I'm totally confused! PLS HELP!!!

I lived in another country and was diagnosed in 2007 with what I thought left sided UC. I was on a ton of steroids that knocked it out of my system. I was in remission until about 6 months ago. My doctor put my on prednisone this time and it did't work. She also put me on Asacol and Imuran but I had a bad reactions to both of them. She finally did a colonocsopy on friday and it turns out that my colon is fine but I have severe Ulcerative Proctitis. I'm so confused about all of this because now she wants me to start remicade. I have been doing some research on this disease and med but it doesn't seem like I should be on remicade. I'm wondering if maybe I have left sided UC but only the ulcerative proctitis flared. I have been on a boat load of antibiotics this past year and no dr even suggested for me to be on a probiotic. I'm 30 years old, single mother of two small children and I can't afford to miss anymore work do to this crap. I don't know where to turn or even start to look for answers. If anyone has any input, i would sure appreciate it. I haven't been able to talk to my dr. since the colonoscopy but she wants me to start remicade right away. This stuff scares me and if i have a reaction I'm worried what i'm going to do with my children. I don't have any support system where i live so every little thing counts for me. I feel like I don't know whats wrong with me and nobody clearly explains it.

I started off with proctitis, now whole colon is involved though most of my symptoms come from lower part. I don't think GI is saying Remicade because it's proctitis, more likely the severity f flare and that other meds did not work. Rem did not work for me, but I tried it. I have two small kids too, but luckily I have support, though I still(as most off uus do) often fell we are on our own, even with the docs. Remicade scared me too. Sorry, wish I could help more.

Welcome to Healingwell :) I'm sorry you having to go thru this.

What sort of reaction did you have to the Asacol? Before starting on Remicade, have you been offered rectal meds such as a steroid based enema or foam? Can you tolerate sulfa? If so, perhaps you can try Sulfasalazine?

     I suffered with proctitis too.  Ironically, my disease stayed in the rectum and I suffered with it for twelve years.  I believe the Colazal kept it from traveling further into my colon.

     You can try the rectal meds, worth a shot.  I became prednisone dependent and opted for surgery.  During my years of suffering, I was on 6MP (eight years), Remicade and then Humira...all failed.

     My GI doctor told me I had "moderate" proctitis but after surgery my surgeon told me I made the right decision and that my rectum was badly diseased.

     Proctitis is very stubborn but people do have luck with the rectal meds.  I have a friend who is doing very well on VSL#3 and Rowasa enemas.  The best of luck to you.

Bootiful,

Sounds like a very difficult situation. I have two young children (3 yrs & 1 yr) and find the demands of the family and my colon overwhelming and I don't work outside the home! I am currently in a flare with severe proctitis and it has taken me 6 weeks total on prednisone for my symptoms to subside enough for me to use the rectal meds. Here are some changes I made in my lifestyle to help...

1- More probiotics (taking my usual probiotic 3 times a day instead of 1) 13 billion bacteria times 3 (others on this site use VSL DS or VSL #3)
2- L-glutamine and almond shake in the morning on an empty stomach
3- Snack on Activia yogurt (sounds hoaky but this yogurt seems to work for me!) and hard cheese, no other dairy during a flare
4- Rectal meds (cortifoam after morning BM and mesalamine enemas nightly)
5- 40 mg of prednisone (starting to taper now after 5 weeks)

My GI also suggested Remicade but only because I was feeling very desperate and I wanted a quick fix so I could return to my life. He convinced me that giving the prednisone some time to work would be the best for me because I have always responded well to it in the past. It did take much longer this time and I have been at home for weeks but this decision feels like it was the right one for me. I was able to find someone to help me with the kids in the evenings so I could get some rest and not be so stressed out.

Your GI maybe suggesting Remicade because you are not responding to prednisone or other oral medications. Rectal meds may be helpful. Do you have a friend who can come and help with the kids a few times a week? I know just having someone to takeover dinner, bath and bedtime once in a while has helped tremendously.

Keep us posted on how you are doing.

I agree with PB4, it is rather disconcerning that your doctor did not offer any rectal meds?

Align... that's not a very heavy duty probiotic - IMO.

IMO, you're better off with VSL #3 - with 450 billion active cultures. And if your doctor gave you a prescription for VSL #3 DS, then it might only cost you a small copay.

 

I just went to GNC and bought a ton of vitamins what do you think of these; L-glutamine, papaya enzyme, multivitamin, omega-3, calcium citrate and aloe vera? Am I missing anything that is important? Can I take this Align a few times a day?

By the way I gained weight since i flared, has anyone else had this problem? It seems like most people lose weight? I've never had much of a stomach and now i feel bloated and my pants are all tight.

ManhattanMama
I don't have many friends in my area to help. I just moved and everyone is about an hour away. I wish I lived in the Cayman Islands again at least i would have my kids dad around to help and if I'm going to be in pain, it beats the Minnesota cold. haha

Ask your doctor about rectal medications to treat. Like Canasa or Rowasa. Or Proctofoam HC 1%. And other oral medications that are popularly used are Apriso and Lialda (this is the one I take).

Definitely take the probiotics, they will help. And also be sure to take multi-vitamins and fish oils.

I don't know how you eat, but changing to a "low residue" diet can help tremendously while the colon is inflamed.

Maybe a round of steroids is in order while you get back under control. You can also ask about Entocort (a steroid that works specifically in the GI tract).