iliostomy and chrones info

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steph16x
New Member


Date Joined Jul 2006
Total Posts : 2
   Posted 7/31/2006 5:19 AM (GMT -7)   
yeah  hey all!! im steph! im 15 y/o , ive just been diagnosed with chrones disease and just been discharged from hospital. ive recently had the reversal of my iliostomy and everythings lookin good!!. ive been through the mill with it all and all i can say to anyone goin through something similar is KEEP YOUR HEAD UP HIGH THE SUN COMES OUT EVENTUALLY!!! chrones isnt an easy disease to cope with for anyone at my age or even older ! ive had 6 operations , septasemia in my blood and my left lung collapsed in the space of 3 weeks , so anyone whos thinkin of givin up . dont be so silly coz IF I CAN DO IT SO CAN U .
          
ID LIKE TO HEAR SOME OF YOUR STORYS OR MAYBE HAVE A CHAT WITH SOMEONE SO POST A REPLY ND ILL GET BK TO YA !! X

PURPLE901
Regular Member


Date Joined Oct 2005
Total Posts : 93
   Posted 8/15/2006 12:51 AM (GMT -7)   

I just had surgery in March where they took my entire colon and left me with an ileostomy.  My surgeon has offered to create the "j pouch" and reverse the ileostomy but he wants me to take some time before the decision and he's not pushing me.  I'm still undecided but it feels great to have a surgeon like him, he's apparently very well regarded and I think he has great bedside manner.  I certainly feel more free in some ways but I'm not quite 100% comfortable with the ostomy.  In any case I certainly know what it feels like to be put through the ringer.

Crohn's is certainly not a disease that's easy and also it's hard because a lot of people don't understand, not a subject that people are comfortable talking about.  In my case I feel fortunate that my only family is quite supportive, and not only that, I married into a "Crohn's family".  My husband mom has it and an ostomy and so does his uncle.  Much as the gory details are not dinner conversation, everyone understand what is going on at least.  As for my wonderful husband, the disease and the ostomy itself were very familiar to him and it's all he's known with his mom.  He was encouraging before the surgery for the ostomy and it doesn't bother him at all.

Hang in there!!


Crohn's Disease since 1993, colon removed March 10/2006 with possible J pouch surgery ahead.
Asthma since 1996.
Pulmonary Embollism July 2006.


Tintin
Regular Member


Date Joined May 2006
Total Posts : 37
   Posted 8/16/2006 5:18 PM (GMT -7)   
Hi! I have Crohn's for 20 years.  It was originally diagnosised as Colitis.  I had  J-pouch surgery about 10 years ago but had experienced repeated obstruction problems during the last 4 years.  It didn't help when I had very uncaring G.I. doctor and an E.R. doctor who was totally not familiar with Crohn's Disease.  I almost died from it.  I ended up turning into an Ostomate in Feb. after repeated hosptializations and went through ileostomy surgery.   It is a life style that I have to get use to (still working on it) but so far I don't have any complications (except two obstrutions after I was discharged from home.  They resolved on their own)  I was told that if they knew I had Crohn's, they woudln't have performed the J-Pouch on me in the first place.  I am wondering why you are all talking about getting J-pouch ? (I mean the Crohn's patients)  If it works for Crohn's patients, it would really be great!
 
I am glad that some of you have great doctors and supportive family.  My current G.I. doctor is quite good but I don't think she really understands what it feels like to have the disease.  Fortunately, I have a very supportive husband and good friends I can talk to.  Hope all will good well for all of you!

PURPLE901
Regular Member


Date Joined Oct 2005
Total Posts : 93
   Posted 8/18/2006 12:19 AM (GMT -7)   

My surgeon did my surgery and waited for the pathology to come back to decided if I was a candidate for the j pouch.  He called the disease "indeterminate Crohn's colitis" and even though there is a 30-40% chance of the disease returning he is willing to do the j pouch for me.  I still haven't decided what to do and I think I should wait to see how I feel after I have become completely comfortable with the bag.

Sorry if I'm not making much sense, I'm sooooo tired tonight and the doc gave me 10mg diazepam to knock me out!!!  I'd say its working.


Crohn's Disease since 1993, colon removed March 10/2006 with possible J pouch surgery ahead.
Asthma since 1996.
Pulmonary Embollism July 2006.


