My name is Suzie B. I live in Utah and my daughter has Ulcerative Colitis. Rosemarie is eleven years old and has had UC for nearly 5 years. She are currently taking Sulfasalizine with folic acid. She’s just a kid. How do I go SCD or Paleo and get her enough calories? Trying to go grassfed and organic… sigh…
Proctitis UC – What is It, and How to Fix It?
These last two years have been very difficult. Bleeding, bleeding and more bleeding. Not gushing like when she had her first flare just before she turned seven. That was scary! Just blood coating fairly well formed poop. Now we know why.
We were referred to a great pediatric g. i. doc, Dr. Harnsberger, by a friend. I can definitely refer you to some docs NOT to go to as well… We just had her third colonoscopy done because her stool samples were coming back negative for white blood cell count. If she were positive for that it would mean her body is fighting stuff down there or something-er-other. She was also negative for c-diff. She had well formed stools but would almost always have some blood coating the beginning of each poop. So there is clearly inflammation down there.
So we had the scope, and some blood work done… Her blood work says she healthy and well, but the tissue sample from her colon indicates active UC. Dr. Harnsberger diagnosed her with proctitis. In the pictures the first two inches or so of her large colon are clearly inflamed and ulcerated, but after that everything looks fine. We currently have her on an antibiotic ciprofloxacin, that is supposed to target the end of the colon. I’m not sure it’s helping.
[box type=”info”]Proctitis on wikipedia – click here[/box]
One thing I have noticed is when Rose has foods that are blended, or higher in soluble fiber that seems to make her poops smoother and there is definitely less blood with her stools. I’m just trying to find foods that are consistent.
Anyone out there who has put there proctitis UC in remission?
Do I really need to have her on soup and gelatin and applesauce for a couple months til she clears up?
Adam, if you could please send me the free UC tips ebook that could be helpful. I have read your story, and it is wonderfully inspiring. What I would love to know is for those with really tough cases of UC how long has it taken for you to come out of it. What has worked?
Readers, those of you familiar with proctitis what has been helpful for you?
I really don’t want to do remicade!
Suppositories?
Foods that help with inflammation and keep poop soft?
I’ve been keeping her off grains and dairy. Nuts, and and cruceriferous veggies are too much for her right now.
Chia, opinions on chia? looking for foods to gel and smooth things along. It’s hard too keep her drinking and hydrated as well. Bleh!
Thank you sooooo much!
Suzie B.
submitted in the Family Members of UC’ers venting area
(Suzie’s previous story titled: Stopping the Bleeding – My 10 Year Old Has Colitis – read here)
My name is Suzie. I live in the West Jordan, Utah, USA. I’m 35 and my nine year old daughter Rose suffers from U C. She had her first flare with blood and diarrhea in November of 2010. We believe it was do to a contusion she received when she fell out of her bunk bed and the ibruprophen may have exacerbated things as well. Then about 4-5 months later her first flare happened and she nearly had a blood transfusion. Scary!
Hi Suzie,
Thank you very much for the update, and a big hug to Rose, she has been through way way more than she deserves, but for sure she’s a tough kid, and I hope she still has time to smile and be a kid even though tummy stuff is a big part of her life.
I will most definitely email you the free ebook, but just so you and others know, it is included in the free newsletter. You just need to go to the newsletter sign up page ( https://ihaveuc.com/newsletter/ ) and you’ll receive it after you confirm your subscription. But I’ll message it to you anyway.
There are some really good posts regarding proctitis here on the site that I think you should read. For example, I researched back several of them, and here was a comment left on Bobbie T’s story titled:
Ulcerative Proctitis Newbie
written January of 2014.
The comment was from Andrea M and it reads:
“I started out 6 years ago with simple Proctitis, and after a 3 year remission, has returned as a nasty flare of Colitis. In the good old days a Canasa dose and prednisone instantly cured all symptoms. And by remission, means zero blood, zero mucus, zero cramping. Totally NO symptoms. I was symptom and med free for 3 years, pretty sure this flare was brought on by the family flu. Still working meds to get this flare to go away. But something I have found to be Integral for survival, was switching to a “low residue” diet, so that the bowel may heal. Sounds like your current flare is very small. By cutting out all fresh fruits and veggies, nuts and seeds, and maybe lower dairy content, your flare should clear up with allowing the bowel to heal with these low residue foods and the Canasa alone.”
Anyways, here’s the link to that post and below are links to other “Proctitis Posts” that might be useful for you to read.
Ulcerative Proctitis Newbie: https://ihaveuc.com/ulcerative-proctitis-newbie/
One Year In I Want Out: https://ihaveuc.com/one-year-in-i-want-out/
(written by one of my favorite UC’ers named: Princess Poopy Pants…:)) back in 2011. Princess must be an experienced Proctitiser by now.
Patricia has been diagnosed with Proctitis for almost a year now, here story is here and you can comment on her story, and she’ll be notified that you messaged her like the other stories: https://ihaveuc.com/advice-for-a-newly-diagnosed-very-sad-up-sufferer/
And Suzie, here’s a final link with all stories that have been “tagged” with “proctitis”: https://ihaveuc.com/tag/proctitis/
One thing I wanted to say, and I’ll preface this by saying I myself don’t take any prescription medications but…my GI doctor (who himself has ulcerative colitis) who I think the world of even though we disagree on some things has since the first day I met him recommended salofalk suppositories especially for lower end inflammation. Anyways, wanted to throw that in there since you mentioned suppositories in your story.
Soft poop question is a tuffie. I still don’t think I have that figured out, but one thing that I notice which is consistent is that when I am hydrated, things tend to be softer compared to having a day of noticably less water and man…bowel movements are usually harder and if super dehydrated…almost painful.
Wishing you both the best, and you’ll get an email from me in a moment.
Adam
Hi! The only thing that works for me are the suppositories, Canasa. Everyday and when I feel that weird tingly, burning sensation I will do any other suppository. The pills don’t work since they become inactive by the time they reach the lowest part the colon. I also take calcium and magnesium at night. The mag softens everything and you don’t even have to push when you have a bowel movement. If I skip Canasa, pro titis will
Return within a few days
Hi Suzie! I second Lisa’s feedback above. Canasa is great at targeting the rectal inflammation – another thing that I’ve done when I’ve flared is a round (2 weeks) of hydrocortisone suppositories. It’s a steroid, but it’s not systemic so you don’t get the nasty side effect. With my last flare, my GI doc had me do hydrocortisone suppositories at night and Canasa during the day. I’ll also say that Canasa used to come in 500mg strength, and now it’s only in 1000mg – but that’s the same for 200 pound men or little old 5 ft tall me! They are really expensive and I cut them in half – I’m sure your daughter could do the same. These topical treatments will likely give her relief – the only time Canasa didn’t help me was during my first flare, but that’s because I had pancolitis and everything was a mess. Give it a try! Hope Rosemarie feels better soon.
Thank you. I will talk with our doctor about it.