Ulcerative Colitis Tips


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34 Year Old Swede Struggling

Ingrid Sweden Colitis WriterIntro:

I am a 34-year old woman from Sweden. I work as an architect, and I have a 1,5 year old daughter. I have UC probably since I was a teenager, but I wasn’t diagnosed until it got really bad back in 2008. I still have my colon, but perhaps not for much longer. I’ve just started the SCD diet, hoping it will help me. My primary goal is not to keep my colon, but to be able to have another child or two before I’m too old.

Some more background:

I enjoy cooking and growing vegetables. I’m a nerd when it comes to different materials, like wool for example. My dream is to buy a farm in the country side and be semi self-sufficient.

Symptoms:

Diarrhea, water thin about 2-4 times a day, a little blood. No fever yet. No apetite. I am on day 2 of the intro diet of SCDSCD details

34 Year Old Swede:

When I flare, I get thin diarrhea with blood in it, and after a while also fever. I always loose weight and feel fatigue, but I have very little pain and no cramps like other with UC experience. When I flare, my lab results are always very high on everything they measure, so I usually end up being admitted to hospital for at least a few days.

I have tried almost all of the medications there are:

Lots of Prednisolon back in 2008-2009, which used to work really well when I was on a high dose but the flare would come back straight away when tapering down. Prednisolon makes me a horrible and miserable person.

I tried Imurel (Azatioprin) in 2009 which quickly gave me some very serious side effects and I ended up in hospital twice with a very high fever and difficulties breathing.

I took Asacol (Mesalazin) from 2008-2009 but I eventually got renal failure from it, and I don’t think it ever had any effect on the flare.

In June 2009 I tried Remicade and that made the Ulcerative Colitis go into remission and I felt great. But two months later I suddenly got a really high fever again and was rushed to hospital where I spend the whole of two months being really ill and the doctors could not figure out what it was. My blood tests showed some sort of serious infection/inflammation, as bad as someone with a double sided pneumonia, but I had no other symptoms apart from the high fever, even my tummy was doing really well. The doctors looked for everything on heaven and earth, like HIV, rheumatic disorders, tuberculosis, tropical illnesses, you name it, they tested everything, but found nothing. The only medication I was still on was Asacol, and when the renal failure was discovered they took away the Asacol, and within a few days I was all fine again. To me, it was obvious that it was all because of the Asacol, but my doctors say they have never seen anything like it and won’t blame Asacol for anything else b ut the renal failure. It was one of the strangest experiences ever and to this day I have no idea what was going on during those two months.

After this horrible episode, I was completely medication free and symptom free for almost two years, and my UC was mysteriously completely in remission. I was not on any diet or anything. During this time, 2010-2011, my stomach had never felt so good in my entire adult life. The doctors did not seem to think that this was strange, as UC can be like that, just suddenly go away and stay away for a long time for no obvious reason.

Unfortunaly this did not last, and I started flaring again in the end of 2011. I was put on Humira, which worked really well and has done for many years. In 2013 I was pregnant and gave birth to a healthy baby girl. Only in the third trimester did I have to stop with Humira. When my baby was three months old I had another flare and was put back on Humira. Humira is the only medication I have tolerated ok, but it gives me a high blood pressure, and this last winter it got a lot worse and my blood pressure got dangerously high. The doctors don’t know if it’s because of Humira or because of something else (I am certain it’s because of Humira).

I have been standing in the queue for surgery to remove my colon for a years time, and I was scheduled for surgery on May 27th, but the surgeon cancelled it because of the high blood pressure, he wants the reason for it to be straightened out first. And that is also something I have to queue for for several months.

In Sweden, health care is free, but it’s difficult to access because all the hospitals are overloaded.

In the summer time, there are not enough nurses or doctors, so they shut many parts down. Since I was so convinced myself that it is Humira that is causing the high blood pressure, I decided to stop taking it three months back. And here I am with a flare again since one month. And nobody is going to do anything about it until after the summer (unless it gets life threatening of course). I was prescribed Prednisolon, which I am taking, but it doesn’t work as good as it used to, I still have diarrhea.

The only thing I haven’t tried before is diet. I have no idea why. But now I’ve bought and read Breaking the Vicious Cycle: Intestinal Health Through Diet order on Amazon and I’m giving it a go. I’m going to take this month of July and do everything right according to SCD. Inspired by you americans :-) SCD is almost unknown here in Sweden.

I am curious to hear if anyone else has had similar reactions to the medications like I have. The doctors here say that my body’s powerful way of reacting to medications is very unusual. My immune system seems to strike back when something is suppressing it.