Tintin
Regular Member


Date Joined May 2006
Total Posts : 37
   Posted 8/18/2006 4:11 PM (GMT -7)   

Hi! Purple,

Thanks for your reply.  Hope you got some good zzzzz last night.  My experience with J-Pouch was good for the first 3, 4 years (with an initial bout of pouchitis which was cured by Cipro).  I hope you are recovering well from your recent surgery.   I too have been taking oxazepam to help with sleeping.  I guess I am always worrying about having accidents with the pouch.  After I get up to go to the bathroom, I have a hard time going back to sleep.  Do anyone of you out there have the same problem?

I am also concerned about the tightened airport security.  I can't imagine going on board without my bottled water (to rinse out the pouch) and my supply.   I am reluctant to use the water from the airplane because I have read that most of it is contaminated.  I wonder if anyone of you have experience with the new measure?  BTW, I find dropping a couple of tic tacs in the pouch really helps cutting down the smell.

Sometimes I feel really sad and lonely with my situation.  I am very thankful to all of you for sharing and in understanding our daily difficulties.  Good for you Steph for your new procedure and good luck to you Purple!

 


gfkak
Regular Member


Date Joined Sep 2006
Total Posts : 44
   Posted 9/2/2006 11:02 AM (GMT -7)   

im 22 and have had crohns for about 13 years now it took the doctors about a year to work out what was wrong with me in the first place so many test who knew they all excisted lol.

aventually they work out i had crohns by a collonoscopy (if thats how u spell it) which they stuffed up when i awoke i was in a great deal of pain which they repleid its normal i couldnt walk i kept having to crawl my way to the bathroom at the other end of the ward aventually the decided (im sure it was after my fathers choice words to them) that maybe something wrong and after a scan the realised that my bowel had been perferated during the colonoscopy which of course resoulted in another opperation to fix it. my over night stay was then turned into a one month stay in hospital.

i was put on steroids after this which now i can thank for my osteoperoses and possibly the arthritis as well. i was good for about 2 years then fell sick again and some how managed to catch golden staf which was another month in hospital.

then once again i was good for abit then id get sick then id be on steroids again and become better this went on until i was about 18 when i started to have problems with abcesess and fistulars i had that many opperations for that i lost count i broke my wrist badly that year to which i had to get an opperation on to which really didnt help things much but after 5 months the arm was fixed and doing pretty well.

Then that finally stopped and then 2 years ago i became really sick again i was down to only 35kg if the wind blew i could have flown away lol. i ended up having 30cm of my large intestines removed i was out of hospital in just 6 days and filling great but learny quickly that laughing sneezing or coughing were going to hurt for a while.

then last year around april i had a bad break up with someone and became really stressed out which flared up my crohns once again (pfft men lol) after a almost a year of telling them i was sick again i finally went into hospital by this time i was real bad i was only 34kg and in constent pain the doctors had the "great" idea of just giving me steroids and pain killers and sent me home after 3 days which i lasted 3 days out of then went back in where they kept doing that for another 3 weeks. i knew from the begening i was in for another opperation how ever it took them a little longer to work this out.

i was told that the illiostomy may have to be put in if things were real bad but they all said "theres a risk u wont wake up from the anesthetic" so i thought ok it a possability but its looking good so far then next thing i know i have someone introducing herslf as a stormal therepist which i had never heard of and that she wanted to mark on my stomach where my stoma will be. this horrified me i was in complete shock they talked about it as yeah its possible but i doubt it next thing i know its ment to be a sure thing i was not prepared at all for it any way the opperation went well iwas out in 6 days again but feeling pretty lousy about the whole situation i went home complately un propared for what was a head of me i had never seen anything about illiostomys b4 and had no idea what i was doing but luckerly a friend i met when i was in there use to have one and completely saved me and helped me work things out she was a life saver.

my opperation was in april this year and i seem to be doing alright i do have my bad days though its leaked twice today which is annoying but ill get through it hopefully i ll get a good night sleep tonight i do get paranoid about it leaking sometimes after a day like today and have alot of troble sleeping. i just recovered after having all 4 wisdom teeth removed as well just 2 weeks ago and im feeling ready to party again lol

i do like hearing about others peoples storys as well its nice to know sometimes that your not the only one.

ok i think ive written enough lol night mwah

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