Hello dear band of brothers in this UC/CD war, I am a 24 female from China, got my statistics master degree in U of Minnesota, MN and worked at Tampa, FL.
If you have UC, what symptoms do you have currently?
cramping and urgency before BM
Can not gain weight
fatigue, especially after lunch to night
low platelet,muscle cramping
random abdominal pain here and there after meals
loose stool or really bulky constipation-like stool
To begin with, I am not a very healthy person persee. I was sick a lot when I was young and had a lot of stomach problems. But I began to suffer from these extremely bad health conditions ever since I came to America… I do not mean to offend you at all, but I think lacking of knowledge about the food industry here in the U.S. made me really test the bitterness of bad diet.
I have endometriosis (another autoimmune diseas) and a very sensitive stomach, both problems greatly agrreavated ever since I came to the U.S. and eat with my American host families… I started to have frequent bowl movements and loose stools late last year, and my weight began to really drop a lot! I weigh about 88 pounds now and I’m 5’1”. My BMI can not even be found on a normal reference graph… The weight I lost due to constant cramping and BM and occasional bleeding made me lose 15% of my weight! I can’t believe it.
I have seen so many doctors ever since I had endometriosis, both Chinese and American. I have to say American doctors are so difficult to communicate with when you are a patient. I don’t understand why I wait over 1 hour for them while they seem me for less than 10 mins. Anyway, all my experience with them are endless blood tests and medicine prescription: rounds of rounds of antibiotics, anti-acid drugs, birth-control pills…. I had enough to a point I do NOT dare to see them, and I do NOT want to see them anymore. It’s like they treat all side effects as NOTHING, which is the most annoying part. That’s generally the same when we help them to analyze the drug effect during clinical trials: they care a lot more about drug effect than toxicity. The toxicities data are usually much less followed-up and recorded. Of course I learned from the aspect of public health, sacrificing some people’s benefits by ignoring their toxicities meet the government and industry’s needs, because the drugs do help to some extent, for some people.
Since I had enough with all the drugs and surgery with my first “autoimmune” disease–endometriosis, I determined not to use drugs for my UC/CD from the doctors unless I know they are really good with minor effects or unless I am going to die. So I have been arrogantly, like the doctors, not using any drugs, despite of my very bad crampings/loose stool/diarrhea/constipation with diarrhea/significant weight loss…
I had a very hard time with my husband (the only family member in U.S.) and friends, since they could never understand my feelings and kept saying “go to the doctors and you will be better”. Sometime I had this mental problem that I doubt I will develop serious psychological problems by being so distant to others and depressed. I prayed a lot to Lord, and my sisters kept praying for me. But I do not behave well. I got so easily disappointed and depressed, cried a lot when alone, complaint even more about my valuable full-time job which supports me and my husband. I think Lord made this journey long enough for me to realize how many problems I have with myself beside my disease. Frankly, I almost never found someone who became this sick without being overly under pressure. I think Lord is really using this to change me and not to be a very extreme person in anything, and try to accept everyone’s idea and love, even if they are not the kind that I am expecting or needing. I wrote this just to let everyone who suffered enough (We know better what each one has gone through than our families) know that Lord never discards us once when we have faith. I have not been behaving well but he faithfully lead me to people who overcame their UC problems with their faith. I think we all need a very good attitude, a victorious attitude for this disease mentally before we beat it physically.
Now to my current situations:
I use probiotics, tried 3 different brand, and they helped a bit, and I experimented with my diet several times (with endometriosis, I can’t have any diary, red meat according to endo-diet), and it’s very difficult. I lost a couple of pounds very quickly everytime I tried one new diet. So far, I have been doing OK on ‘soft’ veges+non-red meat+yogurt+fruits+ RICE! I have to eat rice to keep my weight. But I try to soak the rice before cooking them since there are people saying something in the grains has the effect of deprive your body minerals… I cook rice porridge with a high pressure cooker. I hardly grill my veges/meat. I almost always try to steam them or boil them.
At the time of seeing a good sign on my diet, I really want to discuss with your folks about the long-term problems we might have for SCD or whatever diet and the health products:
1. Don’t you think the SCD diet has something needs to be improved? For some reason, I don’t totally agree with the theory Elain proposed, since I know from my biotech degree that fat and protein essentially break down or transform into carbohydrate when you don’t have enough carbs, and fat does have long chain carbs in their structure.. I also doubt why I seem to have problems with bananas and grapes. Could this actually be a fungi infection? Because carbohydrate feed the yeast so well and especially bread?
2. Do American health products like probiotics/herb supplement/vitamins and so on get tested for chemical (e.g.heavy metal )poisoning? I started to realize this problem when I chat with a doctor (not as a patient but a statistician) today. I think it could be a long term problem once we just see someone has a good effect on aloe vera juice or fish oil or turmeric and start to buy them from health store. In the long term, it may be very bad if they have chemical contaminants.
3. For those who have success with SCD, do you still do bad once you introduce rice/fruits/other carbs?
4.For me, I have never do well on eating porks/beef when I have GI problems, and this strict SCD diet make me feel so limited in the food. I also have a lot of problems when I have pumpkins and some other SCD legal food. I remember Adam says it takes not long for our gut to heal once we find out a way not to irrigate it, but why the SCD takes so long?
I wish everyone the best in their life and let’s learn to enjoy the valuable part of life even when we are very sick. I heard someone saying life is like taking photos, you skip the bad part and focus on the valuable moments.
God bless you all,
Where I’d like to be in 1 year:
Gain 10 more pounds in a healthy and natural way(although that’s still underweight for me I feel satisfied enough to have more weight)
energy level goes to normal and I can exercise, not just walk!
Become a really optimistic person without so much fear for life, and would be able to help others and enjoy other’s love
probiotics: garden of life
vitamin B complex
written by Ann
submitted in the colitis venting area