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Posted 3/31/2008 5:40 PM (GMT 0)
hello everybody i'm still relativley new to chron's disease. i was diagnosed with chrons disease just over a year ago and a lot has happened in the last year that im still trying to get my head around.i was diagnosed in march and was put on meds. these however did not work at all and i was just in so much pain i could hardly walk! i opted to have surgery in july last year but it didnt qutie turn out the way i hoped it would! id never even heard of chron's disease before i was diagnosed and i certainley didnt know what it entailed! i suppose im just wondering if things will get better eventually? i seem to have had so much bad luck! would live some advice. :-)
Posted 3/31/2008 5:47 PM (GMT 0)
Once they can figure what the best med combo is for you, things should start to settle down. Its so frustrating when you are doing everything they request and you still are sick. Hang in there things should settle down once the right meds are found.

God Bless,
Gail *Nanners*
Posted 3/31/2008 5:59 PM (GMT 0)
thank you for that. i was put on pred but nothing else to try and sort the pain but they did nothing at all! all they managed to do was make me put weight on. i am going into hospital for another op on friday and im very nervous. they said they might put me on aziathioprine? afterwards. just hope things will settle down after this op!
Posted 3/31/2008 6:32 PM (GMT 0)
Good luck with your surgery, hopefully it will lead to a long long remission.
Posted 3/31/2008 7:06 PM (GMT 0)
thank you very much nanners.
Posted 3/31/2008 8:10 PM (GMT 0)
Its very hard when you are new to this disease to really get your head around it and we tend to just listen to our doctors and think they must know best. BUT, please, if you aren't getting results from the drugs they have you on after your surgery, keep pushing for different combinations or different drugs entirely. When I was first diagnosed there weren't all these drugs. It is amazing to me the changes in just 20 years. My Mom was diagnosed in 1965, WOW what we have now would knock her socks off. So educate yourself about all the options and keep pushing for the right drugs for YOU. We are all different and what works for one, doesn't work for all. With the right treatment, you can live a fairly normal, relatively pain free life. You just need to keep pushing for the right treatments.

I hope your surgery goes well and you have a speedy recovery.
Posted 3/31/2008 8:40 PM (GMT 0)
in my last surgery i ended up with a temp ileostomy so havent been in pain since then. its been great and now this op is for my reversal and im really nervous. i still have active disease in my rectum and i found out it had spread but not on medication till after op. im not in any pain though, that part of me is on holiday at the moment!lol they said something about azaithioprine? does anyone know anything bout that?
Posted 3/31/2008 8:57 PM (GMT 0)
There are a bunch of drugs that all metabolize a bit differently, and some may be the same but called different names depending on where you are. 6MP, Imuran, mecapapurine, Azaithioprine. I'm not sure if there are others that also go under this heading. They are immuno-suppresants. I have been on 6MP for probably close to a decade. It can have some serious side effects, especially at very high doses (it is used for cancer patients at much higher doses than CD patients) I have not had any side effects from it. You will need to have blood work done on a regular basis, to check your liver levels and to make sure you are at the correct dosage. Once you have been on it for a while, they will scale back the frequency of the blood tests. You can do a search and go through some of the older posts. Some people have had very good results, others have had bad reactions and others it has helped but not been a miracle drug. Like everything else with CD, it all depends on the individual.
Posted 3/31/2008 11:31 PM (GMT 0)
Hello Angel88,

I found out the hard way that it is critical that to be with a Dr. who is experienced with CD! It is always good to get a second opinion. Or even a third opinion! You should be able to trust your Dr. -- but don't leave it all up to them. Educate yourself so the Drs can help you even more.

Take care!
Posted 3/31/2008 11:38 PM (GMT 0)
Welcome to HealingWell, Angel88. Sorry you have to be here!
Its always rough the first year or two ( in my case, since I was treated for UC for 16 months with VERY modest results). You try to get the symptoms under control, people don't understand or believe you, & then the emotions that come with being DXed with a chronic illness.

