The Day That Changed My Life

Introduction:

Hi I am a 31 year old mother of a 4 year old and 2 year old. I have been battling UC my entire life. I was finally correctly diagnosed in January of 2001.

Story:

Learning to deal with Ulcerative Colitis has been quite an adventure. As a young child I always complained of stomach pain. My parents would take me to see our Family doctor and they would tell my mother its in my head. At one time I was diagnosed as lactose intolerant and then at a later date I was told I was wheat intolerant. Both diagnoses were obviously close but not right on. Learning how to eat has been quite a struggle. Most days I have been beyond frustration and ate what ever has been in my path. Looking back, I kinda feel like Mrs. PacMan. The little monsters always ended up getting me with my trips to the bathroom. Unlike many of the posts I have read on this sight and others I am a little different. I can not stop getting bigger.

Most people struggling with UC have troubles keeping the weight on. Not me, I can not keep it off. I have horrible sugar cravings and poor self control. I have stopped at Tim Horton’s to get my family doughnuts and then ended up eating a half a dozen before I get home. I have eaten an entire package of Oreo’s in one sitting. And my husband knows if he leaves anything sweet in my sight he can say good buy to it. I am a closet sugar-hollic. I hide from my husband, children and rest of the world. I have joined Weight Watchers 3 times, I was successful once. The other times I have joined I have had horrible constipation from the dietary changes. It has put me in hospital 3 times in the last 2 years. So needless to say, I did not stick with it for very long. Due to all the difficulties that this horrible disease has brought me I have learned to adjust my life for it. I do not go anywhere that does not have a bathroom.

So living in the Mid-west the weather finally broke, and so did I. I finally have had my very last straw pulled. This week we had a very beautiful day. I decided it was a great day to take my children on a road trip. I got extra cloths for the kids, snacks and drinks. We got into the car and drove. I really did not have a designation in mind. I just figured we would do some park jumping. I found this great little beach with a fantastic playground for my children to enjoy. Soon as we arrived I had a terrible flare. I had to go. I had to go now. I ran up to the bathroom with a childs hand in each of mine. I went to pull on the door and sure enough it was locked. So here I stand, with my 2 young children biting at the bit to hit the playground, having to go with no where to go. I held my breath and tried to hold on. I tried to suck in all the air in my lungs. My son, standing next to me teary eyed, looked up and said “mommy what are we going to do”. The next thing I know, my digestive system exploded. I had bowel running down my legs and into my shoes. My son was sobbing. I was mortified. Here I stand covered in poo, with the cool wind blowing on my wet pants, freezing my legs with a crying 4 year old who can not play on the play ground.

I stood there for what felt like forever trying to come up with an action plan. I ended up finding a blanket and plastic bag to cover my car seat. I sat down in my bowel and started to drive home. We had managed to get about an hour and a half from home. I called my husband sobbing, he told me drive, just get home. As I was driving down the express way (I am going to get vulgar for those with weak stomachs) sitting in bowel bubbling around my bottom and legs. It was the most disgusting feeling I have ever felt. About 20 minutes later the bowel was starting to burn my legs. In tears I started to pray to god that he could find me a secluded place so I could clean myself up. I had to get out of my cloths. I turned down a dirt road, and another and another until I finally had my prayers answered. Here is a un-maintained road with a sign stating enter at your own risk. Luckily I was driving a truck. I stopped the truck on the side of a empty farm field and some shrubs. I got out o f the truck, opened the front and back doors and stripped down my cloths. It was just everywhere. I found a towel that happened to be in the truck and started to wipe my self down. I put my soiled cloths in a plastic bad along with all the other debris. The bowel had stained my legs and would not come off. I took my children’s lemonade and poured it down my legs to wipe off the stains the best I could. I had an extra sweatshirt in the truck which I wrapped around my waist and zipped shut like a skirt. I got back in and drove home.

This event is why I am here on this page. This is my last straw. I can no longer live like this. I am taking in everyone’s stories, diet suggestions and everything else to try to give myself and my children a better life. I just pray that my son is young enough that he does not remember this day as well as I do. I also pray that I do find an answer to this problem. Thank you for opening your blog so others can share there experiences too. One of my biggest struggles has been feeling so alone. I feel like no one else gets what I am going threw. I feel gross, dirty, and unworthy due to what this disease has done to me and to my life. I pray that all of us find a cure.

submitted by “Ishartmyself”

Medications:      suppositories and colazol


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12 Responses to “The Day That Changed My Life”

  1. histamineApril 15, 2011 at 7:01 am #

    OMG… I so feel for you. I have had accidents, too : at Walmart, at my job… I can understand how horrible you must have felt. Last time it happened to me, I was wearing a diaper, in my car, on my way to work. I just turned around, and drove back home, sitting in my dejections.

