My story of ulcerative colitis
HOW I GOT DIAGNOSED
I was a PhD student at North Dakota State University, Fargo, ND, USA in my final year. I maintained a good health and led a normal life along with my family.
It was on 1st Nov 2013, when I got up from bed in the morning, I felt some cramping and pain in my abdomen. I thought it was perhaps due the gas or so. I recalled that I ate a large piece of birthday cake the previous night that somebody brought to our home. After sometime, the pain increased, so I drank lot of water, thinking something was wrong with my stomach. After visiting bathroom couple of times, the pain receded, and I was back to normal. But, there was discomfort inside which I took lightly.
In those days, my stomach was not upset… but I was having irregular timing for stools. I was taking cold drinks – excessively.
On 7th Nov 2013, I attended a presentation where I had cold drinks and sweet biscuits. On the same day at dinner I again had lot of cold drinks. That night when I went to bed, after around 3 hours, I got up and had to rush for the bathroom. I was having diarrhea. Whole night went busy, and I could barely sleep.
Next day on 8th Nov 2013, after morning, I felt low grade fever. I waited till afternoon in a hope that condition might get better, but diarrhea and cramping did not stop. Finally, I decided to visit the hospital. I went to Sanford Walk-in clinic south Fargo, ND, USA. After waiting for two hours, I met the doctor and explained to him my problems. He suggested blood and urine tests. After about an hour, the doctor informed me that my all reports were negative and this could be a viral infection – perhaps “Stomach Flu” (Gastroenteritis). He asked me to avoid dairy products, and there were no medications required, and I needed to take lot of water.
Next day on 9th Nov 2013 I got worse. I started looking on the internet to find out what was preferred food during Stomach Flu, and after exploring a few links, I came to know that a diet consisting of Banana, Rice, Applesauce, and Toast (BRAT) is recommended by most. So I started eating white rice, banana, and toast. But, my condition deteriorated further, the following days. I was losing weight, was unable to sleep at night due to continuous bathroom visits, and was also experiencing a lot of cramping. After a few more days passed, I saw some kind of red streaks in my stool which I took for blood, something I never experienced ever before. Low grade fever formed a regular pattern that is it started at noon and stayed till mid night. Though it was low grade fever, but without proper food and severe diarrhea it used to feel like 102 F. On 14th Nov 2013, I again called the hospital. I was told that the doctor had left a note that if my conditions did not improve in 4 days, then I should visit again. So I decided to visit the hospital.
On 15 Nov 2013, I again went to the same walk-in clinic. This time it was a different doctor. He suggested that I might not be suffering from a viral infection, as viral infections do not stay longer than 4 days, and it must be a bacterial infection. He prescribed Flagyl (metronidazole) 500 mg, three times a day. He also suggested stool test and culture to find out any parasite infections, such as Clostridium difficile and Giardiasis, but the reports showed it was not the case. After taking 5th dose of Flagyl, there was still no significant improvement in my health. I was visiting bathroom almost 20 times in 24 hours.
On the night of 18 Nov 2013, when I took Flagyl the tablet got stuck in my throat due to its huge size and I started having nausea. After a couple of hours, I started vomiting. Next morning, I again vomited. Now, I was having nausea as well as diarrhea. My condition was really bad and I felt lot of cramping pain in my abdomen. So, my wife again called the hospital, and the nurse suggested to have a primary doctor assigned. The pain was unbearable so I asked for any doctor. The assigned doctor was available on 18th Nov, so I went in the afternoon for check-up. After telling her all symptoms (starting from 1st Nov), she informed me that I might not be having any bacterial / viral infection, so I must stop taking Flagyl. She asked me to have CT scan to see whats going on in my abdomen. On the same day in the afternoon, I got appointment for the CT scan. When done, I was given a sheet of paper with directions that I need to drink at least 3 litres of water to get rid of dye for contrast inside my body. And, when I went to the bathroom after CT scan, I was able to see clear blood in the flush, so now I was totally convinced that something was really going bad inside me. On reaching home, whatever I drank was being vomited out. I didn’t eat anything since morning. Soon after that, I also started feeling lot of pain in my abdomen. After staying in that condition for about 2 hours, I again called hospital, and they asked me to visit the emergency room for fear of dehydration. In the emergency room, the doctor came to see me (who looked experienced). I told him all my symptoms. He asked me whether or not I was having any mouth ulcers, and I told him that I was having those much frequently for the past three months, and even at that time I was having an ulcer in mouth. He diagnosed me (possibly) with “Ulcerative Colitis” and suggested to have colonoscopy for confirmation. They admitted me in the hospital.
I had colonoscopy performed on 20th Nov 2013, and later in the afternoon I was told that I was having ulcers in my large intestines. Still, I did not know what to eat, so my wife ordered the normal hospital food as dinner (along with chocolate coated ice cream 🙂 ). Though I really enjoyed the dinner, but that was the worst night I ever spent since my illness as I had to visit bathroom after every 10 mins.
On 21st Nov 2013, the GI doctor visited me. He said I was free to go home, and advised steroids as medication, as I was having autoimmune response disease that was causing inflammation in my large intestine. I asked him about the diet and he said I would be visited by a dietician who would brief me. The dietician came and told me that I should be having low fiber diet. The chart she gave me was having banana, dinner rolls, cereals, tortillas as legal diet. She also prescribed me the chewable multi-vitamins. I was prescribed with the following medication on discharge from hospital:
- Prednison 40mg for 5 days, then 20mg for 5 days, then 10mg for 5 days, then 2.5mg for 5 days. (Dosage was once in the morning)
- DELZICOL (mesalamine) 400mg three times a day.
