| IBD |
 Hi im new to the site because i have been in seek of suggestions/help and what to expect because my doctor told me a week ago im going to have to have surgery for my ibd. im 15 years old and have been living life ibd for about 3-4 years. im not to sure what to expect from the surgery and when i found out i would have to have a poop bag i kinda freaked out because i thought people would make fun of me and such.. any suggestions or comments on what i might face on my way through the surgery? or anything?? |
 David-martin on December 03 2009 11:27:13
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| Crohn's hospital |
 I have just been referred to Sy Marks hospital, harrow, London. It is the only hospital in the Uk that has specialised in abdominal surgery since 1890. It ONLY sees abdominal cases. Their crohn's specialist is Dr Caroline Vaizey although I am seeing another consultant; - you can be referred by your gastro consultant, your GP or even yourself - you can fill a referral form in on-line. I have seen 4 colorectal surgeons in Wales who say they are the best port of call as they cannot solve my problems. Admittedly I have unusual complications having had an emergency ileostomy the day before Christmas 2007, but the consultants believe there were a lot of underlying errors, adhesions and no spout made as surgery was rushed. I also suffered massive blood loss and had a stroke losing the sight of one eye, so something happened. The whole thing has made leakage a constant problem. However, anyone who wants an expert crohn's opinion is welcome to use them. I have heard only very good things from other patients and even their online literature is really informative. (diets, aftercare etc.) Check them out. www.stmarkshospital.org.uk I will post review after my appointment tomorrow. |
rhosymynydd on November 10 2009 15:44:02
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| Pants - new idea for male ostomates |
 Looking for products the other day I came across a new product for young men who have had ileostomy or colostomy surgery - (while they make a product for us gals - it does not do the same job). Called smugglingduds (http://www.smugglingduds.com/) they manufacture boxer shorts with a pocket on the front. It is intended as a discreet pocket buttoned down to carry condoms while out clubbing BUT it is big enough to carry a spare ostomy bag (folded of course), sparing the embarrasment of one falling out of a pocket etc. I had a young ostomate friend who I thought it might be ideal for, and ordered a pair on spec. On a test run it worked wonderfully.
Unfortunately the ladies pants only come in a thong and the pocket is not big enough to carry a bag. I am trying to get the manufacturers to look into making larger briefs with the pocket but that may take some time.
just thought I would pass the word on! |
rhosymynydd on October 07 2009 13:51:37
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| Letter to 'Normals' from a chronic pain sufferer! |
 Whilst wondering around the great WWW, I stumbled across the following letter. Whilst not specifically CD related I found my self agreeing and identifying with the writer! It was good to know that I wasn't the only person who had lost people because I was Ill!! x
TO FRIENDS AND FAMILY
I look normal. Don't let my outward appearance fool you; I am in pain. I am not the same person I was a year ago, or 2 years ago, or 4, depending on when it last was you saw me. I look healthy. I am not.
My condition changes from day to day, sometimes even hour to hour. Today I might be able to walk with you a few miles; tomorrow I may not be able to get up off the couch. A week ago, I felt almost human; next week I may feel like something less than what the cat drags in. I may want to do all the same things I use to: to work out, take long walks, socialize, keep some sembelance of household order, but I may not be capable of it.
If I say "maybe later", please understand and accept this for what it is, which is not an excuse, it is a reason. I don't enjoy my new limitations; I hate it. I might even be physically able to do today what you wish for me to do, but if I know without a shadow of a doubt that pleasing you will mean for me later an incredible amount of pain, I must say no. I'm not lazy. I just hurt.
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freakyfairy on September 10 2009 16:13:32
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| A Poem about living with crohns |
I wrote this a few years ago whilst I was in an easier period due to medication! But colleagues and people close to me couldn't understand what I was going thru!!
The Real Me.
Who do you see when you look at me?
A smile on the face of a girl
Living in a carefree world.
On a brightly-lit happy dance floor
With everything worth living for......
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freakyfairy on September 08 2009 10:57:29
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| the beginning |
 So i will start at the beginning, so be warned, this might be a lengthy article :) im sorry in advance....lol
so it all started in november 2007, i was visiting my then boyfriend in manchester, and we where just getting reeady to go out for dinner with his family, when all of a sudden i started getting a VERY sharp pain in my left side...i thought nothing of it, and thought it might be period pains or something related...although i had, had D a few days before...
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purpleeyes on July 02 2009 16:31:20
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| One year on... |
 I just realised that it was 1 year ago today that my crohns was diagnosed. And I thought my life was as good as over. I've had the odd rough time, and i've not always been feeling my best, but over all I've managed so much better that what I thought. My family and friends have been great, but this website has helped me out more than I ever thought. I don't come on here that often, but whenever I have there has always been someone able to answer my questions which has really helped me out at tough times. So I just wanted to take this opportunity one year on to say a massive thank you to you all. I wish you all the best of health for the next 12 months, and the next, and the next.... |
up n down on June 20 2009 11:12:23
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| An Acrostic Ode To Crohns |
C.ould it be - at last, my soul mate is found?
R.omeo never envisaged a passion so strong and wild
O.h Juliet. Or Jezebel. Where art thou gone?
H.old me tight to your bosom with your angry, consuming passion
N. ever allow my tired aching body to fall from your grip
S.urely to see you dead, this sword must pierce my heart first |
JoshuazVision on June 18 2009 15:53:26
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| Marcs' Story |
I was diagnosed with Crohns 6 years ago, it didn't really come as a shock as my Mum has had Crohns for 27 years, my Uncle has had it for 20 years and they both have had numerous surgeries and permanent ileostomies, so between us we recognised the symptoms!!
27 April went in for "key hole surgery" to remove terminal ileum which was ulcerated - 3 days in hospital and everything would be great? Yeah! Right. Day 5 still on morphine, can't move or eat, CT scan shows build up of fluid around the join,but it is a Bank Holiday weekend and they think I can hang on until Tuesday when the op theatre and ultrasound is open for business again. Wrong - 3 pm Bank Holiday Monday things hit crisis point, a mere 9 1/2 housrs later, at 12.30am registra finally wandered in to see me, called the Consultant as by now critical to operate. Went to surgery at 2am and at 5.30am woke up to find they had given me a "designer bag".
Left hospital weighing a hefty 7 1/2 stone and looking like someone out of Auschwitz - not a good look for my brothers wedding on the Saturday!
Anyhow, I am working at getting better and looking forward to the reversal op in September.
In the meantime me and my family (wife, son age 5 and two daughters age 2 and 5 months) are trying to cope with the "fall out"
Any tips for coping mechanisms??? |
kimkimuk on June 10 2009 11:12:26
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| my life |
| i have had chron's for 9 years and only 26 had 8 major operations died on the operating table 2 times have a bag on my stomache permanetly no wife on kids had to move back home with mom but gettun ready to get my on place maybe one day things will get better anyway peace |
DAVEfor9years on June 08 2009 11:06:09
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hi im new to this ive been diagnosed with crohns for a yr and i am really suffering with a lot of pain i am trying to keep things together but finding it difficult helpppppppppppppppppppppp
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