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becellea74
Regular Member


Date Joined Apr 2008
Total Posts : 90
   Posted 2/24/2009 11:47 PM (GMT -6)   
Hello everyone my name is bex i have cd in my sml bowel only and my disease is active at the moment ,could be looking at my 3rd surgary on this area what options do i have when it comes to a bag what would be better love to here some input kinda scared really as i am very thin. x shakehead

Pin Cushion
Regular Member


Date Joined Feb 2003
Total Posts : 442
   Posted 2/25/2009 12:20 AM (GMT -6)   
If you do have to have surgery. As soon as you are told it needs to be done ask to be sent to an ostomy nurse. They are a great help. Then ask the different pouch suppliers to send you samples. Everyone likes this brand or that. For me I settled in with convatec and love them.
Good Luck and hang in there.
Moderator for the Diabetes forum
 
Sigmoid Colostomy / Crohns / Type 1 Diabetic / Ostioarthritus /RLS/ Fibromyalgia / Asthma / High Blood Pressure / High Colesterol / Migraines. Ain't life a joy?



* I think it may be time for a colorful metaphor*


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 2/25/2009 5:59 AM (GMT -6)   

becellea74--I am sorry to hear you are having a difficult time right now...Has your doc suggested an ostomy?  I do have an ileostomy from my Crohn's Disease...I had small bowel, colon and rectum involvement with a rather nasty stricture in my rectum, not to mention many fistulas. 

I am very happy with my outcome and do not have a problem with my ileo...BUT it is such a personal thing...you could go to UOAA.org and check out some of the information on there.  There are links to the many manufacturers and there are some videos on taking care of a stoma.

 
 

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 2/25/2009 7:36 AM (GMT -6)   
Welcome, Bex. I'm sorry you're in a flare right now. I had Crohn's in my large intestine and rectum and had them removed 3 years ago. I got an ileostomy and have been very happy with the results. I am not sick anymore and have my life back.

I never had Crohn's in my small intestine, but there are people here, like Ohio, who did and are doing great now. I'm glad you found us here, because we understand what it's like to have Crohn's and also what it's like have an ostomy. Please feel free to ask us any questions you may have, and we'll do our best to answer.
Cecilia
Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again.


RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 2/25/2009 8:51 AM (GMT -6)   
I too am very sorry that you're suffering and facing yet another surgery.

I actually had UC pancolitis, which was throughout my entire colon and toward the end of my stint I knew had affected my rectum...OUCH!!! Anyway, when I had no other option but surgery I opted for a permanent ileostomy on my account because I wanted to be done with it all. I'm telling you this because though the idea of an ostomy is spooky and scary, I felt that it was my only option for a long and healthy life without many interruptions. Now that I have my ileostomy I do not regret my decision one bit. I wish that there were a way for us to have a glimpse of what it would be like post surgery so we can have our nerves and anxieties calmed. However, the best we can do is tell you that every thing will be okay, and that life with an ostomy is not bad. For most of us we have been given back our lives, our happiness, and our quality of life has just been renewed! I'm still in recovery from my surgery and am being forced to recover appropriately, because I will tell you that being UC free just gives me such a good feeling I want to be up doing everything I couldn't while sick. BUT...my body needs to heal and I am forced to lay around and take it easy.

There are really no words to explain how amazing my life has become now that I am disease free. I wish you the best of luck and please continue asking questions...we are all here to help you and support you.
: )  Robin
 
28 year old Mommy of an amazing 1 year old and Wife for 2 years!
Dx-May 2007 Moderate/Severe Pancolitis - failed all medications
 
Proctocolectomy w/ permanent ileostomy on 02/06/09!!!
 
"Your mind is like a parachute, it only works when it is open."  -Unknown


becellea74
Regular Member


Date Joined Apr 2008
Total Posts : 90
   Posted 2/26/2009 3:25 AM (GMT -6)   
Wow thankyou for your advice i wasnt sure you could have a bag when it was in the sml bowel,just worried as my job is a care aid for elderly and i am a single mum and only 34 but feeling so much better now that things wouldent be as bad as i thought,thankyou soo much keep you posted.

Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 2/26/2009 9:23 PM (GMT -6)   
Bex, cool name.
I think it would be easier with an ostomy if you are thin. You can easily hide it under clothes! (this is coming from a chubby girl)
Do you wear scrubs to work? I do. and they completely hide everything and are so comfy with my ostomy.
p.s.-my job is very physical and it doesn't affect the job at all-I be you'll do fine with your job :)
Chassity
28 yrs. old. married with one beautiful daughter (born 11/20/07)
-diagnosed with severe pancolitis u/c 2002 had total colectomy 12/19/08; emergency surgery due to abscess-had to redo ileostomy and switch to left side 12/25/08; 1/15/09 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
pred. taper, coumadin, carafate, prenatal vit., and pain meds
(ileostomy temporary....not so sure?)

"Things turn out the best for those who make the best of the way things turn out."


becellea74
Regular Member


Date Joined Apr 2008
Total Posts : 90
   Posted 2/27/2009 5:51 AM (GMT -6)   
went to specialist today what they found was loops in my sml b and its tethering and swollen inflaimed i guess, my disease is active anyway he wants to change my meds as iv been on the same ones for awhile if that dosent work then we will look at an operation in taking more sml b .But iam thinking that instead just getting the bag instead and getting it over with really ,its so hard because i am a single mum i hate leaving my kids even when they are in good hands i get anxiety attacks badly only in hospital well keep you informed thankyou again bex.x
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