- mesalamine (rowasa) 4 Gm enema (for 1 week)
- Famotidine 20mg twice daily
Apart from the above medication, I was taking these:
- Omega3 Fish Oil, 2 capsules daily
- Chewable multivitamins (Centrum Flavor Burst Chews Adult Multivitamins, Mixed Fruit)
- Chewable Calcium and Vitamin D (Centrum)
This medication resulted in very little improvement in my troubles, diarrhea reduced to approx. 6-8 visits per day, but pain and inflammation in my intestines continued during bowl movements. Bleeding continued. Each bowl movement was a nightmare for me. I used to get extreme pain up to scale of 8 to 10 during bowl movements and the pain caused me to vomit also. It was very torturous. I was broken, shattered, tattered, and often could not resist crying due to pain. Days passed on, there was no concept of sleep at night. I was able to sleep for just 3 or 4 hours in 24 hours. For the first time in my life I was seeing my bones under my skin, as all fats were gone. I already had lost 20 pounds weight. The uncertainity and depression stalked me and I started losing hope. In desparation I even thought of an option of suicide, so much so, that I briefed my wife for the actions to be taken in case I was found dead, and how to transport my body back to my country. But, being a muslim by faith, I prayed from core of my heart before Allah Almighty for forgiveness. The only way out that I knew was through prayers, as medicine was not giving any results. I called continuously with out any break. I recited Holy Quran which infused some relief in my pain scale and I felt a sense of resilience and fortitude in my mind and I had the hopes descending on me. I read how the Prophet Ayub (RA) fell in a painful sickness and how he turned to Allah for help, which finally came and he was back to normal. I was convinced that this spiritual recipe was prescribed for the faithful in such like situations. My father back home, was continuously motivating me, and my mother was praying hard for me. It was a difficult time, I often lost temper at times, as a result of depression, lack of sleep, and steroids.
WHY I GOT ULCERATIVE COLITIS (UC)?
Thanks to internet… no definite answer, except that it was an autoimmune response. The doctors checked if it was a family disease which I told them it was not. With recourse to internet I found a very interesting article: Leaky Gut Syndrome In Plain English And How To Fix It
I found the following paragraph in the above article:
What Causes Leaky Gut?
The cause of Leaky Gut is widely debated in the medical community. However, there is some level of consensus that the following are the basic contributors:
– Diet: Consuming high amounts of refined sugars, processed foods, preservatives, refined flours, and flavorings introduces massive amounts of chemicals into the body that is seen as toxic. If your body has a hard time keeping up the toxins start to build up and cause inflammation (like we talked about earlier).
– Chronic Stress: Chronic stress almost always results in a suppressed immune system. A weakened immune system cannot handle doing its normal job and gets overrun with pathogens very quickly. This increases overall gut inflammation leading to increased permeability of the intestinal lining.
Consuming excessive sugar, YES. Stress, YES due to my studies. However, there could be other reasons also of having ulcerative colitis. One reason is that UC can happen due to the presence of amoebas (amoebaic colitis) and other parasites (parasitic colitis) in the intestine. Many medications (such as antibiotics) fail in killing the amoebas and parasites. Later in my story, I will mention how I tried to eliminate amoebas or parasites (if any) from my body.
EFFECT OF CHLORINATED WATER ON HUMAN INTESTINES
I remember that late in the month of October, the taste of our water changed due the possible addition of chlorine. I searched internet and was stunned to know that the chlorine in water can also be a cause of ulcerative colitis, as chlorine disturbs the intestinal eco system and kills the healthy bacteria, which may lead to the over growth of bad bacteria. Following two articles are worth reading: (a) http://www.foodrenegade.com/chlorinated-showers-baths-kill-gut-flora/ and (b) http://www.mindbodyhealth.com/Chlorine1.htm
Through further research, I found out that easiest way to remove chlorine from water is by boiling the water for 15 minutes: http://homebrew.stackexchange.com/questions/3447/what-are-the-various-ways-to-remove-chlorine-chloramine-from-tap-water
I had already started using the boiled water.
HOW I GOT INTRODUCED TO SCD
I experimented with different foods, ate bananas, dinner rolls, Greek yogurt (as probiotics), oatmeal. All hit me back and I got worse. tried boiled potato and got diarrhea. Tried raw apple, and whole night spent with gas and diarrhea. Diluted grape juice was not tolerated. Cranberry’s juice, same results. Though I had the hopes, yet the trouble was not subsiding. My steroids dosage had already tapered to 20mg and I was not having any good signs of improvement, the worst was yet to come.
In desperation, I searched internet for solution. My initial search query was “ulcerative colitis diet”, and I got a long list. After going through different links and getting more and more confused, finally I found a link: http://scdlifestyle.com/. This link was talking about some diet known as Specific Carbohydrate Diet (SCD). They were selling a book on the SCD diet for $38. I purchased one and read it to find out that authors were frequently referring to another book named: Breaking the Vicious Cycle: Intestinal Health Through Diet (BTVC) written by a female author “Elaine Gottschall”. This book also had a website: http://www.breakingtheviciouscycle.info/ from which I found out an initial diet plan for my disease (ulcerative colitis). I ordered Elain’s book from Amazon.
THE MISTAKES I WAS MAKING WITH INTRO SCD DIET
The book told me the logic behind SCD diet strongly discouraged the use of foods that were high in sugar (table sugar, lactose, or sucrose, found in milk, and yogurt available in market), fiber (from grains, including bran), and starches (e.g., rice, sago, corn-flour, wheatflour or wheat gluten, unripe banana, Potatoes, and yams). The aforementioned foods were forbidden for UC patients as they nourished a “bad bacteria population” found in human intestines that damages our intestinal walls and causes ulcers. So the idea is to starve the bad bacteria out of body through food preventive care, and thus “breaking the vicious cycle” of bacteria, of making new populations and damaging intestines.
After studying the science presented in BTVC, I discovered the mistakes I made. The chewable vitamins and calcium supplements that I took had sugar mixed in them. The dinner rolls I took had sugar and fiber. Oatmeal had fiber. Banana’s that I ate were not properly ripe and caused me problems due to sugar and insoluble fiber. Greek Yogurt that I was using as probiotics was also having sugar mixed (and by the way market avaiable yogurts are not fermented for 24 hours so they still have lactose (sugar) in them (Elaine’s book)). I called up my dietician and asked her about the sugar in the chewable vitamins and calcium, dinner rolls, etc , and she simply responded that this much sugar quantities were OK. But, after doing further research and joining the yahoo group BTVC-SCD I came to know that even a smallest quantity of sugar was a prize for bad bacteria busy in damaging the intestines, so NO SUGAR!!!
As a first step, I tried to stop taking all those food items that were in the illegal list of SCD.
