I Have Ulcerative Colitis Since 2009 and This Is My Story

Introduction:

I’m Marko, 22 year old male from Romania (Eastern Europe, hihi). Have colitis since October 2009 and am currently on the SCD and feel great, almost symptom free.

Symptoms:

Gas, a bit of blood. Nevertheless, I poop once a day, which I find great.

Marko’s Awesome Colitis Story from Romania:

Hi guys.

I’m Marko and I’m 22. Been having UC since 2009 and took the following medication:

Asacol, Salofalk, Prednisone and 6 Remicade infusions. My doctor insists that I should keep doing Remi on a constant basis, every other three months, but I don’t want to, I’m too afraid of that possible cancer side effect. And frankly, I’m tired of meds.

Here it goes:

It was 2009, and I stared noticing blood on the TP. Didn’t give it importance at first, but after a while I started worrying because the quantity kept increasing. Went to the doctor, had a colonoscopy, and BAM! ulcerative colitis. I had no idea what that was, I was just happy it wasn’t cancer (internet cand do more harm sometimes). About 7 cm of the colon was damaged by UC. The doctor didn’t take it seriously and gave me some mesalazine pills, 3×500 mg/day, which I later learned were almost irrelevant. Symptoms didn’t go away, so I went to my family doctor, and he gave me 7 Salofalk enemas, to insert in the rectum every night before sleep. I did that and everything was good for about a month. Then, it came back. Went to the original doctor who diagnosed me and he told me to keep taking them pills he gave me and eventually everything will be alright, because “7 cm are nothing, you are almost healthy”.

A weird thing with my colitis is that I almost never have diarrhea. It’s just blood and a hard stool. Now where was I? My symptoms came back, and for about 7-8 months I kept having 3-4 solid stools/day with industrial quantities of blood. Went to another doctor, had another colonoscopy, he prescribed Salofalk enemas again, this time 4×7, a whole month of treatment. They didn’t work, so I kinda panicked. That doctor is quite popular around here, thus he is very busy and doesn’t have time to treat his patients properly. So I went to another one, had ANOTHER colonoscpy (after about 1 month) and what do you know, my colon was now 70 cm inflamed. It was the end of the world for me. He prescribed Prednisone and a lot more mesalazine. That sort of worked, but the bleeding stopped randomly for a week, and then it came back. He looked at me and said: ok man, we have to go with Remicade, because we can’t stop the bleeding. I accepted, and after the first 3 infusions I got my life back again. The summer of 2011 was awesome, I actually thought I was completely cured (what a fool I was). Had some booze every now and then, ate what I wanted, started going to the gym, gained some wight – my life was great. Had another 3 infusions for maintenance, but in September, it came back once more, uglier than ever. The first morning stool was just water+blood, the second was solid+blood, and the other 7-8 were just blood and gas.

It was the point when I started considering SCD. So I started three things:

1. Acupuncture for stress management
2. Salofalk enemas – because they worked the first time
3. SCD

And it stopped. My symptoms actually stopped until January, when they returned (I was cheating with potato chips, 1 beer/weekend and a burger every now and then) So I did another set of 9 enemas + SCD from the scratch, with the intro diet and all that, and now here I am, having one hard stool/day, a little bit of blood but quite a lot of gas. I also take Omega 3 fish oil and probiotics, which seem to help, even though I started about 2 weeks ago.

specific carbohydrate diet europe

Marko with Friends on and doing the SCD Romanian Style!

And now my question. I LOVE bananas. I used to eat ~5/day. But since SCD and since I actually stopped cheating (January), I believe they do me harm. I tend to notice more blood and have more gas if I eat more than one/day. And yes, they are always ripe. Do any of you guys have trouble with bananas/fruit in general?

Also, how do you feel about pomelo? I love it, but I’m not sure if I’m supposed to eat it.

Thank you for reading my story and I hope that my English was understandable.

P.S.

In December I was diagnosed with mild scalp Psoriasis, which literally ended my world once again (I am already sick on the inside, and now outside too? What the hell do I have left? – these were my thoughts at night). But since SCD, I haven’t had a single Psoriasis flare up, my scalp is clean, I have great skin, feel awesome and am stress-free.

I believe that SCD done RIGHT is the answer, and not only for UC.

 written by Marko

for more information on SCD and the Specific Carbohydrate Diet – click here




13 Responses to I Have Ulcerative Colitis Since 2009 and This Is My Story

  1. Adam
    Adam February 24, 2012 at 8:37 am #

    What up Marko!

