Please Help Georgie Get Better

Dearest friends and family,

Many of you know that I’ve been very sick for the past 4 years, and many of you don’t. Those closest to me know the severity of the suffering I’ve been going through, but others really haven’t seen or heard much of me, and I apologize for that… It’s just that being constantly sick and in pain has a tendency to make people isolate themselves. Also, I find it difficult to talk about, as it can be embarrassing and even disheartening at times. Some people don’t seem to believe me, because although I’m skin and bones, malnourished, pale, and have only half of the blood in me that my body requires-- my face looks okay! How could I possibly be suffering or on the brink of death? I feel quite vulnerable reaching out, as I’ve never been one to feel comfortable asking for or accepting help since I don’t like to burden anyone, but I am in the most desperate place of my life now financially, physically and emotionally… so I am taking that risk. Please help me?

Just so you know what’s going on, here is the briefest version of my story that I can manage without taking up too much of your time:

In my early 20’s I had a urinary tract infection that developed into interstitial cystitis (a chronic inflammation of the bladder) for which I was treated with long term antibiotics for 5 + years, which helped me to eventually get rid of it. However, the antibiotics took a toll on my gut flora and shortly thereafter I developed an autoimmune disorder called Ulcerative Colitis, which is a type of Inflammatory Bowel Disease. This disease can range from mild, moderate, to severe. I happen to be the severe case, where anything I eat comes right out of me (diarrhea 10+ times a day) and since my whole colon is ulcerated, each bowel movement results in a toilet bowl full of blood. Therefore, I am always very anemic, with hemoglobin levels ranging around 7 or 8, or if I’m lucky, a 9 (healthy levels range from 12 to 16).

I went from weighing a healthy 130 lbs to averaging 84 to 95 lbs. I’ve been in and out of hospitals for weeks on end requiring IV’s for blood transfusions, antibiotics, hydration, and iron infusions. As a result of this, over half of my veins are dead. I’ve been so anemic that even standing for a minute or two at a time made me feel like I was going to have a heart attack. I can’t sleep for more than an hour at a time (or less) because I have to get up to use the bathroom all throughout the night. I lost continence over my ability to hold my bowel movements so I have had many embarrassing accidents in public, and have had to become dependent on painkillers to slow down bowel transit so I can get from one doctor’s appointment to another with a least likely chance of making a mess. But painkillers also make me loopy, impatient, and tired, so I hate to take them. I have fear of leaving the house in case there is no bathroom nearby. I fear what foods to eat that may or may not cause me problems. I have become disabled and unable to work for the past two years. I have gone into serious debt over medical bills including those not covered by insurance like naturopaths, homeopaths, hundreds of supplements, and falling into the traps of expensive miracle cures that prey on the desperate and chronically ill…

Being unable to care for my first and only baby has probably been the most depressing thing I have ever experienced in my life, even more-so than the rapid physical changes I have gone through. While my fiancé is at work my parents watch Henry, and even though they love him and enjoy caring for him it has been very tough for them as they both are afflicted by health problems too. My dad had open heart surgery last November, and my mom had a small stroke this spring - so in addition to the guilt I feel for being unable to care for my own child, I also feel horrible that my parents are watching him at this critical time in their lives. My fiancé and I would get childcare, but we don’t have the money.

I have been on disability and unable to work for the past 2 years. Within these four years of becoming ill though, I’ve had some good weeks, and even went into remission (no symptoms) for 4 months when I got pregnant 3 years ago. I happily went back to work, but in my 3rd trimester I lost 30 lbs from going to the bathroom so much, and required blood transfusions and hospitalization while 9 months pregnant. Eventually the day came when - after 28 hours of labor - I gave birth to a healthy little boy, but my health continued to steadily decline. Within a month of my pregnancy I was in the hospital for several weeks, unable to care for my baby and unable to breast feed… 2 months after giving birth, I became bedridden and contracted a deadly bacterial infection called C-difficile. This bacterial infection is very serious, and kills 15,000 people in the US a year. My parents have been taking care of my baby pretty much full time since then. I suffered with C-difficile for 6 months and eventually was able to get it under control with an antibiotic called vancomycin, but I now I have it again, and for the past several months no amount of antibiotics seem to be helping… C-difficile really ups the level of IBD-- instead of 10+ bowel movements, it’s just under 30 times a day. Not only that, but the pain is unbearable. Since my first bout of C-difficile, I don’t know what happened, but anything I eat causes me to bloat - looking 7 to 8 months pregnant… which is depressing and uncomfortable to say the least. I’ve also developed some sort of motility disorder from the effects of the C-diff toxins damaging and further inflaming my intestines…

