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My Personal Experience With Ulcerative Colitis

Posted by DeadAnarchistPhil on October 29, 2008

                                             On Set of UC
 
The first symptons of Ulcerative Colitis appeared for me in May 2005, though at the time I had no idea what I had or what was to come! The symptoms I had first were abdominal pain and bloating like I had really bad trapped wind and talking of wind! that was another symptom. It isn’t strictly a diagnostic trait of UC but I think many sufferers of UC will admit it should be! I don’t think many people like to talk about it because they feel it’s embarrasing, but I’m going to say it, when you fart and you are currently in a flare-up of UC… it smells so bad it makes you want to be sick! It isn’t always really bad… but it isn’t nice. It isn’t just the wind itself it’s the amount of it! So I was having this wind and abdominal pain, of course I noticed it and so did the rest of the family, mostly my dad. He kept saying to me “You  better get to the Doctors with that because it’s not normal!”. I didn’t go to the Doctors straight away because the symptoms came and went, and after talking to my mam who occasionally has Irritable Bowel Syndrome, I just thought it was that as I was stressed at the time. I’d started going out again after being a recluse for over three years because of anxiety, so the anxiety was causing me some stress. Anyway, so I carried on regardless but things started to get worse, I couldn’t make it to my college class in the evening because on the day I was meant to go the pain started, I couldn’t get to my speach therapy appointments or group meetings. I also couldn’t exercise either because the abdominal cramps got worse when I started bending, sit ups or anything that involved my abdomin. It was around this time, around late June or early August, that I started to go to the toilet more frequently to empty my bowels, I didn’t have any blood yet just some weird looking, malformed poos and ocassional diarrhea!

                                                     

                                                         September 2005

September 2005 came around, September 13th or 14th to be exact, and I decided to see a doctor and get his opinion. As I thought he would say, he said it was Irritable Bowel Syndrome, but I asked him…

Is there a possiblity it could be something else, because I’ve read books and there’s a lot of stuff it could be? (I’d read about UC but didn’t think it was that, even though I had some of the symptoms)

He said… Well, there’s a possibility it could be Ulcerative Colitis or some other Inflammatory Bowel Disease. But that’s unlikely as you’d have severe abdominal pain, blood and more than 6 stools a day. Do you have any of that?“.

Me: No

Docotor:Well there’s nothing to worry about, we’ll just have to keep an eye on you in case it is anything like that“.

After that he wrote me a prescription for some IBS medication I can’t remember the name of, and with that I was off home. On my way home I started to feel the need to empty my bowels, it came and went, so when I got home I told my mam and dad what the Doctor said and then went to the toilet. And would you believe what happend, after going to the doctor and telling him I had no blood… there was blood literally 15 minutes after I’d seen him! I told my dad, he said “Did you have that before?” Me: “No” Dad: “You better make another appointment and tell him!”. I said I would and still assumed it was Irritable Bowel, because bloody stools aren’t uncommon with IBS.

September 16th rolled around! Between the 13th/14th and the 16th the Colitis was slowly getting worse but I still put it down to Irritable Bowel, but it was manageable. Later in the day on September 16th I found my father dead. As you can imagine the shock of finding my father dead had a singnificant effect on the Colitis. Between the 16th of September when he died and the 23rd of September when he was buried I had started going to the toilet six times a day and having only two bloody diarrhea bowel movments, the other four were painful straining movments cosisting of mucus, clotted and clear blood. After the funeral was all done and over with I felt an obligation to take my fathers place and be the person in the family who deals with all the bills and looks after the family. Bad idea considering I was already stressed up with my own anxiety problems and my fathers sudden death. My youngest sister didn’t take well to me being ‘the man of the house’ and fought against everything I said and did. Taking care of the bills was even harder, I’d never had to deal wit the UK benefits system before and it was so complicated. Maybe if the goverment had left my mother with what she had before it would have been a little easier to understand, but they changed everything! She got an extra five pounds and because of that our rent and council tax went up! Well after a month or so of this it wasn’t helping the Colitis so I let my mother handle everything, except my yougest sister which I still had to look out for whether she liked it or not.