Thank you for reading :-)

written by Ingrid S

submitted in the colitis venting area







Sweden

11 Responses to 34 Year Old Swede Struggling

  1. Adam
    Adam July 7, 2015 at 10:27 pm #

    Best of luck to you Ingrid with getting things under control with the SCD. It has done wonders for me, and for sure there is a decent enough chance that you will have some good results too.

    Thank you so much for sharing your story, and please keep us posted on how things go for you, (and the future farm:)

    -Adam

  2. Martin from Estonia July 8, 2015 at 4:29 am #

    Hey! Reading your story I thought I’d perhaps share some tips about the SCD that have worked for me. If you find the SCD as outlined in Elaine’s book works for you just fine, then great. But for me I had to focus on certain things. First, I had to remove all the starch and even avoid fruits to see progress. I just kept it to low carb vegetables like broccoli and such. Basically I kept my diet on the ketogenic side with carbs in the 30g range for a day. But since I removed most of the carbs, I must stress the importance of EATING FATS! I try to not eat anything that does not have at least the amount or more of fat than protein. So most of my diet includes eggs, aged cheese, fatty bacon and low carb vegetables. But since I am also in the beginning phases of the diet, I have not introduced nuts into my diet yet. I am getting all my fats from animal foods.

    My daily menu looks something like this:

    Breakfast: 1250kcal omlette made with 4 eggs, at least 100g bacon, 100g cheese, a tomato and some spring onions, fried in olive oil.

    Lunch: 250g Cooked chicken with a bunch of full fat cheese (at least 100g) and 300g of broccoli.

    Dinner: Same as breakfast.

    Late night snack: A bunch of cheese and a load of smoked fatty bacon!

    All of this comes in at around 3200 calories plus to be modest.

    It might seem like a boring diet, but in the last three weeks on it I have seen progress I have not encountered in the last three years while eating like everybody else does and while taking medication.

    This diet somehow got rid of my 2 year long streak of diarrhea and other symptoms such as fatigue and the feeling of a fever in about 4 days.

    I tried adding in fruit, but it gave me stomach pains. But at least I now have found a starting point from which to go forward. And I am really grateful that I have. I had tried the SCD diet years before but I did not really achieve success with it, maybe it was because I focused my diet on fruit, honey and nuts too soon early on in the diet.

    So my advice to you would be to find that starting point. For me it meant cutting fruits out and EATING FAT with my protein. Also keeping total carbs on the low side (about 30g per day). Also, I think it would not be wise to drink straight up oil from the olive oil can or eat spoonfuls of butter, but rather foods in which the fat is naturally suspended (in my case cheese, eggs, bacon). Perhaps this eases their digestion.

    I have also found that eating this menu that I outlined before, I have no issues with appetite. I find myself looking forward to and craving the fatty bacon and cheese late night snack! Especially the fatty parts. I usually do not crave the lean cuts. Even when I am getting in all those calories. Perhaps my body is trying to make up for lost nutrition!

    I have no real idea how I will do from this point on, although I am hoping for the best. Perhaps my success is all a coincidence or something temporary. Perhaps it is to stay. But I could not pass on the opportunity to at least try and help a fellow neighbour from Sweden. Especially after I read that you are having such trouble. And remember once again to EAT FAT and get calories! This will keep you satiated and on the diet. And if you need to, cut the fruit and the more sugary vegetables for a few weeks.

    Best of luck to you!
    Martin from Estonia

  3. Julia July 8, 2015 at 4:41 am #

    I’m 33 and diagnosed July 2013 and have thought of nothing but babies!!! No kids now and all I want is to have without having flares are causing issues with the fetus . I did strict scd with that in may mind and am almost two years in and I started to heal a bit.. Went to a natural path here in Canada who helped tweak it and did a food intolerance test. I personally believe food is the best medicine for sure and its worth a shot!! Read Daniele Walker’s book or blog…against all grain …she was going through severe uc issues and had to have blood transfusions and all…she’s pregnant with her third child now…. I’m a pharmacy assistant by trade but drugs and me are not buddies either…I feel my symptoms also got worse since taking asacol and I refuse anything else…I wish u all the luck in the world for sure!! Have faith in diet for sure

  4. Bev July 8, 2015 at 1:42 pm #

    Just to add my two cents on meds and reactions to them…my body also seems to detest medication. Asacol,..which I took for almost 15 straight years was making me sicker, although I did not know that that is what it was making me feel so terrible. It exacerbated the UC symptoms, made me nauseous, tired, gave me headaches, and even eventually caused pneumonia!

    I also took steroid enemas for a time, and I reacted badly to them as well. Sleepless, nervous…I felt like I was dying!

    I think that some of our bodies just do not tolerate drugs well at all. I know mine doesn’t so I don’t take them. I control UC by taking a good probiotic and L-glutamine.

