Im still alive ….just about!
Alot has happened since I last wrote I have been on one hell of an emotional rollercoaster. I have just got out of hospital last week. I was only allowed out as I demended a few days to enjoy my birthday as they could do no more for me in hospital with my meds. I got another scope showing that my colitis is active and is not going to go into remission even with steroids. I was on high dosage of IV steroids but didnt work so they have brought me down to 60mg a day and slowly weaning me off to start me on Imuran! So I now have to get sick in order to get better and that is only if Imuran actually works. Not to mention i am so so afriad going onto these meds. After going so well on diets and alt meds and then BAM!! colitis strikes back its like one step forward ten steps back! Im really shocked that even steroids arnt working this time and its the highest dosage ive ever had. My head is a giant football, i have acne,backne and I am an emotional wreck. Im constantly crying and so confused. I havnt been sleeping I manage to get one hour a night for the past two weeks and thats just crazy dreams. My joints are also screwed. I felt like I turned 85 this weekend not 25! One thing I did enjoy was the fact that they removed my feeding tube from my throat so I could have my birthday cake this year! It was awesome! What is funny this time round with the steroids is that not only am i eating everything in front of me..(im surprised im not chewing my arm right now)..its that they have stopped my bowel motions completely except for blood! I still pass blood but have stopped all other bowel movement..so i have to keep getting scans to check my colon because its now twice the size it should be…i look like im 7 months pregant with a giant football head..hmmm so very appealing for all the men out there! sigh! Its now 1am here and I now have a full night of not sleeping and having freak outs about starting new drugs and going back into hospital!
In regards to imuran Id love to hear peoples input on the drug! I am left with no choice they told me imuran or go home sick! Do people get the bad side effects? did you have to start off in hospital? do you still take steroids with imuran?
I hope that the Imuran can help you out. I don’t know anything firsthand about that one, but hopefully some others will post some ideas for you. I’ll also put a note down on the facebook page appealing for some UC’ers to get their feedback on Imuran so you can get some ideas.
I’m so happy you were able to get some birthday cake.
As for turning 25(I mean 85) actually 25, I did the same thing last year on my 30th, but it seemed like my 95th, as my joints got all seized up. Keep your head high, I got the fingers crossed over here for you Jen!
I have been on Immuran since July 09. I guess I don’t even notice side effects. I know it lowers teh immune system which is what we want. Our immune system being good attacks the lining of our bowel and causes our colitis to be bad. I take 3 immuran tablets at once a day which is 150 ml. I noticed at first I had a few more colds then usual but that has all evened out and now I am hardly ever sick with colds. The meds have helped some in that my colitis has calmed down a bit while on this drug. I just have a really good immune system because I work in a daycare with children for the past 11 years and that kind of works against me with the UC. I am slso taking prednisone off and on with this drug because my flares do get so bad. You also have to get your blood checked on a reg basis to make sure nothing else is going on with the immuran. I have been fine on it and its been almost a year. Also I was in the hospital with a bad flare up when I was first put on this drug. I think it works for what we need it to do. Good luck Jen
Oh my you have no idea how similar your story is to mine.
i couldn’t stop skipping lines and reading over your story again oh wow i feel your pain
We are strong aren’t we!
Incredible, you having a feeding tube down your throat its horrible !
So I’m on 150 mg of imuran and I’m sure you’ve gained so much weight on that massive dose and being on iv it’s so much more effective than oral steroids I’ve weened down from 60 mg IV from being in hospital and now I’m down to 20 mg and on 150 mg on imuran AND the great thing about imuran is that it makes you want to eat less so that’ll help with the weight gain.
Imuran does make you a bit nauseated but believe me its all worth it
Your story is so much like mine. I’ve been sick now for almost 2 years. I’m 15 and i have gained a wopping 18 kilos! I started off on the imuran in hospital after getting the IV steroids. THE HUNGER IS OVER POWERING!