                                                            October 2005

All through October 2005 the UC got worse and I was going to the toilet seven or eight times a day, feeling tired and losing my appetite. I’d seen the doctor again in September and he refered me to a specialist in Inflammatory Bowel Diease, but while I was waiting for the appointment I still didn’t have much idea what it was and I still didn’t have any medication for it. Then in early November 2005 I saw the specialist and he took a biopsy from my colon, and he said it looks like Ulcerative Colitis, but he couldn’t tell till the biopsy results came back. But till then he gave me a perscription for Mesalazine tablets and suppositories. The results came back and it was Ulcerative Colitis, the next step was a colonsocpy to see the extent of the disease. That was to come in 2006.

                                                         November 2005

All through November 2005 I had a bad, painful time, the worse I’ve ever had with the UC! Towards the end of November I was having ten or twelve bowel movments a day on average. Some times it was fourteen or more on the bad days! I was asked by the specialist if any foods I ate made it worse, and I said pretty much anything I ate it didn’t matter, the UC was always there. He told me about some foods that make it worse, one was milk. I had pan of custard one Sunday night, made with whole milk, and that was the worse night I spent with UC ever! I had a fever, I’d been to the toilet sixteen times, couldn’t sleep even though I was tired, vomiting and abdominal cramping like I was being punched or someone was twisting my colon. I used to sit on the toilet for so long my legs would fall to sleep and my back would ache because my bowels were straining so much. After this little episode I decided to drink soya milk instead of our normal for about a three weeks… Didn’t make a bit of difference to me. The UC was still bad, so bad in fact I went to the hospital A&E two times, both times they turned me away and said “The amount of blood you lost is not as worse as it looks.” Funny that, it was running down my legs every day all through October and November, and they never saw it, if they had they would have agreed I needed to be there! I ended up developing anemia. One Friday night I had the blood again and a pain in my chest as well is in my abdomin, I didn’t want to go because I just thought they’d turn me away again like the previous two times. But my mother had other ideas and called an ambulance.

After waiting for over an hour or so in the waiting room I was seen and some X-rays were taken. I then waited another couple of hours for that and some blood tests to come back. The result was that I was anemic, which I already knew,  and had fecal loading (constipation) even though I was still having dirrahea. The constipation was caused by the iron tablets I had to take for my anemia, the pain killers I had to take and the Immodium to stop me having diarrhea. The Immodium was a complete waste of time for me, all it did was make my insides hurt, I told the doctors this when they gave them to me and they wouldn’t listen. Time after time they said “Take an Immodium, it’ll ease the pain and stop diarrhea”. Well, let me tell you… it didn’t! It just bound me up inside and made it hurt even more! Because the Immodium was just combining with the iron tabs and pain killers and causing constipation. It didn’t even stop the Diarrhea or blood. And this was the reason why I ended up in hospital for three and a half days. I hated it, I was so depressed… I was stuck in a side ward on my own (I was actually glad of that because the main ward was full of sick alcoholics). Every time I needed the toilet I had to pull the drip in to a small toilet with me that was part of the room, I was glad for that to because I couldn’t have draged that to the main ward toilets! I was bored, lonely, sick and in pain… even though I had pain killers they wern’t working on me, because they were pain killers for arthritis. I couldn’t have normal pain killers because they contributed to the constipation. After three and half days of small food portions, a drip and a day of laxitives I was on my way home, still sick and with pain.

