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Refreshed Hope of a Better Life

Introduction:

I’m in my sixth year as a UC patient, 20 years old. I’ve kind of lost track of when it started. It has become such an integrated part of my life – when I have to use the toilet, it’s more of a reflex than a deliberate action. Today I stumbled upon this website, and it gave me refreshed hope of a better life – Hope of freedom, and of a family life without worries!

My Colitis Story:

This August, I started my first year as a medical student at the University of Oslo. That is surely gonna bring some challenges, and I catch myself thinking about it more often than I want to. One thing I have experienced during my first month in a new city, more than ever before, is the psychological aspect of this disease. I wanna tell you, in short, about my life with the disease.

I was diagnosed back in 2005, after a couple of weeks of bloody diarrhea and phlegm in my stool. My hematocrit level was way below normal – the nurses were shocked I was not lying flat on the floor, passed out. Yet, after four bags of blood, a colonoscopy, a gastroscopy and lots of bloodwork, I was diagnosed with Ulcerative Colitis. Lots of medication was tested (5-ASA stuff, Colazid, Imurel.. I don’t even know if these are the English names for them. I’m Norwegian, you see). Yet two times a year, I got flare-ups. Finally, last Easter I was put on Remicade – It helped! No flare-ups in over a year.

Still, with no flare-ups, I continue to use the toilet, 6-8 times a day, although the stool is hard, with no blood. I have wondered, and wondered some more –

How many daily trips to the toilet is normal when the disease is in remission?

I still think it’s a bit much with 6-8 trips a day.

ulcerative colitis in norway

Now, here’s the weird part. The longer I’ve had the disease, the worse I’ve gotten about living with it! It really should be the other way around. Three years ago, I vacationed in London, and I hardly thought about my disease. Now, I let it control my life more than ever before. I have thought a lot about how this might be – so un-logical.

Anyways, like I said in the beginning, I found this site, and I quickly saw that this SCD diet thingy seems to help many of you guys, and it made me SO happy to read that so many of you live better lives now! Being in the same situation, the one thing we CAN do is relate to the situation – and this is not something I wish upon anyone.

Still, I would be extremely grateful for any tips on Where To Begin? Which books should I order about SCD? Apparently, there are many of them.
Oh, and one last question: Have any of you experienced the combination Remicade + SCD Diet? What should I expect? Improvements? Or will it stay the same because of the drugs?

I hope I get some answers, and I really hope I can post a “Happy Story” in here in some months’ time. Great page!

My Ulcerative Colitis Medications:

Remicade is what I’m on now, which has worked the best of all the meds I’ve tried.

Submitted by “Sir Crapsalot” in the Colitis Venting Area




SCD

8 Responses to Refreshed Hope of a Better Life

  1. Adam
    Adam September 18, 2011 at 9:57 pm #

    Hey There Sir Crapsalot,

    Thanks for writing in your story. I think that in terms of how many poops is normal when you’re in remission?….. I’d say 1-2 per day is a good “normal” number. For me, when I am feeling symptom free for a long time, that is pretty much what I notice.

    Congrats to you for starting medical school. What are you planning on studying? Do you have any particular interests so far? ANy chance of getting involved with gastroenterology????

    I really wish you well with your studies. My wife is just beginning university at a new college this past month, and I know it can be VERY demanding all the studies and projects, and I just hope you don’t get too stressed out with all of it. Make sure to find ways to reduce stress if you can.

    In terms of starting the SCD diet, I would suggest that you check out the diet page if you haven’t already: http://www.ihaveuc.com/the-diet
    I myself use both the options that are listed there, and they are both very good. One is more of a starter guide for starting SCD which I know helps many people who are looking for detailed instructions.

    NO matter what you do, I wish you the best. And, I’m so happy that you found this site. I am not sure for sure, but I think you are the first person from Norway to write a story on ihaveuc.com, and that’s GREAT. I was starting to wonder if this site was blocked up there… Please stay in touch, and keep us all posted on how things unfold for you. And it would be the coolest thing ever to hear you doing well however you decide to treat your UC, and especially that you can move on with life without this disease being so much in your head.
    Take care Sir Crapsalot,
    adam

    • Magnus (aka Sir Crapsalot) September 20, 2011 at 6:14 am #

      Well, regarding gastroenterology, I don’t know if I want to work actively with it. What I DO want, though, is to spend some time researcing different aspects of this disease. This “worms therapy” – Imaginge being part of a research group exploring this! :)

      I must say I’m a bit disappointed with the number of BM I experience.. And I’m definately going to try the SCD. Maybe it works, maybe not. At least it’s worth a shot :)

  2. Hopskotch September 19, 2011 at 3:57 pm #

    Did your doctor mention if you have Irritable Bowel Syndrome in addition to UC? I do, and I guess it’s fairly common. That could be the cause of the additional toilet trips during remission – I sometimes will go as much as 6-8 times, though usually not. If you ask your doc, they might recommend more fiber for bulkier and thus less frequent stools… or some meds to just make your colon a little less active. But definitely check with the doc first since some IBS things could aggravate UC.