On 27th Nov 2013 I began my first round of SCD diet and followed the menu of intro diet mentioned on the website: http://www.breakingtheviciouscycle.info/p/the-intro-diet/ (this link also had some recipes of the introductory diet). I remember, I requested my wife to make a banana nuts cake for me following one of the recipes in Elaine’s book. She put three eggs, one banana, apart from using almond, pecan, cachews, and walnuts all together. I really enjoyed the nuts cake but could not sleep at night due to diarrhea (later I came to know nuts was an advanced food, and my wife mistakenly put baking powder instead of baking soda in the cake). I was still taking the (sugared) chewable multivitamins / calcium as I was unable to find the source of non-sugared ones. My prednison dosage was tapered to 20mg. After about 4 days on 30th Nov 2013 my bleeding had significanly reduced. But diarrhea, cramping, and pain was still there, and I knew I was still going wrong somewhere. It could be due to the sugar in vitamins/calcium. After finding out the source of SCD Legal multivitamins and Calcium: (http://www.freedavitamins.com/index.php?p=catalog&parent=18&pg=1) I stopped taking the sugar coated vitamins/Calcium. I also found an SCD legal source of probiotics that I ordered as well: http://www.giprohealth.com/scdophilusnext.aspx.
ANOTHER ROUND OF INTRO DIET
On 1st Dec 2013, I properly started the SCD intro diet, but I only included the following items from the intro diet menu: (a) chicken broth, (b) boiled carrots, and (c) broiled chicken piece after boiling it (NO cheese, yogurt, eggs, apple cider, grape juice, gelatin). Along with SCD diet, the only thing as supplement that I was taking was Omega3 fish oil, two capsules daily. I was unable to take probiotics and vitamins, as my shipment had not arrived yet.
- I did not take cheese and yogurt as I read that dairy products often contain casein protein to which some people may react.
- I did not take eggs, as I read that eggs contain sulfites, that may cause some people gas and bloating.
- I did not take apple cider, gelatin, and apple sauce due the presence of fructose in these items. And I also learned that some people have fructose intolerance that may cause them gas / diarrhea.
- I tried to have grape juice that resulted in increase in diarrhea (due to presence of fructose), so I quit that.
- I tried one teaspoon of pasteurized honey from the market, but this resulted in gas and diarrhea so I also quit that. Later I found that the problem was due to the presence of small percentage of sucrose. I also learned that the natural honey unpasteurized contains an enzyme which helps neutralize the sucrose, and flies off during pasteurization.
The science presented in Elaine Gottschall’s book is nice and elaborative, but the diet part is quite tricky to follow. One can become an easy victim of the Intro diet presented in that book if the person try multiple items in one go. This book definitely requires a revision on the portion of diet and recipes. Therefore, it is better to consult other SCD sources for “diet portion”, and one such useful source is: http://pecanbread.com/p/how/stages.html.
Same day, 1st Dec 2013, I met my primary doctor and told her my bathroom visit frequency as 12/24 hours along with pain and cramping. I was referred to Gastroenterologist (GI) and was given appointment on “15th Jan 2014”, regardless of the agony I was in.
FRUSTATION, AND POSSIBLE DIE-OFF
To my frustration, I did not have a noticeable improvement which I expected after coming on SCD diet. I had sleepless nights since the onset of disease on 8th Nov. Perhaps it was too late before I figured out the correct course of SCD diet. Probably my entry into SCD diet regime was too late. As prednison dosage tapered to 10mg, and no healing sign of the intestines. I conveniently concluded that illegal diet (before I started SCD) neutralized the advantage of steroid. Even after entering into SCD some of the constituents proved to be illegal for me. Pain, diarrhea, and cramping did not spare me even after 1 week of SCD diet. Low grade fever caught me from 1st to 3rd Dec. A study revealed that dying harmul bacteria release toxins, so it could be the effect of such toxins getting into the blood causing fever and body rashes.
On 3rd Dec at night I had very severe pain during bowl movements that was unbearable.
ANOTHER VISIT TO GI
On 4th of Dec 2013, the morning was worst for me as I was again having excruciating pain in my abdomen. I continued praying and was thinking of calling the emergency when I received a call that someone’s appointment was cancelled and I could avail the opportunity (God given) of seeing the GI. I rushed through the winter storm and made it two minutes before losing the appointment. The GI proved to be an angel from heavens.
I told him all my symptoms, and he corrected my steroid tapering pattern and doubled Delizcol dosage. Due to the quicker tapering, the colon did not get sufficient time for healing. Advising blood test after some time to gaurd against kindneys being affected. He also gave me chart of FodMap diet to follow but I was comfortable with SCD, yet I picked up some items from this chart conforming with SCD diet. My new medication was following:
- Prednison 40mg, for 7 days, with tappering of 5mg after every 7 days
- DELZICOL (mesalamine) 2400mg in morning, 2400mg at evening (total 4.8g per day)
- Famotidine 20mg twice daily (GI said, if I wanted to quit, I may quit. So I quit this after a few days)
- mesalamine (rowasa) 4 Gm enema
GI also suggested a list of tests that included: blood test, urine test, stool test, and TB test. All reports came negative.
SECOND ATTEMPT OF MEDICATIONS AND SCD DIET
On coming back home, I started taking the new medication. Initially, I removed the evening dosage of Famotidine and I felt some improvement, as this medicine was blocking stomach acids due to which food was not properly digesting, and undigested food was feeding the bad bacteria in the intestine. However, I continued the morning dosage for almost 5 days as doctor told me that Prednison may damage stomach walls so Famotidine (pepcid) is recommended to decrease that effect. The only other supplement apart from medications that I was taking was Omega3 fish oil two times a day. My vitamins and probiotics did not arrive yet. On 5 Dec 2013, when I got up, I had a bad flare, and till evening I remained in pain. I started maintaining a food journal, in which I was noting the items that I ate during each meal, the number of times I had to go to the bathroom, and the shape of stool. It helped me at least in counting of my bathroom visits, which gave me an idea whether or not I was improving.
