Hey!

Hi everyone, im zoe, 17 from bucks ive just recently found this forum & thought its worth a join seeing as i dont often really know who to turn to! I have never had a clear decision as to whether its crohns or uc i have but docs say more likely crohns! I had my first flare when i was 13. I have been lucky enough to be in remission up until last november when i had a very bad flare in which resulted in me being hospitalised & on iv. I had to quit my a-level place because i was too ill! Was put on pred, sulphasalozine & pred foam, the high doses of steriods were making me sooooo snappy & irritable! Thankfully i have been able to reduce my steroids to 10mg & my moods are a lot better but i dont really seem to be noticing much of an improvement now
I have a great mum who is very supportive & couldnt ask for anyone better! But i just cant help but feel sooo frustrated and angry & times, i just want to be able to get on with my life like all of my friends, i just dont ever have a day of feeling 'normal' & it really does get me down at times, but as i said i dont really know who to talk to because i dont think unless you have crohns or uc that you can really understand properly! Anyway thats my little story i guess haha

Xxx

Hi Zoe!

Welcome to the forum! Glad you found us.

Have your doctors talked with you about long-term medications to keep your disease under control? Pred works for many people, but it should not be used as a maintenance drug. You should be on something in between your flare-ups to extend the time between those times when you feel crummy. You will have more of a sense of being able to "get on with your life" if you aren't constantly having to deal with flare-ups.

There are plenty of long-term medications, such as biologics (Remicade, Humira, cimzia), immunosuppressants (Imuran, 6MP), Methotrexate, Pentasa, etc. If your doctor has not suggested anything, you should talk with them about what would be best for you. If they don't think you need long-term medication, time to get a new doc!

Hi Zoe and welcome! I know it can be difficult at times to determine between CD or UC, but I am surprised after so many years your doctors have not been able to figure it out. I assume only your colon is affected, most of your issues being at the end of the colon, hence the predfoam.

It sounds like the sulphasalozine isn't doing the trick. As Marisa mentioned, there are many types of maintenance medication options to keep your Crohn's under control long term. I am not sure if Lialda is available in the UK, but it is similar to sulphasalozine, but it is released later in the colon. That may be a good option for you to try. Good luck and I hope you can start feeling better soon!

Hi Zoe,

Welcome, I'm glad you found your way here. I'm sorry to hear you've been having these problems since such a young age, you poor thing It's great you have such a supportive mom though, that can certainly make a world of difference!

We're here for you any time you need us. I'll see you around!

Hey everyone thanks for your replies erm yeah i have mentioned remicade & humira in the past but the docs were hesitant to give me it because of the side effects, i see you marisa are taking humira, how do you find it? & the steroids i have been on for about 6 months now!!! Which i am obviously not so happy about due to their long term side effects! I have recently developed stretch marks due to them which is a bit of a bummer but oh well! They worked wonders for me when i had my first flare when i was 13 but are not working so well this time round unfortunatley.


@ jill, hey! I know i am also surprised they havent been able to determine which one i have yet. I have had 3 bowel biopsies & still no definate answer! See im not so sure as the predfoam doesnt actually do much for me personally, when im ill it seems to feel uncomfortable from my stomach down. I will defo discuss with my doc on my next appointment!

@ david, thank you & it defo does make the world of differece i wouldnt have been here without her!


Thank you all of you's for your replies xxx

Hi welcome

I hope they are able to soon give you a definintive answer as to whether it is chrons or UC. That is great that you have your mom as a great support system!

Thank you
Me too...although I do think its crohns! thankfully they are similar to treat I guess haha x

Yes, I've been on the Humira now for a little over a year now. It is great! I didn't experience any side effects from it, besides a massive headache the day I did my loading doses. But that is it. Maybe some extra dry skin, but I use Aveeno lotion for extra dry skin and it seemed to help. I just make sure I drink a lot of water during the day now too.

I did have to go to every week shots after about a month and a half of using Humira. My disease was very stubborn and stopped responding to just one shot every 2 weeks. So, they put me on a low dose of Imuran on top of the weekly Humira and that's been the combo to keep everything in control. I just had my scopes and scans in January and my fistula is gone and my inflammation has gone down to mild from moderate-severe. So, it's working! The only other side effect I have noticed is heat sensitivity after starting the Imuran. It seems to be a common side effect for people on it, so that doesn't surprise me. And it's not too annoying unless I'm outside in the heat for very long

So, hope that helps. If you have more specific questions about Humira, feel free to ask!

Ok thanks for your reply sounds like a miricle drug really! I think i may discuss other meds such as humira & remicade when i next see my doc! So sick of being on steroids now!!

So do you know how long you stay on it or is it just until your in proper remission?

X

Some doctors have differing opinions. Mine said I will be on Humira indefinitely, until a better drug comes along, or a cure! I will most likely not be on combination drugs forever, but for now he wants me to stick with Imuran + Humira because the studies have really supported the use of the two together and reaching remission and staying in it longer.

I also may be able to go back down to every other week shots once I'm in remission, but for now my medications are staying put since I've responded to them so well over the past year. But, Humira will always be my maintenance drug!

Oh wow sounds great! Glad it works so well for you, i will defo have a think about it, thanks for your info & stuff about it much appreciated x

Hi Zoe,

So sorry to hear of all you've gone through. I recently joined the forum too as I had been lucky enough to have several years of remission, but that's gone off the rails recently. The good news is that I did have several years of remission like you did, so we know it can happen. We just have to get back there. I completely understand the frustration of just wanting to have that normal life and do as your friends do. I'm so sorry that happened regarding school. I agree that no one can really understand this unless you are experiencing it. I also have a great support system for which I am very thankful, but it's still a solo journey. Good luck to you and I am open for venting at any time

Yeah thankfully it is possible! Haha, just hard to see it happening when your having a flare! Yeah it is just soo frustrating like everyday having crohns hold me up!! Its ok, im going to start up my own internet business soon so hopefully that will do well! Definatley is a solo journey! But a good support network does help! This forum is great too! So many supportive & positive people who understand what were all going through! Thank u haha your more than welcome to also vent to me if needs be x