Introduction:
I am a 45 year old woman living in the Southwest diagnosed April, 2013 with ulcerative proctitis via colonoscopy and biopsies; also vitamin D deficient, have rosacea, chronic cough/reactive airway, eczema, seasonal allergies.
Some more about me:
I love art, design, architecture, graphic design, making things ( knitting, jewelry making, sewing, stained glass, pottery, photography ); biking, hiking, snowboarding, tele-skiing.
Symptoms:
Rectal bleeding stopped with Cortifoam; started Specific Carbohydrate Diet (SCD) a few days after starting Cortifoam.
Ulcerative Proctitis Diagnosis
I had 2 months of painless rectal bleeding before I was diagnosed with ulcerative proctitis in April, 2013. First I thought it was hemorrhoids and tried over the counter Tucks and Preparation-H to no avail. Then made an appointment with my regular doctor who used an anoscope and said I had bleeding hemorrhoids and Prescribed Anucort suppositories. These also made no difference and she was wise enough to refer me for a colonoscopy where the GI doctor took biopsies and diagnosed me with ulcerative proctitis to my surprise.
The GI doctor told me several things that day; there’s no cure but there is treatment, they don’t know why people get it, diet doesn’t affect it, people can get anemic from it and proctitis doesn’t carry an increased risk of colon cancer. Then I had a big plate of pad thai with shrimp and chicken. And then a pint of Haagen Daas. Caramel cone. I did a lot of Internet searching and luckily found this website, read the http://www.breakingtheviciouscycle.info/ site on SCD and handed over my chocolate Easter bunny to my boyfriend. I am a sugar addict and will eat it until I have to take a nap. But I read a lot of stories about people starting with ulcerative proctitis and how it progressed to colitis. Which got my attention. So I went out and bought almond flour, coconut flour, fish oil, a yogurt maker, made a list of legal/illegal foods accordi ng to the SCD and now I am on day 3 of this diet. I have eaten so many nuts in the past few days, I’ll probably need my gallbladder taken out! I’ve used some recipes on this site http://www.scdrecipe.com/ and so far it’s still a novelty. I was fine for the three days after my colonoscopy, then I was so tired that I slept for about 13 hours for a couple of days. I’m beginning to wonder if I am anemic.
I have questions like, I was invited to dinner at a friend’s house next week, do I just break the SCD for one meal and hope for the best? And what do I eat when I go to Africa later this year? Has anyone diagnosed with just ulcerative proctitis ever NOT progressed to colitis?
Medications:
Cortifoam-haven’t seen any blood since I started on that 3 days ago.
written by “C”
submitted in the colitis venting area
I am a 45 year old woman living in the Southwest diagnosed April, 2013 with ulcerative proctitis via colonoscopy and biopsies; also vitamin D deficient, have rosacea, chronic cough/reactive airway, eczema, seasonal allergies.
C …
Sounds like you’re off to a good start but don’t deviate from the diet. Take advise from people on this site. You need to get ahold of this disease NOW … try to prevent it’s progression. I started out with ulcerative procotitis too … but now have full blown UC which is worse than what you have.
GOOD LUCK!
im an indian.i had uc for 7yrs.I use flax seed powder,it helps me lot.now i have not taken any medicine for long time.Also im taking all foods.
Thanks! After reading about UC over the last couple of weeks, I definitely am motivated to do everything I can to stay well. I’ve never had such a healthy diet in my life. I’m taking supplements, making my own yogurt, have kept with the SCD faithfully which, incidentally, has really helped with the rosacea. I’ve felt as though I’ve fallen between the cracks at my GI doctors office (phone calls not returned, colonoscopy scheduled too far out, prescription prescribed in the wrong dose) and have been persistent in getting answers; my doctor didn’t return my call in a timely fashion, so I asked for the nurse practitioner; she was right on top of it. This website (ihaveuc) has been great because there is a lot of real world information in one spot-saves a lot of time and it can be depressing and overwhelming at first so it’s quite comforting to see Adam yucking it up in Mexico making something good to eat or holding rolls of toilet paper and smiling!
Great post C!