                                                   December 2005 – 2006

December 2005 and the majority of 2006 were pretty much the same, I was expirencing the severe disease most of the time with a little let up in symptoms now and again. It was also in early 2006 I had the colonsocpy (camera up the back passage) and they found that I had Pan colitis, which means my whole large intestine (colon) was inflamed with Ulcerative Colitis. I also started taking predfoam enemas in mind 2006, but they didn’t work so I gave up on them. Which in retrospect was somewhat of a foolish thing to do. But the doctors gave me a medication to treat left sided colitis when I had pan colitis, it just didn’t work! All through 2006 I started wondering if I’d ever get better, it seemed I’d had the UC for years. Some people never got fully better at all, I started to think that I was one of them.

                                               2006 – 2007 Slow Recovery

In late 2006 early 2007 I decided to give the enemas another chance, because I was sick to death of diarrhea and pain. Nothing happend at first just as I thought, then it started getting better gradually, I’d say it took three or four months in all, it wasn’t perfect, I still got ocassional pain, blood and diarrhea.. but it was better than the alternative. While things were getting better I had to address the problems the medicine was causing, the Mesalazine and Predfoam enemas had caused really bad acne on my face, chest and back. It pretty much had scard my face badly, so I started taking a strong ance treatment that guranteed to get rid of the ance and would mean I would never get them again as bad. I still asked the Dermatologist “What happens when I finish taking the course and I my UC medicine brings them back?” She basicaly said that wouldn’t happen, or at least it wouldn’t happen as bad. Anyway, I took the ance medication in to 2008 with good results!

                             Below is chart of my UC flare ups and mile stones: 

                Photobucket

                                         The Present  And Recent Flare Up

Early 2008 Was a good year so far! My UC had practically gone 100%! I had stopped taking my predfoam because I didn’t need it any more, the Doctor said if I feel fine I could leave it and just use the Mesalazine. But the dermatologist had discovered a new problem, I had a Dermoid Cyst in my mouth, and it was growing down the right side of my neck. So I needed an operation to remove it! As you can guess the op was painful and stressful, they used a lot of antibiotics on me to keep off infection in my mouth and neck. I came out of the hospital feeling like crap and not long after the Colitis flared up! I started taking predfoam straight away and it was no good again, the UC steadily increased, it stopped me from exercise again because all the physical activity made it worse. This time it’s not the same as it used to be though. It’s very intermitant, I can go from stage one of the illness to stage two in half an hour! I only have three or four attacks of diarrhea and blood three times a week now, usualy when I go to the toilet. I only stay in each zone for a couple of hours each time, then after that it’s usualy just some mild abdominal pain. Even though I’m using the enemas the UC just isn’t shifting like it did last time, the UC is going then coming back but not to that level that it was when I first developed it.

                                              The Future And Problems 

But still, it’s painful and very inconvenient! I still dont know how a full time realtionship or job would effect me. I’ve thought about relationships alot and how the UC woud effect it, I always think why would a woman want somone like me, not only with UC but bad anxiety some times. I can’t go out or do much of anything, I can’t even exercise at home. There’s also the flare up of bad acne I get with using the medication (I have some now). The same goes for work, I’m not really obliged to tell a potential employer I suffer with UC unless they ask, but if I can’t even exercise at home how am I going to work a physical job? There are non physical jobs, but I don’t have to be doing anything physical to get stressed out and wind-up with a flare up.

I’m not going to lie and say I’m optimistic about the future, because like everyone with Ulcerative Colitis I face a future of flare ups, pain, possible cancer, realtionship problems, lack of a social life, fewer job prospects and good quality of life. However! I am aware of one thing that triggers my UC… My anxiety, and anxiety means stress and that means a flare up! I think if I can control my anxiety and stress levels I can hault the UC in its tracks. But that’s easier said than done, but I will be trying!

