Living with SIBO and IBS

A daily nightmare

December 4, 2019

I have been suffering from debilitating SIBO, IBS and Leaky Gut for over 3 years. I am unable to work, in chronic pain, and have been on the verge of suicide several times as a result. In 2019, I was taken to emergency 3 times due to an IBS crisis and, just before Christmas, I was hospitalized a 4th time due to the associated severe depression and dark thoughts from living with SIBO and IBS. I continue to suffer daily. I’ve tested positive for both types of SIBO (Hydrogen and Methane), yeast overgrowth (candida), bad bacteria, and parasites.

It's March 5th, 2020, and, after finding one of the few doctors in Quebec who performs them, I'm currently waiting on an FMT (Fecal Microbiota Transplant) with the hopes of resetting my microbiome with that of a healthy person's which should "cure" me of this dreadful disorder. I'll post an update as soon as I have done the transplant.

So what is SIBO exactly?

ANSWER: Small intestinal bacterial overgrowth (SIBO) is a serious condition affecting the small intestine. It occurs when bacteria that normally grow in other parts of the gut start growing in the small intestine. That causes pain and diarrhea. It can also lead to malnutrition as the bacteria start to use up the body’s nutrients. SIBO symptoms mainly affect the gut. They may include:

  • pain in the stomach, especially after eating
  • bloating
  • cramps
  • diarrhea
  • constipation
  • indigestion
  • the regular feeling of fullness
  • gas

What is IBS?

ANSWER: Irritable bowel syndrome (IBS) is a disorder affecting the intestine. IBS involves problems with motility (movement of digested food through the intestines) and sensitivity (how the brain interprets signals from the intestinal nerves), leading to abdominal pain, changes in bowel patterns and other symptoms. Although often disruptive, debilitating and embarrassing, it may be some comfort to know that IBS is not life-threatening, nor does it lead to cancer or other more serious illnesses. 

Canada has one of the highest rates of IBS in the world, estimated 18% vs 11% globally  (Lovell et al. 2012). However, it is thought that IBS often remains underdiagnosed. More than 70% indicate that their symptoms interfere with everyday life and 46% report missing work or school due to IBS. (Gastrointestinal Society 2016).

People with IBS frequently report feeling depressed, embarrassed and self-conscious. Their inability to predict symptoms places a significant burden on daily living. IBS limits productivity and performance at work has a negative effect on the quality of relationships and limits participation in routine social activity (Gastrointestinal Society 2018).

IBS also has a personal financial burden with individuals sometimes trying multiple over-the-counter (OTC) treatments and alternative therapies in their quest to be symptom-free; costs can be significant due to the lack of information about the effectiveness of these purported remedies (Gastrointestinal Society 2018).

The underlying cause of IBS is still unclear and there are no diagnostic disease markers for IBS. Guidelines recommend doctors make a positive diagnosis using criteria that are based on a person’s symptoms.

The human digestive system

What is IBS-C?

Irritable Bowel Syndrome with constipation also referred to as IBS-C, is a distressing condition that can significantly affect the quality of life of those affected.

Constipation occurs when digested food moves slowly through the digestive tract. As a result, stool remains in the large intestines for prolonged periods of time where the intestines remove excess water causing stool to become hard, dry, lumpy and difficult to pass.

What is IBS-D?

Irritable Bowel Syndrome with diarrhea is IBS with diarrhea as the primary symptom also referred to as IBS-D.

People with IBS-D experience frequent abdominal pain and watery bowel movements, and, on occasion, loss of bowel control. In fact, approximately 1 out of every 3 people with IBS-D have a loss of bowel control or soiling. This has a strong, negative impact on day-to-day life, however, these and other symptoms of IBS-D can be managed.

And what exactly is Leaky Gut?

ANSWER:  Inside our bellies, we have an extensive intestinal lining covering more than 4,000 square feet of surface area. When working properly, it forms a tight barrier that controls what gets absorbed into the bloodstream. An unhealthy gut lining may have large cracks or holes, allowing partially digested food, toxins, and bugs to penetrate the tissues beneath it. This may trigger inflammation and changes in the gut flora (normal bacteria) that could lead to problems within the digestive tract and beyond. The research world is booming today with studies showing that modifications in the intestinal bacteria and inflammation may play a role in the development of several common chronic diseases.

Who gets a leaky gut (and why)?

