!
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07-19-2012, 01:31 AM   #5
sarah a
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Join Date: Jul 2012
Location: leeds, United Kingdom
Thanks David, I will have a look through surgery forum. Like I said previously my GI isn't the best at communicating, however I think its the ileum that they plan to remove. A recent MRI scan showed my small bowel had shrunk by about 30 percent due to scarring. So I know its going to have to be operated on in future but this as now come round quicker due to my intolerance to the biologics. Tried both remicade and humira and both caused severe psoriosis, to the point where my skin became so dry my tear ducts detached and I lost all hair. I have looked on google a couple times to see what advice I could find about surgery and it scared me as it was either very negative or medical jargon. I hope I can find atleast on positive story out there.
07-19-2012, 03:50 AM   #6
David
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Join Date: Feb 2006
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There are definitely plenty of people here who have had great success with surgery.
07-19-2012, 05:23 AM   #7
maria
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Join Date: Jan 2012
Location: van, Washington
Yes! I have a ileostomy and I feel pretty good. Much better. It's been a yr now and I have had 2 stomas made and a jpouch creation surgery within this last month. i would do it again. i have had ups and downs but overall much better. i have more freedom.
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I want to find a friend here in vancouver, washington with a stoma... I feel lonely.
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07-19-2012, 01:38 PM   #8
sarah a
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Join Date: Jul 2012
Location: leeds, United Kingdom
Thanks for all the help. Appointment to discuss surgery august 9th and feeling much better after reading some positive things about it. Thanks again.
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