Ulcerative Colitis Tips


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So Long Colon

Jim with his wife and kids

Jim with his wife and kids

Intro:

Hi, I’m Jim from the UK. I live in a small village near London. When I’m not gripping the porcelain throne I try my best to hold down a challenging career in international management consultancy.

I was diagnosed with UC 3 years ago at the age of 33. One day I filled the khazi (sorry – very British word) with a slick of blood and went straight to hospital. A couple of days later a smiling GI announced I had UC, told me to take some drugs and I should be fine. 3 years of chaos later and I’m on the precipice – it looks like its surgery for me.

Some more about me:

I lead a pretty stressful work life (not ideal when you have a stubborn case of UC), which involves a lot of challenging projects, travel, long hours and long meetings with scary CEOs. That said I really enjoy my job and have somehow managed to keep going through some dark days.

What else? Well, I have a great wife and two crazy kids, and much of my spare time revolves around them. I’m a white collar boxer – a great tension release – recommended to all fellow hot heads. I love the countryside and my garden. I keep chickens, grow vegetables, write when I find the muse, and recently set up a small food business on the side – although UC forced me to give it up.

I’m a bit of a stress head, and think too much and talk too much. I love life and for the sake of my family, as well as my sanity, determined to stop letting UC run the show.

Symptoms:

I’m currently suffering urgent bloody movements, about every 3 hours or so. My legs ache. I have a fat face thanks to too much prednisolone. I’m unnaturally tired and grumpy.

So Long Colon Story:

Until recently I thought my UC tale of woe began 3 years ago when a GI told me I had a disease I had never heard of. However I soon realised that it must have begun much earlier. I hadn’t had a formed poo for at least a decade, which I just put down to too much curry and beer. I also remembered that I passed blood twice while a student, both times after drinking a bit too much. At the time a doctor told me to stop worrying and eat some greens.

Years later the blood wouldn’t stop – that’s when I realised something was deeply wrong. I flared 3 years ago and have been battling UC ever since. The only drug that works for me is prednisolone, which I have been taking on and off from the moment the flare went apes*it. No other drugs worked, and I have been denied funding for Infliximab (Remicade) by the good old NHS.

I was hospitalized last summer, and have had 3 serious ‘mega flares’ within my baseline of constant flaring. I have tried the SCD diet. No joy. I paid for costly fecal transplants taken from the bowel of some sort of Greek god of an athlete. No joy there, except my poo smelt expensive. I tried a course of home brewed fecal transplants provided by an amused friend. Again no joy, except the realization as to how surreal life had become spending my time blending turds.

I tried vitamin e enemas, extra virgin olive oil up the bum and down the hatch, lots of VSL#3 and kefir (which do have a slight impact).

Bottom line (excuse the pun), I’ve had enough. This isn’t a hobby I asked for and I do not want to spend decades obsessed with what is coming out of my backside. There are other things to do.

I’m close to going for elective surgery – I’ve done my research and know that it won’t be easy and will change my life for good. But, heh, my life changed for good 3 years ago.

I rationalize my decision like this:

– I don’t want to spend up to 20 times on the toilet a day losing blood, crippled by pain, and driven to tears
– I don’t want to spend my life popping pills, which have a systemic impact, and slowly degrade your health
– I don’t want bowel cancer
– I want to be there for my family
– I want to be able to commit to my future without worrying about being hospitalized
– I want to get on with life even if that means adapting to a new reality
– I’ve tried as many ‘alternatives’ and drugs than I’m prepared to try. Period, as the Americans say.

So there it is. I’m probably heading to the operating theatre in the next few months. This is my way to beat this disease (not for everyone I know) but the right solution for me.

I hate having UC. But it has taught me some things along the way. I eat healthier, which is never a bad thing and I’m more determined than ever to live life. I can thank UC for that.

I also want to thank Adam for this invaluable resource. Everyone’s experience of UC is different and their solutions will be different – this website really underlines this. Well done Adam you’re a UC superstar.

