Hi I am Helen (41y). Diagnosed 3 years ago. Recent colonoscopy in may 2016. I was very ill and 4 months I ate only (and I mean only chicken broth – without chicken). I lost 38kg. After that I started to looking for help and find SCD.
recent picture of Helen!
Some more about Helen:
I am very open minded. I look for way find out and I try to help others. But I need more knowledge and guiding. Also I want to be vegan (after healing).
Symptoms:
Yes I have UC. Diarrhea, very low hemoglobine 78 – 83 (I do not take iron as SCD suggested), high inflammation , exacerbations- cause tiredness, some pain in stomach.
Correct SCD Diet
I cook all the time (which I like) but I am getting too often ill.. I do make something wrong.
So please help me from begging to make things correctly, aright.
Suspecting: that I cant tolerate cheese, butter (yogurt??), coconut milk, honey?, almond flour and also how to add some new cooked vegetables, fruits to menu. Haven’t eaten fresh fruits, vegetables more than 2 years..
NO ILLEGAL FOOD for 1 years 100%.
Yesterday I ate cheese, and some butter.. and today very ill. Also I am not sure that I tolerate banana (with the brown spots) and avocado?
If I eat cooked fruits (apple – total diarrhea) and cooked vegetables – I do have diarrhea also.. I make something wrong.
The doctor not support. Family accept SCD diet. Concerned most HOW to make it work and make correctly SCD diet.
Unfortunately we do not have here in Estonia (very small country) SCd group or any information so I started on my own . I were so week that I couldn’t translate a book. And this were mistake because I spend on intro diet months. (I bettered – but after 4 month still did had diarrhea, inflammation, low hemoglobin and etc). I founded Lucy Kitchenshop and get from her help. Thanks.
picture of Estonia where Helen is from!
But now – I need more help, more advices, suggestions and etc. I do not have any problems with missing “food” which is illegal, I have been eaten SCD food for 1 year now but still have diarrhea, high inflammation and etc. I think that I do not tolerate milk products – butter, cheeses, about yogurt I am not sure.
SO I ASK from all of you help, guiding how to make SCD correctly for getting results. ALSO if here is vegans – please share the menu, advice and etc.
Medications:
Prednisolone (for inflammation write now 16mg), pentasa 2mg – 4mg per day, asacol supp.
Only tried SCD but not correctly. Looking for help. Any help, good word, advice and etc.
I translated all the book Breaking the vicious cycle. No I have more information.
written by HelenKi
submitted in the colitis venting area
Hi I am Helen (41y). Diagnosed 3 years ago. Recent colonoscopy in may 2016. I was very ill and 4 month I ate only (and I mean only chicken broth – without chicken). I lost 38kg. After that I started to looking for help and find SCD.
Hi Helen. I’ve been on SCD for 14 months. It took a good 8 months before I saw any real difference but I had to have a round of prednisone (steroids) to get me there. Sometimes your body needs a little help putting out the “fire” before SCD can do the trick, I think. If you need support, may I suggest the Specific Carbohydrate Diet Facebook page. I have gotten so much support from this group. Many of the people there have been on the diet for years. There is also an SCD vegetarian group. I know how you are feeling, and you are not alone. I hope you find the help you are looking for. I do believe that diet helps a lot with IBD.
Kind regards,
Lisa
Hello dear Lisa.
I already wrote to Adam and said that I have tears on my eyes. Thankful tears. I AM SO THANKFUL TO FIND at least one voice – who believe, support and understand our stories.
Now I know that I am not alone and SCD will work on me also. I just need time and right steps.
Thank you, keep in touch. Helen
Hi Helen! There is another really good website for recipes, use the drop -down menu to select SCD recipes. The site was started by a lady whose son has Chrohn’s.
http://www.comfybelly.com If there’s anything that you know would cause problems like nuts and stuff like that I would definitely steer clear of it but there’s a lot of good recipes that use alternate flours and sweeteners. Pretty big selection for SCD fans.
Thank You dear Laura.
Also I wanted to ask – what is your oppinion about medicaments?
A doctor wants to add Remicade (through veins) but this cure last at least 1 year: start 0 – 2 weeks, 4 weeks and 8 weeks..
