Community Forum

hi my name is michelle and i have had crohns since i have been six years old.i will be thirty this year.this is the first time i have ever had to have surgery before.i had to have part of my colon taken out due to a doctors neglect and now have a colostomy bag they say temp..i have had this thing for a month so far and i cant stand it.i just dont know how to get use to it.i have just been so depressed since the surgery.i feel like my life was stolen from me.any suggestions on how to get through this

 Reply posted for JNA.

also...

my eating habit is pretty normal but it varies with different people. i have a normal routine, breakfast lunch dinner.. and i can tend to eat quite a bit for i have a fast metabolism. can't eat as much as before my surgeries but still pretty normal. i recommend that you talk to your gastroenteritis about it.  before my surgeries i weighed 128 pounds and after all 5 surgeries i lost 38 pounds and weighed 90 pounds.  i currently weigh at 113 pounds so im gaining slowly. its been about 10 months since my last surgery so its a slow process. i recommend you continue eating small meals because thats best for it helps the intestines work at a slow pace and doesn't have to digest large amounts of food at once.  working out is also a great idea to gain weight. walking, jogging, lifting small weights, and keeping your muscles flexible.  multivitamins are also a great option.

you also asked if i have problems with feeling like my abdomen feels like its pressured.  "yes it does. most of the time. maybe because the surgeries idk. but i do realize its been this way after the surgeries." i hope i'm helping you with your situation. feel free to ask anything else you may have questions about. i'm glad to help.

-shawn lobaugh

 Reply posted for JNA.

hey..
well about the eating situation.. you have to watch what you eat.. especially carbohydrates and starches. they tend to bind the intestines so that's not good. and try to avoid excessive amounts of raw vegetables and nuts for they are hard to digest and are *** the intestines especially people with bowel diseases.  how do i know?? well, i've had 5 surgeries and have been through a lot in 2009 and my after surgery life is quite scary.  i believe what you think is gas is in fact gas. because i have a lot of situations with gas but idk if they removed any of your bowels. i have my colon removed and still blessed not to have the bag permanent. i had reversed but still til this day am afraid anything could go wrong but i have to stay positive and pray about it.  i really hope your situation isn't permanent. i know how it feels and i understand its horrible thing to live with but at least your still capable to live a successful life with or without the colostomy bag.  if you have any questions feel free to ask and i'll try my best to help and encourage you. god bless!

 Reply posted for michelle L D30.

Hi there! Sounds like we're in the same boat. I just had colostomy surgery at the beginning of March and am adjusting to it all. Like most, I fought and fought as long as I could NOT to have it done... but eventually, I had to give in and accept the inevitable. It's temporary, so I can think of that to accept it - but at the same time, I don't want to get my hopes up that I'll get rid of it, you know? Part of me just figures I might be stuck with it and better get over it and get used to it.

So, from one person to another who's at about the same stage, a question for you: Can you eat normally now? As in, like you did before surgery? It seems my stomach must have shrunk to about a quarter of its original size... or something. I'm not sure, to be honest. But I eat such a tiny amount and am so full. And then hungry an hour later... and so on. It just always feels like there's so much pressure in my abdomen. Are you experiencing this? I don't know if it's gas that just needs to be forced out somehow, or what! It's driving me crazy. My abdomen just always feels so FULL. It's like my insides are too big for me - does that make sense? Probably not. Ugh. So frustrating. Anyway, I've lost another 10 lbs since having the surgery, and can't eat enough to gain any weight back.

Any feedback from anybody who's gone through all of this is appreciated! Just wondering if there's light at the end of the tunnel... will I feel like the old me sometime soon?! Here's to hoping.

 Reply posted for michelle L D30.

Hey Michelle,
   My name is Shawn Lobaugh and im from Altus, Oklahoma.  I know how your feeling. I've been there.  I'm currently 20 years of age and i saw you are going through some circumstances in your life and i know its really tough. idk how things are going with you now since you posted this back in february but i figured i can help to an extent.  i was diagnosed with crohns september of 2008 and have had 5 surgeries from december of '08 to june '09 and i also had to have the colostomy bag for 6 months. i know its horrible but just stay positive. and i also went through a stage of depression. but be with people, they can help. idk how you are with your personal beliefs with God but i just got to get to know more about you. i prayed and prayed about it and just stayed around the people that loved me most and they and God helped me get through it.  just think the bag is temporary thats a huge positive side. but i know you'll have to go back into surgery to reverse it (if you hadn't had surgery yet) but stay strong. write back if you'd like. i have a testomony i can share if you would like to hear it. hope all is well. stay strong. live life with no regrets and pray about everything.

e-mail: shawn_lobaugh@hotmail.com

 Reply posted for mincon.

Hi Mindy!

I was actually misdiagnosed with UC in 1989, but I decided on the j-pouch surgery because I was constantly sick with pain, bleeding, diahrea.  I had a 3-year-old and no quality of life.  I couldn't even get the energy to play a board game with my son. 