    Awesome picture buddy.

    That’s interesing about the bananas. I think I’m like you, I absolutely love the nanas. I eat at least two a day, and sometimes more, and it seems to be fine with me. However, if I was in a flare or dealing with symptoms, I’d cut back on the banana intake quite a bit.

    Maybe over time, you’ll be able to up your banana intake, but if you are seeing positive results with reduced banana…well good results are just that: good results. hard to beat that eh!

    Pomello, I don’t eat that myself very often at all, have had it a few times but its quite expensive out my way so I steer clear. I don’t think it is a common item that gives people problems who follow SCD diet rules.

    Good luck with contineud success, and why not a video of living in Romania and giving UC the beatdown out there!! thanks for your update, Adam

  2. Maggie February 24, 2012 at 4:19 pm #

    Your English is great! Living with UC is the shits, literally. Besides UC, I also have psoriasis and it started in my scalp. I’ve had 2 flares of that on my body in the last 6 years. I also have psoriatic arthritis. They all seem to go together, the UC, etc., being autoimmune diseases. I eat 1 to 2 bananas a day with no problem. My mom says if she eats 3 a day, she gets gas. Good luck with pomelos and your diet.

  3. garry February 24, 2012 at 4:24 pm #

    marko
    great post. i think you are onto something: controlling diet is the best way to take control of UC. the meds provide unsatisfactory results and who know what the long term impact will be from a designer drug like remicade. (i was on it a year, unhappy with the results and worried about the side effects from long term use.)
    in terms of suitable foods to eat, my experience is that everyone’s body chemistry is slightly different, so foods that some with UC can tolerate don’t work so well for others.
    best of luck to you and, btw, your English usage is quite good.
    garry

  4. Bev February 24, 2012 at 5:38 pm #

    Hi Marco!

    Great writing! That’s so true what you said…sick on the inside, and now sick on the outside too…about the psoriasis. And also what you said about thinking that at night. I think when we UCers lie down at night, or during any other quiet time in our lives, we do alot of thinking. That’s when we can silently feel sorry for ourselves, feel angry, feel frustrated, etc. When we are around other ‘normal’ people, we put on a brave face lots of times. We want people to think that we are living, and that we are laughing, and that we are having fun.

    I too am SICK of meds. They are dangerous, make you feel crappy, and are not a cure. Every time they put us into remission, they never work again. Then, it’s on to another drug. The drug merry-go-round. I believe in the SCD, even tho I don’t follow it, lots of probiotics, and whatever other natural stuff atht actually helps. At least natural won’t destroy our health even further, right? My doctor has tried and tried to get me to take remicade, steroids, and immune syuppressors, and I won’t do it. I have been taking major probiotics along with the 12 asacol pills per day that I’ve been on forever (which I’m not sure are doing anything, but I’m afraid to stop them just in case things get really ugly), and that’s all I’m taking, and will take.

    Try whatever natural thing you can, and which ever of them works, stick with that. I have been where you are…I was diagnosed with 7cm colon involvement at first, and told not to worry, it probably wouldn’t spread, then it was 75cm…now it’s pancolitis, which means total colon involvement. I’m sick of the promises, and the prodding to try this drug and taht drug. I always end up worse off. What do doctors expect? We get a mind of our own, and start to think for ourselves, and then we are a ‘problem patient’.

    Hang in there, and do what YOU feel is right for you. Think for YOU, and ask lots of questions. Question everything! Nobody really cares about us, except for our loved ones, and ourselves. We are just another patient, to the doctors.

    Cheers,
    Bev:)

  5. uma February 24, 2012 at 6:59 pm #

    I think you are doing everything right except for that occasional beer or any alcohol for that matter.Stay clear of that, take probiotics regularly and you will be fine,

  6. Marko February 25, 2012 at 4:53 pm #

    Hi guys,

    Thanks for all the nice comments :) About an hour ago I had my last banana for at least a month – I want to see how this will turn out.

    Another thing I’ve noticed is that when a flare-up is on it’s way, but I’m still symptom free, I tend to have horrible nightmares for a few nights, sleep less that 7 hrs and then my health constantly decays until the point of 8-9 toilet trips/day.

