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Before i was sick i had this problem on my teeth, my jaws weren't growing on one side so i needed jaw surgery for that and i needed braces after that because my front teeth were in the back and my back teeth were in the front. I had to see special doctors for that ever since i could remember.

I was diagnosed with ulcerative colitis when i was 12 years old. For the first month i thought it was period so i didn't tell anyone i was bleeding but at the end it was really severe and i couldn't stand it anymore the pain got worse so i went home early and i told my mom i was bleeding. I got lots of medicine but then i went to the hospital and there they told me i was diagnosed with inflammatory bowl disease Ulcerative colitis. I couldn't  eat for 2 weeks. They gave me so much medicine and 2 blood transfusions. After that i was fine for 2 years but i stopped my medicine because i thought i didn't need to take it anymore but i was wrong. My colon flared up and it got so much worse. I didn't know i had to take the medicine for the rest of my life, i regret it so much now. I missed so much school like for many months. I got steroid dependent and i tried remicade but my flare was so bad remicade didn't even work , some medicine they hesitated to give me cuz i was too young. The final decision was surgery, i cried a lot, surgery to me was scary. All i ever hear is the word surgery, that i need jaw surgery and they found a new problem in my stomach not related to the disease but it was something that i might need surgery for too, they found it while i had an MRI.

Then this old surgeon who was really nice told me that the pain i was having could go away if i have the surgery. So I decided that yes i will have the surgery. On Sep,2.14 the surgery was done and i had an ileostomy on the right lower side of my stomach. When i first saw it i was so scared its not normal to have you organs cut out and out of your body. I had the ileostomy for a year i had irritations there a lot so i took Benadryl everyday. The pain went away like the surgeon said and i felt so much better but it changed my life. I didn't want to go to school cuz the bag made so much noises and i thought people might make fun of me for that, my little brother kept asking whats that sound, i cried a lot over that. Then i didn't really mind over the sound but i had home schooling. I tried to go back to school but I couldn't i would have pain in my back if i sat more then 2 hours. So i sticked with home schooling. One year had passed and the surgeons asked me if i wanted the reconnect surgery/jpouch and i said yes cuz I didn't want the bag no more. So i was getting ready for the reconnect surgery and finished all the tests, MRI's, and after i was done with the pre surgical testing i had a blockage.

I went to the ER and they couldn't fix it so they said i have to take surgery for it, it was some where in May, and i did the ileostomy was on the same place, but i cried so badly.  I waited one year for that surgery and then i had to wait 2 more months. So i did then it came the time for my reconnect surgery. I had the surgery on July 22 and when i woke up in the surgery room i touch my stomach and i still had the bag. I was really upset if i had another disappointment i would have gone mentally crazy. Then a lot of stuff happened i couldn't  eat anything so i went back to the hospital and the skin around my stoma i had a lot of irritation and i couldn't  handle it. The whole month i was stuck in the hospital. Its as if i live there. Then the surgeons decided to have the last step of the reconnect surgery sooner.

So i had it on Sep.23,15. There is small whole on my stomach that they said will slowly heal but it looks so scary to me. And i have to go to the bathroom a lot and my bottom burns a lot. And now im here and for some reason im not happy idk why. I thought i would be happy if they took the bag away but i dont feel normal. Im asian and eating spicy food is like a daily thing but now i cant even have that cuz everytime i do my butt burns alot. I wish i was normal. Now im still 14

Sorry that this is so long TT^TT
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You might want to ask your doctor if there is a support group you could attend.  It is not easy going through this alone.  Where do you live?  All of your feelings are very real and not unusual.  Things are rough right now but they will get better.  Foods which are difficult for you now will probably not be so later on.  Patience is very important and sometimes very challenging to have.  Meanwhile, keep writing here.  You will find others who have gone through what you are going through now.  Best wishes!

I started with IBD when I was 11. That was 1982. Way less therapy back then for my problems, so at 19, I had surgery. I remember the challenges of being a teen and being "different."

 

My daughter is now 13, diagnosed with indeterminate colitis 2 years ago. Apparently it's going to run in our family to have this disease. ��

 

However, you have only had your surgery/takedown a short period of time. Try really hard to be patient. It's easy to want a quick fix, but truthfully speaking, this surgery helps us, but really isn't a complete "cure" or without its issues. 

 

Try different "butt" pastes to see what works. I tried a slew of different ones, right after surgery. Pretty quickly after, I didn't need much ointment, things got better. A&D was and is my fave, but I tried *everything* on the counter back then, til I settled on that. 

