Ulcerative Colitis Tips


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Light at the End of the Tunnel

Introduction:

I am a 35 year old male. I live in the UK. I was diagnosed with UC 12 years ago, at the age of 23. I always had minor problems with mz health since mz childhood. Asthma until the age of 12, knee problems until age of 20, then UC at 23.

Symptoms:

I am trying to put myself into a full remission after a severe flare in August of 2011.  At the moment I have blood and mucus occasionally. Bowel movements 1-2 times a day.

My Story:

Diagnosed with UC 12 years ago in 2000.
Contributing factors: There is probably a genetic background (my cousin also has UC), I had a bad year in 2000 – my mother was diagnosed with cancer(later died), feeling lonely(no girlfriend, no friends, family away), eating junk food a lot, I had problems at my very first work place, occasionally drinking, I was a regular smoker.

I had 4 mild-severe flares – hospitalized, the maximum weight I lost was 20% of my weight in a couple of weeks. Apart from those 4, I had number of mild, manageable flares and uncountable number of minor problems. My longest remission was about 3 years.
Last flare (2011 Aug) came after 1 year of moving to UK and quit smoking.

My family is very supportive, although they are trying, they cannot really help too much – at the end of the day you, yourself have to manage it mentally.

My life had not change dramatically, fortunately i wasn’t really bound to toilette as others – as I read here and on other forums, I always did not some sport. My favorite is kayaking, climbing, cycling.

The biggest concern is about removing my colon and about having colon cancer.

Currently, I am on SCD diet, started 36 days ago. I am recording my experiences and observations about my physiology in a XLS. (I suggest you to do that and record anything you feel, do, eat, pass..etc)

The last 36 days on SCD overall is positive, having more energy, the number bowel movements a day is stable (1-2), I have still ocassional bleeding (one started after 10 mile walking, the other after 10 mile cycling. – sport is Great! – but I was impatient and did too much too early)

Started vitamin – E enemas 6 days ago – so far so good. Bleeding started to vanish at the 4th day.

I am also doing accupuncture(electro and needles) for myself regularly. (started 3 months ago) – very good experiences.

Where I’d Like to be in 1 Year:

In full remission.

Colitis Medications:

Tried so far:
Salofalk tablets (2g a day 4x500mg)
Salofalk enema (4g in 60ml suspension)
Budenofalk (budenozine)
Prednisone (mild flares – starting from 16mg, more severe 40mg, the maximum I got 100mg IV)
Cyclosporin – did not work, CRP remain too high
Immuran – severe side effects(vomiting and diarriah) on the 1st night – couldn’t use itThe most efficient acute help at home while you get a doctor or keep it manageable if you start it in time:Predinose(depends on the severity) injected into Salofalk enema(4g/60ml) Currently:
SCD diet
Pentasa granulates (4g – 2x2g)
Sylimarin seed oil
Fish oil
Accupuncture 2-3 times a week
Vitamin e enemas (2 times a day)

 

written by Donald

submitted in the Colitis venting area




genetic, UK

2 Responses to Light at the End of the Tunnel

  1. Donald June 22, 2012 at 4:39 am #

    Hi UC fellows,

    This is just an update…
    So, after being on SCD for two month, doing some traveling and occasional but moderate wine drinking I ended up in a flare. I know that Elanie in her book predicts that 2 month flare, but i think it was rather the wine. Shame on me.

    It developed gradually, and i can say the whole dynamics of the flares was quite different(milder)from the ones before SCD. Until the last week, no pains, no urgency, no too much blood, not too many BMs.

    I tried couple of things this time, Moro’s carrot soup, Vitamin-E enemas, SCD yoghurt enemas. I tried each of those for 5-7 days, but none of them did the magic. I was desperate to avoid prednisone.

    Last week, the flare turned a bit more serious, the amount of blood and the number of BMs started (went up from 3 to 7) to increase.

    Ok, let’s see what the Chinese herbs can do for me (yunnan baiyao and two more prescribed by Herbalist)
    Started it in the morning , but at the same night after having several BMs full of blood my mental and psychological resilience reached its turning point and decided to take 25mg Prednisone. I know, that these herbs needs a couple of days,but mentally i was unable to convince myself to give them a bit more chance. I worried to much, lost too many blood, lost 5 kg (from 75)…etc.

    I am proud of myself because i kept myself SCD very strictly and i still believe(it rather make sense to me, it is not a belief) it works.

    I read Adam’s article about SCD + prednisone, and i also found a material on the internet about success rates of elemental diet(similar principles to SCD) combined with prednisone, which shows it is far more efficient than prednisone alone.

    Regards, I wish you health, good mood, power, whatever condition you are in.

    • Donald August 12, 2013 at 9:22 pm #

      Hi UC fellows! This is about FMT with capsules!

      This is just a follow up, although i never got a reply to my post, i am not sure if anyone ever read it, but anyway the goal here is the sharing…just in case.
      So, in the last year I used FMT two times, the enama way ( usually 60ml) for 5-7 days retained to 6-8 hours. They helped a lot and speeded up the recovery and tapering off relatively high prednisolone(40-60mg).

      Due to stressful environment in the last year at my work I couldn’t really maintain a stable condition, but got over without any serious flare.

      i was even able to make a business trip to India and got back in a better condition(i am still wondering if it was the food, the weather or the lots of warmth i got from the people i met with).

      Anyway, again because of some serious stress i am in a middle of a mild flare.Started 8 weeks ago, started with diarroeah without blood for 3 weeks, then i started prednisolone low dosage 15mg, seemed to be working, an incident with the neightbour blew up everrything, it started to being unctrollable. prednisolone increased to 30-40-45. Started Fmt, but the 8 week course of intense use of my bowels made it impossible to adminster and retain FMT in enema. I couldn’t retain it more then 15 mins anymore,which obviously is just wasting.

      At this point i decided to try the other way – from the top. Two option, NG tubes(risky at home) or capsules. I decided the capsules.
      Ordered enteric coated capsules, and filling them with the “stuff” by a 5ml syrengy. I prepare 5x 5ml into capsules, (1 capsule is 500mg), so at the end it is a kind of significant number of capsules to swallow, but i am doing it by 5 pieces. Once i prepare 5 , i just take it with water. ( if you wait to much the capsules starts to dissolve). I am doing it at empty stomach at 4 am. This is my 4th day. I am also continiouing with my medication(50mg pred , 2x2g pentasa, 3×1 cocodamol), which i am sure doing the most of the job. In the last 4 days my conditition improved, put some weitght on, 1.5 kg(probably water), bleeding is almost stopped, only at the end of the stools, great appetiate.

      i am planning to doing this for couple of more weeks, later on i will restart the enemas too(double action:) ).
      we’ll see…
      never give up!

      all the best
      Donald

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