The food that I was taking was chicken broth and boiled -> broiled chicken pieces, along with pureed carrots. But my diarrhea was not stopping though bleeding had stopped completely (in four days from 1st dec to 4th Dec, since I started SCD). So I again started locating source of trouble…… it were the carrots. The following is text I found about carrots from http://pecanbread.com/p/how/introdiet.html:
Why is chicken soup important during the early stage
Chicken soup is highly recommended but not required. It has natural anti-inflammatory properties, and can also help to balance your gut chemistry, keep you hydrated, and get protein and good minerals into your system. If you are eating the chicken soup, try eating just the broth without the carrots – not everyone tolerates carrots early on. Some people actually have trouble with the soup itself, but try taking out the carrots first. If you aren’t eating the soup, then you SHOULD try it.
I removed carrots from my diet. Now I was just taking 1 cup of chicken broth 2 or 3 times a day, with or without, the boiled -> broiled chicken piece, which was quite repulsive to eat. Secondly, while in pain, it was much difficult for me to eat or drink anything. On some days I only had chicken broth, with difficulty, twice a day, without any solid. My body rash was getting worse, and I often had to scratch my arms and legs for an hour or so, to get relief.
With passage of time I began to hate chicken broth due to its taste, so was the chicken piece. I had already lost 22 pounds since the start of my illness. My wife put some SCD legal spices in chicken broth in an attempt to improve its taste. She also changed the style of cooking broiled chicken piece that improved its taste and finally I started enjoying the chicken piece. Here is my recipe of chicken broth and chicken piece of the intro diet I was following.
My probiotics arrived on 6 Dec 2013 and I began with half capsule in morning and half capsule in evening. But, that caused me lot of gas and bloating. I heard some strange fuming sounds coming from my abdomen as the food travelled downwards after I took probiotic. I went to the bathroom 20 times that day, mostly due to gas. For next couple of days, I stopped probiotics till 10 Dec after which I took one capsule per day with breakfast and that improved my condition. I learned from internet: http://pecanbread.com/p/probiotics1.html that probiotics should not be taken until about day five on the SCD diet and they may cause diarrhea and gas initially. I found the same information about the supplements (multi-vitamins) that they should not be taken until about five days of SCD diet on this link: http://pecanbread.com/p/Sup1.html.
STILL HAVING PROBLEMS WHILE ON INTRO, SHOULD I TRY NEW FOOD?
There was still something fishy going on, as my bathroom visit frequency was not decreasing. At that point I thought that as now I was only taking chicken soup, and I might be reacting to that (as mentioned in above information box), since the other possibility of carrots causing problem was already eliminated. So, I searched internet to learn more. I found out that if we keep on taking a single food item for longer durations, our body may react to that, and that the food item can even cause us diarrhea and gas. Now my question was when it was the right time to introduce the new food item after the intro diet. I found my answer in the following link which states that a person can introduce new item after 4 to 5 days of remaining on the intro diet regardless that the condition is improved or not: http://scdlifestyle.com/2013/07/introducing-new-foods/. I am puting a small para from the aforementioned link:
Here’s some common signs it’s time to introduce new foods:
- You’ve been on the intro diet for 4 days or longer
- You’ve been on the intro diet for 4 days or longer and diarrhea isn’t completely stopped
- You’ve been eating the same 7 foods for over a month
- You’ve started SCD but your symptoms aren’t completely gone yet
- You’ve started SCD and your symptoms are getting better
- You’re wondering, “Should I introduce another food…”
As you can see, it’s usually a good idea to introduce another food, regardless of what your symptoms are doing. I’ll explain more in a bit, but eating more diverse foods provides better nutrition and is good for the mind, gut flora and social life
My SCD mutlivitamins and calcium finally arrived on 9 Dec 2013 and I immediately started taking them (as I had already crossed 5 days of intro diet). I took 5 tablets of calcium and 3 tablets of multivitamins on daily basis. I learned from an internet source that we need to take at least 1500mg of calcium, when on steroids (prednisone). It is a must dosage to prevent osteoporosis: http://gut.bmj.com/content/46/suppl_1/I1.full. The biggest benefit I had on starting multi-vitamins was that my body rash and itching all disappeared within 24 hours.
INTRODUCTION OF NEW FOOD
On 9th Dec 2013 I introduced the first food item. I had to pick from the family of squashes. (I was not interested at all in fruits, juices, and honey due to high sugar content in those). As a guide, I looked at the stages presented on pecanbread.com: http://pecanbread.com/p/how/stages.html.
I tried different squashes from 9th to 12th Dec, 2013.
My wife made pureed acorn squash. When I tasted that, I was unable to eat much due to its sweet taste. Being from Pakistan, I was used to of fried vegetables with lot of spices, and was not accustomed to eating boiled vegetables without any spices. This created a problem. So she acted upon an advice by my father and intelligently added some SCD legal spices in the boiling water, along with Extra Virgin olive oil. Since, I had completely rejected the acorn squash, she made me Yellow Crookneck squash by following this recipe and I really enjoyed the taste, as I was already starving. I did fine with squash. I guess I did fine because, I stopped taking chicken broth, to which my body was reacting, as I was taking that since long time. The other reason could be the reintroduction of probiotic capsule. The next thing was yellow summer squash (recipe) that I did fine with. She also cooked Zucchini that I tolerated. Then, I took butternet squash (with this recipe), that I enjoyed most due to its taste, and it was also resembling in taste with potatos (I was fond of eating french fries before my illness). I was also taking baked chicken (recipe) along with the squashes.
Alongwith with food, the other supplements I was taking at that time were as follows:
- 1 tab Freeda’s SCD legal multivitamin with food 3 times a day (started on 9th Dec 2013)
- 2 tabs Freeda’s SCD legal calcium+vitamin D in morning, 2 tabs in evening, and 1 tab at night (started on 9th Dec 2013)
- 1 tab (giprohealh SCDophilus 3billion) probiotic capsule in morning with breakfast (properly started at 10 Dec 2013)
- 1 capsule of Omega3 fish oil at morning, and one at night (started at 21st Nov 2013).
I was recovering with new medications and new food. My prayers were answered by Allah Almighty. My bleeding had completely stopped. My diarreha had significantly reduced. There was no more cramping or pain, though still I had to visit bathroom during midnight once or twice. On 13 Dec 2013, I visited my university’s mosque to offer Friday prayer and discovered how weak I had gone, as it was difficult for me to climb the stairs.