You are right on point. Keep searching for the answers that you want and need. Don’t take no for an answer. Don’t accept anything as gospel. Learn. Knowledge is power, especially with UC. The so called specialists don’t know enough about UC yet. They are still learning too. Share what you learn and what works for you with the so called ‘professionals’ and other UC sufferers as well!
What you said about this website is so true. It has truly been a life saver for me too! I have learned so much, and I believe in myself now, as well. I got the courage to try natural stuff from all of the fab info from others on here. Now, I am med free!! I would have never thought that I could be, according to what the doctors told me over the past 15 years…
Bev
:)
C,
No, don’t break your diet for one. I’m not a SCD’er but even when I break my own rules I usually regret it the next day (nothing like bringing back full blown symptoms) but I def. don’t feel great. I have full pancolitis though, now in remission. Call your friend and explain the situation, I mean people accommodate vegetarians and vegans alike and that’s not typically even for a health reason, so your friend should understand how important your requests are to your health! :) And just remember to send them a little thank you gift. Good luck!
Hi Angela,
I am replying to you bc you mention pancolitis. I have been in pain with constant cramping/diarrhea for 8 days now. I am 44 years old and a mom of three. I started to notice swelling/pain in my hands for about 1 month before this started but just shoke it off to the beginning of arthritis. Anyway last week this started and i initially thought it was a virus. I am an RN and even finished my 12 hour shift. Spent the whole next day (day 2 – which happened to be my birthday) in bed. By day 3, Friday, i went to my doctor who thought it was possibly C-diff bc i have been on an antibiotic recently and i am a healthcare worker. Finally ended up in the ER with CT-Scan which revealed diffuse pancolitis. I have been to GI but cannot have colonoscopy yet bc of inflammation. C-diff cultures have come back negative twice. My symptoms, although slowing somewhat from the every 15 minutes in the bathroom, are still persisting now day 8. I am only on vancomycin. Please tell me what to expext as far as healing from pancolitis if this is not your first experience with this. I really appreciate any feedback, and sure hope you feel better soon.
Felicia
I was also diagnosed with proctitis about 2 years ago. My doctor gave me the typical speech “diet has nothing to do with it.” Im currently in one of my worst flares since being diagnosed and started the SCD diet about 4 weeks ago after getting fed up with my doctor and reading some of peoples stories about full blown colitis. My doctor still thinks I just have proctitis even though I’m convinced its getting worse. I finally decided to take control of my body and started the SCD diet. I have never thought too much about what I ate or being healthy, but I am noticing big differences in how I feel and plan on continuing the diet.
Don’t break the SCD diet. When I go to friends I usually just explain to them the situation and bring my own meal. Once I explain it to people they are really understanding. If they are having trouble understanding I usually throw out the “bloody diarrhea” symptom and they stop asking questions! As far as going to Africa, depending on what part of Africa will depend on the type of food. Right before I was diagnosed I was actually in Africa and that experience was the worst my colitis has ever been. Fried foods and spicy foods are not great for colitis and that was a majority of the diet. I basically quit eating about 4 days into it and lived on water and rice for the next 3 weeks. Take as much food as you can with you and drink lots and lots of bottled water. Be very cautious.
Hi, I was diagnosed with UC over 10 years ago and although flare ups were not regular (I only took medication when I had a flare up not in remission) subsequent colonoscopies showed some spread of damage further in the Colon at the top.
I generally only get a flare up when I drink too much alcohol so avoid more than one or two alcoholic drinks now.
I have now had a letter from my consultant confirming I have ulcerative proctitis and not UC that I was originally diagnosed with.
They were keen not to diagnose me until they knew for sure so I wasn’t diagnosed with UC until my second flare up and second colonoscopy.
I have heard of proctitis turning into UC but not the other way around as I was told it was incurable.
I just treat proctitis when I have a flare, which is maybe once a year to 18 months.
Obviously I am really happy and have no complaints but am looking for anyone else who was diagnosed and definitely had ulcerative colitis that turned into just proctitis.
I don’t follow a diet but I don’t eat pineapple as have had a problem with this before and I am careful about certain foods.
Everything in moderation seems to be okay generally for me.