Meet Han:
Ulcerative Proctitis Symptoms:
My Story:
Before last summer, I did not know what Ulcerative Colitis was. I did hear of Crones but still didn’t know much about it. Right after graduation and traveling for a friend’s wedding in June 2011, I started experiencing blood but no pain. I thought it was really strange. It was definitely a stressful time when it came to starting to look for jobs and getting situated living back at home.
In July, I finally went to the doctor and had my first colonoscopy which confirmed Proctitis. It was definitely very scary after reading many peoples’ stories of their experiences. It cleared up right away with Canasa but in September, it returned. I was now experiencing pain even on the top of my abdomen which I hadn’t had before. I went to the doctor and they prescribed me with Rowasa enemas. They didn’t think it could spread through the colon in just a matter of months so I thought maybe the pain in the upper abdomen was just diarrhea pains.The pain and blood finally subsided in November 2011 for a good 7 months. I felt like I was back to normal again which I was thankful for. When I feel like myself, I tend to forget that I have this condition and I go back to eating and drinking things that are probably not UC friendly(however I’m not a drinker/smoker) I went through a lot of major stresses during that time too which I was so grateful to not have any problems during.
However, in May of 2012, my lower left abdomen really started to gargle and I felt very gassy. There were a couple saturdays where I just had to lie in bed and sleep off and on because I felt so weak and to help the twinges of pain. It just didn’t feel right at all. I didn’t see any blood though. However 2 weeks ago, I finally saw blood. I went to another doctor to get a 2nd opinion and he scheduled another colonoscopy. I didn’t understand why he had to do that since I thought he could just increase my medication and give me something else. I’m so glad he did schedule one. This past week, my pain was really bad and I came home from teaching summer school everyday to take a nap. I went to the ER on Friday since it was so bad. The doctor didn’t give me anything other than for pain meds but scheduled the colonoscopy for today. I went into it hopeful that it was just the proctitis acting up but the doctor was shocked to find that it is through the entire colon. I’m wondering if it was like that in September thru November of last year too. My proctitis was the spot that actually looked good. I’m now on 30mg of prednisone and Lialda twice a day. I am so scared about the prednisone. Being on prednisone is probably one of my worst fears.
This is a little discouraging since I will be headed up to Alaska in a month to teach in a small village. I’m really hoping that I can get everything under control before then. There are not many doctors where I’ll be going. I will definitely be watching my diet more carefully. I love coffee and sweet tea a lot so it’ll be hard but I would rather not be sick.
Questions:
I flared exactly the same exact time last summer, has anyone experienced that? Like maybe heat tends to induce it at times?
Where I’d Like to be in 1 year:
Rowasa-effective(took several weeks to work)
Lialda-Not sure yet
Prednisone
written by Han
I am just about 23 years old and diagnosed with Ulcerative Proctitis in July of 2011.
Hey Han,
I so so hope that you have a great time up in Alaska teaching! That sounds like an incredible experience waiting to happen that you’re getting ready for.
You raised a pretty interesting question about timing of flare ups. For me, I definitely noticed that I had two separate flare ups that were between the october-December months two years in a row. I guess I’ve always thought that they were probably related to stress from beginning to train for a half marathon, but it is really hard to know for sure.
I’m not sure exactly what you are eating/drinking with your diet, but along with many other people, I’ve found that by using the SCD diet rules which mainly includes cutting out tons of sugars and carbs from my diet, i’ve been able to keep the UC under control and in my case has led to a medication free type of life for the majority of the time since my diagnosis.
Not knowing exactly where you’re headed up in Alaska, it might be interesting to ask some of the locals up there what types of things they do for colitis, rectal bleeding, or digestive diseases in general. They might have some interesting thoughts too.
Best of luck to you, and thanks for sharing.
-Adam
Hello Han,
I’m sorry to hear about your current troubles… you’ve come to the right place! As you can see, there are lots of us out there.
As far as your main question, yes, for some people flare-ups do happen at the exact same time every year. My doctor was telling me about another one of his patients that has a flare-up at the exact same time every year. For her, in the past, that month/season of the year is associated with lots of emotional anxiety caused by remembering past events that took place in that time frame.
Best of luck to you, and lots of hugs!
Polly
Hey Han,
Good on you for heading up to Alaska. All you can do is pack your bag for what you think you may require. As for what happens, you have no control over it. Take it one day at a time and enjoy your experience up there:)
Much Luv
Hi! I’ve been dealing with UC since 2001 and have learned a lot, especially when my body is trying to tell me something. I get bad flare ups each year between March & may. What I try to do is really watch what I eat,drink & take it easy. The last two years have been ok, March-May I mean:) I try to get a head start on being careful before this time of year comes around:) it’s been helping a little.