FISH, FISH OIL, AND BLEEDING
On 13 Dec 2013 I introduced fish in my diet. I started with baked salmon (recipe) and Cod (recipe). I did fine with both so I continued fish to the next day. I again had fish on 14 Dec 2013. I ate a lot of fish that day, as I was feeling really hungry (perhaps due the effect of steroids), but I felt constipated with hard tummy throughout the day. Before going to the bed, when I went to the bathroom, I saw lot of blood in flush, it was pure red blood!. I got scared, and despite being scared, I had to visit bathroom 3 more times. On second and third visit the blood was even more. But on 4th visit, the blood was a bit lesser. I got really depressed. I thought my colon got damaged again, and now I am back to the square one. I kept on thinking what went wrong until I remembered something. I recalled a small warning written on Omega3 fish oil bottle that if a person is taking any pill for thinning of blood then he/she should not take fish oil, as it reduces the blood coagulation ability. Salmon has lot of oil, and Cod also has oil, and when I took full-fledged capsules of fish oil along with fish, my blood coagulation ability stopped. As the colon still had injuries, due to absence of coagulation the blood started coming out of those injuries, and I got bleeding.
On the morning of 15 Dec 2013, I did not take fish nor the fish oil, as a result the bleeding stopped. Since after then, I quit taking Omega3 fish oil forever.
REPLACING OMEGA 3 FISH OIL WITH OLIVE LEAF EXTRACT
I was taking Omega 3 fish oil, because I studied that it had strong anti-inflammatory properties, but a side effect that caused blood thining. I already had a bad experience with that and did not want to take a second chance. Now the headache for me was what to take in place of Omega 3 fish oil. So I again started search on the internet and found an item known as “Olive Leaf Extract”. I was stunned to read an article about the benefits of olive leaf extract: Unexpected Benefits of Olive Leaf Extract. This aforementioned article is based on a scientific study and clinical trials and shows that Olive Leaf Extract has not only anti-inflammatory properties, but it is also effective against a wide range of diseases, especially the autoimmune response type diseases (see this article and what wikipedia says about olive leaf extract). I further came to know that Olive Leaf Extract is also beneficial against the intestinal parasites and amoebas that normally go untreated with traditional antibiotical treatments, and are not easily detected through stool tests. Moreover, unlike Omega 3 Fish oil, Extra Virgin Olive Oil and Olive Leaf Extract have no side effects (see this link). Here is a story of how Olive Leaf Extract cured somebody’s colitis caused by amoebas: I cured my Ulcerative Colitis. Here is another account of a person who found benefits in using Olive Leaf Extract in his UC : http://www.healingwell.com/community/default.aspx?f=38&m=2295341
Being a Muslim by faith, I read Holy Quran in which Allah Almighty has termed Olive as a “blessed tree”. So I somehow got convinced that I must try Olive Leaf Extract, though I was otherwise very careful in trying new things.
I purchased the olive leaf extract from this link: http://www.drhoffman.com/page.cfm/333 just because it was according to SCD diet I was following. Otherwise, there were lot of other resources as well on the internet. (The one that I took is having 20% Oleuropein and in many other brands, I found that quantity lesser). I got my olive leaf extract on 18 Dec 2013 and after taking 500mg twice daily, my stool got normal, and it is still normal since, as now I am taking olive leaf extract on daily basis. Apart from that, I am using only the Extra Virgin Olive Oil in my all cookings and foods. Following link shows a difference between Extra Virgin Olive Oil and ordinary olive oil: http://curezone.org/cleanse/liver/oliveoil.asp
CREATING A SAFE ZONE OF FOODS
On 16 Dec 2013, I got enough strength to go back to my university (after a gap of 1 month and 8 days). Now as a next task I wanted to create a safe zone of foods. So me and my wife together created an excel sheet and put two columns in that. One of “not tried foods” and the other one of “tried foods”. I am sharing the sheet below. One at a time, we picked a item from not tried, and I tried that. If I was ok, I put that in tried food items. Tried food items was my safe zone of foods. I must mention here that I used to pray a lot from Allah Almighty before trying every new food item. I am pretty much convinced, that it was due to Allah’s blessing that I tolerated the new food items.
|Salmon baked||Spinach||Yellow squash||Salmon|
|2 olives||Salmon||chicken piece||Yellow squash|
|14-Dec-13||Saturday||Salmon baked||x||yellow croockneck squash||Baked Chicken|
|3 olives||x||Salmon + olives||Fish (unknown)|
|15-Dec-13||Sunday||green beans||Squash||tomato cooked||Radish|
|green beans||baked chicken||Onions cooked|
|blended mint||green beans|
|16-Dec-13||Monday||Baked Chicken||baked chicken||eggplant||Mushrooms|
|Squash||butternut squash||Chicken||Qeema (beef)|
|17-Dec-13||Tuesday||Baked Chicken||Baked Chicken||Baked Chicken||spinach|
|18-Dec-13||Wednesday||Qeema (beaf)||Mushrooms||Mushrooms||Yogurt (goat milk)|
|Asian Fish||Mushrooms||Butternut Squash|
|Qeema||Asian Fish||Cod Fish|
|20-Dec-13||Friday||2 Egg omelate||Cod Fish||Salmon|
|21-Dec-13||Saturday||Butterut Squash||Chicken baked||Spinach|
|Chicken baked||chicken baked|
|22-Dec-13||Sunday||Pecanbread||mashroom mix||chicken baked 2|
|spinach||pecan bread||egg plant|
|23-Dec-13||Monday||Chicken baked||eggplant||Butternut Squash|
|Mushroom and bellpepper||Cod Fish+olives||Cod|
It can be observed from above table that I tried egg on 19th Dec 2013 which was more than 20 days after I started first round SCD. The point I want to make here is that, we must give time to our colon to get healed (through steriods, if we are prescribed with medications). Otherwise, if we take tough diet, medicines may also not affect, as the diet would not let injuries to heal.
SOME IMPORTANT POINTS ABOUT SOME FOOD ITEMS
– Olive Fruit (Pickle)
I used Olive Fruit in my every second meal, and it acted as a natural medicine against pain, diarrhea, gas, and blood pressure. Here are some of the advantages, but no side-effects of Olive: (See this link).
