22 years old in need of friends with ostomy/UC

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Gribby88
New Member


Date Joined Jun 2011
Total Posts : 17
   Posted 6/24/2011 7:58 PM (GMT -6)   
Hi my names heather im 22 years old and ive been suffering with ulcerative Colitis since im 15 years old. . . for the past 7 years i got lucky without having to get surgery up until 3 weeks ago i now have a ileostomy and i hate it, over the years i was never able to find some1 around my age who suffered from UC so i never had any1 to relate to now i have UC and a ileostomy and i need a friend who can relate to me more then ever because no1 i know understands what im going thru because they dont have to go thru what i do.

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 6/24/2011 9:28 PM (GMT -6)   
Hi Sweetie......There are a few young people around your age who will probably answer your post. I am sure they will be more than happy to offer advice and may even be available to talk to. Try and spend some time reading through some of the threads here..you might find some answers and some consolation.

3 weeks is not a very long time after your surgery and you are definitely going to have all kinds of feelings and emotions coming to terms with this. This is normal.

Ultimately as time goes on and you adjust, I am sure you will find a way to accept this and the best part is you are finally out of pain and you can now be in control. My husband suffered almost as long as you did and I know it was very tough.

Right now this advice doesn't make a whole lot of difference while you are trying to come to grips with this but you will adapt in time. I am sorry you had to go through this.

Heather, does your Ostomy nurse have any local support group info available that may have some younger people you can try to talk to?
God Bless.
Wife of 64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) & now pain free

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 6/24/2011 9:56 PM (GMT -6)   
Hi Heather!!! Well, I am no longer 22 yrs old, in fact, I am more than double that. BUT, I had my ileostomy done at age 24. I have to admit that I wasn't exactly super fond of the idea, but once I got weaned off of the mega doses of drugs for CD, and began to live my life and ENJOY being able to go places and eat food again, it was no longer an enemy. I am so glad that I had mine done to be rid of the pain of the disease. Please hang in there and know that a lot of us have walked a few miles in shoes just like yours.... we are here to help you all that we can with suggestions and tips and chatting....

One thing .. if you have access to a support group, please take advantage of it. I didn't think I would like going to one, but I will have to admit that it was the best step that I took right after surgery.

I'm sure others will be along to post a response to you as well... hang in there.

Hugs,
CD diagnosed in 1979. Ileo in 1984. No recurrence of CD! Some issues with adhesions still.
Husband diagnosed with ALS (Lou Gehrig's Disease) March 2008 - taking one day at a time, enjoying our time together.

mcka
New Member


Date Joined Jan 2009
Total Posts : 3
   Posted 6/24/2011 10:24 PM (GMT -6)   
hey Heather,
I am also 22 just had my surgery on May 2nd, it definetly has been an adjustment living with the ileostomy, and I can't say that I am fully comfortable with it yet. I was diagnosed at 16 with Crohn's disease and just found out when they tested my colon that it was really UC. They are giving me the option to have it reconnected.. is that an option for you?
I only know a few other people with CD or UC, but no one who has gone through the surgery.
If you want to talk I am here!
Devon

Gribby88
New Member


Date Joined Jun 2011
Total Posts : 17
   Posted 6/24/2011 11:48 PM (GMT -6)   
hey id love to talk! i really need some1 who understand what im going thru. its not an option yet hopefully my colon will get better in time and it will be.... i dont think i could do this for the rest of my life it really isint fun at all and were both young i wanna be able to have fun with out worrying about my bag lol
mcka said...
hey Heather,
I am also 22 just had my surgery on May 2nd, it definetly has been an adjustment living with the ileostomy, and I can't say that I am fully comfortable with it yet. I was diagnosed at 16 with Crohn's disease and just found out when they tested my colon that it was really UC. They are giving me the option to have it reconnected.. is that an option for you?
I only know a few other people with CD or UC, but no one who has gone through the surgery.
If you want to talk I am here!
Devon

nettiemoore
Regular Member


Date Joined May 2010
Total Posts : 89
   Posted 6/25/2011 12:25 AM (GMT -6)   
Hi Heather!