What to do?
I am scared about blood clamps and have right away diarhhea if I eat something raw or fresh (I have no eaten fresh fruits, vegetables 8 month), no juices..
I had a predisolon cure – but it didnt help much..
What would you do? If you say – be patiant I will wait for better results..
Just your oppinion please..
AND also other who would like to share. Thank You, Helen
Helen, everyone’s situation is different. Me, I have refused to take biologics. If I get to that point, I will have the j-pouch surgery. But that’s just me. I will also not take methotrexate or other drugs used for chemo. I can not see using this type of drug for the rest of my life. I just changed doctors, while in the midst of yet another flare. The meds she gave me are very expensive but right now my insurance is paying for it 100% since I met my deductible completely for the year right now I’m not even paying for doctors visits . I just had to spend $5000 to get there. I am still on the Lialda, but I am also taking Uceris which is a non-systemic steroid while I am weaning myself off of the prednisone at the same time . She also gave me Canasa suppositories which have worked wonders . After one week of taking the new drugs I I am not experiencing the frequent bathroom trips any longer . I still have yet to have a normal day but I feel that I am closer than I have ever been in the past six months that I’ve had this disease . I’m actually able to leave the house now which is huge . Yes I can’t eat anything raw either even fruits like watermelon I have a problem with, and certainly nothing with a skin on it or peel. I can eat bananas without a problem. No oranges or orange juice too acidic . Everything as far as vegetables go, they have to be cooked until they are very soft and easy to digest . No beans or peas or any type of legume. Also no cruciferous veggies like brocolli or cauliflower. No lettuce or tomatoes. I really try to limit anything with cane sugar in it . And absolutely nothing with high fructose corn syrup . I do extremely well with fish . I eat a lot of turkey, potatoes and rice. When my doctor suggested Curcumin I told her I was already taking it but she wants me to take 3000 mg daily for inflammation. I also take a probiotic called VSL#3. 112.5 billion/capsule. 3 caps twice daily. The only juice I have is Juicy Juice, made by Libby’s, 100% juice, no added sugar. Just got tested for nutrients that I am lacking, B12 was low, as was vitamin D, so I take one pill a week, 50000 iu if vitamin D right now, along with B 12 daily. So even though my diet is fairly limited as far as variety I feel that I’m doing pretty well with what I’m getting out of it . Like I said before everyone is different . I am fortunate that I do not have to work outside the home and for this I am extremely thankful and feel very blessed . I cannot imagine what life would be like having to leave the house every day hoping I made it to work without an accident and then praying that the bathroom was available for the next eight hours while I was there . That situation alone would be incredibly stressful to me . If I had been working I would have qualified for disability benefits . This is all so crazy to me I never had any major health issues before now I’m 55 years old and I never imagined in my wildest dreams having to go through this . Haven’t shed any tears, but that’s not to say that I wasn’t really concerned about my well-being at certain points in this journey . Staying well hydrated is very important especially when you are in the middle of a flare. It can be really hard on your kidneys, so dehydration is definitely something you want to avoid at all costs . I almost found out the hard way when I was going through a flare and contracted c-diff at the same time . Keep your head up there will be ups and downs and you will get to the point where there’s more good days than bad . Talk to your doctor about any concerns you have about the medicines they want to give you also look at the feedback on this website for people that are taking medicines that they want to prescribe to you . It is very helpful and will help you to make a decision that suits you .
Thank you again dear Laura. I have to translate and read again your message. I will do it tomorrow. We do not have these medicaments here so I can not compare. Something on me tells also – please do not take biologics. But prednislolon is a heavy drug also. One side of me wants to take a prednisolon to feel a bit better but other side is telling it wount help.
I take 4mg Pentasa every day. Nithing more and just hope to SCD diet. Maybe I have to be more patient?? I also do not know what to eat. Now thanks for you I look for more recepies from this webpage. But what about banana (bio and brown spots? May it be laxative..).
