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Crohn's Disease Forum » Your Story » Waiting for the sunny day


07-21-2015, 01:07 AM   #1
LavendersBlue
 
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Join Date: Jul 2015
Location: Canada, Ontario
Waiting for the sunny day

Hi, I only discovered your forum recently when I was searching around online while feeling somewhat down about the matter of Crohn's in my life. It may seem odd that having been diagnosed 27 years ago this illness manages to get me down, but it does. I am 48 and will be having Stricturoplasty surgery next month, although it could turn onto a re-section depending on how things look during the surgery. I had a small bowel re-section three years ago due to two strictures which were in close proximity to each other. Prior to that I hadn't had surgery in thirteen years. In the 1990's I had surgery four times - every two years. These were all involved with creating an ileostomy, changing it to a colostomy, and then two revisions - back to an ileostomy, and a re-siting to my left abdomen. Also prior to these I had minor procedures.
The greatest thing in my life has been that I had two children during healthy periods of my life. I only had issues with developing fistulas in the last three months of my first pregnancy.
I tell my kids that I am super mom. I try my best to show only the positive and I push through a lot of bad days doing everything they need me to do and more.
My recent symptoms have been hospitalizations due to partial obstructions and dehydration. When my food won't pass through I end up throwing up even liquids I drink. So the remedy will be to have the stricturoplasty so I can get back to eating more than a semi-solid, soft food and often liquid only diet. When you have an ileostomy this diet results in numerous bathroom trips as I can't slow down the output.
It's been interesting to read the positivity your members post. I don't have any regular contact with other Crohn's sufferers or those with ileostomies.
After my surgery my GI is recommending Remicade. Current treatment is Imuran.
I read the discussion about yoga on the forum and plan to look onto that further.
I have an excellent surgeon whom I trust implicitly, so I know I'll be back to an improved daily life soon, and this temporary cloud will give way to the sun. In the meantime I hum The Beatles' song "Here Comes the Sun".
07-21-2015, 06:36 AM   #2
DJW
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Location: Ontario

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Hi and welcome to the forum.
I find this is a great place for support. Lots of wonderful people.

I've been on imuran for 2 years and Remicade for almost a year.
I have not had one obstruction or ER visit since starting. Very thankful.

I hope you have great success.
__________________
Crohn's Disease
DX 1978 (12 yrs old)
Ileostomy at 19

Visit Crohn's and Colitis Canada:
http://www.crohnsandcolitis.ca/site/...tis_Canada.htm

Living in Ontario with no drug benefits?

Trillium Drug Program:
http://www.health.gov.on.ca/en/publi..._trillium.aspx

Dave
07-21-2015, 07:42 PM   #3
LavendersBlue
 
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Location: Canada, Ontario
Thank you for your reply DJW, that is encouraging. I had been very worried about taking Imuran for quite awhile. I was given a good talk in my local hospital by a surgeon who calmed me down about it. My doctors tell me that Remicade will help with prevention of symptoms rather than being treated for recurring symptoms.

Thank you to Tuff as well for your mention of support.

I am still new to figuring out all the details of this forum. For example I came across something about local support, but now I can't find how I got there again. If anyone can direct me on this it's very much appreciated.

It's amazing how many people post to this forum each day. I am glad to have found a place that talks about shared experiences. Best to all.

Last edited by LavendersBlue; 07-21-2015 at 07:44 PM. Reason: spelling
07-21-2015, 07:47 PM   #4
Lisa
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Location: New York

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Welcome to the community! If you go to the main forum page, scroll down and there is a section for support groups. The Ontario group is found here - http://www.crohnsforum.com/forumdisplay.php?f=98 to make it a little easier to find.
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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.
07-21-2015, 08:25 PM   #5
araceli
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Welcome to the forum. I hope your surgery goes well. My Daughter has been on remicade for almost 3 years and in remission since then.
__________________
Mom/ Girl 19
dx 2011 crohn's in terminal ileum, peri-anal
Prior Meds Asacol, Prednisone, nexium
Current meds.
Remicade since Nov. 2012
Supplements
5000 Vit. D, Multi-Vitamins with Iron
Currently in REMISSION :dance

Mom/ 16 boy
Amplified musculoskeletal pain
Prior. Prednisone, sulfasadine,
Currently. Celebrex, gabapentin, amitriptyline.
07-21-2015, 09:30 PM   #6
teeny5
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Location: California

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Welcome to the forum!
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Currently on: Colazal, Prilosec, multi-vitamin, probiotics, total EFA's, glucosamine.

Previous meds: Sulfasalazine, Asacol, Rowasa, Pentasa, Entocort.


"Adopt the pace of nature: her secret is patience. -Ralph Waldo Emerson"
07-26-2015, 12:15 PM   #7
David
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Location: Naples, Florida
Welcome to the forum. Thanks for joining and sharing your story!

Please keep us updated on the surgery. We're here for you!
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