    This disease can make one very isolated, as we avoid any situation more than 30 seconds away from a bathroom. And it affects our partners and children. So we feel bad about ourselves, and we also feel terrible because we can’t do things mothers and wives normally do with their loved ones, as simple as going on a walk. It is horrible, but let me tell you, you are not alone. We’re all in this together, and I really hope you can find comfort amongst us – and a way to feel better.

    I will be starting the SCD diet very soon, read a lot about it, and I want to give it a shot.
    Please keep us posted on how you are doing with whatever change you will be making in your life, I really want you to get better.

    Sincerely,
    M.
    Currently on prednisone 35 mg ad Mezavant 4.8g
    Going gluten and lactose-free, soon to try SCD diet

  2. Vicki ThomasApril 15, 2011 at 7:07 am #

    Well, I can totally empathize with you. I have had this happen to me a couple of times. In the grocery store. Walking down the street. At my husband’s office. It is a horrible feeling. It is also a sign that you are sick. I think you really need to talk to your doctor and get a course of treatment that will help put you in remission. I know that a lot of people don’t like to take medication to get themselves into a remission, but sometimes there really is no other choice. Regarding dietary changes – well for me sugar is a terrible trigger and if I eat too much of it (I crave it just like you) it will make me sick. So I try to avoid it – easier said than done.
    Just know that you’re not alone. I’m sure most of us have experienced what you have – it is embarrassing and horrifying – but it is also your body’s way of telling you that you are sick and you need treatment. When I was in a similar flare, I started carrying extra pants with me wherever I went – not a solution but it did give me some peace of mind.
    Please let us know what you end up doing. Hopefully others will chime in with their experiences and suggestions.

    take care,
    vicki

  3. AmyApril 15, 2011 at 10:21 am #

    Your story brought a tear to my eye. This is part of the disease we don’t want to talk about. It’s humiliating. I, too, have two children aged 2 and 4. I’ve been in my current flare since June 2010 and, when it got to the point of not being able to leave my house or go to the grocery without using the toilet two or three times, I had to get some serious help. Not being able to play or care for my children properly is heartbreaking … more so than any disgusting accident. I hope you find some relief soon, honey.

  4. Reid Bryant KimballApril 15, 2011 at 10:38 am #

    I had the same exact thing happen to me. It was summer time in Dallas, TX, I was naturally wearing shorts. I forgot to take my Pentasa, which never really worked but at least gave me a few extra seconds to get to a bathroom. After dinner, which was a date with a really awesome girl, we were walking back to my apartment, no more than 5 minutes away and in mid stride without warning this liquid just pours out.

    I froze like a deer in headlights. I had no clue what to do! I explained to her what happened in the most vague way I could think of, “You know I have Crohn’s, well, ‘it’ happened.” We tried walking back to my apartment which was now 1 minute away, but the community gate was now locked shut.

    I couldn’t believe my luck. We would have to walk 1 mile around to get to the other side of the gate where my apartment unit was. I didn’t want to move, I felt the D crawling like ants down my legs. I was afraid she would see it. I didn’t want to go inside buildings asking to use the bathroom for fear they would see or smell it. I just wanted to be teleported inside my apartment immediately!

    We made it back, I hopped in the shower immediately and after I came out she left. Things were never the same with us after that night.

    Several months later I started on the Specific Carbohydrate Diet and haven’t looked back since. I haven’t taken meds since 2007. I have the occasional accident but they are years apart, not everyday.

  5. jApril 15, 2011 at 3:38 pm #

    Please go and see a gastroenterologist immediately. UC is a serious disease that can lead to all kinds of life shortening complications including colon cancer. Your children need you. Do for yourself what you would do if one of your children had UC. You would make sure that they had good medical care.
    Many people successfully control the inflammation with 5-ASA drugs such as Asacol. There are a host of drugs that work for many people. The easiest and least expensive thing that you can do is try the SCD diet. Believe me you will experience healthy weight loss. You can put your entire family on the diet and make it a lifestyle change. It is nutritious and family friendly if you make the effort. Try the probiotic VSL#3.
    If you have UC, your children may be at an increased risk of developing the disease. It often runs in families. Alert your pediatrician to the fact that you have UC.