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11 Responses to “My Personal Experience With Ulcerative Colitis”

  1. Natasha said

    Hi
    I was diagnosed with pancolitis 4 months ago now, but much the same I could of prevented it getting so bad if the doctors had told me it could of been Ibd, I had been bleeding for a year with pain weight loss and diarrhea and told its nothing to worry about, but admitted to hospital with severe abdominal pain and than told it was only gas , and the severe bleeding was nothing to worry about apparently, than my husband to me back a few days later as I hadn’t slept in 3 days and at 3 am he found me lying down the end of our street screaming from the pain which felt like some one had grabbed and twisted my colon, the hospital had first given me Panadol. But than changed to codeine. I lost 8 kg that week so I went from 53kg to 45kg, so I was scary skinny. And finally had the colonoscopy which came up pancolitis. And put on prednisone. Side effects are horrible. But it cleared quickly, I’ve currently been off them for a month now and slight pain is coming back and bloating. Does anyone know if this means it could be starting a flare again or just a hiccup type thing?

  2. Iona Gibbons said

    Hello,
    I am so sorry to hear of all the difficulties and troubles you have had in your recent life and the UC not going into a more manageable remission.
    I Was diagnosed with UC a couple of years ago and can see how it grew silently during my life. But it’s not until the bleeding starts do you feel inclined to speak to a doctor.
    I have had bad reactions to medications and have moderate to high inflammation and ulcers.I know I have never been in remission but the medication put my body into a type of shock and I lost my speech and mobility for a number of hours until the medication left my system so since then I
    don’t take any meds, I have quite a restricted diet no gluten or lactose or meat or fish it might be better to not have any cheese but I do have goats and sheep’s. But I have pain most days. However I keep hoping I will find something that works for my body. I drink herbal teas for their anti inflammatory properties but when the damage is so bad it is difficult to know what level of dosage is required from a herbal approach so I am still experimenting. I would like acupuncture but my doctor said no but I will ask again. I am now trying royal jelly in liquid form as it has strong antibacterial properties. For stress I have always talked with God since childhood so it is normal for me to focus on God when I have bad hours and days. Although I know a lot of people don’t feel that they can strike up a conversation with God and feel better for it but for me God helps. I will certainly ask God to listen to your needs too when I think of my own. I hope you make improvement and can get some relief from this constant disease. God’s Blessings to bring hope and wellness for all who suffer like this right now.

  3. Having been diagnosed with Colitis two weeks ago, I googled and found your blog. I’m still trying to work out how to live with this thing, and your experiences sound informative and terrifying at the same time. My twitter name is @chaoskay so i absolutely had to follow your blog considering you said you don’t fear the Chaos, lol! Are you still blogging? This post was from yonks ago. I hope you’re well and happy and still in remission :O)

    • Hello, welcome and happy to meet you, Kay! :O)

      First of all, I’m sorry that you’ve been afflicted by Ulcerative Colitis! On the other hand, there’s not much to fear now you’ve found me! When I was first diagnosed I had no one to turn to and no Internet to help me out untill about twelve months later. Even then what I found on the net wasn’t a lot of help, just a lot of info showing me what I have and what medication I could take. I wanted a personal account though, not a Doctor’s, and not so many were available, which is one of the reasons I decided to write this.

      I’m not going to lie to you, UC can grind you down, make you feel depressed, isolated and also be painful and inconvenient. However, you CAN and WILL recover from it, even though it feels you may be living inside a flare for years. But I can gurantee you, it wont stay that way for long! :O).

      How are you now? How bad is the UC? I used to have bad/moderate/mild ‘pan colitis’ (depending on how good/bad I was) which was the inflamation of the whole large colon. I’m not making this a contest just wanted to know! haha Go here to see which you have if you don’t know.

      Yes, I do still blog, in fact I’ve just recently completed a course of Prednisolone (steroids) that have put my UC to bed for the last month or so, after being active since mid-2008. I wrote everything in my “Ulcerative Colitis Diary”. You can find the page here. And you’re always welcome to comment with any questions you like, nothing is off limits. So If you have any comments then throw them at me, I’ll do my best to answer them!

      I don’t have a Twitter account, I’m only active on WordPress, but I’ve seen you have a account here too! I’ll subscribe to you too. But be warned, I blog on more than just UC, I do Politics, Religion, Economics which can stir a bit of emotion in some people, so stir clear if it isn’t your thing! haha

      I hope you’re well and feeling good today!