After a three-week hospital stay and nine months of trying unsuccessfully to get off the steroids that were causing more problems, I made the decision to have the surgery.  As soon as they did the pathology on the colon, they said more than likely I had CD instead of UC.

That was 13 years ago, and even though it was a tough decision to make and I've had a few problems since, I still say it was the best decision I ever made.  Even with the strictures that I've developed, I still feel so much healthier today than I did living with UC/CD for eight years. I can exercise. I can go for long walks with my husband.  I can go shopping without first having to know the location of every restroom in the store!

My strictures didn't start to cause problems until about two years ago.  I found out that I had a stricture at each end of the j-pouch.  The lower one is easily stretched with manual dilitation.  I've had the other stretched with balloon dilitation several times until December when my surgeon said it wasn't getting better and should be fixed with surgery.  She also found another stricture at my original ileostomy site.

As far as other problems with the j-pouch...I've had 2-3 episodes of pouchitis.  My surgeon now recommends regularly taking the antibiotic Cipro to help reduce the growth of bacteria in the pouch.  I've felt much better since starting that.

After my next ileostomy reversal, I will most likely return to taking Humira injections to help keep more strictures from forming.

Overall, I don't regret my decision to have the j-pouch surgery.  I know, without a doubt, that I would have zero quality of life without it.

Good luck!

Kim B.

 Reply posted for mincon.

hi mindy,

i have had crohns my whole life practically but never really had to have surgery till recently.i will say i hate having a colostomy bag so i am totally looking forward to having this reversal surgery.i hear good and bad things about the jpouch too but i think it would honestly give u a better quality of life so u can do more things.i know i am limited on the things i can do and i hate it.so i am looking forward to it.i am on facebook if u have an account my name is michelle dutton i would be happy to chat with u.anything i can do to help i would be glad to

 Reply posted for clparrott80.

Sorry Michelle my computer went crazy.  For me it was a tough descion to have the ileostomy but I'm glad I did or I would be dead!  I have had complication after complication with this and I can say that some day I HATE IT.  This is not the way I though I would be at 29.  I can't work because of the complication, I can't keep bags on, and I have open sores around the stoma.  This doesn't make me happy.  I look so diffrent then I used to look, but that is ok I'll take it.  I am a very optimistic person so I get over everything that has happened.  Keep your chin up if you can.  I hope the colostomy will be reversed.  Best of Luck!!!  I hope this helps just a little bit.

 Reply posted for michelle L D30.

HI Michelle!  I am 29 years old and have had Crohn's since I was 9 years old.  Last year after being in the hospital 11 times and I was also bleeding out and had to have 9 bood and plasma transfusions I was faced with the decision to have a perm ileostomy.  I have had all my colon, rectum, and anus taken out.  For me it was a tough descion but I am glad I did it or I woul

 Reply posted for kshb.

kshb,

You have Crohn's and a jpouch would you mind private messaging me if this site has that?? I am trying to decide whether or not to get the jpouch as I have CD and hear very scary things about CD and the jpouch. I would appreciate any insight you may be able to offer.

Thanks,

Mindy

 Reply posted for kshb.

thank u.it really helps to know i am not alone in this

 Reply posted for michelle L D30.

Hi Michelle!

I had my first ostomy in 1997 when I had j-pouch surgery for Crohn's Colitis.  Fortunately, it was reversed two months later.  It was tough to get through, but the knowledge that it was temporary helped a lot.

I never wanted to go through that again, but last week, I had a second surgery to remove strictures in the small bowel and once more have a brand new ostomy--temporarily.

I was 28 when I did this the first time, and 41 this time.  Being young almost seems to make it worse, but I think that's actually a plus for us.  Our bodies are younger and even though we're fighting a disease, that's definitely a bonus in the recovery process.

In 1997, I didn't have anyone to relate to or talk to.  Most support groups were for people much older than me.  This time, I've spent a lot of time on the CCFA Community, and it's helped a lot.  I realize I'm not alone, and I'm not the only young person going through this.

Just think "temporary".  You're surviving your disease, and you can survive anything for a few more weeks.

Good Luck!

 Reply posted for TED.

thank you for listening and for ur advise i appreciate it.i have been having a really hard time with this but its nice to know that there are people i can talk to who understand how i feel.hope all works out for u.god bless ill keep u in my prayers

 Reply posted for michelle L D30.

hI

I  some what know how you feel I had my surgury Last Feb 2009 and my reverse in Aug 2009.  It was very very hard in the begrinning. But hang in their Talk to the Drs  . The reasons for my surgury has returned I may have had the reverses to soon.  I deal with it with allot of humor on the outside and told myself on the inside that life is too great to waste without going forward all the time . I started hiking more I made a few trips to a local used clothes store to help with the look. It does get better !! I wish you the best.