Ulcerative Colitis Tips


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My UC – Surgery or Not

Introduction:

Am 38 year old single woman!! Working as a massage therapist and Bowen Technique therapist too. Been diagnosed with UC for 3.5 years now and looking for advice on surgery.

Ulcerative Colitis Surgery or Not:

I developed UC from being on the lighter life diet in the UK and getting compacted bowels and then deciding to stop the diet before the time the leader wanted me to do it. I chose unhealthy foods after being on shakes and at a time when my father was dying of cancer and I had decided to quit smoking. The combination of all that caused the start of my UC.
Since then I have been hospitalized twice, not really had a time of remission since I was last hospitalized except for a brief period when I decided to start smoking again. Got to love the irony of that! Every time I see my specialist he tells me ulcerative colitis has not been identified with a known cause and there is no medical evidence to support the fact that it is diet related. Very frustrating for a fatty like me who would love to just be told sort your diet out and you will get better! The overwhelming evidence from so many users online is that diet really does improve your condition so I think, New Year, New me! I’ll try again. Last time I tried giving up wheat, dairy and lactose and sucrose and ended up getting terrible migraines and went to hospital! I just didn’t know what to eat to keep my energy levels going. I guess the answer is more protein. I ended up feeling really weak. I have just bought some aloe Vera drink too so am going to try that too see if that can help. But I think I know, my mainly carbohydrate based diet is causing the problems. Too much sugar. And red meat also for me is a no go. And alcohol, well wine and sparkling wine cause the most problems. I have had some terrible occasions with this horrid disease of not making it to the loo in time in public and all in the past year and I am wondering how much longer will I go on still not changing my diet to help myself.

I wish I had more self control!

Colitis Medications:

Am currently on prednisolone 5mg daily, pentasa granules 4 mg daily, methotrexate 25mg weekly, folic acid once a week, adcal (calcium) daily. And was on azathioprine but it was damaging my liver so had to quickly come off it.

I think the only thing that really works for me is the steroids and long term they are not the answer to this problem.

My next stop is surgery.

written by Amanda

submitted in the Colitis Venting Area




7 Responses to My UC – Surgery or Not

  1. Ben G January 4, 2012 at 5:21 pm #

    I feel your pain and know surgery is a very difficult decision. I had my first surgery in June and it’s been a roller coaster since then. Although things did not go exactly as planned, I feel healthy today and am able to live a normal life. I’ve blogged about my experience if you’re interested: http://knowguts.wordpress.com

    Good luck!

  2. Maggie January 4, 2012 at 6:58 pm #

    Some of your story I can relate to. I had mild colitis then when I quit smoking I’d have a bad flare. I’ve quit for 2 1/2 years now for good. I’m experiencing the worst flare I’ve ever had because I drank at Christmas. Also had an eggplant dish the day after Xmas that caused more harm than the alchohol. I discovered I was gluten intolerantafter I quit smoking. I have a sweet tooth so it’s been real hard to give up sweets and I started eating sour dough bread thinking I could tolerate it but I was wrong. This flare has tought me a lot, even though I already knew, I have to give up certain foods. Most of the foods out there are processed or have additives that our bodies eventually can’t handle, for us more sensitive types. We need to eat more foods in their pure forms, which is hard to do–it means more work in the kitchen. I love to eat and have felt that I’ve had a pretty good diet but thanks to the internet I’m learning so much about foods! It’s so true that you are what you eat. By eliminating certain foods, such as grains and dairy from your diet it may eventually help you to feel better without having to have an operation. I’m going to do everything in my power to prevent that myself. I wish you the best of luck!

  3. Kathy Prieto January 4, 2012 at 7:10 pm #

    My husband has 5 cigarettes a day that keeps him in remission. he has only flared badly when he has stopped smoking. VSL #3 DS probiotic is great too. If u try the SCD for a diet- you will feel like u r getting carbs by eating the almond flour baked goods- once u can tolerate it. The scd book is easy to read and recipes pretty simple to make. I use a lot of the recipes for the other family members here just because it is tasty and healthy!
    Kathy

  4. Trish January 5, 2012 at 1:36 am #

    I’m sorry to hear you’re having to contemplate surgery. Lighter Life can’t have caused your UC, as UC is an auto-immune disease, but it certainly sounds like Lighter Life kicked it off bigtime, and the link with stopping smoking has affected many of us. If you try the SCD, you really need to eat every three hours or you will feel rubbish – without carbs, your body has to be refuelled at very regular intervals, so always make sure you have food on you (I carry dates around). The first three weeks are very hard, and the three after that are not easy, but after that your body gets used to it. You could try nicotine patches too – they seem to have worked for some people. Best of luck whatever you decide.