Nuts are advanced food to try. I tried nuts bread on 22nd Dec 2013 whereas my SCD started the very first time on 27 Nov 2013 so it is approx a duration of 25 days while on staying on SCD after which I tried nuts. It is recommended to try nuts after one month on SCD, or even later if condition is not improving. However, I am mentioning my own experiences. After I found out that I was doing fine with eggs, I tried nuts bread (in which eggs are ingredients). I learned through internet that pecan nuts are easier to digest. So I got my first SCD bread/cake made from pecan nuts (recipe). After pecan nuts, the next bread I made from walnuts as they were having similarities with pecan. Then, I used blanched and soaked almonds for bread (recipe). As stated on pecanbread.com Cashew nuts contain more starch than other nuts and should be started late. Peanuts is a legume (as are beans) and therefore its consumption should be delayed. I read about coconut that it is high in fiber, so it should also be delayed. On these links, I found comparisons among various types of nuts in terms of fiber and other nutrients: http://lowcarbdiets.about.com/od/carbcounts/a/Carbs-Fats-And-Calories-In-Nuts-And-Seeds.htm and http://www.health-alternatives.com/nut-seed-nutrition-chart.html
– Honey – Pasteurized vs Unpasteurized
As I mentioned in my initial part of story, once I tried a teaspoon of honey and I got diarrhea and bloating/gas. Being a Muslim and reciter of Holy Quran, I knew that Allah Almighty has mentioned the following about honey in Quran:
Your Lord revealed to the bees: “Build dwellings in the mountains and the trees, and also in the structures which men erect. Then eat from every kind of fruit and travel the paths of your Lord, which have been made easy for you to follow.” From inside them comes a drink of various varieties, containing healing for mankind. There is certainly a Sign in that for people who reflect. (Qur’an, 16:69)
I was confused… why honey became problematic for me instead of becoming a blessing? Soon I got answer of query. The honey that Allah Almighty mentions about in Quran is the pure honey,… “unpasteurized, unprocessed, organic honey” to be exact. The honey that we buy from market is “pasteurized honey”, means, the honey is boiled so that it maintain its liquid form. (On room temperature the unpasteurized honey turns into a solid form.) When the honey is boiled, all the healthy bacteria, and natural antibiotics in the honey beneficial for human body are lost. There are certain other enzymes in the unpasteurized honey that eliminate small quantities of sugars present in the honey. So, when honey is boiled, sugar reducing enzymes are also lost, and what we buy from market is a “sugared water”. That “sugared water” when we eat, mostly feeds the bad bacteria in the gut. Here is a paragraph that I found from Elain’s book:
Unpasteurized honey contains virtually no sucrose since an enzyme in the
honey splits whatever sucrose may be present.
There is another problem. In recipe section of Elaine’s book, she uses “cups of honey” as sweetner in many recipes. It is a bit tricky to understand the recommendations about honey in Elaine’s book. At one point she says:
There is a small amount of sucrose (about 1%-3%) in some pasteurized honey but it has been shown to be tolerated by those on the Specific Carbohydrate Diet.
Just imagine, how much “percentage of sucrose” would be in a dish made up from 3 cups of honey. All I want to say is that the sugar intake delays the healing process, so why to keep on feeding the bad bacteria?
And later in the book she says:
Sometimes, but not often, even the absorption of single sugars is disturbed because of severe injury to the absorptive cells, but this extreme condition is usually diagnosed by routine hospital tests. Sometimes, the invasion of microbes into the small intestine is so pervasive that yeast, for example, will be found in the esophagus. When it is suspected that yeast invasion is widespread (the oral infection, thrush, would be an indicator) it is wise to cut back on honey ingestion at the beginning of the dietary regime (amount of honey in recipes should be decreased by at least 75%). The amount of honey may be increased as the condition improves.
After having already experimented with pasteurized honey, I thought to try unpasteurized honey. The question was which brand should I go for. After lot of search I found two brands: (1) Wedderspoon-Manuka-Honey-Active and (2) YS Organic Bee Farms CERTIFIED ORGANIC RAW HONEY Unpasteurized. The first one was most recommended but was also expensive, the second one was having good rating at amazon.com, and was also cheaper. So I decided to go with the second one: I purchased YS Organic honey from Swanson health products, from Fargo, ND, USA.
I was already craving for sugars in those days, so as soon as I came out of shop after buying honey, I took a full tablespoon of honey, and it did not cause any problems. I took honey after more than 20 days being on SCD, and I did not use any sweetner in my initial nut cakes. Now I use a tablespoon of honey in my cakes as sweetner, as well as I often mix a small quantity of honey in my home made yogurt.
At another internet source, I found a review of Elain’s book about the intake of honey and fruits:
The book Breaking the Vicious Cycle by Elaine Gottschall describes her experiences with Drs. Sidney and Merrill Haas, who successfully treated celiac disease with a diet that allowed only specific sugars and starches. The Specific Carbohydrate Diet limits disaccharide or double sugars as well as grains and starch, but allows simple sugars like glucose.
In general, this dietary approach is on the right track, but some carbohydrates potentially contributing to SIBO-related illness are not limited. For example, honey is used extensively in the recipes even though honey has just as much fructose as table sugar (sucrose is made of equal parts glucose and fructose). And the diet allows a large variety of fruits and fruit juices that also contain large quantities of fructose, which is now recognized as a major contributor to the development of SIBO (Small Intestinal Bacterial Overgrowth).
Before the start of SCD, I once tried raw, peeled apple and it caused me diarrhea and bloating. On SCD’s first attempt, I was eating banana in breakfast and it was giving me lot of pain. As fruit juice I tried diluted grape juice and cranberry juice, and both caused me problems. So I stopped taking fruits in any form, whether boiled, peeled, or e.g., in the form of applesauce.
After about 25 days of my second round of SCD, I introduced avacado. I am doing fine with that, as it has minimum sugar, and it is very rich in nutrients (just compare avaocado with apple fruit in google). I am using avocado in my nut cakes, as well as eating it in raw form, with no problems (Al-hamdo Lillah).
