So I finally seen my GI doc today. Not that happy

[Swirl]

OK let me break this down to how I've been feeling. And my experience in the GI Clinic.

January 4th I was told I had Colitis after having it since January of last year.
I got on Pentasa (Mesalamine) 4 pills 4 times a day and 1 Folic Acid Pill a day.
Was only taking 4 pills a day until around January 20th when I was bored and some how my eyes took notice at the Pentasa bottle and I notice the directions.......... But it hasn't been working since.
So for the past month I've been feeling very week and so sleepy and head sick. Had to quick my new job and deal with this problem. I changed my diet to mostly organic food but it hasn't help.

GI Clinic today and the doctor told me food doesn't have much to do in helping me with colitis. There are some that can make it worst but you can pretty much eat what you want unless you find it upsetting you. Peanut butter now does so I stay away from it.

So he told me to take two extra Pentasa Pills, one extra in the morning and night. So that's 18 Pills... I think he forgot about the Folic Acid pills so I will be calling him tomorrow about that and the new stuff he gave me, I have to take two Prednisone pills in the morning. Steriods. He said its short term. He wanted me to take 20mg for a week then 10mg the next week then 5mg.

Thats to stop the bleeding because Pentasa isnt working. But I still gotta take them.....

So my head hurts now and he said my calves cramping up and ankles getting tight and sore was because my blood level is dropping. He seen the results on my last test.

So anyway I'm dying and food wont help me... lol omg.
It wont be a bad death if I do die. I get really sleepy and there's nothing I can do but lay down and sleep. My father past away like that so I'm ready if it happens.

I think I'm going to have a kid before I go I'm head is going crazy. The world is changing so much.

 

[Swirl]

Oh and me workingout with weights i shouldn't be doing he said. But I wont stop doing that, plus I feel a hell of a lot better during the day when I do workout at home with them. So why would I stop? even through I sometimes feel like I'm going to faint......smh but it helps.

 

[Lydia]

My GI said the same thing about diet. I think what they mean is there is no one size fits all diet for crohns. Figuring out what to eat is one of the hardest parts and if you are flaring bad enough then everything will bother you. Sometimes it takes cutting out something for a week or so before you notice improvement.

I hope the pred makes you feel better. It helped me quite a bit, even though I hate the side effects.

 

[Swirl]

I didn't know about how all food can bother me during a flair. That is something I think I experience.

I just don't how this drug will stop the bleeding when I come off of it. And the side effects I'm reading now. I don't like this already.

 

[Lydia]

Before I went on prednisone I was flaring so bad it didnt matter what I ate. Nothing helped and I was in so much pain. The pred did help me quite a bit. While the flare was still mild to moderate cutting wheat and dairy helped quite a bit but it took about a week to notice I wasnt getting all bloated and gassy anymore. When I would try wheat or dairy after that I would bloat right up especially when I ate wheat. I wish I would have known that a long time ago I would have saved myself some embarassment. I was bloating up as fast as I could get rid of the gas, it was so bad. As the flare progressed to a more severe flare, I would react to everything. I was to the point of eating rice and broth and I was still in so much pain.

Maybe it will stop the bleeding by allowing some of the damage to heal up while you are on it and then the pentasa can work better because the bleeding an inflammation wont be as severe. I dont think pentasa can work too well if your flare is severe.

 

[Swirl]

Ok thanks. I did start taking Ensure Plus today. So I don't know if that will effect me. And some protein bars. I know I need protein to help the healing process. I went twice today and twice yestarday so I think something is working.

Wheat I notice is bad for me too. I don't know about plain white bread which I love.

I don't know what's next after Prednisone. I decided to take it because I'm losing blood and I need it to stop.

I also take Cod Liver oil. A tea spoon of it. Multivitamin too. Vitamin D I get from lots of different berries I eat. Calcium I need to start taking. Oh and lots of water

Lots of comedy movies help too lol

 

[Lydia]

Yeah, The IT Crowd was some great medicine. lol.

 

[Swirl]

Oh wow the IT Crowd! I'm watching video clips on youtube. I never heard of it before but its really good. I would love the get the series on DVD!!!!!!

 

[Lydia]

You can find full episodes on google video.

 

[Swirl]

Thanks, I have, its really good!