    And regarding the doctors, it’s so easy for them to suppress our immune systems with pills, but it’s so obvious that this isn’t a long term solution…

    Heh, things could always be worse. Nevertheless, one thing I know for sure: surgery is a no-no for me, because a cure is out there. We must be doing something wrong if our own organism attacks itself, just need to figure out what. For a while I quit reading about UC because I thought it will only worry me and make me feel bad, but it was a bad idea. Reading, experimenting with food and alternative meds is way better than staying in the dark and pretending you have it under control.

    Cheers!

    P.S.

    Adam, that almond pizza crust is DA BOMB!

  7. Bev February 25, 2012 at 5:07 pm #

    Right on Marko!! First, I’m so sorry that I misspelled your name in my last post. What was I thinking!

    So true that we tend to be in denial, and hope our flare will just go away. The natural way HAS to be the way to help ourselves. Our doctors are not trained to offer us alternatives to medical drugs…but we are free, and we can do it ourselves!

    I have never really thought about things like nightmares, or bad sleep, right before a flare, but that is very perceptive of you, I think. I can feel when things start going from good, to bad, to worse, and I bet if I really kept track, I probably experienced these odd sleep disturbances as well.

    Please let us know about the whole banana saga…this interests me ver much, as I try to eat one per day, and it seems to actually help me!

    Cheers my Romanian friend,
    Bev:)

  8. Aimee February 27, 2012 at 8:31 pm #

    I’m on here because I have a brother with UC and IBS. He also has big issues with fruit, it gives him bloated painful gas and also can’t eat gluten, nuts or corn. I would definitely cut back on the bananas you’ll probably see an improvement with the gas.

  9. Gabriela March 10, 2012 at 3:05 am #

    Hello Marko! I am also from Romania, Bucharest (Tu in ce oras locuiesti? – What city do you live in?). I’ve been reading this site for a while and I am very glad that I finally found somebody from Romania that has UC as I have. I was diagnosed 2 years ago, but I have’t met anybody in Romania with UC with whom I can talk to about this disorder. For me it hasn’t been that bad, until now. Flares are worse now, but it seems I can keep them under control with Salofalk. I’m going through a flare right now and I try to be patient, eat the right things, try to relax and forget about stress at work. Next week I have an appointment with a doctor specialized in acupuncture, hope this will help me (Pe tine cum te-a ajutat? – How did acupuncture help you?). I tried to get in contact with Asociatia persoanelor cu boli inflamatorii intestinale din Romania (The Association for persons with IBD in Romania), but they didn’t answer my e-mail, I suppose they are still at the begining and don’t have time to answer all the e-mails. I wanted to know if they have regular meetings, like a group support, if they discuss about drugs, doctors, what helps them, how they manage at work, how are their families and friends copping with this. I feel the need of talking about this.
    I would like very much for us to keep in touch on this subject and find other young Romanians that are going through the same thing and talk about our problems. Astept vesti de la tine! (Hope to hear from you soon!)

    • Cristiana August 1, 2012 at 3:34 pm #

      Hi Gabriela! I’m from Romania too.I would like very much to talck to you. If you see my post please write me . : leila.3000@yahoo.com

  10. Marko March 18, 2012 at 2:42 pm #

    Hey! sorry I didn’t see this one sooner. I’m from Timisoara.
    Regarding the acupuncture, I don’t think it actually helps vrey much with the disease itself (at least in my case. The person who recommended me this actually beat the relapse in a few sessions, and the guy was around 40 yo and had colitis for 15 years if I recall), it’s more for the mind, the “keep calm and carry on” type of activity. I stopped recently, with no special reason – but I plan to do some sessions in the summer or whenever I’ll feel stressed out again. Also, it’s a different branch of acupuncture, named su-jok (google it for more info, they have a website in Romanian), and with this one the needles are inserted into the hands alone, not the whole body. Each point in the hand has corresponding organ, but you’ll find out more from google than from me.

    About that association, I had no idea we had such a thing here, so I guess they must be somewhat new. Would love to be part of a national meeting of *unfortunate* people like us, so if you find out or eventually do get a reply to your emails, please let me know.

    Those Salofalk enemas do wonders, I still use one every once in a while (1 or 2/week), just to make sure I’m avoiding a relapse until my gut starts healing. Next to those, I currently take 2 Salofalk 500mg pills/day, Omega 3 fish oild and probiotics, as I’m not sure if I can tolerate yogurt for the time being.