  6. MApril 15, 2011 at 4:01 pm #

    Thank you to all you who bravely posted your stories as well. It really does make me feel better to know that I am not alone and makes me feel bad that others have the same issues and in a lot cases worse then mine. I am trying to follow the SCDiet. I have not yet received my book so I am doing the best I can with what I can pull together off of web sights. I have already noticed a difference. I have a lot fewer trips to the restroom and some actual consistency. I still filled drained but know that this is all going to get better with time. I did finally get into my doctor this week. He doubled my Colazol and also put me on some suppositories. He also gave me the okay to try the diet. He said that they do not have enough information yet so they are not sure if it actually is helping people or not. He also told me it does not hurt to try. Thanks again everyone for your support.

  7. tuxedobirdApril 15, 2011 at 4:56 pm #

    You poor thing. I too have been there, diagnosed at 17, now 55. Recently my husband and I went to Washington DC, a great town for walking. Going through the ma on the way to the Lincoln Memorial I prayed for a public toilet. Later that night I banged on the door of a large office building to ask the security guard to let me in.
    Have you considered surgery? DON’T GIVE UP! We are here for you.

  8. Richard (UK)April 15, 2011 at 5:53 pm #

    This is going to sound like odd advice. This is what I found has saved me at least from running down leg part. Im a male so for females not sure what you girls can use that has same effect, I wear dark black briefs I found a make that is tight fitting but not so tight that I notice. They are thick aswell so not much leaks to your shorts or jeans. Unless you have to pass a truck load I have saved myself a few times over 4 years when out and about.
    I filled them up once after a night out at a Chinese restaurant I got drunk and stuffed myself with food that I have no idea what was in most of it. Tiger beer had at least 8 of those, I had planned the night to end short and catch a train home. The time come and passed and my only 2 options was a taxi or take the last train home which did not stop in my village. A friend said np you can stay the night at my house. I was drunk so this sounded like a great plan. The evening was great was alot of friends out, went home around 11:30pm. I even had a good sleep my stomach was ok not many bowel movements until 6am, I made it to the loo at my friends house still feeling a tad drunk. Then i made a horrible decision instead of going back to sleep I had this great idea I would try and walk home it was burning hot outside at 6am. 4 miles was the planned journey from village to village, this walk has been made many times during my younger days at odd hours after night clubbing, well im 29 now I can still make the walk. Then about 15 mins after leaving my friends house at 6am almost no one about apart from early morning motorbikers racing around in this oddly burning hot day in the uk, I had a urge major alarm bells I was to far from the friends house and they were also asleep and very drunk from night before. I scanned madly for a field, a path, a bush, a tree or a back road. Nothing, house on house, street on street and a phone box with clear glass I was well and truely screwed. So standing in the shade near the phone box standing up unable to risk dropping my pants for the fear that people are waking up looking out the windows and the motorbikers I could see passing not once but 2 times in 5 mins. I filled up my trusty briefs well and truly and I knew I had more to come. Then the worst 10 mins walk of my life began, walking aimless in a village that I did not know, only knowing that walking in one direction leads to the back roads towards my village 4 miles away. Walking any distance with full pants and the urge to pass more is something I never wish to experience again. walking up a hill I found a industrial estate, with cctv, it was Sunday morning I had a feeling not many would be working and I was so glad of this. I found a building with grass and brushes making a blind spot off the main road, I dashed up their and got naked I took everything off including my shirt which was clean. Shoes, jeans, socks and then lastly my trusty pants oh boy the feeling of relief was a welcome one. In my Jean pockets I have always took 2 or 3 foldered tissue papers stored in each pocket for times like this and it was all I had. I binned those pants in the bins and I even used some grass to dry up any bits I missed. My jeans had survived no marks inside, my slow movements from the 10min walk and almost holding my breath to make it this far had worked. The phone was out now fully clothed and commando I was feeling uneasy and predicted walking 4miles now would be the end of me, I wanted to sleep on some grass up the road but to many cars, I was closer to a main road now so I walked up the hill. I rang my dad it was the only person who would understand me and it was a 50/50 chance he could pick me up. I was in luck 15 mins then he was coming after a trip to the tip which he already had planned for that morning. I was in a bad spot to wait so I had to keep walking I was burning hot feeling hungover and on edge, massive fear of another urge with no protection under my jeans made me mad. Then another 10mins walking it happened again I was not going to give in this time. This road was leading to a supermarket It was to far I had about 20seconds to find something. To my left was lots of grass leading to a fence. Behind this was a wide ditch but not very deep and behind that trees and fences then back gardens of lots of houses. I had no time I jumped this fence, it hurt my hand some blood nothing to worrie about I ran into this thick over grown ditch with small trees and thorn brushes very little cover but I was low from the road that had passing cars all the time now. Jeans down now and holding on to some small tree, my other hand on the ground I had won. Shaking now from this I took off my right shoe and used my sock to wipe. I was done I still had my left sock and putting my shoe back on I climbed out of this ditch. My dad is always late I prayed not today please don’t be late. 10mins more he found me laying flat out on some grass enjoying the sun I gave up walking any more my energy was spent. I had not been drunk since and this was 2 years ago.