I’d love to hear from anyone out there in a similar position to me, or who has had the surgery (j-pouch) and how they are finding it.

What I’m taking at the moment:
– 20mg prednisolone
– 1600mg mesalazine 3 times daily
– 200mg Azathioprine (Imuran)
– VSL#3
– Lovely home brewed kefir
– Host of vitamins
– Calcium and lots of it

written by Jim

submitted in the colitis venting area




23 Responses to So Long Colon

  1. Adam
    Adam March 1, 2014 at 5:39 pm #

    Jim,

    The best of best of luck and good times to you and your family. Good times too for your chickens (are they meat or laying hens you do out there??) And best of luck to your veggie crops as well.(sounds like you’re still living the dream stinky butt or not senor!:)) so good for you once again.

    But seriously, wishing you the best moving forward, you’ve obviously thought things out and tried all sorts of treatments/therapies and you’re not satisfied with the results. So if you do go down the surgery path, rest assured that you will as well join the group of UC’ers who have done the same and are VERY happy with the move. (And…you can start reading stories from the new section of the site that we started just a few moons ago at… surgery.ihaveuc.com ) best to you Jim,

    -Adam

    • Jim Miller
      Jim March 4, 2014 at 12:27 am #

      Thanks Adam. Still doing my best to live the dream, despite the UC (chickens just for the eggs – it’s the local foxes that try and eat them!) I don’t need to tell anyone with UC how mentally exhausting the whole thought process can be, but I think I have made the right choice for my own situation. Won’t be right for everyone, and I applaud those taking alternative routes. I will keep you updated as things progress. Cheers.

  2. Carl Edwards March 1, 2014 at 6:42 pm #

    Sorry to hear of your experiences and whatever decision you take in the future I hope you find the ‘relief’ you are hoping for on your journey to improved health.
    I was diagnosed in 1987 and over the years have taken huge amounts of prednisolone, Azathiprine and Asacol. I now have osteoporisis as a consequence (51 years old now). I was on the throne up to 17 times day, with all of the symptoms you describe and I have had several stays in hospital. I reached a point of despair whereby I would have jumped at the opportunity to ‘have the op.’ At that time a friend suggested I try Aloe Vera juice. I did and over a period of around 6 months noticed a gradual improvement to the point that I am now on the throne about x4 per day. I feel a lot better although I do still have ‘weary’ days. I still take Asacol.
    I just wondered if Aloe Vera juice was something you had tried…. It helped me.

    • Jim Miller
      Jim March 4, 2014 at 12:35 am #

      Hi Carl

      Thanks for sharing your experience. I too have first signs of bone thinning after just 3 years of steroids, so keen to get off them. Calcium does help as does exercise, but sometimes too much exercise then kicks in a flare for me. Had to stop long distance running as a result. I have tried aloe vera and although seemed to have little impact it appeared to help my very mild case of psoriasis, which was useful! Glad it is helping you. I have some in the fridge so may give it another go. Jim.

  3. Hector March 1, 2014 at 9:34 pm #

    Hey Jim,

    I recently went through the first of (for me) 3 step procedure for the ole j-pouch. Let me put it this way: I feel as If my body was just waiting for the disease to go, to be given another chance, to start living again. Barely a month post-op and I feel almost as strong as I was before getting sick; a few years ago now. Reading your story I realized many of the reasons you state for having surgery are exactly the same as mine, with the exception of spending time with wife and kids. I don’t have that privilege yet, to have my own family, but definitely some day now!