    I wanted to say something about the bananas. Well, I haven’t had a single one since my story was published here, and hell, the gas is almost gone! The fruits that work for me now are: kiwi (2/day) and cantaloup (2 or 3 slices/day). Oh, and cranberries. So, overall I’m alright – no blood, significant less gas and the almighty one poop/day. My only problem? I tend to eat too many walnuts as a snack, especially at night, because I work at home until 3 AM daily. I don’t know if it’s just me, but it’s quite hard to constrain myself from eating another handful after the first one, and I believe they aren’t the easiest thing to digest at 2 AM. I’ll probably have to fight my cravings more I suppose.

    That’s all for now,

    And as we say in Romanian, SANATATE! (~have a good health!)

  11. Donat June 8, 2012 at 11:06 am #

    Hey Marko! I am Hungarian and have pancolitis. I am currently having a mild flare on, and I started SCD 2 months ago. The “banana mystery” is interesting, I’ll do a similar experiment like you and report the results here, I might do the same with the SCD yoghurt as my bleeding seems to be quite stubborn this time. What I wanted to say is that I have similarly very good experiences with Salofalk enema. Just skipped one this morning and there was some blood in the afternoon. I am doing acupuncture for myself (electro + needles), I think there is more behind of it than stress relieve only…but who knows…I believe in it, that might help too. I read some articles about clinical trials(following proper methodology) of acupuncture treatment of UC. It was kind of convincing.

    Anyway…SANATATE!

  12. Dragana April 9, 2013 at 8:50 am #

    Hi all. Thank you Marko for your story. I was born in Timisoara but lived in Canada for about 17 years and now in the UK for 6 years. I have been wondering if different countries’ doctors give patients different drugs but all in all, it seems very much the same, we are just laboratory rats and they try to make us keep away from the hospital at any cost.

    I have had UC for about 8 years now. I was lucky, in a way. For about 6 years, my symptoms were somewhat handled by mesalazine, only had some urgencies ones in a while. I had a flare up once a year and it was managed by Prenisolone enemas within 2 weeks. But for 1.5 years now, it has been a rollercoaster for random visits to doctors who made me try for the first time last year prednisolone pills which my body did not like even though they worked fine to relieve my pain/symptoms. They made me feel dizzy. I was a bit better afterwards, the gases were gone but i knew I was not in remission yet when I was done with them. Months later, something interesting happened. I had an acne flare up and I was given anti-biotics! And guess what…all my symptoms were gone, no gas, no nothing, I was myself again. But when I finished the course, the doctor said I should not be on them too long that I would become resistent, and now wants me to take prenisolone again. I refuse to take them, surely they are worst then the anti-biotics? Did anybody ever take anti-biotics for UC?

    Now only on mesalazine, I have bad diarrhea and cramps for about a month and lost my appetite. This is why I am trying the SCD diet now only found out about it 2 months ago, it has only been a few days, and no changes so far, I am making yogurt but not sure if it is helping yet or making it worse.If it works it works if not, I can say that I tried…before taking Prednisolone.
    This is the worst I have been since I was diagnosed, I did not think it could happen to me, I am torturing myself trying to find out what triggered everything and put a stop to a good run for 6 years, but I can’t pin point it of course. I ate everything I wanted (no reason not too, I was fine for 6 years) but now realise I should be more careful. I started a diary a month ago. Perhaps I would have a better perspective of it all. I am doing the intro diet and trying to be patient, but I am dying for a banana or a fruit. I think the worst is mentally, I am very creative and am part of different projects but with these past few months, I sort of lost myself, and it is the worst, worst than all the physical pain thinking about the disease, trying to quiet a monster that has a mind of its own.

    BTW:
    The Salofalk enemas never worked for me, it had to be prednisolone enemas. Perhaps those who use Salofalk and have a flare up and Salofalk does not work should try to the prednisolone one, instead of tablets. I wish they would still be working in my case.

    Regarding acupuncture, I also tried that but it gets expensive to do it with no idea if it works or not after a while, I have stopped for now.

    Thanks to Marko for starting this tread and for Adam for initiating this great forum. I only have one friend with this disease and did not think more people could be in such a state, from people in my birthplace to people on the other side of the world.
    I am crossing my fingers and toes that SCD can work for me.
    All the best of health to you all.

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