 

And yes, do see if they can hook you up with other patients with similar issues. Check Facebook and other social media sites... Pretty sure there's an IBD for teens one on there.  You're not alone, and all of this can be pretty taxing and scary. Most folks say it really takes upwards of a year to truly settle in with your pouch. My adjustment was a bit quicker than that, maybe 3-6 months, but we're all different; some need well OVER a year.  

 

Be be kind to yourself.  ❤️

You have gone through so much at such a young age.  The butt burn is caused by 3 things, it has been along time since using your anus that the skin has softened up, the waste has 30% more acid in it because of having no colon and you are using the restroom and cleaning/wiping it more.  In time your skin will become more accustomed to the waste and the number of trips to the loo will decrease.  You might want to back off on the spices to see if there is a difference but I'm guessing the real problem is caused by the 3 things.  I used Charmin Ultra soft or Ultra strong and you need to dab vs wipe.  You should also use some kind of baby wipe to make sure your bottom is really clean.   I had a sprayer that was attached to the clean water before it goes into the bowl, think like a sprayer at the kitchen sink.  I eventually got a bidet seat and it was nicer.  My favorite but cream is Calmoseptine.  The hospital's stoma nurse gave me my first tube and told me in the beginning to put a lot on to protect my skin.  I tried other's and never found a better one.  We are all different.  What works for me best might not be what works best for you.  Rachael above has a different favorite one.  

 

You are through the worst of it.  Your stoma is gone. The surgeries are over.  It will take a while before your j-pouch, which is made out of your small intestines, figures out what it's new job is.  Before it was to pass the waste onto the colon.  As a j-pouch it's got to learn to hold it. Hopefully your doctor has talked to you about using Metamucil and Imodium products.  I really needed them both for months after my surgeries.

 

Take care

Hi Mei,

I am so sorry that you are suffering so much. I understand how hard it is to be so young and so sick. I was sick from the time I was a small child and understand how scary it is and why you did not want to go to school with the bag.

When I was a child they did not have j pouches (the pouch on the inside of your body) so I had a bag called a colostomy. I had to wear it for over a year. I did not go to school then but waited until they fixed me.

The hole that is left on your tummy will close by itself. You do not have to be scared. It will take about a month or 2 and then it will be finished. You just have to keep it clean, cover it with something soft and make sure that no dirt gets inside of it.

You spent a lot of time in the hospital and when you are sick that feels like a very safe place. Everyone else is either sick like you or a doctor or nurse who are there to help you. No one is mean to you or makes fun of you. Then you come home and you don't feel  so safe anymore. There is no one there who really understands you or how your body feels. Your family is very busy with other things. So you become sad. That is normal. The sad will stop as soon as you are finished healing and get back to a normal life. That will take a little bit of time. It is all normal.

Now you have a new j pouch and you will have to learn how to live with it. It is like learning a new subject at school. 

First you learn the basics and then you study and until you understand how it works. Once you understand you can control the results.

You no longer have a colon so your J pouch has to do the job that your colon did before you got sick. When you eat food it will go through your body faster than before and it will land in your j pouch. It will not be hard or thick like before you got sick but kind of liquidy. That is why you go to the bathroom so much. Because it is like liquid and it cannot stay in too long (for now). 

The liquid has a lot of acid in it and it is the acid that burns your bottom. 

There are special medicines that your doctor can give you to make your poo less liquidy so you do not have to go to the bathroom so much. The less you go to the bathroom the less it will burn you down there. 

You can also put a cream on your bottom when it burns you (it is white and a bit sticky but it protects you very nicely)...you can try the same cream that they use on little babies when their bottoms hurt and burn. Ask your mother to buy some for you. 

If you can get a water bottle with a squirt top (kind of like the water bottles that you use when do sports..They squirt) you can fill it with water and use it to wash your bottom every time that you go to the bathroom. It will help a lot with the burning. If you keep it really clean down there the burning will almost stop. 

In a little while once your bottom gets used to the new changes it won't hurt so much. 

For now you can try those things to see if they help.

I do not know if your doctor can help but if you ask him/her they may be able to find someone for you to talk to who has had the same surgery. It helps a lot to have friends who understand. 

Once you feel better you will want to go back to school. For now you can continue to home school until things stop hurting.

Everybody here understands and is happy to help you.

Sharon

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