  4. Lucie March 2, 2014 at 2:01 am #

    Hi!
    I live in the Midlands and was diagnosed with UC about 2 yes ago age 30 after trying all the drugs you are currently on & none having any real effect I opted for surgery last April, i cannot tell you how happy i am I had surgery, I have 2 young children who I can now spend quality time with! I currently have a stoma with the option of a jpouch but at the minute I’m happy as I am, I’m back at work after 3 years looking after the children & suffering with UC, I tried aloe vera and reiki to help with my stress as I too think that added to my uc woes but in the end I was just so sick of feeling awful ALL the time I just wanted my life back! And having my stoma surgery has given me that! Best of luck! Lucie :-)

  5. Joanna Kidd March 2, 2014 at 3:16 am #

    This was so me last year, in fact I could have written all of the above!
    I’m now recovering/recovered from my elective ileostomy surgery I had 28/11/2013. I can only say it was the best decision I’ve had to make, I feel absolutely amazing, free of pain, medication free, have my life back….I could go on!
    It went completely to plan with keyhole surgery, recovery was amazing, up and about in less than 24 hrs, getting home after 48 hrs, (I am superwoman) I had an amazing care team coming to visit a few times at home and above all else the ileostomy is really just not that major! I’ve had some minor minor issues but that’s just been personal to me. You just have to keep a positive frame of mind and adapt to pooping a bit different (my 3 kids think it’s amazing, I kept them informed all the way and now think it’s like my party piece ha ha they ask all their friends if they want to look at my bag which is fine because it educates others to our cause too) but it’s all been worth it! Honestly, don’t be scared you’ve got nothing to lose just so much to gain!!
    I’m happy happy happy! X

  6. Jonny March 2, 2014 at 3:47 am #

    Maybe try His Place in Germany before you operate? They’re a christian clinic who have amazing stories of reversing Gastro-problems. Girl from my church was on a liquid diet. Couldn’t eat any solids and her mum had to push her around the supermarket because she was so weak. No she can eat what she wants.

    E-mail Carina for more info, she works there.
    It’s expensive but worth going for a few weeks or emailing them?
    Carinasumma@r-online.de

    Every blessing,

    Jonny

  7. bev March 2, 2014 at 5:03 pm #

    I am just going to chime in here and say that I thoroughly enjoyed redaing your post…and it also made me laugh out loud…how surreal your life is, blending turds….bet you thought you’d never put that into a sentence!

    Only we UCers could ever do that…so priceless…

    Great post, great guy, you will have a great life again!! I promise.

  8. Andy March 2, 2014 at 7:53 pm #

    Had a good laugh at blending turds. How strange life has become!

    I can’t really face surgery. Really hoping to hold out another few years we seem be so close finding some better solutions for UC. I had a mega flare that lasted a year I lost 10kg and i thought it would never end. But it petered eventually, my recovery time send to have gotten longer.

    A few thoughts on reading your post:

    Pentasa Can really have some nasty side effects at higher doses, and doesn’t really help to control flares. It’s hard to think about reducing meds during a flare but i find if I go over 2g per day, I get a fever, nausea and more urgency. Some docs know this.

    I mix my kefir with yogurt I make with mutaflor. I had a mini flare recently and I think this helped.

    Nicotine patches… I was on 40mg per day for a few months. I used to smoke but I haven’t had any problems quitting patches and they do help allot.

  9. Jake S
    Jake S. March 3, 2014 at 12:42 pm #

    Hey Jim,

    Feel free to reach out to me directly via email at secter67@gmail.com

    I am having the surgery on Friday and our stories are extremely similar. I think we can exchange a lot of helpful information and I will be more than happy to tell you about the procedure, recovery, the ostomy bag, everything…take it easy man and reach out any time.

    • Jim Miller
      Jim March 5, 2014 at 11:34 am #

      Hi Jake

      Thanks for the invite – I’ll definitely mail direct. All the best for Friday.
      Jim

  10. Michal March 4, 2014 at 3:53 am #

    Jim, I am sorry to hear about your troubles. We fight with UC of our daughter for 4 years. One of our experience is that combination of drugs or overdosing of drugs can make flare worse or can cause flare.