  5. Tony (UK) January 5, 2012 at 5:15 am #

    Strange isn’t it how many people, as in my case, first develop UC after giving up smoking. One really has to question if quitting smoking really does have all the benefits we are led to believe. Obesity is now a major problem in both the UK and USA and diabetes has sharply increased, there are also other health problems that were once held in check but now like Pandora’s box have been released to wreak havoc amongst the general population. The dangers of passive smoking have been proved to be a lie, the findings hidden, ignored and misrepresented. The fact that the children of smokers are less likely to suffer chest related illnesses than those that don’t is not widely known and when revealed is denied by those who have a vested interest in promoting a smoking ban. I have never restarted smoking, I can’t I’ve got crohns as well as UC and smoking and crohns just don’t mix but I wouldn’t anyway as I think its a filthy habit that in excess, like anything you abuse, won’t do you any good but for your average UC sufferer, I don’t think having the odd cigarette can do any harm and in most cases can help relieve some of the symptoms of the disease.

  6. Amanda January 6, 2012 at 6:05 am #

    Thanks for your responses, I definitely will NOT be taking up smoking again, as a therapist it really wouldn’t be nice for my clients, I felt terrible when smoking and massaging cancer patients in the past, really not a nice thing to do! And I don’t believe in doing nicotine patches either, it doesn’t seem a healthy choice. I think the only answer is diet, I just wish my specialist would listen and not look at me like I am totally crazy when I suggest it. I have bought the SCD books, but it’s all american recipies, which sounds a bit odd, but they are massively different choices and I can’t deal with all these cup measurements. I really believe everything in moderation is the real and honest answer, I don’t believe that after 35 years of eating all this food that suddenly I have to take it all away. But that is most likely the sugar addict in me talking! It’s sounds like too much hard work and I hate being different from other people, it means I can’t eat out without such an effort to plan it all, I can’t go to friends houses without being a complete pain, it just does take some of the joy away from my life and I want to stamp my feet like a small child!! But I also want to get better too, so I guess I need to confront it or deal with being ill for the rest of my life.

    I had such a migraine, after just one day of not eating sugar in anything and the following day I ate some mayonaise which had sugar in it (why?).
    Does anyone else get really throbbing type headaches by the way? Or really felt their kidneys? I think there are so many side effects to all these drugs and I really want to come off them. So it’s back to diet again, I just wish all these dieticians weren’t so smug!!! I joke, I am just frustrated though.

  7. Marjory April 3, 2012 at 10:18 am #

    Listen…if you can come off all that medicine. I had I’ve had two blood transufions and been on most medicines, I cannot take the medicine the side effects are dangerous and terrible. Get on a Diet……it will have to be a life style change for sure…. I TAKE NO MEDICINE FOR UC ITS BEEN ONE AND HALF MONTHS NOW …and no bleeding..However….LIKE IS SAID I HAD TO CLEAR MY BODY OF THE MEDICINE THAT WAS IN ME PRESIDNOSE 40MG. AND WEEN OFF OF IT. AND they wanted me on the mp6 which is a chemo pill which kills not only the bad cells but all the good ones too and the side effects are worse then UC condition…No happening here. I started Juicing vegtables cause to digest them is hard on the colon, and eating softer foods, no spicey , no processed foods, but the real change came when I brought ginger at the store.. 59cents / 1.00 piece of ginger drank it daily stop the bleeding. I’m not a doctor just a suffer of uc myself….but i’ve been without bleeding 1/ and a half months now……. email address: renfroepinnacle@comcast.net if you need to contact me. GET OFF THE MEDICINE….ITS HORRIBLE.

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