  9. StacyApril 16, 2011 at 5:49 am #

    Oh noooo…I feel your pain; I completely understand. I had an accident like this while with my father out at his storage unit…I felt the urge suddenly, and I knew that I couldn’t make it down the street to the nearest restaurant. I sat in my truck for a few minutes, gritting my teeth and clenching the steering wheel, just praying I could hold it and at least make the insane urge to go stop. After feeling as if I could at least get out of the truck and figure out what to do next, I stood there, in front of my dad, going all over myself. I asked him to please wait outside of the storage unit, and i hurried in and frantically started looking for a box. I had to ‘finish’ the crazy mess in a box, and it was already EVERYWHERE. I had to use dirty old blankets and clothes to try and clean myself as best I could; although it was already a disgusting mess all over my jeans. It was on my feet, my shoes, all over the floor…My dad helped me find a bag big enough for the box, we dumped the soiled blankets and the box itself into it, threw it in the back of the truck, and we drove home. It was so humiliating, driving my dad home with the stench in the car and me apologizing over and over for ‘pooping myself’. Luckily he is very understanding…I’ve had many more accidents after that the past few months but luckily they have always been here at home. My husband is no longer phased by it when I run by him and mention that I need a shower because I had another accident. It sucks. I don’t leave the house. I have a new puppy and a 2 year old daughter that I try my best to take care of. I’ve recently started the VSL#3 probiotics and I THINK I am starting to notice a difference. There’s definitely not as much blood, that’s for sure. Hopefully I am on the path to getting better – I hope that you can get better very soon as well.

  10. SusieApril 18, 2011 at 2:05 pm #

    I understand your pain. I too have had an accident in the car on my way home from work, I will never forget it. But I also know what you mean about not losing weight. Only when I’m in a very bad flare do I lose weight but once they put me on the steroids up the weight goes. I don’t know if they have curves where you are but thats where I go now. It’s only 30 mins and there is a bathroom there, so I feel a bit of safety. As for the sugar cravings one of my docs told me to try liqourice and it’s working. I eat the plain black ones as you don’t eat that many and it cures the sugar craving.
    Hope this might help. and remember you are not alone.
    Susanne

    • MikeApril 19, 2011 at 5:59 am #

      I can totally understand where you are coming from. I had my worst experience a couple of Christmases ago. On the way home from work on the last day before the holidays I hit an ice patch while cycling and fell off my the back of my bicycle landing on my butt and generally winding myself pretty badly. I managed to stagger to my feet but realised I wasn’t going to be cycling/walking home. I called my girlfriend who works nearby and while on the phone proceeded to fill my pants two or three times. I think because of the shock and adrenylin and the fact that i’d compacted my internal organs on impact my bowel just let it all go. As it was so cold I was wearing a couple of layers which really helped.

      We ended up calling an ambulance because I couldn’t walk, was in so much pain and also because I now have weaker bones (gee thanks prednisolone!). I had to sit in the ambulance while they checked me over. I’d have preferred not to sit down! They checked me over and said nothing was broken. They could have taken me in but would have had to sedate me so instead we called my girlfriend’s mum to come and pick me up. We found a plastic bag I could sit on on the way home.

      The whole thing was awkward, embarassing and painful but thankfully i’ve not had too many other accidents.

      Good luck with the diet. For most people its not an easy road to take but it is rewarding.

  11. VApril 22, 2011 at 8:50 pm #

    Thanks again everyone for your stories. I have been on the SCDiet since my post and I am feeling great. My weight is actually melting off. I have lost over 7 lbs in the last week and believe me I am not depriving myself (still 235 though). I do still have blood, and an occasional spout of diarrhea but not nearly as bad as it was. I have been trying a lot of different recipes and realizing that sugar was my drug of choice. I am not craving it anymore. Its a very wonderful thing to be able to buy my children candy and not eat the bag when they are not looking. I am sure I am going to struggle but so far so good. Thanks again!

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