 

[ameslouise]

Swirl - Hang in there. The pred is for the short term and should get your symptoms under control pretty quickly. Don't worry so much about the side effects right now - they are little concern compared to the blood you are losing.

Perhaps you can ask your doctor to recommend a dietician/nutritionist you can work with to make sure you are getting/retaining all the vitamins and nutrients you need. Your GI doc may also have a patient education specialist that can helo you learn more about UC. UC can be quite manageable once you get your symptoms under control and with safe maintenance drugs.

Good luck - Amy

 

[Sue-2009]

Swirl..been there!!! It is an awful feeling. But Ames is right...hang in there. Pred should help you get it under control. I hope you are feeling better soon. And with anything there is some bad...try not to let the side effects bother you right now, you really will feel better psychologically if you start mending mentally. Goood luck...I'm sending some good vibes as I type! Sue

 

[Creepy Lurker]

Yeah, The IT Crowd was some great medicine. lol.

Just remember, dialling 999 won't get the emergency services any more. So remember:

http://www.youtube.com/watch?v=HWc3WY3fuZU

 

[suzielouwhoo]

what about a new doc that might push a little harder and try some other meds? sometimes t doesn't hurt to get a second opinion. good luck.
my other suggestion is try some yoga and maybe even some guided meditation. you are flaring and therefore stressing about the flare-up and it is only making it worse for sure. deep breathing will help too.
susan

 

[Swirl]

I threw out the pred meds I got. I wont use the prescription for any other the others I was given. They didn't even have 10mg in it, They wanted the doc to change everything to 5mg which was maybe 200 pills.
The doctor was just trying to say get on these pills and forget about diet. So theres no talking to him about food. I wont take those, I'll see what I will do.

 

[ameslouise]

Swirl - Food and diet won't put you into remission, and you really should get the bleeding under control. I'm the biggest proponent of doing things "the natural way" - I take probiotics and supplements by the handful. But I know that's not enough to induce a remission.

Please be careful. You need to get this under control or you will end up losing your colon. That's what happened to me. Trust me - emergency surgery is no fun.

- Amy

 

[jameandrew]

You have to very careful about it otherwise doctor wont have any option other than performing surgery.Its always good to have a natural food like fruit and green vegetables it always keep your diet in control.I hope that you handle yourself well and be brave.

 

[Swirl]

I don't know what I'll do if I was to lose my colon. I'm thinking of going to New York Presbyterian hospital, They have a IBD section. I'm hearing ads on the radio with them.
I just get a feeling like I'll end up messed up if I continue with this current Queens Hospital which I really don't like.
I feel a bit better.
I want some control over this.
Had one emergency surgery when I was young on my ear and I wont be going through another.

Hopefully you feel better with that surgery through. Hopefully you aren't having any pains or problems. I read that to cure this problem, colon would have to be removed. But I don't know much about that, I will read about it.

Yeah I understand I have to be careful, but reading about so many people with this condition and to see how a lot of people are just given so many meds to take everyday like candy and when it comes to this disease, all it seems to be is a mystery. Theres no one right way.
Stuff this get me mad. I see how my brother went away due to painkillers. freaking docs.

 

[ameslouise]

Hi Swirl - Yes, with Ulcertative Colitis, there is a cure and it is to remove the colon. It is much better to do that as your choice, rather than as an emergency, which is what happened to me.

But there are ways to keep UC under control with relatively safe meds. I kept mine at bay for 7 years. The reason I lost my colon is because I didn't take my flare up seriously, and kept thinking it would just get better.

Life without a colon, and with the J-pouch surgery that is performed, can be very, very good. I had 6 really good years with mine. (It turns out I had Crohn's disease all along and probably should have just had a permanent ileostomy).

If you are not happy with Queens Hosp, you should get a second opinion. You deserve a doctor you feel comfortable with. Give Presby a try. It's probably worth the trip. I travelled well over an hour to Presbyterian in Philadelphia for my Drs. appts and had my surgeries there. Kind of a pain in the ass, but worth it.

Hang in there, Swirl. You sound really depressed. This disease does not have to take your life away.

- Amy

 

[Swirl]

ok thanks. Thats what I hate too, a lot of people have more then one issue going on and don't always know. I've always had depression, but only now seem to get it once in awhile when I'm not feeling well during the day.
But I be ok, I just look at life like a movie, gets sour sometimes and all of a sudden everything changes.