  11. richard March 4, 2014 at 6:19 am #

    31 yo guy from uk here, just wanted to say I had my colon removed 11 days ago and I am happy I did. It feels great sitting at my PC eating snacks, trying sugars treats and gaining weight. I had KFC last night after leaving the hospital boy did it taste good and best part is not having to think about the loo anymore. I was 9st 6lb pre op, and 8st 11lb a week later. Now I’m back to 9st 6lb’s gained weight so fast! I will be going for the J-Pouch in a year as I’m still single and hope to find a lady friend some day.
    My 8 year struggle with UC is over at last, question I ask myself is should I have had the operation years ago? and looking back at how limited my life has been, unfun, unsocial, unable to work, feeling to unwell to look for a girlfriend, saying no so many times to invitations, struggling with anemia, many steriod courses that have made the bones worse, joint pains ect ect. If I had a bigger pair of balls in my late 20’s the answer would have been yes I should have had my colon removed years ago.

  12. Jim Miller
    Jim March 5, 2014 at 11:33 am #

    Thanks everyone for your comments on my story, and the kind words. It means a lot to know there are people in the same boat as me.

    We’re all different but the refreshing thing we have in common is a willingness to say it how it is. I guess UC does that to you – it has certainly channeled my inner eccentric. Never thought I’d have done half the things I’ve ended up doing trying to beat this disease!

    It is great to feel support and read the success stories (thanks Hector, Joanna, Lucie, Jake and Richard). The Internet is full of surgery scare stories – and while I know I have to be realistic – I don’t really want to dwell on them. That’s why this site is so good.

    Keep fighting!

  13. Rhonda March 5, 2014 at 8:35 pm #

    My 26 year old daughter just had her first surgery yesterday. If you would like to follow her journey I’m blogging each day.

    Momtuch.blogpot.com

    Feel better,
    Rhonda (momtuch)

  14. Caroline March 6, 2014 at 6:25 pm #

    Jim,

    I think it was fate for me to stumble upon your story today. I’ve been in a particularly low mood today and this has perked me up no end.

    My story…..I’m also from the UK although have been living in Australia now for 15 years. I was discharged from hospital yesterday after emergency admission a couple of weeks ago where the doctor told me I was about 48 hours away from losing my colon due to it basically just giving up on me. My dr thought we should give one last drug a try (I’ve been through them all and only IV dose steroids ever worked) which is cyclosporine. So I’ve just been in hospital for a high dose treatment of this drug and more IV steroids. The good news is that it seems to have fixed the colon and I am now home on lower doses of the drugs. 250mg cyclosporine, 50mg Prednislone, 150mg Imuran, 4g Pentasa, Antibiotics up to my eyeballs and sleeping tablets. The idea is that these drugs will keep my colon functioning until the Imuran kicks in as I only starting staking this a month ago.

    The bad news is that on this many immune suppressants and hardcore drugs, my quality of life is exceptionally poor. I am basically only able to lie in bed and perhaps get up for a couple of hours a day. My mind is fuddled, I get breathless, I can’t stay awake and get tremors too. Like you Jim, I work in a high pressure senior level role and I also have two beautiful young children who miss their Mum very much. I am going through the dilemma in my mind as to whether this is worth the fight and whether the surgery might be a better option. Even if the Imuran works there is a possibility of it stopping working and the there’s the colon cancer risk and a whole load of uncertainty around the long term illness. I know the drugs I’m on now have some major risk factors and maybe that’s not even worth while when there is a perfectly good surgery option.

    It was good to read your story and the rationale behind your decision. I have a feeling I could be heading the same way and I have already found a surgeon that I would be happy working with.

    Hope this post wasn’t too garbled due to my fuzzy head. :)

    I’ll be following your story, good luck Jim.