  3. Will September 19, 2011 at 4:39 pm #

    I’m currently on Remicade, and while I haven’t gone all out with the SCD diet, I have noticed a vast improvement in my symptoms once I made the eliminations of dairy and sugar (and even better on days when I manage to make it through gluten free, but I can’t keep up with that for too long at a time).
    I’m probably averaging 5-6 times a day now, which might seem like a lot, but I was going more than 10 times a day for about 4 months straight, and now the number keeps getting lower by the week (sometimes the Remicade can take awhile to get to its full powered effect, so that might be working in tandem with the diet changes). I wish you the best of continued luck and more improvement ahead!

    • Magnus (aka Sir Crapsalot) September 20, 2011 at 6:11 am #

      Very enlightning, thank you! :) Now I feel like I have no choice but to try the SCD, so now it’s on to ordering books :)

  4. Julie Helene September 20, 2011 at 4:41 am #

    Hei

    Jeg er også fra Norge :-) Jeg er 25år, bor og jobber i Oslo. Jeg har heldigvis aldri vært så dårlig at 6-8 doturer pr dag har vært lite. Det er antallet jeg hadde på mitt værste.. Jeg har nå vært i remisjon i ca 4 måneder. Det som hjalp meg var Salofalk (Mesalazine – 5 ASA), både enterodepotgranulat og rektalskum. Rektalskummet brukte jeg kun i 6 uker, granulatene er vedlikeholdsmedisinen jeg tar. Ca 1mnd etter jeg fikk diagnosen (samt startet på salofalk) reiste jeg til Vietnam. Der var jeg i 4 uker uten symptomer!! Min konklusjon er da at kostholdet der er bedre for oss med fordøyelsessykdommer enn det vi har her i vesten. IBD er også mer utbredt i vesten enn i østen, så jeg er overbevist om at kosten har mye å si. Selvfølgelig var nok det at jeg hadde ferie og kunne slappe av en viktig faktor. Jeg prøver å spise SCD lovlig mat, men det er vanskelig og dyrt. Jeg har kjøpt både “Breaking the Vicious Cycle
    ” og “Recipes for the Specific Carbohydrate Diet” men kan innrømme at jeg ikke har vært flink til å bruke disse. Jeg kan forøvrig anbefale “Frisk med lavkarbo-100 oppskrifter” Den ene forfatteren av denne boken er blitt “frisk” fra UC etter hun startet på lavkarbokost.
    Se også: http://lillemaane.no/ Lykke til! Jeg håper å høre mer fra deg :-)

    English:
    Hi

    I’m also from Norway :-) I am 25 years, live and work in Oslo. Luckily, I have never been so sick that 6-8 toilet trips each day is considered a small amount of times. It is in fact the number of times I went at my worst .. I’ve now been in remission for about 4 months. What helped me was Salofalk (Mesalazine – 5 ASA), both granules and enemas. I used the enemas for only 6 weeks, the granules are also my maintenance medication. About 1 month after I was diagnosed (and started on salofalk) I went to Vietnam. I was there for 4 weeks without symptoms! My conclusion is that their diet is better for us with IBD (and others), than the usual diet we have here in the West. IBD is more prevalent in the West than the East, so I am convinced that the diet is a crucial thing. Of course, the fact that I had vacation and could totally relax is also an important factor in my recovery. I try to eat SCD legal food, but it is difficult and expensive. I bought both the book “Breaking the Vicious Cycle” and “Recipes for the Specific Carbohydrates Diet” but I admit that I have not been good at using them. I might otherwise recommend “Frisk med lavkarbo-100 oppskrifter” One of the authors of this book has been “cured” from UC after she started on the low-carb diet.
    See also: http://lillemaane.no/ Good luck! I hope to hear more from you :-)

    • Magnus (aka Sir Crapsalot) September 20, 2011 at 6:46 am #

      Hei!

      Kult å se at det er flere nordmenn som bruker denne siden! :) Takk for tipset ang. den lavkarboboka, den skal jeg sjekke ut! Og ja, jeg har vært litt redd for at det er både tungvindt og dyrt å leve på SCD.. Men men, det er verdt å prøve det ut, for helsens skyld! :)

      In (short) english: I’m afraid following the SCD diet will be both expensive and laboring, but it’s worth it for the sake of health :)

      • Julie Helene September 28, 2011 at 1:10 am #

        Hei igjen.

        Ja, helt enig! Jeg synder litt på SCD dietten nå som jeg er i remisjon, men blir jeg verre så er det rett på kun SCD lovlig mat. Det skal i oktober være en matmesse for oss som ikke skal spise gluten, laktose etc. Se link: https://www.allergimat.no/butikk/s/tips/view.html?articleId=5194722
        Er du forresten blitt medlem av LMF? Det er medlemsmøte i morgen med foredrag og kostens betydning for IBD.
        Om du er på facebook så kanskje vi kan snakke videre der? Om du gir meg ditt fulle navn, så skal jeg prøve å finne deg der.

        :-) Julie Helene

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