    The only drug that I do take id synthroid for low thyroid. It seems to have no ill effects on my body.

  5. Tom
    Tom July 8, 2015 at 2:43 pm #

    I don’t personally think diet has much to do with UC but in your case, it’s worth a try.

    That being said, nothing like the heart attack diet Martin is suggesting. The only thing that will do is raise your cholesterol, blood pressure, body fat and probably a heart attack.

    I’ve had surgery and chose to make my stoma permanent instead of having a jpouch. Have no regrets at all.

    All the best

    • Martin July 9, 2015 at 1:31 am #

      This diet does not have to be a permanent thing. Just to reduce the worst symptoms associated with colitis and to give you a starting point to a healthier life and diet. Anything is worth a try with this disease. Especially if it is for a short while. If it does not work, then onto something else, but if it does then all the better.

    • Nora Marks August 2, 2015 at 5:27 am #

      Re: Martin’s diet choices, I’m glad it worked for him, but I couldn’t eat that much animal fat and I was worried about the cholesterol too. At first, you have to make sure you eat enough calories, but when you can tolerate nuts, you can add them and they have lots of calories and healthy fat. Also, use olive oil to saute the veggies you can eat and you can add cheese. I was completely lactose intolerant until I did the SCD diet and now have the legal yogurt everyday, made from 2% milk, which also adds fat and calories. I make quick breads with legal ingredients and can now add raisins and other dried fruit (no sugar) and that satisfies my sweet tooth just fine. I miss the foods I can’t eat sometimes, but don’t miss the chronic diarrhea and the horrible back and joint pain I used to endure during a flair. TRY THE SCD DIET, IT REALLY WORKS.

  6. Marty Fed
    Marty July 8, 2015 at 4:27 pm #

    Hey Ingrid S., I wish you the best of luck in trying to control your UC symptoms with the SCD. I seem to have mine under control with lifestyle diet changes, regular exercise, and limiting stress. Just about finished taking Asacol HD myself (2 more weeks of just 1 pill/day, then cold-turkey on all meds!).

    Also, keep us all up-to-date on your hope to obtain a farm! That sounds exciting!

  7. Adrian July 8, 2015 at 7:20 pm #

    What you need is a nice relaxing foot rub!! I’ve found that stress makes my UC worse. Rest and a good psychologist have been well worth the time. Think of it this way, by investing in your own health you will be able to be a better mom to your own kids.
    Hugs help too!

  8. C. Miller July 9, 2015 at 7:46 am #

    Hi Ingrid. I agree with Adam and Martin. My story is much like yours. I was in hospital 3 times once for almost 2 months with nothing but blood every day.

    I fought to keep my colon and discharged myself when I felt strong enough…but had lost 20 lbs. I am now over 20 lbs. lighter than when I was first diagnosed, but i feel so good now. No drugs, no implants, just the diet. I looked up Thomas Brody from Australia and learned all I could about implants also. I did both the diet and implants for a year. All doctors told me I had to have my colon removed.

    I feel better than I ever have in my entire life. I feel so grateful I have written a 30 page book about the diet and implants, which I am sitting on but feel it would save so many colons if I downloaded it soon.

    I agree with Martin about the fruit. When I was really bad i couldn’t even eat what was on the diet. only chicken broth. I was concerned about the weight loss but i tried to think of putting weight on after i stopped the bleeding. The title of my book is: Stop The Bleeding. I must get it to people and save colons.

    Go very slow with the food Elaine recommends…Just boiled eggs and broth from chicken and her recipe for yogurt..no store bought yogurt. I don’t eat dairy except for her home made yogurt and never eat bacon, but I do enjoy some of the animal fat on pork and lamb now that I am well. I do agree that FAT is good but start everything really slow. When fat is cut out of food carbs are added and you must avoid all carbs when you are bleeding and cramping all day…plus we need the fat. No vegetables or fruit for a few days or weeks as they just increased my activity big time. You will know fast if what you ate is too much just now.
    I have now become drug and implant free and feel better than ever in my lifetime. No blood whatsoever and great b.ms.

    Good luck to you and stick to it.

    AS a foot note i must tell you that while being in hospital I met so many women in my room, who had been back up to 20 times for problems with abscesss and so many things after the surgery and were sorry they had it.
    I do not see spell check here and my spelling is poor so hope you can understand all of this…this is the reason the book sits I need it edited.

    There is a theory to u.c. which Elaine and implant drs. explain and it all makes sense, once you understand what is going on in our bodies. For starters your immune system is NOT attacking itself.

    You will survive this and be better, keep your faith…but first, you now have hope. Charity is my book and what Adam is doing.

    have a wonderful day…if not today very soon.

    • Joanne July 9, 2015 at 7:10 pm #

      What are implants? Do you mean fecal?

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