Avocade – its allowed but can it also be laxative? I suspect that I cant tolerate banana, avocado? Is it help if I frie banana? Also I eat mostly: fried liver, fried chicken, fried meat, fried salmon. Maybe to much fried food? . Chicken soup every day, carrot puree, pumpkin puree, zuccini, honey 2-3 tbls per day. Some days cooked fruit like pears, apples, blueberried.. often I am hungry .. I never eat outside the home. If I do not have a time then I mostly eat chicken soup 3 times per day..
No diary, no eggs, no almond powder or other bakes.. What do I eat wrong? Can you analize?
I sm losing my hope.. We have a trip to Spain leaving tomorrow but I dont know can I go??
Thank you that I can share my problems. H
Where are you from?
H
I’m from Texas- Houston, Texas. As far as Prednisone, right now I am down to 5mg a day, but I am also taking a new corticosteroid, called Uceris, and it is working pretty well for me. It’s not meant to be really long term though, so I will be off of it too, hopefully, in a few months. I also take Lialda.
Avocado is good, in moderation. Bananas are supposed to be good, they work well for me, I eat one every day before I take my steroid medicine, first thing in the morning. It’s supposed to be a pretty ripe one, with brown spots, but I can’t stand a mushy banana. I do ok as long as it’s not green. Kinda slows things down, which is a good thing. FRIED FOODS ARE NOT GOOD. Baked, broiled, grilled or stewed ONLY. Canned pumpkin is not good, it has sugar added. If you are fixing it from REAL pumpkin, that is OK. I don’t want to take biologics either. Super expensive and is for the rest of your life. Hope you are doing better!
Hey Lisa, can you send me the link of SCD vegeterian facebook page? I would like to subscribe.
I don’t use the diet. I find if I work on the stress factors in my life then I can pretty much eat a fairly normal diet.
I don’t eat red meat, drink caffeine or alcohol and I don’t have pasta or pizza. But I eat way too much bread, I don’t tend to eat too much dairy but I don’t have a problem with it, I eat rice and potatoes too.
I find if I meditate, walk, have talk therapy and touch therapy and generally work on my inner state and my emotions my diet is not the important factor.
Get your head sorted and your body follows
Dear Amanda Thank you now I will start with joga and also winter-swimming. The last year the coldest water was – 2c. Its like icesoup. It was very healing for stress. Now I try to stay on SCD. I am also nondrinker and dont drink coffee. From dairy I am eating SCD yogurt. Thank you very much for your answer. Helen
Hang in there…it takes a lot of time and seems to get worse before it gets better. You also have to modify it to fit you. I had to go very, very slowly and introduce new, very cooked foods basically 1 at a time. Also, a good quality probiotic. This site helped me a lot…especially the stages which gave me some good guidelines. Try and keep a journal of what works and what doesn’t, etc. Best of luck and health. Shelly http://pecanbread.com/p/how/stages.html
Thank you Shelly. Its good to know that sometimes it needed more time. I am sure that SCD will work on me also. Thank you. H
Try to avoid all SCD legal foods that are not allowed with AIP.
I had better success with AIP as with SCD.
You can also try to only eat a really blend diet with only a few foods you know you can tolerate. Then you add one food after another to see if you react to it. Sometimes you need to get back to the baseline to figure it out. Even then you might tolerate a food every few days, but as soon as you eat it more frequently like every day or every other day you can react to it. A food journal can be really helpful, too.
Thank you Me. I have never heard about AIP. I look for more information. Many thanks. Helen
I had much of the same problems a year ago as what you are having. My meds are basically the same, except that I take pentassa supp instead of asacol which made me feel bad every time I took them an seemed to make the diarrhea worse.
No matter what fruit I eat, except for bananas, it gives me diarrhea so I stay away from it as much as possible. Oranges and apples are the worst but I find that I can eat very small quantities of berries.
I eat a lot of fiber(basmati rice and high fiber cereals) and 3 to 4 veggies a day (potato, carrots, baby peas, sweet potato, beetroot and any and all pumpkin – once a week I will eat the less advised veggies like broccoli, cauliflower and green beans). I only eat fish and chicken, whereas I only ate red meat before I was diagnosed, and if I eat red meat nowadays its in small portions and not more than once a week.
Cheese and most other dairy products also gives me diarrhea, but in small quantities I can eat yogurt and fat free cottage cheese. During flare ups I stick to small quantities of lactose free milk (not soy milk which tastes horrible) and rather take a calcium supplement during that time. When healthy I find I can drink milk as normal but stick to fat free just to be safe.
