What is IBS and IBD you ask? Well, it's what I've dealt with all my life and I'm guessing a lot of you reading this now have too. For those of you fortunate not to know what these letters stand for let me explain. Irritable Bowel Syndrome (IBS) and Irritable Bowel Disease (IBD) are often used interchangeably, both refer to an inflamed digestive system as it pertains to the intestines, both small and large.
Doctors have told me for years I had this issue, along with occasional diverticulitis spells. IBS/IBD spells are usually refered to as "flares". The symptoms are typically gas, bloating, diarrhea and/or constipation and sometimes nausea and vomiting. Let's just say, it isn't fun and living with it is no picnic and yet this is what the doctors will tell you after they've run every test they can and tell you nothing is wrong, it's all in your head or give you the life long sentence of IBS or IBD. The saddest part is being told that there isn't any cure or the only option is a colostomy or an ileostomy (pouches surgically placed to allow the intestines to empty outside the body).
In the fall of 2017, my bowel ruptured, my heart went out of rhythm and if it weren't for my pacemaker/defibrillator I would not be here today. I spent three weeks in the hospital fighting for my life. Two of those weeks were spent intubated in ICU with more IVs than you could count running into me. I was being fed with a nasogastric tube and I was in a constant drugged state on Fentanyl. I remember waking once and seeing my arms and legs three times their normal size. I was septic and it was touch and go on my chance of survival. Three surgeries later I was discharged from the hospital. I now had not one, but two ostomies to live with for the next five months.
The sad part of this story is if the doctors had listened to me in the ER (before they drugged me) they would have known to look in the area of my appendix. I had communicated that I thought my appendix had ruptured. I could feel the pain, I knew where to look. The doctors did an exploratory surgery cutting me down the midline and proceded with the colostomy. Only later when my blood work and panels showed I was dying did they open me up again and do an ileostomy. I did NOT need both ostomies. Yes, I needed 12” of my lower instestines removed but not a colostomy bag. Again, the doctors patched me up but at what cost? You should see the scars, it’s not pretty.
I had to learn to walk again and I had lost a lot of my hair and close to 50 pounds. I was skin and bones and weak, but I was determined. I was told by nutritionists to gain back the weight I should eat protein and carbs. Oh, how wrong they were. I wish I knew then what I know now. Time to move on and heal, once and for all.
I'm sharing my experiences in the hopes that some of the information I share will help you in your healing journey or inspire you to try something new. I learned the body heals itself but it needs support and grace. Give yourself latitude as you venture forth. Life is full of pitfalls and healing with IBS and IBD is full of those slippery slopes. Well, let's get started.
Nutrition for IBD (Crohn's and Colitis)
Where did it start?
In my last post I mentioned the A1 vs. A2 milk and how the protein, casein is different between the two types. The A1 milk has histidine instead of proline in the 67th position on the amino acid chain of the casein protein. Breast milk has proline and not histidine at this position. A2 milk also has proline, just like breast milk but not A1 milk. Could this be why so many people are intolerant to dairy, could this be a key to autism and why consumers are requesting A2 milk. The demand is there. The University of Aukland did a study on lactose intolerance and A2 milk to figure this out.
A1 milk with histidine (which converts to histamine) is difficult to digest and can cause irritation in the digestive system, along with gas and bloating. Some babies are unable to digest milk in the first few weeks of life and develop a condition called pyloric stenosis and requires surgery. Pyloric spasm is the same physiology to a lesser degree and can be treated without surgery. The muscle in the pyloric sphincter normally contracts and expands letting the contents of the stomach to move further down in the digestion and into the duodenum of the small intestines. The pyloric sphincter is a muscle which can spasm and can eventually, if not treated, lead to a blockage or stenosis. Babies with a milder form of gastric upset get labelled "colicky" and are gassy after feeding.
Surgery, antibiotics and for me even a blood transfusion was necessary as well as the IVs. They shaved my fire engine red hair on either side of my head to infuse these cocktails. That was the standard way in the mid 1950s when treating an infant. Needless to say I sported the first mohawk and with red hair no less. I was 8 weeks old, and on Friday the 13th I had a surgery that saved my life. I had survived somehow for six weeks without being able to eat or digest anything past the stomach. I was literally starving to death. My uncle, an undertaker told my parents I looked worse than the dead babies he prepared for burial. I was expected to die but God had other plans for me.
Before the 1980's infants under the age of 2 were not given anesthesia for surgery. The reasoning was that infants didn't feel pain. Nothing could be further from the truth. It was by the grace of God that I survived that surgery as weak as I was.
Leaky Gut
Proline what is it and why do we need it? This was the nagging question I had after I learned about A2 milk and the missing proline. Why did it matter and what was I missing? This was what this inquiring mind wanted to know. The next question would ultimately be, can I get this in my diet? Here's what I learned.
The human gut is colonized by a wide diversity of microbes, representing highly evolved synergistic relationships that provide essential biological functions to the host. The development of the gut microbiome in early life is influenced by lifestyle factors, social interactions, environmental exposures and diet. Nutritional strategies to support microbiome development may complement the existing treatment of Cow’s Milk Protein Allergy. — Nestle Nutrition Institute
2020 Nestle Nutrition Institute | The Gut Microbiome and its Role in Early Immune Development and Allergies - Webinar playlist
The playlist contains a number of lectures that are very interesting regarding the microbiome in infants and the differences between breast milk and formula. See how the Bifidobacteria (red line) starts dropping after the first week of life and continues to drop whereas the breast fed baby the Bifidobacteria cultures are much higher in number and continue growing as the baby does. These bacteria are so important for the baby's digestion and assimilation of vitamins.
Combined with the information about the A1 and A2 cow's milk differences from my last post and I've got the pieces to the puzzle.
The Take Away
The first and second week the Bifidus in the gut starts to decline in the formula fed babies. This would explain why I first started getting sick on my 15th day in this world. The beneficial bacteria which helped digest the milk in the first two weeks were decreasing in numbers due to the natural immunity at birth dropping off. These bacteria must play a role in breaking down histamine in the gut and would explain why some people (like me) have histamine issues all of their life.
The chances of getting A2 milk (with histamine) are like playing Russian Roulette with your digestion and this didn't stop when I no longer drank the formula. That being said, formula is not equal to breast milk and I'm seeing the pattern for food intolerance, gut issues and why chronic illness is so prolific these days.
Why does all this matter?
Chronic disease? It all starts in the gut. I'm working on healing my life long struggle with IBS (Irritable Bowel Syndrome). I've tried a lot of different "healing diets" but none of them worked. In fact I felt much worse and I didn't know why. I felt so defeated. Not all the foods recommended are good for everyone. Bone broth and fermented foods nearly sent me over the edge due to histamine intolerance. I'll tell you more later.
I'm encouraged by your continuing your writing journey, Diane! Keep up the good work.
Although (as mentioned to you several times) my troubles have not been like yours, like me you have been motivated to dig and delve into your complex story and we have each learnt so much that we want to share.
In this post you have briefly mentioned again the circumstances around your and my harrowing pyloric stenosis surgery, probably without any or enough pain relief. I'm glad for you that unlike me you were able to learn some of the core details. We can only wonder and guess how much that has fed into the challenges we've had. I'm glad that your, my, and others' explorations are at last being published, and we are of course keen for this to continue. We have become increasingly aware that there will be countless others born before the 1990s who will have been privately and to them mysteriously affected by the mantras of the medical world.