Stubborn Proctitis - HELP!

I have been using Rowasa pretty regularly since the middle of June when I had some blood tinged mucus on my stool.

Fast forward to last Thursday I had a flex sig which found moderately active colitis in the rectum (0 - 3 cm). Doctor recommended 1 steriod supp and 1 canasa a day... instead of the steriod supp due to cost ($400 for 12) the doc prescribed cortifoam. I couldn't get the cortifoam until Monday so prior to I was taking 2 canasa/day. Well after each night of the cortifoam I have had significantly more blood than with the canasa - any thoughts why this is occurring?

Prior to the scope I was having 1-2 formed BMs in the mornings with some blood on the tail end of the stool. Now I'm having movements that are only blood.

There is the potential for me to move up the medication ladder (even though its such a small section) to imuran or a biologic.

What would you do in my shoes?

My signature isn't updating but I've been taking 4 lialda/day since May 2016 and Rowasa/Canasa as needed.

The doctor suggested suppositories because my inflammation is only at 0-3cm (just above the anal canal) and thought these might hit it better than the rowasa.

I was not off the rowasa on holiday. I broke my tibia and fibula at the beginning of May this year so my health has been a bit of a roller coaster since.

I am confused at the worsening of symptoms since starting the cortifoam.

Patience, I'd give it longer. You only started the current treatment on Monday and it is now Wednesday.

Hi! I'm new to all of this. I was diagnosed with proctitis and colitis. I started sulfasalazine 5 weeks ago but about 4 weeks in I noticed a change in taste. I also started this sodium butyrate supplement I found on Amazon at the same time as the taste change. I thought it was the butyrate so I stopped after 5 days of it. But it's been 12 days and I still have no taste. My dr thinks it may be the sulfasalazine after all and he switched me to lialda yesterday and I started today. My concern is sometimes I feel like I have canker sores in my rectum. So painful. Should I ask for a suppository or enema prescription? My stomach never hurts and I've never had blood but there is this constant pain in my rectum. It seems like such a small area to heal but it's been terrible for 9 months. I finally was diagnosed in September and the sulfasalazine wasn't working that great anyway so I'm sort of glad I'm switching. Now it's this canker sore pain down there and no taste I'm getting very depressed and frustrated. I just need to believe it will get better. So basically as of now I'm only on lialda (day 1) 2 pills a day. Any other suggestions? Im so glad I found this community. I've been so depressed and alone about all of this. I've had to take some anxiety and antidepressants. Now I'm just on the anxiety when I can't sleeep. Thanks for any help. Ps. Do sitz baths or Epsom salts ever help?

Post Edited (VeroMom) : 11/8/2017 3:06:53 PM (GMT-7)

VeroMom said...
Should I ask for a suppository or enema prescription? So basically as of now I'm only on lialda (day 1) 2 pills a day. Any other suggestions? Do sitz baths or Epsom salts ever help?

Yes ask for a prescription for an enema (rowasa) or suppository (canasa). A typical dose is 4 lialda a day, ask for an increase. Sitz baths help if you have an anal fistula or abscess, but not otherwise.

Thanks everyone for your help! I asked for the canasa suppositorities. And got them last night and started this morning. I hope they will really help! I'll keep you posted. Thanks again for the advice. Nice to know you're not alone. PS Has anyone heard of those butyrate supplements or LGlutamine? Are any of your doctors suggesting supplements? What about George's Aloe Vera Water? One more question. Are you all gluten free? I'm still not sure. My dr says just to eat normal but healthy. I've lost 30 pounds and am now underweight. I developed an anxiety about food when I read about how most food causes inflammation. Now I barely eat. I did see an allergist whose tested me for 80 food allergies and I tested negative for everything. So confusing. Thanks again. God bless!

Post Edited (VeroMom) : 11/10/2017 2:55:12 PM (GMT-7)

Update from me:

Still struggling and I've been on various rectals (rowasa, canasa, cortifoma) along with my lialda for the better part of 5 months and we still can't get rid of the blood... so meeting with the doctor next week to discuss immunosuppressant options.