Chocolate, alcohol, black tee (contains caffeine) and any coffee (even decaff) gives me diarrhea no matter how small quantities I consume so I just don’t consume it. Here in South Africa, where I am from, we drink rooibos tea (translated as red bush tea), which is caffeine free and is regarded as healthy and I mostly drink that. If you can somehow manage to find it somewhere up there in the north try it. I read that it is being exported, its only grown locally as far as I know, to some places like North America, Australia and some parts of Europe.
Another thing that helps is exercise. During a flare up I stick to low intensity stuff like going for a 30 min walk. When healthy I do a lot of exercise, I visit the gym 3 to 4 times a week. Unfortunately I cannot do lengthy intensive cardio as that gives me stomach cramps so I do strength and low intensity cardio. I have been mostly symptom free for over a year now (occasional stomach cramps, blood and diarrhea) and I found that the times that I did show symptoms was when I did not stick to my diet and did not exercise enough.
As others have said a healthy mind also helps. I try to keep calm and stay away from stress. I have a rule that helps me to remove the stress of the week: on Saturdays and Sundays(which is the day of the Lord in any case) I may not do anything work related. Saturdays are there for my hobbies, woodworking especially, and Sundays are there for church service and resting in the peace that only God can give. I do not want to force my religion down onto anyone as you are free to have your own opinion just like I am, but if it was not for the strength that God gives me through regular Bible study and prayer I would probably be in a permanent state of stress and flare ups would be my best friend.
One more thing, I also checked that SCD diet a while back and some of the foods that are legal according to that list are foods that my dietitian told my stay away from. Other legal food on that list I know I cannot eat as they give me diarrhea. There are also food marked as illegal, oats specifically, which I eat regularly with no negative effect.
Rather disregard that list’s advice, as it is compiled for a larger audience than just people with UC. My advice is this: go see a dietitian or doctor who knows the specific needs of UC patients. Stay away from any food that causes gas (like beans, broccoli, onions, carbonated drinks etc.) and any food that are known to be natural laxatives and just plain cause diarrhea (curry, caffeine, diary products etc.) also skip as much sugar as you can and that includes the new “safe” artificial sugars that some diets promote.
Listen to your body it will tell you exactly what you can and cannot eat, much better than some list based on hocus pocus science that has absolute no hard physical evidence as to what people ate eons ago and does not really take into account all the complexities of UC. As my doctor, who is the leading specialist in SA, told me: look at proposed diets and stick to certain types of food (fiber and certain veggies are very important) and then listen to your body. You will know when a food type does not agree with your condition. Be wary of people with absolutely no knowledge of UC who try and prescribe a diet that is loosely based on assumptions about thousands of years ago with no physical evidence to support their claims. Yes some people with UC may be able to follow this SCD legal/illegal list as everyone with our condition differs, but I cannot and it sounds like you alse need to try another diet.
Wow thank you for detail overview.I have to read it again and I will. Then I can compare the reactions and find some more help.
Really many many thanks. I am also always try to answer and I know it take time but now I feel!! how important is every opinion and respond/ feedback.
God bless you. H
When I started the SCD diet I could eat only 2 things. soft boiled eggs and chicken broth with no salt or flavour.
My colitis at the time was severe being told to have my colon removed. I didn’t do that. I stuck with the diet, cut out all supplements except vit D everything made me bleed.
I had only blood for over one month in hospital no bms.
3 years later and I am fine.
Stick to the diet but only eat what you can at first. No veggies, dairy, fruit, juice of any kind, nothing that makes your bowel active.
I made the almond muffins from the book to keep some weight on..very little honey.. You will lose a lot of weight but if you can stay hydrated…fluids like water only you eventually will tolerate more foods which are legal. I went to hospital a few times to get fluids into me by intravenous. See your doctor and insist on intravenous blood transfusion if you need it. I did about 5 of them.
I got the iron infusions at a local hospital as iron supplements made me bleed a great deal. My blood doctor prescribed K-10 potassium chloride oral solution, which when I followed the directions helped me to stop bleeding. I also take a supplement totally natural DHEA hormone natural source from your doctor at a compounding pharmacy. This made me stronger along with a small dose of testosterone in a cream.