I'm 21 and I had my surgery about a month ago, so I definitely understand what you're going through. I'm also having some trouble adjusting to the ileostomy, but then I think about how ill I was with the UC and I realize that I'm so much better off. Before my surgery I was stuck in bed for almost 4 months in constant pain and with hardly enough energy to walk up the stairs. Now I'm out running around with my friends and riding my bike. It also helps knowing that this is all temporary and I'm eventually getting a j-pouch. Have you looked into that?
21 years old
UC since September 2008, diagnosed in April 2010

Going for a J-Pouch in 3 steps!
Surgery #1 - May 25th, 2011

nettiemoore
Regular Member


Date Joined May 2010
Total Posts : 89
   Posted 6/25/2011 12:26 AM (GMT -6)   
Oh, and feel free to email me! My email address is on my profile page.
21 years old
UC since September 2008, diagnosed in April 2010

Going for a J-Pouch in 3 steps!
Surgery #1 - May 25th, 2011

Newone
Regular Member


Date Joined Apr 2011
Total Posts : 58
   Posted 6/25/2011 5:29 AM (GMT -6)   
Hi Heather.
My name is Desaray and I'm 27 years old. I've had crohn's disease since i was 15 and have had one surgery before getting my Ileostomy on April 19th. I know exactly what you are going through. My surgery wasn't planned. Before i got it I was sick for months until one night it landed me in the Emergency room with the result of a major blockage in my colon. My intestine was so swollen nothing was able to get through and it was painful and annoying like you wouldnt believe. When I got the news that I had to get an Ileostomy I felt like my life was over. I cried ALL the time. Even now i still get really emotional about it. I do things throughout the day to distract myself but as soon as i think about what I have I feel like freak and feel that no one will ever love me the way I am. I came across these forums in the hospital and they have been a Godsend. I dont post much but just reading posts and ppls responses have helped me so much. I think its absolutely amazing how strong everyone here is and wish I could be like them. I'm hoping for a reversal in a few months but it has definately been a rough 2.5 months. Trust me when I say i know exactly what you are feeling. If you ever want to talk you are more then welcome to reply back or even write me an e-mail. Ive never been fortunate enough either to meet anyone my age with crohn's. I have a friend whom i talk to about a lot of stuff but it's not the same because he doesnt know what i go through on a daily basis. From what I've read on these forums having an Ileostomy isn't a bad thing and a lot of ppl have gotten their lives back. One thing I did when i felt better after my 6 weeks was up of eating very plain food was eat a big bowl of chocolate icecream everyday for a week! Never been able to do that before without having a very bad stomach ache afterwards. Things do get better. Everyday I become more and more comfortable with having my Ileostomy. I would love to hear from you.

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 6/25/2011 7:48 AM (GMT -6)   
Gribby88...looks like you found quite a few young people here! I would also suggest attending a local ostomy support group meeting...I have had my stoma for a LONG time and just attended my first meeting and had a great time. Definitely not my last meeting:) since there are so many nice people (of ALL AGES)!

If your doctor hasn't mentioned a j-pouch, you may want to look into one and ask if it is a possibility for you!
formally known as OHIO76 ~ honoring my daughter's passion!
Crohn’s dx 1989
some terrible years before my temporary ileo in 2001
Proctocolectomy w/end ileo in 2008
...wish I knew then what I know NOW!

ENIGMAWRAP
Regular Member


Date Joined Nov 2010
Total Posts : 422
   Posted 6/25/2011 3:42 PM (GMT -6)   
Gribby:

Sorry to hear about your story...I couldn't imagine having UC at 15 years old..I don't know how I would have gone to school with UC!

I am not 22...(just turned 43), but began having UC symptoms when I was 29...

