Help please

Hello everybody!
I'm really feeling down and i don't know what to do anymore...
I was diagnosed with Ulcerative proctosigmodytis last June, they only did a sigmoidoscopy on me because I don't have health insurance and i couldn't afford the full colonoscopy...
The doctor (he was horrible to me) put me first on Mesalamine enemas (4g/60ml) got a reaction from them, felt dizzy, pain shooting down my leg and in my lower back.
So then he put me on Sulfasalazine pills (500mg 4 pills twice a day) got a reaction from them too, headaches, dizziness...so i called him and he said, and i quote "I guess there's nothing we can do for you"...that was the last time I talked to him...

I went to another doctor told him everything and he put me on Hydricortisone enemas for 2 weeks. it was July and even though I got dizzy from the enemas that did the trick at that time. The bleeding stopped.
After that I only used natural herbs and supplements (with a doctor that was helping me).
I was fine until late February i started to notice some blood again :(

Went back to the gastro he put me on hydrocortisone enemas again for 1 week and also on Asacol (400 mg 2 pills three time a day).
The first week I was fine, then the 8th day I started to feel extremely dizzy again...I wasn't on the enemas anymore, just the asacol...
It's been almost a full week of feeling like this and I can't take it anymore!
Last night and this morning I saw some blood again...

I called the gastro but he hasn't got back to me yet and Wednesday I will go see another gastro that was recommended to me.

I have what i think they call a 'mild' version. I usually poop once in the morning. Most of the times it's formed, if it isn't it's grany. (sorry for the graphic description! )

I just don't know what to do anymore...I started to really feel down mentally and physically...

I was wondering if you had any bad reactions to the meds as well...

I also just started to take DSL3 I've been on it for a few days.

Any insight you could give me it's very appreciate it.

Thanks for reading this!

Love!

You mean 40mg of Prednisone, not 400 right? Start at 50mg of Prednisone for 1 week and then taper slowly. Also take 4800mg of Asacol a day.

Yes sorry 40 mg o.O
I'm terrified of the side effects...my body is very sensitive and I got side effects from all the meds I took so far.

Asacol is making me horrible with the dose I'm taking right now...I'm so dizzy it's hard to function

You are taking a very small dose of Asacol - my teenaged son takes 8 pills a day in remission! And I take 16.

I know some people have a sensitivity to Asacol - maybe one of them will jump in here....

I don't blame you for being terrified of the side effects of prednisone, especially if you tend to be sensitive to meds in general.

Since, in the overall scheme of UC, your symptoms are relatively mild (I say that knowing that even supposedly "mild" symptoms can be very rough)
would you consider asking your doctor if you can try the Rowasa enemas.....? They are supposed to be even safer than the steroid enemas (which are again less systemic than oral prednisone) and the research shows they are at least as effective. We're all different in how we respond, of course.... but it might be worth a try? Then you'd be putting the medication right "on" the inflamed tissue. Many of us find this very effective.

But then again.... if you might be adversely sensitive to 5-ASAs..... hmmm.

This whole thing is hard to get our heads around, but.... hang in there!

I think that's what I'd do, too, if I were you.
Hang in there, and be gentle to yourself!

You may have an allergy to mesalamines which include Asacol, Colasol, Canasa, Lialda, etc., any of the 5-ASA maintenance drugs. If so then the Rowasa enamas may not help you much either. If your GI cannot acknowledge allergy as a possibility then you need to find a new doctor.

I had the same problem. I would have flu-like symptoms, night sweats, nausea, and pleurisy whenever trying to take the prescribed meds. I would even throw up after inserting a Canasa suppository. Obviously I was incompatible with mesalamines, but my doctor insisted that I continue with Asacol. I am not sure if I finally fired my doctor or if my doctor fired me.

I suggest getting back to remission somehow. I understand wanting to avoid pred. Hydrocortisone enemas worked for you before and have the advantage of being local as opposed to the systemic side effects of prednisone.

Sorry that you cannot tolerate the 5-ASA maintenance drugs but maybe you can try diet modification to maintain remission. It works for me. You may be lucky enough to go into remission thru diet alone. First I would avoid gluten for a few days to see if things improve. Gluten affects people the most. Then you can try dairy, high fructose corn syrup, and finally keep a food diary to see if any cause and effect. Some of my triggering foods are kale, shellfish and plums.

Supplements also work. Taking psyllium seed powder (most others use husks like Metamucil which tastes better) mixed with probiotics like VSL#3 is a wonder drug for me. Boswellia and vitamin D3 also work.

I am glad you're seeing someone else! I can't believe he's trying to put you on pred. after 1 week of Hydrocortisone enemas! FYI, I don't know if it would make a difference but there is a sulfite free Rowasa. It depends on what ingredient is bothering you. Sounds like it just might be the Mesalamine itself but anyhoo, might be worth asking the new doctor about. Take care! :o)

We look forward to your report after seeing the GI!

So here's my update...i went to see this gastro...i didn't like him at all :(
He didn't listen to me...I was telling him how sick i felt with the Asacol but he kept saying that it was probably the UC...now I know my body and I know it's not the UC...Also the other day I started to take 3 Asacol instead of 6 to see if that would help...I still feel very dizzy and sickyish but a touch less and that was the proof for me that it's the meds...

He kept saying to me "you know I have to do a colonoscopy because you might just have hemorrhoids!" I couldn't believe it!
I was livid...
I have no insurance...I paid $250 for 10 minutes in his office...I didn't even take off my coat...he didn't examine me at all...sigh....

He gave me packets of VSL#3 Double Strenght...I told him i was taking the pills (8 a day),I just started them...but he said this is better...I asked him if it was gonna be a lot of $ again because I don't have insurance...but he said just around $200...

Well guess what...i went to the pharmacy and for the 180 packets he prescribed to me it was around $1000 o.O

I only order 20 now and that was $140 something...I don't know what to do...

I might be able to see another gastro on the 13th...

I just don't know what to do with the meds...
My stools are formed, there's some mucus and a little bit of blood, I usually only go once a day, same time...

I'm still taking 3 Asacol a day right now even though I feel sick with them...and today I'll try the VSL#3 packet...

Do you have any suggestions?
I will get a colonoscopy in the nest couple of weeks...


Also is it true than the packets are more effective than the pills for VSL?
I just ordered some pills and I was wondering if maybe i can take more than 8 a day to balance the 3 packets of double strength he prescribed to me...

Any help is very much appreciate it...

Thank a lot!