I now weigh 125, was 80 lbs. only, and take no drugs and stay on the diet except I do not eat any dairy as it always makes me bleed.
It is very scary but be patient it will pass.
Hello Cathy . Your storie is really scary. Our doctors here are not than “helpful”.. but yes, I try step by step.
I started with diary, where I am wroting down all symptoms encl. menu of the days.
Today I feel very good. I ate some puree of blueberries, eggs, liver, SCD chicken soup. I think that for me were desperate those 2 years which I made the SCD diet wrong ( I have been avoided the illegal products stricly more than year – but I ate raw fruits, vegetables and etc)
Also it is very very good to know that you are fine now and your jorney wasnt easy. I am sorry about that.
Thank you for your shared story. Thank you. Helen
Thank you Helen for your response. You are eating the best things today….just go very slow on the berries as all these things can cause cramping at first. I now eat a good firm banana as I don’t like sweet ones which are ripe. I also love organic peanut butter as my treat with the banana when you can manage those foods. For now the meat may keep you strong along with the fat…some fat as it can help you. Just to be clear, when I say NO dairy I mean I couldn’t eat butter, milk cheese or even yogurt still can not as it always makes me bleed. I eat only coconut oil on my muffins and I now eat lots of roasted squash with coconut oil on them I have heard from people who have cured themselves by simply cutting out every milk or milk product from any animal…some of us just can not tolerate another animals milk…makes sense to me.
Also to be clear I did not get a blood transfusion(sorry it sounded like I did)….doctors spoke about it but I managed to avoid that and I didn’t do any blood thinners in hospital…I insisted. Blood thinners are to prevent a blood clot but is NOT right for anyone who is bleeding a great deal as it makes it worse.. The iron infusions were very helpful to give me my strength back. My blood work for iron really improved. With so much bleeding we lose iron and it takes so long to get it back..
The first 2 years I took prednizone to stop the bleeding but I now feel I could have done this with the strict diet.
You can ask me any questions…happy to help you…it’s not easy but it will eventually get back to normal. I will always stay on the SCD diet.
Hi again.
Now I understand this “littel” pressure on toilet – it my be caused by berries.
Banana – I eat max 1 banana per day (partly – in the morning, lounc and evening)
Fresh juices (without pulp) – it seems to me that I tolerate very good – even apple juice! I made today celery-carrto-cabbage and pure apple juice. The tastes! – after so many monthes – delicous.
Did you tolarate juices well? Or might they be laxative?
what about frying on pan? I mostly eat fried chicken steak or fried liver (after liver sometimes I have heartbum.
Dates? not reccomended ?
The coconut milk? creamy coconut?
raspberries – I remember that not on the begging SCD? Maybe I remeber wrong..
Orange juice – tomorrow I will try (I know that it is not allowed by mornings)
I really like peanuts! but right now I am afraid its not good idea! But organic peanutbutter?? may also be laxative – before it were for me.. Which kind? not roasted peanuts?
If the symptoms are not bettering then I will exlude also the yogurt (this is the only one diary product on my list – right now it seems okey.)
I am scared – yes I am – because I am thinking that maybe it is only because the medications – I have right now 8mg prednizone – next week 4mg and then 0.
BUT I am sure that the food change have been made some steps forward and diarhhea no will return (even if I finish the prednizolone).
What about Pentasa 4mg? I have been heard that Pentasa is “useless”..
Squash – good idea. I ll make tomorrow. Thanks.
Do you eat meat? Fish? Chicken?
Where are You from?
I am agree SCD diet is very rich.. so no needs to return to other diets.
2 years prednizone – on which ammount per day?
Do you have some side effects?
I have murmur and rustle to my ears.. hear my heartbeets.. somebody guessed that it is so because of low hemoglobine.