I think it’s fantastic what ur doing:) not everyone has it in them to do what your going away to do. I always tell my friends who are teachers & give child care ” you are a special breed, and I thank you for being you.” any one who offers their time & has patience for children are winners in my book.
Thank you for moving forward in life even though you have an illness that’s trying to hold you back.
Your an inspiration:)
I was diagnosed with UC in Aug 2008…the whole summer of 2008 was the worse…but I do flare up every summer. I have alot of pain in my stomach…i feel like it is burning, and diarrhea over 15 times a day. I have been on trials of Prednisone and Immuran…and also asacol, sulfasalazine. None of those meds worked for me.
Now I try to control it with diet – anti-inflammatory diet and I also take Metamucil 3 times a day…which for the most part will control the frequency and consistency of my diarrhea. But in past couple of weeks, it hasn’t been working so well. I have had diarrhea for going on 5 years. When I am doing good I usually go 3-5 times a day but when I am flaring up I will go over 15 times a day.
Hi there, I was diagnosed with UC last June 2011 which started off with proctitis. I was admitted to hospital in October and given steroids intraveneously which was amazing. I was then on a reducing course of prednisalone. My symptoms totally cleared up at this stage (Watery bloody stools although quite constipated also. Within 1/2 weeks of coming off the steroids my symptoms came back with a vengence! I am now on my 4th course of steroids with the same thing happening each time I come of them.
I am a runner and am training for a marathon but when I am ill I cant run for more than a few minutes without the massive urge to go to the toilet and I have to stop.
This condition is really getting me down and the consultant is reluctant to try me on any immunosuppressants. Has anyone any advice which could help me get this under some sort of control?
Thanku
Helen,
Your situation sounds very similar to mine. I had originally been diagnosed with proctitis. The doc then abruptly changed his mind and determined I had UC after I had been admitted to the hospital for Kidney Stones in November. I was also a runner. Last winter I had trained vigilantly and was prepared to PR. Unfortunately, a flareup came at the worst time you could imagine, mile 18. I ended up walking the rest of the race (with stops at every port a john and finishing an hour behind my goal time. At this point, I’m still struggling to control my symptoms. I started the SCDiet this week and hoping it works for me. I’ve been on Lialda, Steroids and a few other drugs which seem to have zero effect. I’ve been unable to run and took a break until spring training season starts, hoping that by then I’ll have this under control. Personally, I am looking forward to my long runs and lining up at the start again someday. Hang in there.
Jim, just curious to know how your symptoms have been since starting the SCDiet last month??
Hello Han. I was diagnosed with UP in Jan 2002 (symptoms started in October 2001). I took Asacol and enemas for months while it got worse. My husband brought a cot to the office for me to nap, and I went from (5’7″) 130 to 110 pounds. I was sick for a couple years until I followed the SCD diet. It took about a year, but I slowly got energy back and had normal stools. After feeling well with no drugs for several more months on the diet, the weight then came back in what seemed like an instant.
I haven’t had to follow the diet strictly for the past several years. I added back foods one at a time until I was good. Still have trouble with milk, wheat and sugar. If I eat bread or sugar once I’m okay. A few days in a row would bring symptoms, which would go away after I went back to my normal diet.
Anyhow, this fall I’m having constant symptoms again. I remember my father, who was an emergency room doctor for 35 years, said problems like heart attacks would increase in the spring and fall for some reason. I think my symptoms now were brought on by recent high stress/distress, however I couldn’t help but remember the season it all started was the fall.
Good luck to you.
CC
I tend to get flare ups every May and I wonder if it is related to the higher pollen count. I never suffered from hayfever until my mid twenties which is about the same time I had my first flare. As hayfever is an inflammatory response I wonder if it could be related to colitis. I also tend to flare in January and I think it’s related to all the sugary sweets I eat over Christmas (sugar apparently ferments in your gut and creates bacterial imbalances?) It might just be pure coincidence though as everything seems to be with this illness which makes working it out and managing it so difficult and frustrating.
I also had my first hay fever when I started having symptoms of proctitis. It was in my mid twenties as well.
I seem to flare every year at this time. I have no idea why. This is the third year in a row and I was diagnosed three years ago.
http://www.goldbergclinic.com in Atlanta, GA