We all have some degree of leaky gut, as this barrier is not completely impenetrable (and isn’t supposed to be!). Some of us may have a genetic predisposition and may be more sensitive to changes in the digestive system, but our DNA is not the only one to blame. Modern life may actually be the main driver of gut inflammation. There is emerging evidence that the standard American diet, which is low in fiber and high in sugar and saturated fats, may initiate this process. Heavy alcohol use and stress also seem to disrupt this balance.

We already know that increased intestinal permeability plays a role in certain gastrointestinal conditions such as celiac disease, Crohn’s disease, and irritable bowel syndrome. The biggest question is whether or not a leaky gut may cause problems elsewhere in the body. Some studies show that leaky gut may be associated with other autoimmune diseases (lupus, type 1 diabetes, multiple sclerosis), chronic fatigue syndrome, fibromyalgia, arthritis, allergies, asthma, acne, obesity, and even mental illness.

Man sitting on the toilet doubled over in pain

Below is the letter that my wife and I penned to the FMT doctor out of sheer desperation

I have been suffering from debilitating SIBO, IBS and Leaky Gut for over 3 years. I am unable to work, in chronic pain, and have been on the verge of suicide several times. In 2019, I was taken to emergency 3 times due to an IBS crisis and the associated severe depression. But I continue to suffer on a daily basis. I’ve tested positive for both types of SIBO (Hydrogen and Methane), yeast overgrowth (candida), bad bacteria, and parasites.

I’ve also been suffering from chronic degenerative auto-immune diseases for over 25 years (Spondyloarthritis). I have had many surgeries because of my arthritis, i.e.: I’ve been through three hip replacements, I have a screw in my left foot to fuse a joint, and 10 screws and 2 rods in my neck to fuse a herniated disc from a recent surgery I had done in March of 2019. I also suffer from several other conditions, including Addison’s Disease, Cushing's Syndrome, Sjôgren’s Syndrome, Hypothyroidism, and Eosinophilic Bronchitis. I am VERY sick.

My wife and I are on the verge of bankruptcy and have been for several years. Due to my poor health, I have been unable to continue regularly working from home as a graphic designer. I take many medications, some of which are not covered by the government insurance plan, and, despite my condition, I’m not eligible for disability. We also do not have private insurance—I do not qualify for that either. The IBS is so bad, that I’ve been forced into doing daily enemas (sometime twice a day) for over 2 years now. This takes up an enormous amount of time and energy, which means that I have to lay down and rest for an hour or two each day following the treatments. My wife’s health is starting to be affected, as she is struggling to earn enough money to keep us afloat, although it’s not enough. She is also the only person taking care of me, which means she has to miss work sometimes if I am in a crisis, need to be driven to the hospital, or to an important doctor’s appointment. We are alone. It’s just the two of us. We have no network of people to help. She has also spent many hours researching how to end this nightmare.

Daily enemas!

We are DESPERATE.  We are hoping that you can treat me. So many people now are being helped with this treatment. I CANNOT go on this way. Please help me. My life has been completely hijacked by this. My wife and I believe that I would be a viable candidate because of all my conditions, i.e., IBS, SIBO, Chronic Depression, and Auto-immune diseases. My doctors, i.e.: Endocrinologist and Rheumatologist BOTH support the idea of doing an FMT, as does my Naturopathic doctor. My research has found that when the microbiome is corrected, most of these above-mentioned conditions go away. I should mention that many of these conditions only appeared AFTER my gut started to go haywire 3 years ago. More recently, I have started breaking down regularly with chronic anxiety and panic attacks that paralyze me completely. I awaken trembling and unable to get out of bed. These episodes are extremely difficult and are becoming more and more frequent. My gut-brain axis is under siege from the dysbiotic gut flora. I’m falling apart mentally and physically.

Depression feels like a rainly day inside your brain

My rheumatologist referred me to an infectious disease specialist whom I met on July 23rd at the Glenn hospital. It was through him that I first heard about you. He mentioned your name when we discussed the idea of me doing an FMT.

We have already reached out to several other doctors across Canada, who are using FMTs to treat C. Diff. and IBD. However, no one has responded to our emails or returned our calls. I found a private clinic in British Columbia, www.taymount.com, that offers FMTs for patients with IBS and many other conditions. People are being helped and relieved of many of their symptoms. The treatment costs almost $10,000, not including travel and accommodation costs. We simply cannot afford this and I cannot travel.

This is why we are reaching out to you.

You may be our only hope. Please help us.

Sincerely, Patrick and Sherrie




Comments


  • Be the first to leave a comment!
Add a Comment
Your email address will not be displayed or shared.