I'm so hungry

[hennigar]

I have ulcerative colitis, and I have been able to keep it pretty much under control with salofalk and diet up until now. Not sure what prompted it, but I think it was not paying attention to my diet, as I felt too good!
Now i have been at home for 2 weeks, taking Asacol, and Entocort and not seeing favorable results. Asacol gives me really bad headaches and diarrhea and Entocort gives me nausea and vomitting. No appetite, can't keep anything down other than chicken broth and rice.
I'm so hungry, I love food...but it seems this may be the end of my journey with food...or rather a different one.
I just started taking primal defense and fish oil capsules again, so we'll see wht that does.
I'm going to get an enema form of the entocort and see if that works better. At least there won't be as many side effects...I hope!
Anyhow..that's my story for now. This really sucks. I have no life. I'm trying to stay positive but it is very hard.
Taraoo:

 

[Dexky]

Hi Tara, How long ago were you dx with UC? I'm sure there are other meds you could be prescribed if those are causing adverse reactions. You should tell your GI about what's happening. Welcome to the forum.

 

[Crohn's 35]

Welcome Tara!!! A fellow Canadian too! You are on, very mild drugs, and I am surprised that Entocort bothers you, Pentasa didnt bother me either but everyone is different. It could be your Crohns acting up, those are symptoms.

It is hard to be positive when you are flaring. Try eating potatoes mashed, it helps fill the hunger a bit. When do you see your Gi? Let him or her know how you are feeling. You may either need to wait longer for the meds to work or change them.

:hang: welcome aboard!

 

[Astra]

Hi Tara
and welcome

yes they are very mild for the symptoms you're describing, I've been on Pentasa for 5 years, it's my maintenance drug, to keep me in remission, but no good for when you're flaring, I'm on a short course of Entocort too, just cos I've got joint pain from withdrawing Pred.
if it was me, I would speak to your gastro, maybe they'll keep you on Pentasa but start a short course of Pred to blitz the inflammation.
take care, and let us know how you're getting on
lotsa luv
Joan xxx

 

[Zalanicht]

Hello! Oyama that's so close to me in Penticton! Just wondering have you seen a specialist yet? If not I can recommend one here or in Kelowna.

 

[hennigar]

Thank you everyone

Hello,
Yes I a have been going to see a specialist here in Kelowna, and last time I saw him I was doing great, so he said he didn't need to see me for another 5 years!! About a month after that my flareup started, but gradually.
I was diagnosed whenI was 30, and I am now 45, but don't think I've ever had a flare up this bad.
I go back to see him on Monday. It was my family doctor that put me on Entocort. I know am going to try the enema form of that for 5 days.
Anyhow, I will discuss all this with my specialist on Monday.
I'll keep you posted! Thanks for all the caring people out there. This is a great forum!

 

[hennigar]

sorry about my spelling, my keyboard keeps sticking....

 

[Zalanicht]

Dr. Penner is your specialist in Kelowna?
And there's a GI specialist here in Penticton now she's new. Maybe closer for you to go to her instead of going to Kelowna. She's on maternity leave right now so in the future you could. She's really nice she saw me in the hospital after my surgery after she went on maternity leave.

 

[hennigar]

Yes, Dr. Penner is my specialist in Kelowna. Kelowna is closer to Oyama than Penticton.
Kelowna is only 20 minutes from here, whereas Penticton is at least an hour or more. But thanks for the advice.
I am happy with Dr. Penner. I just hope he can help clear this flare up.
Take care.

 

[hennigar]

Thank you

I've been on Pentasa. That is what they had me on when I was first diagnosed back when I was 30. I've also been on Dipentum, and now Asacol. From what I hear they are basically all the same drug, but with different brand names. I get the same side effects from all three.
So, that's why I went off all of the maintenance and tried to control it all with diet, fish oil and natural supplements. I've been doing great for the most part until now. My own fault..I feel off my diet for a bit as I was on holidays. A bit of stress going on in my life right now too.
Anyhow...
I went to the hospital yesterday and they pumped me with 2 litres of fluids, morphine, buscopan for the cramping and sent me home with buscopan and a type of pain killer..apo-trmadol.
I'm on clear fluids and the entocort enema until I
see my specialist on Monday.
I see a feint light at the end of the tunnel. I hope it gets brighter soon.

 

[Zalanicht]

My bad I thought Oyama was somewhere else duuuuuuuuuuuuuuur.

 

[hennigar]

Update since my last post:
I was admitted to the hospital for dehydration due to my chrohns/colitis. I've been in for over two weeks, and have been home for a few days now. I am currently on prednisone, and I am going for Remicaid treatments now. I am recovering at home, but this is a slow process, as I was so badly inflamed that they almost removed my colon. I no longer have blood in my stool, but still have quite runny diarrhea, and my belly puffs out from time to time. I am trying to stay positive that after my second remicaid treatment I will notive even more of an improvement. In the meantime I am trying to regain my strength from being in the hospital on iv for two weeks.
Has anyone had positive results from Remicaid treatments? They are touting this as a wonder drug.
I remain hopeful and positive.

 

[Dexky]

Welcome back Tara, there is a Remicade Club thread in the treatment section of this forum. From what I've read it's almost all positive.

 

[hennigar]

Thanks I will check that out!!

 

[ameslouise]

Hi Taran - Hope you start feeling better soon!

Lots of people have had good results from Remi - I hope it works for you too. If not, there are plenty of meds out there to try!

Hang in there! - Amy

 

[hennigar]

Thank-you!