Ater 15 days of being on SCD, I thought to introduce yogurt. Of course, I was no more interested in the market available yogurt with “live cultures” as they are not properly fermented, and contain traces of lactose, on which the bad bacteria thrives. Now the question was to go for what type of yogurt: cow or goat? I wanted to be careful so I opted for goat milk yogurt. The reason for such selection was based on reading from different sources that cow and goat milk have a “casein protein” to which certain people might react. However, casein protein is known be in smaller amounts in goat milk as compared to cow milk. Now the next question was what to use as a yogurt starter, as I learned from some sources that we cannot use cow milk’s starter in goat milk. From further search, I found out that www.giprohealth.com sell a yogurt starter that can be used with either of cow or goat milk. I ordered the yogurt starter from this link:http://www.giprohealth.com/giprostart.aspx. So we bought a food thermometer, and my wife tried to make yogurt in oven. First she kept water in a bowl and monitored its temperature for some hours. Based on the experiment, we set the knob of oven at appropriate number, and put goat milk in the oven for yogurt making (after mixing yogurt starter in it). Next morning when we saw, the oven was overheated (120 F +), and this had killed the useful bacteria making yogurt useless. So our experiement failed. After doing some more search, I found out that most of the people are using Yogurt met multi yogurt maker, that I ordered from Amazon, and my yogurt maker arrived on 20 Dec 2013. I have put my experience and procedure of making yogurt from yogurtmet yogurt make on this link. On fermenting yogurt for more than 24 hours at appropriate temperature range (100 to 110 F), my yogurt was formed on 22 Dec 2013. And, I had no problem with that. Later after couple of weeks I also tried cow milk’s yogurt and did fine with that. In texture, the goat milk’s yogurt is more watery/fluid type than cow milk’s yogurt. Taste-wise I liked goat milk’s yogurt. Yogurt is also a source of calcium (especially when a person is taking steroids such has prednison. 1500mg calcium/day is required.
I liked the taste of butternut squash as compared to other squashes I tried. It also gets very soft on cooking, though making it ready for cooking is the hardest job, due to its hard covering. I have re-introduced carrots in small quantities in my food and I am able to tolerate them. I am also eating green beans and spinaches. The recipes of most of the vegetables would be soon updated in recipes section.
SUMMARIZED LIST OF SOURCES FOR SCD LEGAL SUPPLEMENTS
LACTOBACILLUS ACIDOPHILUS (3 billion CFUs.): http://www.giprohealth.com/scdophilusnext.aspx
( I am using 3 billion CFUs one)
LACTOBACILLUS ACIDOPHILUS (10 billion CFUs.): http://www.giprohealth.com/scdophilus10.aspx
– Digestive Enzymes
(I have not tried this so far)
FREEDA SCD Multivitamin: http://www.freedavitamins.com/index.php?p=product&id=367&parent=18
The tablets are quite large in size, so I chew them to avoid throat injury that occurred to me occurred once.
– Calcium + Vitamin D
– Yogurt Starter
– Olive Leaf Extract
(2) YS Organic Bee Farms CERTIFIED ORGANIC RAW HONEY Unpasteurized.
ROTATING FOOD ITEMS
After my “safe zone” of foods was created, I made a schedule to rotate the different food items that I was eating. It was important to rotate food items as if a person is eating a single food item for many days, then the person might get allergic to that item. I read multiple ways of food rotation on internet and easily got confused. Some procedures were conflicting with others. However, the main point that I understood after discussing with my father was that, on eating an item, one should not eat the same item for 3 days, i.e., there should be a gap of at least three days before that item is tried again. However, cooking is not an easier task. So in my rotation chart, I tried to consume one item for 2 days, then put a gap of three days (recipes of the items in sheet would be made available sooner):
|Monday||spinach||spinach||Green beans cooked with masala|
|2 Egg omelet||Chicken baked||trout baked|
|ALMOND & Pecan BREAD||Avocado||Butternut Squash|
|Green Beans with cheese||Green beans cooked with masala,
tomato n cheese
|Tuesday||Grilled goat meat||beef grilled||Salmon + olives|
|Almond avocado honey bread||bread||Egg plant cheese|
|Wednesday||beef grilled||beef grilled||beef soup|
|Avocado, Avocado, and honey bread||Mushroom with cheese||Egg plant + bell pepper cheese|
|zucchinis (Mexican + us)||bread and yogurt lassi||yellow crookneck|
|Thursday||Baked Chicken 1||Baked Chicken 1||Baked Chicken 2|
|1 egg omelet||Egg plant with cheese||water cress spinach|
|Bread of almond + honey||yellow crookneck|
|Friday||Baked Chicken 1||AVOCADO||WATER CRESS WITH mushroom|
|Olive||Chicken baked||Baked Chicken 1|
|water cress or regular Spinach||bell pepper with tomato and carrots shrimps||bell pepper with tomato and carrots shrimps|
|Saturday||Scrambled egg||Cod Fish||green beans, peas, carrots mix|
|COD / salmon BAKED||avocado||Butternut Squash|
|Olive||green beans, peas, carrots mix||trout baked|
|Bread of almond + honey+avocado|
|Sunday||2 Egg omelet||Shrimp mix||spinach|
|Olive||Butternut Squash||Butternut Squash|
|green beans, peas, carrots mix||Avocado||chicken baked|
HOW I STARTED GAINING WEIGHT
When I was a healthy person before having ulcerative colitis, my body weight used to be 147 lbs (~67Kg). When I got sick, I lost 22 lbs in one month, and came down to 125 lbs (~57 Kg). I was losing weight even when I started SCD. However, after I felt like I got some healing, I started looking on the internet as how to increase my weight by staying within the parameters of SCD. I was desperate to increase my weight as the outside temperate was below -22 degrees celcius, and I needed fats to stay protected from cold. After some search, I found a nice article on scdlifestyle.com: 5 Easy Ways to Add Calories to the Specific Carbohydrate Diet. On reading this article, I increased the usage of butter (blue bonnet), cheese (dry curd cottage cheese, and mild cheddar cheese), and olives in my each meal. Also I used baked chicken without removing skin. In fruits, I used avocado, due to its high nutritional values, and fats, and least sugar most importantly. I eat avocado in raw form, as well as in my cakes. The results of using aforementioned items were good. I also got a weighing machine to monitor my progress every day or two. My weight is increased and I have reached 141 lbs (64 Kgs).
