Flare up again... What should I do ?

Hi everyone

I was diagnosed with proctitis in october 2012. My GI gave me salofalk (5-asa) suppositories, but they didn't do anything, so he prescribed me oral salofalk with salofalk enemas. I reacted very badly to those two (throwing up, headache, general feeling of dizziness, weakness, etc) after the first dose. By then I had 10-15 BM with Bloody D. My Gi told me that I was probably intolerent to 5-asa so he gave me cortifoam. I tried it a couple of weeks but it didn't help at all. By Christmas, I had 20+ BMs with even more blood loss. I was finally hospitalised in january 2013, where I received blood transfusion (my hemoglobine level was 5,4 g/dL) and IV cortisone. Then I was on prednisone (40 mg for a while, then 35 for a week or two, 30mg for maybe 6 weeks and slowly tapering) while introducing imuran. I went into full remission, and except for mucus and gas once in a while, I was well. I was (and still am) on 150 mg of imuran, which is the maximum for my weight

I had a flare in march 2014, only 2-4 BMs a day, but with constipation and a lot of blood/mucus... I was so scared to be anaemic again, I tried budesonide enemas, which helped, but only for a month and I never went into full remission. The flare suddendly stopped after 3 months when I was taking antibiotics (for an unrelated condition) and probiotics (but with only 6 billion UFC, so it shouldn'T have helped). I didn't understand and neither did my GI, but well I was happy.

Unfortunately, I have another flare right now. It started a month ago. My symptoms are pretty mild (1-2 BMs, mucus and blood) but I'm so scared of it getting worse.. I take nightly budesonide enemas and cortifoam in the morning, but it doesn't seem to be helping

Now here I am, my Gi prescribed pred (40 mg 1 week, 30 mg 1 week, 20mg 2 weeks and tapering), but I'm 19 years old, just stared university, met someone... I don't want to gain weight and have a swollen face full of pimples. The other option would be the biologics (remicade or I think he mentionned another new one)

Do you have any ideas on what I should do? I'm now taking 100 billions UFC probiotics (renew life) but it doesn't seem to change a thing.

Thanks for reading, I wrote more than I intended

Post Edited (zephyraph) : 10/3/2014 10:08:56 AM (GMT-6)

If your insurance is good enough, ask for Uceris.

Look into other options except monoclonal antibodies, like Sulfasalazine, LDN. You are too young to start with monoclonal antibodies. Although they will help you, if you get antibodies against them, it will be a short lived stint.

Look other dietary options and the supplements that may help you maintain remission. Go through the old threads and make a plan of action. Everyone reacts differently and gets help from different stuff so its upto you to trial and error and stick with something that helps.

@Cavalier9
Thank you for your answer. Do probiotics help that much with proctitis ? I'll look into it, thanks :)

@deltaforce
Unfortunately, I live in Canada and I don't believe that Uceris is sold here, which is a shame because it seems awesome. I think that Sulfasalazine is the same as Salofalk (5-asa), isn't it ? Because my GI told me that if I was intolerent to Salofalk, then none of them would work. What exactly is LDN ? I read it on the forum but my Gi never mentionned them. Can I buy them over the counter or do I need a prescription ?

For the dietary options, I've always found that food didn't have a large impact on my symptoms. I no longer eat diairy because milk made me uneasy and I try to eat healthy food as a whole, but I indeed should look into it. Thanks.

@kasbern
I'M taking the same antibiotics right now. I don't remember how much time it took to help my flare the last time, but it's only been two days now, hopefully it'll work.

Actually, I forgot to mention it, but while my initial diagnosis was proctitis, while hospitalized, they did another colonoscopy and I was diagnosed with pancolitis. However, my symptoms now are way more similar to proctitis's symptoms, so I'm a little confuse.

I'd ask for remicade and keep on some type of rectal medication. I don't believe that anyone is too young for the biologic drugs. I'd say you are too young to suffer with this and not try all the available treatment options.

Thank you everyone ! your advice is invualuable.

I'll try WOO and resistant starch, they seem promising.

Actually, I don't know if it makes sense, but I don't want to take remicade. Not because it is a strong IV drug with potential side effects, but because it is the "last step" before surgery which scares me :/ and I'd rather keep remicade for a time when they'll be no other solution

Anyway, Hopefully the antibiotics will help nd if they don't, do you think that I should take the prednisone ? Because I've also read that they can stop working if you use them too often..

Thank you once again :)

I absolutely agree with Cavaliere, in my opinion nothing really matches vsl, everything else is just an ersatz. i've been in total remission since March this year, no meds at all, i attribute this success only to vsl.

You really need to turn your focus away from steroid solutions. Your disease is becoming steroid resistant and you really need another path to remission. Your doctor is right, there is nothing "stronger" than a cortisone enema.