Sincerely,
Matthew
Posted 4/1/2008 9:31 AM (GMT 0)
thank you all for your replies. CD is such a wonderful thing hey!lol it was the pain that got me most with this disease. i had it 24/7 and never got any relief. i never had very frequent bowel movement and there was never any blood or anything. it was just pain and being sick quite alot. i didnt have an appitite and only lost abit of weight. i suppose i didnt look that ill to many people i suppose thats why the people i worked with didnt believe that i was ill. i didnt quite understand what was going on myself at that time but i knew something was wrong. i ended up quitting my job as the people i worked with were really horrible and couldnt keep doing 9 hours a day with the pain i was in.

thankyou all for your support i do believe things will get better! angel

Post Edited (angel88) : 4/1/2008 3:58:59 AM (GMT-6)

Posted 4/1/2008 5:34 PM (GMT 0)
You know, it's the pain that gets to my hubby too; he's is in constant pain!  He has been on percoct for so long...

He is hoping to find some relief with remicade (he's on that to try to heal a fistula) and by visitin a rheumatologist!  I keep trying to encourage him to hang on, that we will find something that works!

I am not even going through what you all go through, I only see it from a support-person point of view, but I want to say like the others:  hang in there and keep pushing to try different combinations of things till you find something that works.

--newcrohnswife

Posted 4/1/2008 7:08 PM (GMT 0)
Hi Angel ..welcome and I'm sorry you had to come and join up :) It will get better though I'm sure...just like Nanners told ya' about getting the right meds combo. I am fairly new also just got diagnosed last August but it'll improve. Read my post I put up the other day "Just checking in" and maybe it'll give you a little hope that you can feel better. The people here are friendly , understanding , and always seem glad to read some *****ing and complaining though :) so don't feel like you can't come on and vent we all have the same problem.
Posted 4/1/2008 7:47 PM (GMT 0)

thanks fire medic. i think i did read that actually but i cant quite remember so ill just have to read it again!lol. im not on any meds at the mo but i havent been in any pain since i had my last op. im going back on meds after my up coming op but not quite sure what they will put me on. confused im not very savvy about all the medication on offer. ive not actually had CD that long and ive only ever been on pred. if you or anybdy has any info on meds thay are likley to give me i would really apprecite it. thanks angel :-)

Posted 4/1/2008 8:25 PM (GMT 0)
My pleasure :)...there's several immune suppressants you could be put on I take 6mp and it's been working very well. I also take asacol everyday which is also doing the trick for me. My Dr. said that the asacol is to keep things in remission and , like I said , it is so far. Fish oil is an otc thing that's good to take also cuz , among it's many general health benefits , it's good for inflammation. Prednisone you already said you had taken I see. The only side effects I ever really got from that was some mood swings but that was only when I was taking like 80 mg a day I've been tapered totally off of it by now though which is good. I never gained any weight or got the moon-face thing from it or anything like that. Anything I can help ya' with just ask :)..everyone here is like that .
Posted 4/2/2008 8:12 PM (GMT 0)
Hi Was wondering why they are reversing your ileostomy while you have rectum inflamation? Sure hope things improve and I take Imuran so not sure yet how it will work they say it takes some time for it to work . All the best on your surgery. lol gail
Posted 4/3/2008 10:26 AM (GMT 0)

hello gail. i no it seems strange that they are reversing my ileostomy while i still have active disease, but they are happy to do it and if they are happy to do it then i wont stop them! :-)

they must just feel that it is the right time for me. i have had the ileostomy for the matter of months they wnted me to and it is all healed up now so it is ready to be reversed.im very nervous but looking forward to not having the bag anymore. i just hope the meds they put me on will work  and take away the inflamation. it has been done with meds before so i live in hope that they will work again. :-)

thank you for your support about my surgery. angel88

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