Frustrated and sick of being sick

[seaface]

I'm a 20 year old female who was diagnosed with UC just over a year ago. Before that I suffered from horrible tonsilitis. I got my tonsils out and just never recovered, as my UC symptoms started afterward. About 5 months after the tonsilectomy I was diagnosed with pan colitis and ended up in hospital for 7 days, since then I have constantly felt horrible. I catch cold after cold and my UC is almost always flaring. I'm just sick of having no energy to do anything.
I'm currently taking:

3000mg oral salofalk
2g salofalk enema
100mg mercaptopurine

Avoiding prednisone at the moment as I have bad reactions to it.

Considering going gluten free to see if that helps.
I'm just fed up, I've had maybe 3 weeks of feeling ok the past year.
Grr
Sorry to rant, I know there are people that have things worse, it just gets frustrating some days.

 

[ChickensRule!!]

I'm sorry to hear what your going through this disease is a horrible thing, but you are strong for putting up with all of it! Good luck in the future and i hope you find a medicine that works

 

[seaface]

Thanks, hopefully it's soon!

 

[ThatsWhatSheSaid]

I hear ya. I always know that there are worse things out there, but it is frustrating to have a diagnosis and not be able to get any relief.

I'm frustrated and sick of being sick too.

 

[jengirl22]

I am 21 and was diagnosed with colitis in January. I am sick of having no energy and disapointing my friends and family when they want to go do things, and I just can't somtimes. It really sucks having to make sure there is a bathroom everywhere I go, and constantly having that worry in the back of my mind. I think the mental and emotional part of this has been more difficult for me then the physical part. Keep fighting, God Bless.

 

[seaface]

Definitely agree with you there Jen, I'm at the stage where people have stopped inviting me places because I can never go. Its not very fun but I've found that when you feel like you can go out ask your friends and they will appreciate your effort to see them, even if it's only for a short amount of time.

 

[seaface]

update; i've been gluten free now for 3 days (im at the stage of trying anything to get better) and no improvements as of yet, will give it 2-3 weeks to see if it helps at all.
have given in and swapped salofalk enemas for prednisone enemas, fingers crossed for no side effects and a happy tummy.

 

[Wallath]

Hi..I'm 64 and I have had UC all my life......yes its an elephant in the room with you day in and day out, and you can't even pretend its not there....and yes I have been frustrated and sick of being sick just about everyday of the 64 years.....to survive I took a long view on things, and have become very patient with myself, accepting the ups and downs of this disease that comes with the every moment of our lives...it took many years before I got to the right doctors and the right medication...and throughout that long struggle, I sustained my self with patience and faith in myself, that I could survive no matter what... And while I have regrets about things that didnt plan out...at 64 I can say I am the healthiest that I have ever been ever and to me thats just great:lol:......you will never beat the elephant, but you can certainly give it a good run for the money....Have courage...and keep the faith.:dance:

 

[seaface]

Thanks wallath, unfortunately I've now come down with a cold and my kidneys are playing up. My GP is away at the moment which is a poo but hopefully another of my doctors is around. Am hoping things don't get worse as hospital may be on the cards. Sigh! I'm glad you finally found some relief

 

[Cmk]

Im a 36 yr old male and ive had bad UC for about 6+ years now...ive tried so many things, im currently doing Remicade every 4 weeks, plus asacol, nexium, and am still on 25 mg of prednisone a day, i have stopped at every resy stop and bathroom this side of the mississippi and am miserable as its seems now to be getting worse.....im afraid because people twll me removing my colon is becoming my last and only option....i am married and a father of 3 lil boys and it just sucks.....I will say tho ive been basically gluten and fairy free and that has helped in some aspects....the remicade was great for a bit but also has lost me.......i feel for you, this disease sucks!!

 

[seaface]

sucks to hear that Cmk. I hope you feel a bit better soon. It really can be frustrating feeling like this for years at a time! I'm sure your boys will understand why you often don't feel too well.
I recently tried a gluten free diet and it didn't help me at all (secretly glad, gluten is yummy)
Goodluck with everything!

I am finally feeling a little better, got rid of the cold/flu i had for about 3 months. However my UC is still playing up.

 

[windwakerider]

Hi, Have had left side UC for 20+ years. Just recently changed my diet to organic non-GMO. WOW, what a difference! Currently symptom free! Have others tried this? Research all you can on GMO.....

Wishing all of you good health.

 

[ndw0317]

I have had UC for 1.5 years now (diagnosed in May of this year). I have tried the gluten and dairy free diets: no relief. Have been on BRAT diet - not much relief there either. Am currently on Remicade; GI just changed my schedule from every 6 weeks (I actually started on an 8 week schedule) to every 4 weeks (I'm currently in a flare). While Remicade provides some relief, I am still not in remission (still make 5-7 potty trips a day) and have dreamt of solid bm's now...twice! as I'm flaring, they may very well put me back on Prednisone (BLECH!), though I have asked about Entocort. The jury is still out on that as I'm waiting to hear and my next Remicade infusion is this Sunday.

I'm also tired of this crappy disease (pun intended) and of feeling tired and weak...I completely understand where you're coming from!

Nicole

 

[2thFairy]

Nicole, your timeline is similar to mine. I was bumped up to Remicade every 4 weeks on the high dose and still never achieved remission. From diagnosis to colectomy was 2 years. At the end, I was on Lialda, Remicade, VSL #3, cortisone enema daily and mesalamine enema daily....everything just stopped working.

I wish you the best of luck that things turn around for you!!