Thank you for your reply.
joga – sport suggestions? Helen
Hi Helen! I’ve had UC now for 5 months. When you prepare your vegetables to cook, are you peeling them first? If not, you should. Sorry, but peanuts are not good for UC- anything that is hard, crunchy or chewy takes too much work to digest and causes problems. No dairy , especially no cheese. No fizzy drinks. Juice has too much sugar in it, and sugar is not good for UC. Nothing fried with a flour coating. Try eating fish or chicken, no beef. And nothing peppery hot or spicy. I tried dates, they didn’t help, and they are really too sweet anyway. I would love to have a Coke, but it’s just not worth it. I try not to think about what I can’t have anymore and try to think of different ways to fix the things I can have. I’ve found that getting something substantial In my stomach early and not waiting to take my prednisone at lunchtime helps some. Now I take it right after breakfast- a hard boiled egg and a banana. No orange juice- too sweet and too much acid- just plain water to drink for me. Hope this helps some. Remember, you’re not alone!
Hi Laura. Thank you for your comment. I am sure that we are a 100% well for some time. This SCD has helped a lot.
Good tips! concentrate on things what you want.. if we focuse on our wishes then they will come true.
I am a winterswimmer. Today we have here + 12c and water I think about +8c .Its really feel good and help also..
Thank you Laura. Have a sunny Sunday!
Personally I drink very little juice of any kind. If I do, I mix it with 3 times water. Sugar seems to be what sets me off so the juice is just too sweet for me to tolerate. I now have a little organic juice with water for a nice change and a pick me up…but not often.
Yes, for me a laxative
.I roast my organic meat but fried in a good oil like coconut or avocado seems fine…not olive as the temperature is too high. I generally eat it with a salad now or broccoli, or coleslaw or cauliflower…no sweet potatoes as she says in the book too sweet..and of course no potatoes or rice or pasta or any grain what so ever.
No dates or figs etc…too sugary.
Just a bit of coconut water in water.
Yes all meats and fish, once a week, steamed or roasted Salmon not farmed if possible.
I no nothing about drugs, just prednizone and Remicade. Remicade after 3 infusions affected my breathing. I was very short of breath so stopped…my idea not the doctor’s.
I understand your fear coming off prednizone I had that also. Go even slower at the end was my way and it’s better I think and not so fearful.
Peanut butter is fine for me now in large quantities…I love it!
All my nuts are raw and I love them too…lots of them now
.All juices that are citrus are terrible for me unless just a bit with water…3 waters to 1 juice.in glass.
I live in Toronto Canada.
i have been in the top 3 hospitals here and found the doctors no nothing to cure colitis as they have no idea what causes it..Elaine, SCD diet knows why it happens…mostly you can not eat sugars or carbs as they turn into sugar and they feed the bacteria that causes the condition. i read her book a dozen times and refer to it daily.
I have actually written a book about my experience and how I got well myself. Soon I hope to upload it on the computer so everyone can see it (no cost)…just not sure how to do this…it is my way of helping others as there is little help out there for us.
If you run into big trouble at any time I am here to help you.
Hi dear Cathy. Thank you for answer. Yesterday I feeled very well, today not so good.
Thank you for tips. I put also now juice with water.. I think that peanut butter, peanuts and coconut milk are too early right now. Of course I miss the raw fruits and vegetables and salad but I think it take at least 6 month.. then I try.. or if I feel better.
Are you agree that right now its toovearly?
What about Acidophilus capsulas SCD safe? And vitamines I bougt from Lucy http://www.lucykitchenshop.com
I also made sauerkraut and drink this juice (2-3 tbls per day- is it good idea?)
Banana might be laxative? And avocado also? Or can I eat them in small quantities?
Do youbhave good recepie for cake, muffins or some baking.. which I can try now..
Mostly I eat:
Morning: juice, 2 fried eggs, 1/2 avocado, some cooked fruit pure
Someyimes carrot or pumpkin puree
Lounch: chiken soup mostly every day, tea with honey, or owenbaked minced meat(organic) balls with littel vegetables ( also baked).
Evening: chicken filee or fish or meat steak. Yogurt, fruit puree or 1/2 banana or blueberry jam
I want to eat a lot. My body remember a hunger ( 4 month only chicken broth . Only)
I hope I really hope that I do not need to strick my diet (exlude cooked fruits, berries, vegetables, juices..) .
Sometimes I bake banana pancake ( banana egg) or really rearly some muffins with almond flour..
