Hi, My name is kaybe from Florida :) I was diagnosed with Pancolitis officially in February, 2012 but have had symptoms stemming as far back as 2005 that masked as “preservative food allergies”.
Currently suffering from another flare up…the third in 7 months (I was in a flare up when diagnosed, then another during a high stress-work situation, then now out of nowhere!). My current goals have been reduced to one day at a time…just trying to get my body to get in control…which has only been for a few months at a time.
UC has changed my life in the fact that I actually have a diagnosis for what was always diagnosed as a “sensitive stomach”. I have always been healthy, athletic and pretty much able to eat whatever I wanted without repercussion. Back in 2005, I had a severe case of food poisoning and since then, everything changed. At sporadic times, I would essentially loose control of my bodily functions after I ate, I started to get really tired which I put down to finishing up college and working etc. I would even get instant sickness after eating my appetizer salad in a restaraunt.
I have never been a puker growing up, so that pre-sick feeling started to get me worried. I went to my primary health care doctor who further recommended that I should see an Allergist. I took every allergy test under the sun and was told that it was negative but my reactions were probably from an allergy to preservatives (a non-tested reaction). So upon the doc’s recommendation, I was careful about eating foods that did not contain allergies and recorded foods that gave me specific reactions.
Working in education, I come into contact with children and their germs daily (!), so last October, I started to have chronic diareah for about a week (complete liquid nastiness!!) then it would ease (after self-medication) and I returned to a normal looking poop. I figured it was just a bout of stomach virus that was going around my school until it started again. Still being careful with my food, I figured that it was just a reaction to a preservative that I might have eaten. I also started to loose weight, my clothes became looser but I wasn’t too concerned with it. I continued to have sporadic ‘attacks’ in which my body would shake from the pain and I would cry out on the toilet for not getting the relief that I needed. My boyfriend was amazing through all of this- he would stay awake with me during these times, and hug and massage my back to get me to calm down and relax my tense stomach-poor guy said he was scared to death each time because he felt helples s to the pain that I was in. I travelled overseas to visit family in England over the Christmas break and I continued to have crazy, inconsistant pooping both in amounts and form. I once again put it down to a change in diet, since I was with family, I was indulging in forgotten edible pastimes and still figured it would pass…immodium was key to reducing those toilet visits!!
When I returned back to the States and back to work, I again started to get liquid diareah (out of nowhere!), I had to call for coverage for my classroom so I could run to the restroom before I had a bad kind of accident! On this one occasion, I made it in time to the toilet then I found blood, a lot of blood, in my underwear and all over the toilet bowl. I freaked! I ran into another teacher friend, who was aware of my wierd inconsistancies, who told me to call a GI doctor that day. I called, made an appointment. When I got to see the doctor, he listened to my ‘plight’, gave me Loestil to help me control my bowl movements and ordered a colonoscophy ASAP to rule out any number of potential diagnosis and to hopefully give me a true diagnosis…I also found out that I had lost 27lbs in the space of 8 months For a week, I was scared to death that I might have had colon cancer (the internet is a dangerous place to read medical journals!). I had my colonoscophy and the D r. told me that there was no cancer but it was the most severe case of, in his own words “an angry colon” that he has ever seen…pancolitis. He started me on Apriso (4x daily) and enemas (a whole new ball-game of medication) and my symptoms dramatically improved. I told my boyfriend that I would have to be dying on the floor before he would ever see me take that medication!!
The GI Doc has essentially saved my life by helping me find ways to gain control. I see him every other month and he is available for me to call if I start to experience new symptoms. His goal was for me to get as close to 100% healing as I can using the least dangerous combo of medication. I have learned that high stress situations re-active my symptoms into a flare up which was first treated with Prednisone- not a medication that I even wanted to take but the pain/blood/sickness was at an unbearable state-either that or hospitalization.
My family has been so supportive in this GI journey…from family discussions about the types of poops I do (!)- we have a number system 1-no bueno to 10-solid success! I was with my boyfriend when I was officially diagnosed and he has been my rock…from buying super quilted TP and never questioning how much I can go through in a week, to keeping babywipes and air freshner in a basket in each of the toilets in the house. He even changed his diet so that we eat the same things together and cut out foods that make me suffer more. He suffer’s from Acid Reflux so we take care of each other (I carry meds in my purse for him at all times!) We make quite a pair-issues at both ends! But this guy is amazing. Our code word for “how do you feel?” after a toilet visit is “solid success”- my ultimate goal.
My biggest concern is the fact that I am still not in control. I take my meds daily and I am still having flare ups and random symptoms. I worry how it will effect my future, especially starting a family. I know I can temporarily relieve symptoms as it relates around my work and lifestyle but still want to get to a day where I don’t have to worry. My doctor says that this is possible and we are taking the medication in slow stages to remain safe and have the least disruption to my life. I am scared to death that in the future, this could lead to colon cancer.
Where I’d Like to be in 1 year:
In one year, I hope to be in control on the least amount of meds that I can get away with! In life, I know my boyfriend and I will be together-I might not be already married in a year, but def. engaged! We have so many goals together and I feel that this (pancolitis) is not going to rule my life and direction. My body needs to find a balance for improvement.
Currently: Apriso (x4 Daily), Women’s multi-vitamin, BeYaz, Spironoctolate
-weirdest side efffect? motion sickness that I have never had before :(
Flare Ups: Prednisone (not that I want to take it) has been the most effective with a step-down method of 40mg-5mg every five days.
Future: I was scheduled for another colonoscophy to “see” the healing process to further determine a path for control- due to my current flare-up, it was rescheduled again in order to give my body time to come off the steroids before evaluating healing. My Dr. and I have discussed the next level of medication, remicade, as a stronger med to help jumpstart me into remission being that my Apriso is not quite cutting it any more.
written by Kaybe
submitted in the colitis venting area