Confused and in pain

Hi,

I was hoping to get some insight from those who have suffered over the years with this so far for me debilitating illness.

So i was diagnosed with UC Nov 2012, prior to this was advised i had ulcerative proctitis and prescribed Pentasa suppositries 1 b4 bed every night. Now i had a horrible surgeon who refused to explain to me the seriousness of taking meds and more of an insight of the ilness itself so i assumed once i felt better no more meds ? WRONG ! So i went down hill fast, going from constipation and slight blood with BM's to being admitted from heommoriging (bad spelling i know) cramping i had never experienced to the point of it being colicy. I was ordered for a colonoscopy and diagnosed UC all through colon almost. Soon after went on 30mg pred, 4 sulfersalazine - felt better within days, then got kidney infection and to follow that my bloods came back and they switched me to salafold otherwise known as (Asacol) so at this stage i thought i had achieved remission ? another bladder infection, followed by another and another...... I had Alprim for them all bar the first.

Now it seems i am flaring again :-( It has taken me this long to get to 5mg of pred due to the fact i was on antibiotics so much for bladder infections that it was keeping my flares at bay. Now i believe i am in a flare ? My stomach pain comes in waves and is so painful that i almost feel i wanna pass out, no real loose BMS just mucos and soft slimy BMS. I am at a loss. I am on 4 Salafolk daily, i have moved to a new town and cant get to see GI for a month ! I have increased my Salafolk to 6 but i am not increasing pred as i want out of it. Is all this pain normal ? Is there other drugs that will ease my pain besides codeine ? Is it safe to increase my maintenance drugs ? The doctors here a hopeless, so clueless. Will i ever achieve remission ? And is there a link with UTI's ?

It's so frustrating when your doctor doesn't take the time to talk to you about this disease. After all you are seeking their help to help you battle this.

One big part of the problem I think is that they really ont know how UC is going to behave in anyone. I doubt your not taking your meds once you felt better totally caused your flare right now but when you achieve a remission it seems to be a good idea to stay on some mantainance drugs.

I think when you taper prednisone nd all your symptoms return, you were not in remission but rather the prednisone was covering things up. I also have had more Utis since being diagnosed than ever before.

I also have a doctor who is not taking much time with me but there are so many knowledgeable people here who will help you out, so keep asking.

Have you done any dietary changes at all? Are you taking probiotics, they seem to help a lot of people?

Good luck and sorry you're feeling so lost.

Thank you all for taking the time to reply its good to get some feedback. In response to my constant uti's the frustrating part is i am trying everything to prevent them, drinking bucket loads of water,taking cranberry pills daily,wiping front to back etc. I think my immune system is just so broken. As for my maintenance drugs im pretty sure salafolk is same as asacol? thats just what its marketed as in here in australia. I take a pro biotic twice daily and have just found a better one with morecstrains that im going to try. As for my diet i cut gluten out and i have been lactose intoletant for a few months. I watch what i eat and really never eat take away :-( with my uti's so far i know it not related to intercourse as i have not been active for 6 months as my relationship crumbled soon after my diagnosis they just could not deal wth me being ill. I am wondering if i am reacting to salafolk as it is 5 asa maybe i am intolerant? who knows i am clutching at straws.