Thanks Guys! Love hearing other peoples stories and reaction towards this drug! I rang the hospital today and I will be starting on Imuran next Wednesday and I dont have to stay in hospital just need to get my bloods checked weekly i think. I really hope I dont get side effects like hair loss as some people i know do! But then again Im sitting here with horrible side effects from steroids and dealing with it so whats another drug? Hi Romy its nice to have someone in the same situation and at 15 I can only imagine how hard it is for you to cope with all this. Are you still in school? I was just finishing college when I was diagnosed 2 and a half years ago and had suffered for a year before that and I found it hard enough to cope with college. And without sounding shallow but thankfully if imuran does make me eat less id be more than happy! Weight was never an issue with me thats why i could never understand their need for me to be on feeding tubes etc. When I first started on steroids I shot up and extra 3 and a half stone and only recently I started to loose it and now im freaking out about gaining it again. I know people are saying who cares as long as you are healthy but I do unfortunatley care quite alot! Im a single girl and its tough enough out there with being sick and the size of a bus. Ok rant over! Any other single people feel the same?
Hi Jen looks like you’re going through the wars at the moment….dont know what else to say except that I’m hoping the the Imuran will work for you…..be strong!!
once they determine that immuran isint going to cause a horrible reaction I think they dont have to do bloodwork every week. Yes, being single with UC complications bothers me alot. Before UC social events I was like a moth to a light so meeting people wasnt a problem. Over 5 years slowly I isolated myself from the rest of the world. Had a gf for 2 years untill january, we broke up and now I’m like where am I gonna go to meet people. I just dont get out anymore, and when I do its to the GI’s office and unless I wanna pick up some 70 year old grannies its not gonna happen. Very depressing to say the least and even dating someone with UC is hard. It would always bother me when I had to cancel going to the movies or somewhere. And NEVER being able to go out to eat. It really limits alot of things and to me it seems wrong to drag someone through my inabilities. But thinking about it from anothers perspective it wouldnt really bother me so i guess a normal person wouldnt be too upset. I just turned 24 on the 30th and sat at home. I got a few happy birthday calls/texts and all I could think to myself was “not really, I’m at home sitting in the bathroom. No cake(bread, sugar-scd illegals)” Good luck with the immuran, watch for skin reactions I started taking it something like 60mg after a few months I started getting a rash so my GI discontinued it. We never really determined for sure that the immuran was what caused it or not tho. Hopefully you can stay out of the hospital. The moonface and weight will go away once you drop down on the steroids just takes time the moonface for me doesnt start to noticably go away till i get down around 20mg or less.
Don’t feel that you are being shallow it’s completely understandable!
I used to be such a self obsessed, immature teen who only cared about popularity,hair,weight and boys.Yes-It’s a definite struggle to go to school its now half past 5 in the morning and i’ve just started to struggle with insomnia I haven’t slept a wink if only I was still on my endep (amytriptyline)id be fast asleep and pain free but I am so desperate to look gorgeous and slim like my fellow girlfriends that I have rushed along the appetite suppressants and I am about to go for a 9 km cycle, yet i have only slept 3 hours in the past 58 hours or so. I am exhausted BUT I have been sick for 1 year and a half, So this is my long answer to your question if its hard for me to deal with high school, YES its horrible i get looks and rumours but I’m a changed person because of this illness and I am so happy that there are people like me out there because sometimes i feel like the only human that eats like an elephant and wants to eat the whole world. Bottom line-Being 15 at a severe level of UC has screwed me up physically and mentally but it has changed me for the better. I now see some of my friends who I used to think were so graceful,elegant and flawless now being food obsessed and engulfed in self image. You are incredible, Having a feeding tube down your throat and being sick on your birthday! Is horrible you must be such an amazing person. I didn’t know imuran gave you hair loss?! Its been a real great drug for me. p.s How long have you had the flare up now? and if you don’t mind during the time of your diagnosis how many flares have you had ?I
Hope you are feeling better!
I was on 4 azathioprine tabs a day for colitis (and 8 Pentasa). Still having flare-ups though and having to take lots of pred to stop the bleeding. After a couple of years on azathioprine my regular blood tests depicted a crash in haemoglobin and white blood cell levels and I was summoned to go immediately to hospital for blood transfusions (bone marrow was overly suppressed I believe – I apparently had little immune response remaining and was in placed in isolation). The doctors called it azathioprine toxicity. I was then taken off azathioprine and blood levels improved. This was at just after new years this year – so I guess a bit of boozing didn’t help matters!
I think it is worth a shot to try the azathioprine but it really is important to have your regular blood tests so you can monitor your response to it. Hopefully it will get you off the pred! It didn’t work for me but I’m glad I have tried it, crossed it off, and will move on. It does work for others though and hopefully you will be one of the lucky ones! Been on 40mg pred for years now (everytime I reduce the colitis just comes back) and know where you are coming from…
Good luck to you,