Adding complexity to my treatment, I recently just found out that I have a genetic mutation that doesn’t allow me to metabolize and/or detox the medications they make for my disease fast enough. This results in the drugs making me more sick, toxic, and ridden with unwanted side effects. I’ve had anaphylactic reactions to drugs, lost 2/3rds of my hair (most of it grew back), my sense of smell (for several months), got cystic acne which left many scars, loss of oil production, arthritis, an inflamed sac around my heart, overly rapid heart rate, nausea, vomiting, inability to breath... just to name a few. These drugs included mesalamine pills, enemas, suppositories, biologique drug infusions like Remicade, all sorts of immune suppressing steroids, and dozens of antibiotics, and antifungals. I’m probably forgetting a few. Also, I’ve tried probiotics, special diets (SCD diet, GAPS diet, Paleo Diet, The Makers Diet), acupuncture, EAV testing… I’ve seen naturopaths, homeopaths, nutritionists, and Ayurvedic specialists. The natural routes have been much more helpful, but not curative.

I’m at the point that even removing my colon would not be the answer to my disease, because my small intestines are now involved due to the C-diff. My gastroenterologist is convinced that the 5 + years of antibiotic therapy I was on killed all my good gut flora, which caused my autoimmune disease (80% of our immune system lies in our gut). In order to restore the natural balance, my intestines must be repopulated. The only answer for me now is the fecal microbial transplant (FMT). This is where stool is taken from a healthy donor and put it into the intestines of someone like myself. This may take several infusions after the initial nasogastric endoscopy and colonoscopy route… It depends, but some people need it longer than others. They say it can take up to 2 years for the new bacteria to really make a good home for themselves for those of us with UC.

This procedure first came out in the 1950’s, where - after several FMT’s - people with C-difficile or UC were cured. There is a 91% cure rate for C-difficile and there are studies showing it may even be curative to 70% of those with UC. For C-difficile it takes about 3 procedures, but for UC it can take up to 2 years of continuous transplants. I have tried FMT from home in the past, but that was a nightmare as the only donor that met the criteria (and that I was paying money to) lied to me about their test results. Only later did I find out that they withheld from me that they had parasites, which almost killed me.

This time I’m doing it the right way, at a hospital, with a specialist who does this for a living and has donors that are constantly tested and healthy. Insurance companies won’t cover the procedure because the FDA doesn’t know how they could make money off of poop. It’s not a drug, so they are suspicious about repercussions of curing a highly profitable disease. At least that’s my nutshell theory. But, they do “allow” doctors to perform the procedure “experimentally” for recurrent C-difficile in the US. I am hoping that this procedure will not only cure me of the bacterial infection, but also get rid of my UC.

I am planning on seeing a specialist out of state, where I will have to be for 2 weeks. The total cost for me out of pocket is going to be about 10,000 dollars. This includes the air fare, lodging, meds, medical procedures, food, transportation, and costs of a month and a half worth of future FMT slurries plus shipping expenses. The additional costs of shipping me more slurries for 22 more months after that (my doc recommends 2 yrs of treatment) will probably add on another $ 5,000 - 6,000, but I will try to worry about that later.  

I am very nervous as there are risks that come with anything, even the risk that this may not work for me or that the colonoscopy may perforate my severely thinned out and inflamed colon - causing death or emergency surgery… but, I am hopeful, and think I have a better chance of surviving this instead of waiting around for the C-difficile or UC complications to kill me instead. I want to be better so badly, and for all the pain to end. I want more than anything to not miss out on anymore of my baby’s life and for my parents to be able to enjoy the rest of theirs. I want to be there for the people that I love and the people that need me.

I have learned a lot from being sick. If anything, it has made me a stronger and deeper person, and if I get better I am going to take what I’ve learned and try to help others who are suffering similar fates, because becoming chronically ill with a disease most people don’t understand is scary and lonely… and if I can make it through this it only makes sense to help others too.

Thank you so much for taking the time to read this. Any help you can offer would mean the world to me.

Sincerely,

Georgianna Henry