If you are only three weeks after surgery...1) you still have a ways to go, and 2) congratulations!!!!!! You are WELL on your way...

Many have suggested finding a support group. Hopefully, there is one within an hours drive of you...this site is great, but having people to go meet and talk with is another story entirely... I just met some great folks at another ostomy group (the third I've been two..all three are an hours drive, or more, from my house)..and, all had ostomies of one type or another....

Go to the UOAA website and start there..send an e-mail to the site and that will help things move along quicker as far as the search....

jimmy

Benisone
Regular Member


Date Joined Jan 2009
Total Posts : 48
   Posted 6/25/2011 5:43 PM (GMT -6)   
Hey Heatther I'm Ben, and I am a 48 yo, but I had crohn's since I was a 18 yo. Recently I've a made decision to have an ilieostomy(reversible), plus reconstrutive small and large bowel resection. Happy that I got it done. Now I'm going to make
the best out my life and start enjoying it!

betsaronie
Regular Member


Date Joined Oct 2007
Total Posts : 318
   Posted 6/27/2011 3:20 PM (GMT -6)   
Hi there! I was diagnoised with UC at 22 and had an emergency colostomy placed at 25. My bowel perforated and i was left with no choice other than death. 6 months later, at 26, I had a Jpouch formed and the rest of colon and rectum removed. That was this past March. Less than 2 weeks ago I had a take down and am now living with my Jpouch. (Quite happily i might add) It took me about 2 months to adjust and be ok with my colostomy. And another 6 weeks before I was happy about it. What changed from being ok to being happy was I was finally able to live! I actually could go to work for 8 hours without the anemia making it impossible for me to move. I went to a birthday party where I was standing for 6 hours. I went to a cocktail New years eve party, and even wore a tight sexy black dress. No one knew I had an ostomy until I told them. And I wasn't shy about it. My surgery wasn't a choice, but it was a blessing. I had absolutely no quality of life before hand. I was addicted to Prednisone, so much so that it wasn't really working. I was sick for months at a time, I always felt tired from my anemia. That all disappeared after I adjusted to my new plumbing.

Give yourself some more time to come to terms. It's ok to grieve for your loss. Hell, I cried every day for like 6 weeks! It gets easier. Especially once you have found an appliance system that works for you. My ostomy was located high, near my belly button so discretion was key. I used adhesive coupling Coloplast Sensura, wore camis or tall undies and my bag disappeared! Once you are fully healed you won't even notice its there. all of the sudden you will have a day where you are able to forget about it and it will all just become less of a burden. Mine was after I found my new system and went a whole week without changing. It came changing day and I went, whoa, its been a whole week. I completely forgot!

Yes the new body image can be a problem, but only if you let it. You are not the same person you were, but you are better! You no longer have this disease holding you back. I was able to talk to my best friend's mom about her experience with an ileostomy (she had rectal cancer and was reconnected) and I had this forum and a whole bunch of supportive friends. Lean on those close to you. It doesn't matter that they haven't had the same experience as you, just that they care about it. To find other young people like you visit yodaa.org/ Its for people under 30 with diversions. They area affiliated with uoaa.org which you can also visit to find local support groups. www.meetanostomate.com/ is another way to find people in your area. As a UCer, remember that Jpouch is more than likely an option. As long as they were able to preserve your sphincter muscles you should be a candidate. But even if you can't or don't go that route, you can still have a wonderfully fulfilling life with an ostomy. If i had to go back to it, I would in a heartbeat. You've come to a good place here; I wish you all the best!!
-diagnosed with UC Dec 2006 at 22
-allergic or intolerant to all 5ASAs, sulfa and 6-mp
-emergency transverse colostomy on 9/13/10 from perforated colon
-J-pouch surgery step 1 of 2 3/21/11
-Takedown 6/13/11

Brian84
Regular Member


Date Joined Mar 2005
Total Posts : 457
   Posted 6/27/2011 4:45 PM (GMT -6)   
Hey Heather Im Brian and I just turned 27. I know it's a lot to deal with, but you will get used to it. It's a lot better having an ostomy and eating what you want then to be sick, drugged up and in the bathroom all of the time.
This is a great forum and everyone helps each other out like family. Keep your head up!
My email is in my profile if you want to talk.