Please comment my menu.
I fried with olive oil now I change.
Also I do not make a differents when I extrate mucus or when its diarrhea… the Elaine said that diarrhea is pure water??
Yesterday were a really goot stool… but today .. no… but as you said I have to be positive and understand that I need just a time!!
Thank you from all my heart. I let you know how I am doing.
Thank for this possibility.
My good friend sister live in Toronto. Maybe You suggest some products which she would send to me? I mean foodproducts – like peanutbutter? Almond flour, SCD products
I miss coffee.. but now no I am afraid its laxative
.. Thank you. H
I made the mistake of Thinking that steroids/prednisolone were damaging and went without for some time.
I now realise it just is naive to think that when your body is in extreme inflammation that diet is going to be a cure.
You literally could die trying that method. Please people be sensible. Drugs are there to help. If you have serious bleeding it needs to be stopped. Don’t hold back.
I agree the chemo stuff is hardcore but I don’t blame anyone for trying it to get themselves well.
We need common sense, we don’t neccessarily make the best choices when we are trying to get well. So the doctor is there to help guide us through.
With love and huge compassion for those suffering.
It’s a horrible disease but life could be worse.
I would like to second what Amanda says. I have just come out of a very severe flare that lasted approx 1.5 years. I was determined to beat it naturally and changed my, already gluten and dairy free diet, to the SCD diet, sticking to it rigidly (I’ve never done so much cooking and washing up in my life!) . Whilst there were moments of mild improvement, it was never long lived and I lost a dramatic amount of weight which made me feel weak, generally unwell and extremely depressed. This meant I had to take months of work off, which as a freelancer meant that I was earning very little money and increasing debt which was an extra added stress. All in all, I felt trapped in a spiral of doom and worrying about every morsel I put in my mouth, wasn’t helping.
Eventually, out of desperation to get my life back, I succumbed to the Doctors request and tried Azathioprine. This was absolutely NOT an easy decision. For years I have strived to keep things as natural as possible – from food to the toiletries I use! – so agreeing to flood myself with chemicals went against every thing I stood and fought for. It choked me to take them every day but i decided to trust that they would work and persevere. At this point, I also made the decision to ease up on my SCD diet and re-introduce rice and the odd gluten free grain. I had suspected for some time that I wasn’t tolerating the yoghurt (which I made in strict SCD accordance) , cheese and constant flow of nuts – all of which were foods which I had avoided prior to my flare. Within a couple of months the results were quite remarkable. Things quickly began to settle for the first time in over a year. At this stage, I believe that for me, removing the dairy and nuts really helped while the tablets kicked in. After 5 months, I was more or less in remission.
Don’t get me wrong, I still hate that I have to take Azathioprine and it terrifies me when I think of the potential consequences but I was getting to the point where I was so ill, I couldnt see the point in anything. When you get to that stage, I think, as Amanda says, you have to use common sense and allow the Doctors and drugs to do their job so that you can have a chance to live a life worth living. I am around 8 months into remission now and although it is bittersweet, I am extremely thankful to be able to work and walk around without worry. My hope is that I won’t have to be on Azathioprine too long and that my symptoms will have settled enough for a lengthy period of time to see me through before the disease raises it’s ugly head again.
I feel your despair – I have been there and it is awful. Whilst I would never push anyone to take drugs, please don’t forget that they are there for a reason.
Sending you strength, love and hope and I sincerely hope you gain some relief soon.
Erika.
Hello Erika Hello Amanda
Thank you very much for your advice. Tomorrow I see my doctor. The treatment which shes offering is biological treatment – remicade. I didnt tolerate imuran (asathioprine) headache and a hugh sickness. Which were eagle with staying in bed.. So no asiathioprine
But yes I will try remicade. Thank you for advice and for support and shareing.
I let you know how I doing. Take care, H
Ps! if somebody have an experience with remicade please share. H
Cathy,
I live in Toronto as well and I agree with your statement about the doctors. Would you mind if I contacted you about my personal experience? I’m currently on the SCD diet as well and am struggling with navigating through the next stages.
Hi yes please kirthelen@gmail.com. I am from Estonia. Helen