      – Phil 🙂

      • Thank you for being friendly! I look forward to reading your blog! I’m sort of on the Mummy blogger circuit so a lot of the blogs are on a similar vein, so it will be nice to have a change. I hope you won’t judge me by the socks review, not one of my best! I do write about other things too, honest – and with a lot more enthusiasm and better use of the english language, honest… ;O)

        Well, in regards to the colitis, I went back to the docs yesterday, and he read from my notes. The hospital said i had moderately bad colitis when I had my sigmoidoscopy, the report the doc read says I have mild proctitis. I think they have changing-their-mind-itis. All I know is that it isn’t pleasant, and I pity the poor people with the more serious versions of this illness. Not happy with the tummy aches, and the accompanying horribleness. Mind you, could have been worse, I was genuinely beginning to worry I had cancer or something.

        Apparently in about 8 weeks I’ll get some feedback from the samples they took from the oscopy thingumy, so they’ll have an idea about why it’s happening then hopefully. So that’s where I’m up to. I’m also on a low -residue diet which is driving me nuts, as I’ve been a bit of a health food fanatic for the last 10 years or so. Mind you, being prescribed sponge cake and ice-cream as a regular part of a diet is maybe no bad thing, lol!

        I wasn’t given a leaflet about colitis, or low -residue diets or any info at all when I left hospital, so I’ve been googling my little heart out trying to find out about the condition, hence me turning up here. It is nice to read a personal account, rather than just info on medicinal side effects. You have a very thorough, entertaining way of writing and I look forward to reading your blog,

        If you get sick of me going on about my kids on my blog, feel free to unsubscribe. It might not be your thing, and I won’t be offended, promise.

        Nice to meet you Phil!

        Cheers, Kay :O)

        • Hey Kay,

          Don’t worry about your blog content, I know it’s not my sort of thing, but I’ll stay subbed and comment if anything you write provokes me to. And no, I wont judge you on the sock review, thoug it was really riviting! haha 😉 It’s all good! 🙂

          They can’t decide which one you have? I can’t see how they could mistake Proctitis for Mod/bad Colitis! I think you’re right though, seems like they don’t know what they’re doing. The Prof told me what I had as soon as I woke from my first Colonoscopy (I had the sedative first time) and gave me a running comentary the second time. I’m glad he did because I saw some pseudo Polyps in there, glad he explain they were nothing to worry about.

          Yeh, the tummy aches are a annoyance, especially when you’re trying to sleep, well they were for me anyway. A good piece of advice for you is to not eat too much food or drink too much fizzy drinks. They will bloat you up and make the stomach aches feel worse. Just eat three medium or small meals a day with no fizzy drinks, and you should find a difference with the stomach aches.

          I thought “Great!” when I could eat a lot of junk food because the good stuff made me feel worse and still can, but I put on more weight. haha Watch what you eat ;). I can’t eat fruit, veg, nuts or alcohol for at least another five months, that’s when my colon will be fully healed and I can try some of my old foods again. I’m hoping things will go back to normal.

          I’m glad my posts have helped you out, it makes it worth writing them! You know, I had to take leaflets from the hospital when I came out from seeing my prof. Oh, and you need to get used to your Doctor, Prof and the people in A&E (if you ever have to go) telling you: “It’s not as a bad as it seems.” followed by a smerk or funny look. Apparently UC isn’t that bad, well… when you first develop it it seems, like you said, there could be something seriously wrong, but you gradually get used to it. But still, if you feel really bad then go to the hopsital, even if you think they wont do anything, I went twice before they admited me the third time!