THE OTHER ITEMS THAT I DID NOT TRY
During my online searching, I read various accounts of people suffering from ulcerative colitis and Crohn’s disease, and found out a small number of items that some people have also used for colitis. Especially, I found out a forum named: www.healingwell.com where the people are very cooperative and responsive, and try to help in different queries, about a large number of diseases, including ulcerative colitis and Crohn’s disease. I also found some items most frequently discussed on this forum. A few such items were:
– Slippery Elm Bark Powder
I read various accounts about this item. Some people suggested it, some people said they did not get any benefit using it. What I read about this item was that it puts a layer of mucus on intestinal walls, that help intestines in repairing. However, what I learned from Elaine’s book was that mucus on intestinal walls also hampers the absorbtion of food items into blood stream. This made me cautious. Since, I was taking, and still taking, the medications along with SCD diet, I did not want the medicines’ malabsorption. Therefore, I did not try Slippery Elm Bark Powder.
On basis of my search, I found mixed opinions about L-Glutamine. There was a point when I was about to get it. Then, after going through some archived emails of the yahoo group BTVC-SCD (having 4500+) I found out that there were more negative opinions of people than positive opinions about L-Glutamine. I cannot give any solid opinion about L-Glutamine. Or, may be I wanted to go for something about which majority had positive opinions.
– Saccharomyces boulardii (S. boulardii)
I read the same about this item that it may work for some people and may not work for others. I did not have a requirement to try this probiotic as I was doing fine with the ones that I was taking. However, I saw some people suggesting that a person can try this if the other probiotics do not work. I guess the real results would start coming out after 2 or 3 days of usage, as happened in my case, when I started using probiotics.
– Psyllium husk powder
This has been a traditional natural medicine back home in my country whenever someone had stomach issues. We used to have it with yogurt in bad stomach days. However, one thing we need to understand here is that there is “difference” between stomach upset and colon ulcering. An item may be easily tolerated by the stomach, but may not be tolerated by the colon or small intestine. In fact, I ordered both psyllium husk powder, and psyllium seed powder during the onset of my condition. But, I had to return both packages, after I learned Psylium husk powder contains fair amount of fiber which is not good for an injured colon.
SOME LAST WORDS TO SAY
My journey is not over yet. It just started. It is 1 step forward and 3 steps backward process. Sometimes 5 steps forward, 2 steps backward. Whatever I wrote above was the initial portion of my journey. It is the fight that every one with ulcerative colitis to carry on. I am also trying to fight. We have to live with it,,, as some doctors say, it is a life long disease. But, I am a believer in Allah Almighty who created the seven universes. I know there is someone Who is helping me, Who is guiding me, Who is teaching me, Who is telling me the way that is right one to be followed, and guiding me about which way should be avoided. I know Allah Almighty is with me. He listens to my prayers. It is no less than his utmost blessings upon me that when I was creating the “safe zones of foods”, I used to pray Him a lot before eating the new food, and Allah made it much easier for me, and has blessed me again with a variety of food items to eat. With His blessings I am in remission. There was also a time when I was lost and hopeless, in the middle of an ocean, filled with sharks. I would conclude with an email that was forwarded to me by one of my uncles with a title: “Everyone carries a burden. It only matters how one carries it.”.
November 11, 2013
In moments like these I turn to Quran. There I found certain principles about our burdens. Firstly, Quran tells us that Allah charges no soul but to its capacity (2:286). Thus, every burden that we carry whether it is physical or mental, it is within our capacities. A burden then essentially is a challenge like the weights in a gym which when faced day after day become a source for strengthening our physical muscles to the extent that the same or similar weight in life when faced elsewhere is not a burden anymore. Essentially, such a burden that does not break us is a blessing, which only makes us stronger with passage of time, both physically and mentally. It is to this natural lightening of burden that Quran thus speaks of Allâh desires that He should lighten (the burden of bindings on) you, for a human being has been created weak (4:28) initially and once that person is exposed to a burden, that person only become stronger with patience and perseverance. Subsequently, the burden is not heavy anymore because the capacity of that person has increased. This is how they train Special Forces for missions that ordinary people cannot even imagine. It was the burdens that the Holy Prophet endured which in the long run made him the most successful person ever in human history.
Secondly, the burdens that we carry in our minds and our lives can be relieved if we follow the dictates of Quran and tread the footsteps of the Holy Prophet – `Those who follow this perfect Messenger, the Arab Prophet whom they find described in the Torah and the Evangel which are with them, who enjoins upon them that which is right and forbids them that which is wrong, and who makes lawful for them all the pure and good things, and makes unlawful all the impure and bad things, and who relieves them of their heavy burden and shackles that weigh them down. Indeed those who believe in him and honour him and serve him and follow the light that has been sent down with him, it is these who will attain their goal.’ (7: 157)
Thirdly, whenever one undertakes a lofty mission for the wellbeing of humanity then assuredly Allah provides helpers who share the burden of that effort. It is the promise of Allah that we see in the example of Moses – And We gave Moses the Scripture and made with him his brother Aaron a sharer of (his) burden (25:36).
Fourth, if a given burden seems heavy at that moment then we must pray – `Our Lord! take us not to task if we forget or (if) we make a mistake. Our Lord! lay not upon us the burden (of disobedience) as You laid upon those before us. Our Lord! charge us not with the responsibility which we have not the strength to bear; therefore overlook our faults and grant us protection and have mercy on us. You are our Master, therefore help us against the disbelieving people (who do not believe in these laws of yours).’ (2:286)
Fifth, no burden is permanent because Quran guarantees so – So surely every hardship is followed by ease. Yes, every hardship shall be followed by an ease (94:5-6).
Sixth, every struggle to carry a burden is guaranteed a reward because every burden is a test which opens up our heart to newer ideas and inspirations – Have We not opened, expanded (and illuminated) for you your heart, And (have We not) relieved you of your burden, Which had weighed your back down? And have (We not) exalted for you your name and given you fame? (94:1-4)
The above are some of insights about everyone’s burden that come to light in Quran. May Allah increase our capacities and provide means to overcome our burdens. May Allah reward Everyone who carries and endures a burden. It only matters how one carries it with dignity and honor with Allah’s help. Amen!
It is my prayer from the depth of my heart that may Allah give us right direction to follow, give us faith, and bless us with the best health so that we can serve the mankind. (Aamen)
You have done a really really great research and I love the findings.