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16727
   Posted 6/27/2011 4:50 PM (GMT -6)   
I am so happy you've found some people Heather. I knew you would!!! Keep in touch :)
Co-moderator: Ulcerative Colitis
Diagnosed with Pancolitis & Migraines. Battling Extreme Exhaustion | Past Meds: Prednisone + Cortifoam + Asacol (3600) + Canasa + Rowasa + 6mp + Allopurinol
Currently: Asacol (3200mg) + 6mp

rita5287
Regular Member


Date Joined Feb 2010
Total Posts : 42
   Posted 6/27/2011 8:28 PM (GMT -6)   
Hey. I'm 26. I just had my surgery 1mnth ago. I was diagnosed with UC n 2009. It's been very hard! I feel ur pain! But having the surgery was the best choice for me. No more going to the restroom 20-30 xs a day. No mor ER in n out of hospital every other month for 1-2 weeks at a time. No more 20-30 pills a day!
But now with the bag n post surgery pain it's different n still sucks too. But not as bad! It does get better with time n trial n error. Especially finding the rt bag n system so u have no leaks n skin irritation ect....
Email me for questions.
Hope u feel better. God never gives us more than we can handle. N all that we have been thru says alot about us!!
God bless u.
Diagnosed w/UC 4-7-. Went from proctitis only in rectum to full pan colitis. No Meds have worked,Been hospitalized 3xs n 5 mnths. Have Gastritis also. Current Meds: pred 20mg 7days tapper to 5mg. Nexium 40mg. Xanax1mg.had proctocolectomy on 5/26/11. Went really well despite code blue! Healing now. Ostomy is gonna take sum getting used to! Nxt surgery n 3mnths!

RiddleMeThis
Regular Member


Date Joined Nov 2010
Total Posts : 269
   Posted 6/29/2011 11:37 PM (GMT -6)   
Hi Heather! You're not alone! I'm 21 and have and have had my ileostomy for almost a year now.

There's plenty of people here to talk to that will give you support. I'm not on here as often as I'd like anymore but just give me a shout out and I'll be on here in no time!

Sarah

Lasardo
Regular Member


Date Joined Jan 2011
Total Posts : 373
   Posted 6/30/2011 1:34 AM (GMT -6)   
Wow heather,
Look at all these people that understand! Reading these responses has even helped me. We have talked on chat before and was so happy to meet you. I wonder if you are doing better both emotionally and physically. I just know when I got mine, I got my life back, no more diapers and panic attacks about having an accident. Have you figured out the swimming thing yet? And remember don't worry about relationships at all I have been with my boyfriend for 7 years.. I was honest with him from the beginning and he has always respected that.
Looking forward to talking to you again,
Leslie
Crohns dx,Pelvic Floor Tension,Pelvic Adhesive dx,Interstitial Cystitis,Ileostomy,Severe Scoliosis,Chronic Pain,Arthritis,BP1,Anxiety/Panic attacks,Several reconstructive surgeries..

rew
New Member


Date Joined Jun 2011
Total Posts : 1
   Posted 6/30/2011 12:01 PM (GMT -6)   
hi, heather, im rew 24, i had my illeostomy done 4 years ago now, not like most, i did not suffer from u.c, so when i fell ill, it was a complete shock that i needed the op or i would die as i was halfway through completing a sports degree at university! ( have now completed it :) |) if you need anyone to chat to i been through it all, still play sport, football,kayaking, surfing, the only thing i stop was swimming but that was down to my own choice tbh, nobody unless i have told them knows about me having an illeostomy and it hasnt stopped relationships, tbh iv had more partners since having my op then i did before! just keep smiling pm me if you need any more info or support
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