My story and a thank you to everyone here

[violetenvy]

First off I would like to thank everyone on this forum who share their stories and experiences. I have been reading this forum for probably a year now and have yet to post. What can I say... I'm a little shy! I have learned SO much from you guys. Now on to my story.

I've had diarrhea for as long as I can remember. At least high school and I am 27 now. I didn't really think much of it, it seemed like my "normal". In the spring of 2010 I started having spells of nausea and vomiting but my family and I attributed it to stress as I was in the process of planning my wedding and buying a house with my fiance. I continued to have spells of feeling bad and started to get bad abdominal pains also. I would feel bad for a few days and then it would go away for a week or two.. so I kept putting off going to the doctor. It got worse and worse... I finally went to get checked out in September. I had a colonoscopy and endoscopy (ruled out celiac disease which I had convinced myself I had) and was diagnosed with Crohn's disease in my ileum in October. My GI noticed that my right kidney enlarged and it was discovered that my ureter was obstructed from the inflammation from the Crohn's. I had a stent put in for four months (ooouch!). I started out on Pentasa and Entocort. It seemed to really help at first. I felt better but never ditched the big D. Fast forward to spring/summer 2011... I started getting really sick again. Nausea, vomiting, and lots of pain. Got approved for Remicade. I received the first dose during my first admission to the hospital of the summer (three times in less than 2 months with one time being on my birthday). It seemed to help for a few days maybe. After several more doses my Dr did a test to see how well it was staying in my system. Not very well... which was pretty obvious to me as how crappy I was feeling. So he doubled my dose and I had a reaction at the infusion center that time because the nurses didn't slow down the infusion. That was scary. I went back a week later and got a slightly lower dose and they infused it over four hours instead of two and everything went fine. The test is still showing that its not working like it should so he added 6-mp and we are trying the double dose of Remicade again next week. I'm a little nervous about reacting again but mostly just hoping that it will finally start to actually help me. So far the only medicine that really helps is Prednisone. Even though some of the side effects suck, I really wish I could take it all the time!!

Sorry for the long story and thanks to anyone who takes the time to read!! I'm looking forward to posting and learning even more.

:heart:

 

[Crohn's 35]

Well finally you got here!! You are welcome to join us and share! :bigwave: Have to say that stress is a big culprit, and moving, weddings, divorces, and deaths can cause most of our bigger flares. I was on Remicade but by 3rd shot I became very allergic. I just hope you are getting your blood work done regularly, with the double dose and the 6mp is alot of drugs. Prednisone is exactly that, A MIRACLE drug but so many sides. I am on it now from a previous blockage.

Glad you made your way here, dont be shy because this disease has to be out in the open and awareness is so important. Great bunch here, I guess you know that since you have watched us for a year? Haha. Nice to have you.

 

[Cross-stitch gal]

Welcome I'm glad you decided to write! I too have learned alot since being here. Hope you'll become comfortable to talk to us more.
Lisa

 

[Angrybird]

:welcome: Thank you for writing your story for us. I too am on the Pred at the moment, it is even better this time than the last - I have been on it nearly 4 weeks and have no moon face or massive weight gain which is usually what I suffer with whilst on it. The short term/long term side effects can be so devestating though With regards to the Remi lets hope the nurses have learnt their lesson and will make sure the double dose is done nice and slowly and they obviously need to watch you like a hawk. I have been on this also and it had to be stopped due to an allergic reaction. Never fear though as there are other options if it happens again, although of course I will keep digits crossed that it all goes well Please keep us updated on how you get on.

 

[Cat-a-Tonic]

Hi and welcome! When you said you had a stent in for 4 months, I winced. I've never had one, but my husband had a stent in for a week after having kidney stone surgery, and he said the stent was more painful than the kidney stones were. He certainly pee'd more blood with the stent than when he had the stones. I watched him suffer horribly with those stones so I can only imagine how awful the stent would be, and for that long! You poor thing.

Oh, and I 100% agree with you, I love prednisone. Many people on here have a love-hate (or just a hate-hate!) relationship with pred, but I love it. I get the "euphoria" side effect from it, and I've never been on it long enough to experience any of the worse side effects, so I just love the stuff. Anyway, I'm rambling on again. Good luck and I hope your meds start working better!

 

[fosterschick]

welcome to too:bigwave: , i defo agree , this is a great forum i love it, constant informtion ( i didnt know crohn's and stress were linked i thought this was ibs --- as my not so helpful consultant told me !! ) i am currently undiagnosed but this forum has given me and my wonderful gp lots of support.
wishing you lots of support with meds x

 

[Hexie]

Hiya

Please don't be shy around us - we KNOW how it feels etc. I'm new too - only joined a couple of days ago but I've had Crohns for 25 years - lucky me eh? :eek2:

I hope they sort your meds out soon - there's nothing worse than taking meds that don't work out for you.

Hang in there flower and keep us posted

Sending gentle hugs :hug:

 

[violetenvy]

Thanks everyone!

Cat-a-Tonic: Stents are no fun! I had more constant discomfort/pain from that evil thing than I have ever had from the Crohn's itself. Lots of pretty pink pee also.

This is only the second time I have been on Prednisone. The first time I had problems sleeping and a little weight gain and hair loss. This time the weight gain seems to be worse. I think its mostly water retention though. I'm just glad to have an appetite and no pain.

My infusion is Thursday!! I'm hoping that it finally starts working. Does anyone know how high of a dose they can give?? I started out at 5 (mls? I can't remember exactly how they measure it) for the first several treatments, had my last one at 7.5, and will be getting 10 this week.