    Caroline

    • Jim Miller
      Jim March 7, 2014 at 6:43 am #

      Hi Caroline,

      No worries, your story is not garbled at all. Thanks for your message, and I’m glad I’ve lifted your spirits. Sorry to hear how unwell you have been, I know how you are feeling. Sometimes the drugs feel worse than the actual disease, and one of my reasons for looking seriously at surgery. Pred is the only thing that has worked for me, although it isn’t as effective as it was, and this gives me all sorts of nasty side-effects. That said it has probably kept me out of hospital and ‘functioning’ for quite some time. I’ve just stopped Imuran as this didn’t help at all over the course of 3 years, hope it kicks in for you. My GI said they don’t want me to try cyclosporine – not sure why.

      Like you I’ve spent a long time thinking about this disease, and surgery is right for my circumstances and impatient nature! I try to keep the rationale top of my mind. For me it is a risk I’m willing to take, but everyone has to reach a decision that is right for them whether it is surgery or something else. I don’t know whether you have looked at diet and other strategies, they didn’t work for me, but alternative options seem to help a lot of people on this site. All the best to you and I’ll post an update as things progress!

  15. Lynette Brown March 6, 2014 at 9:40 pm #

    Best of luck and regards to you, Jim. In February of 2010, my 17 year old healthy, physically fit son began to exhibit the signs of what eventually was diagnosed as UC. It took six months and a trip from our home in Texas to The University of Chicago Hospital to get that diagnosis. By that time he was so sick, had lost 40 lbs and a whole host of medications had failed to heal him. In August 2010, he underwent a total colectomy. Three months after that we took him back to the University of Chicago for the ileostomy take down and the J-Pouch reconstruction. Today, over three years later, he’s back to living a normal, active, busy life. It’s heart wrenching to look back and remember how sick he had gotten and how he suffered and amazing to see him today…a beautiful, healthy, strapping 21 year old man living a normal and healthy life, free of UC. We’re very grateful! Good things are ahead for you and I will pray for you on your journey to restored health. All the best…

    Lynette

    • Jim Miller
      Jim March 7, 2014 at 6:47 am #

      Thanks for your kind words Lynette, and for sharing the experience of your son. These sort of success stories are a real moral boost. This disease seems to impact so many young people in the prime of their lives, and it is great to see there is light at the end of the tunnel.
      Jim

  16. Olivia D
    Olivia March 7, 2014 at 3:01 pm #

    Have you thought about nutrient herbal teas as silly as it may sound just nutrients cured me. I had an allergic reaction to the medication given by my consultant and got pancreatitis. He then only offered me surgery but instead i went down the herbal route of my body fixing itself … I live in Surrey just outside of London, and i go to this lady in Surbiton, you should have a look into it http://contemporarychinesetherapy.com/

    All the best anyway :)

    • Jim Miller
      Jim March 24, 2014 at 6:35 am #

      Hi Olivia

      Thanks for the message. Strangely enough I have just looked in to Chinese Medicine, as it is about the only thing I haven’t had a go at. I spoke with someone last week and expect a herbal prescription soon. This may be a last ditch attempt before surgery (the decision may be taken out of my hands soon) but I’m very willing to try it. After doing some research it seems in China they treat UC with both western drugs and traditional medicine. Good to see you have helped yourself via this route – I’ll see what happens!
      Jim

  17. Lynn March 22, 2014 at 4:05 pm #

    Hi, my son Josh had surgery 5 days ago to remove his colon, rectum and j-pouch. He has been in quiet a bit of pain and still only walking a little around the ward twice a day, but got up this morning and showered on his own so things are looking up. He will go back in for the second surgery in around 3 months when all the inflammation dies down to have the illiostomy reversed so hoping that surgery will be a lot easier and less painful.
    He has had UC for quiet a few years but was only diagnosed 11 months ago and unfortunately it had affected the whole colon, then 6 months ago after having a colonoscopy they found that he had pre cancerous cells thought the colon so he really didn’t have much choice other than to have the surgery. Here’s hoping for a speedy recovery. Has anyone else on this site been through the two stage surgery???

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