Giving Advice to Parents.

[theri1]

Hey, I'm 19 years of age from England.

I was diagnosed with UC around 5-6 Years ago and was never in remission, no drugs ever got me into full remission except Steroids, I'm now living with an Ileostomy which i hope to have reversed into a pouch within the next year or two.

I made this thread to just try and give advice to parents as my parents did not get much advice from other people.

Ask me anything about UC and Ileostomys. :ybiggrin:

 

[Jmrogers4]

Thank you theri1 for putting yourself out there for us and giving us perspective from the other side and Welcome to the forum

 

[upsetmom]

Welcome to the forum and thank you theri1

You mentioned that your parents never got any advice....same thing happened to us.
The DR told us my daughter had crohns disease and that she had to take tablets for the rest of her life....he never explained anything or answered any of my questions.
It was up to me to research about this disease and that's when i found this forum.....Ive learnt so much on here..:ysmile:

 

[Tesscorm]

Thanks theri1!!! It's so nice of you to share your experiences with us... we learn so much from one another but you'll add a whole new perspective! And I'm sure we'll learn so much from you!

I hope you're doing well!

 

[Devynnsmom]

Thats really good of you theri1 ! I'm sure hearing things from your perspective will be great!

 

[Crohn's Mom]

Hi Theri and welcome !

Thanks for putting yourself out there and wanting to help.
My daughter, also 19, had an ileostomy for 9 months; it was quite the learning experience for us both. I hope you get to have yours reversed as well.

When you say no drugs except steroids have helped, would you mind sharing what other meds you have tried ? Are biologics like Remicade or Humira included in your trials ?

Hope you stick around and thanks again

 

[theri1]

Hey, I Tried all the 'Basic' types of drugs for UC such as Mesalamine and Azathioprine and also because my UC was concentrated in the end bit of my Large intestine i tried LOADSSSSSSS of enemes/suppository which are horrible for any teenager to do.

Remicade helped me the first few times I had it, if i remember It starts with 1 Treatment, 2 week wait, another treatment, 4 week wait, another and then 8 weeks for every other treatment, the first two or 3 infusions i had helped but during the 8 week wait (about 5 weeks in) I became ill yet again.

After Remicade I actually went onto some strong tablets (cant remember the name for the life of me), they were the 'Last stand' for me whereas the Last stand for alot of people is Remicade, the tablets didn't seem to help at all, if anything they made me ill due to their side effects.

I then got offered a chance to go on some new enemas which were still in the testing phase, they were a Gel type and came all the way from Brazil, they cost over £9000 for a 6 Week period and were still very hard to get for me, My Doctor managed to get hold of them. They were so much easier to hold in due to them being a Gel and they didn't sting or feel uncomfortable unlike the Steroid enemas, Unfortunately during the 6 week period (about 4 weeks in) I started to flare up again, that for me was the last straw, i wanted my UC gone out of my life and the only way to do that was to have the OP for my Ileostomy.