          Anyway, hope your day has been OK and comfortable, take care and talk soon! :O)

          – Phil

  4. Pete said

    Hey
    Sorry I didn\’t invite you but I didn\’t think it would be your thing!! You are far too sensible……
    To be honest, i had nothing planned until last Tuesday when i was told I will have a few friends round and I will have a few drinks.
    Drunken pictures appearing on my space? I rather doubt it. To be honest although i had quite a lot of drink i was OK – there are pictures but as you know, i like my privacy.
     
    I have read some of your diary but it is a blog that required no interuption and a hot cup of tea to guide me through it – when I am in the position for both, I will definitely give it the attention it warrants.
    Have a good week
    Take care and love to the family
    Pete

  5. ... Angelwitch said

    Heya mate  :)Stress and anxiety, so that\’s the career in politics out the window then lol.well in spite of all the ups and downs and troubles you\’ve had over the last few years at least you\’ve figured out what\’s the main culprit for causing the attacks, that makes a hell of a lot of difference.lol them pics have only been there 4 months or so.mind that said i didn\’t do any more of the garden after that, August i barely spent any time out there for one reason or another and September and October there was bugger all worth pointing a camera at haha.as for the game, it\’s Birth of the Federation, something i\’ve had for several years, and i got involved in a forum of people who still play the game, play multiplayer over the net, doing tournaments and doing mods for the thing. Handy if i need something to take my mind of things for a few hours.haha, i love those lollies, Halloween\’s the only time i have them though, we had loads of kids around as usual, like i said we\’re the only house in the road who makes an effort for Halloween so it\’s usually the same faces each year lol and we had a few sweets left over for ourselves for once.as for the CAB, hope you get some results with them today, but don\’t let them stress you out too much, blasted beaurocrats aren\’t worth it mate.take it easyxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx-C-x

  6. Prenin said

    Hi Phil! :o)
     
    Thanks for visiting!
     
    Yeah: I have no doubt that this wonderful system won\’t work, but why should they care so long as they can get a million plus off the figures!!!
     
    I have a wonderfully talented friend called Jay and even SHE can\’t get another job despite her qualifications and experience!
     
    The T&RA is on final countdown to closure on the 6th of December because there\’s been just four of us running it and nobody wants to join.
     
    Lily and Molly have eight years in the T&RA, Mary was our part-time Treasurer and I was Chair for three years, so we\’ve had enough of promises of help that never materialised and we\’re finally walking away.
     
    The ENTIRE Committee (14 souls including me) voted for closure, so now we\’re in caretaker mode and waiting for the End of Days.
     
    There\’s still the Street Contacts group which I\’ll be communications centre for, so we\’re not dropping everything and I\’m still a volunteer Director for RoFTRA, but I may have to give it up because I\’ve been too damned busy all year to go to the meetings.
     
    Ironic: I had a bloody good attendance record until Darrell had his stroke and wouldn\’t pay for support, preferring to invegle me into becoming his free carer…
     
    After he ended up in his bungalow I had managed to get addicted to my sleeping pills, so I\’ve been recovering from that and not been able to attend.
     
    Fact is that I may just have to resign… :o(
     
    I have a great central heating system, but it costs a fortune to run and is set to run from 10am to 12pm and 3pm to 10pm.
     
     I\’ve been waking at all hours so far, but just lately I\’ve been awake about 8.40am so if it becomes a habit I\’ll reset the timer.
     
    Hope you\’re feeling better my friend!!! :o)
     
    Best Wishes!
     
    Prenin.

  7. Prenin said

    Horribly fascinating!!! :o(
     
    I now know more about UC than I have ever read before and it is shocking how little is mentioned of it!
     
    Get well soon my friend.
     
    Best wishes always.
     
    Prenin.

  8. penny said

    Hiya Phil.  I find your diary of illness strangely compelling.  I have to remind myself that you are not only a cyber friend but a real person, enduring a truely horrific condition.  I agree with you when you say your stress levels probably don\’t help matters.  As for living a full life; give it time.  You are an intelligent, determined person who can only shine through in the end.  Stay well, my friend, Pen.

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