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Digestive Disease Treatment and Recovery

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For the past 16+ months I have been in a whirlwind/tailspin.
Early February 2018 I was experiencing what I thought was food poisoning, realizing it was getting worse I went to the walk in clinic where they immediately sent me to the ER. After labs and a catscan I was told I had Diverticulitis. I was sent home with a 7 day dose of 2 broad spectrum antibiotics. We had recently moved away from our home of 16 yrs for an employment opportunity and had not yet established care providers. I followed up with my old Naturopath who referred me to a GI. I started understanding what Diverticulitis meant to me and my gut health. I was researching alternative treatments knowing if I got another Diverticulitis attack antibiotics can do more damage than good. I wasn't fast enough and early April 2018 I was experiencing what I felt was an ovarian cyst (have had them before PCOS). I made an appointment with a local Nurse Practitioner who agreed that it fit the symptom picture of ovarian cyst and sent me for an ultrasound. During the ultrasound the pain became more and more severe. They told me no it wasn't an ovarian cyst it was diverticulitis. I went to the ER again had yet another catscan and labs...and was told again diverticulitis. They told me since I had just had diverticulitis 2 months ago I should consult with a surgeon to see about a resection. I was prescribed another broad spectrum antibiotic 14 day dose. Shortly thereafter the pain changed, it became daily stabbing pain throughout my colon... I called the GI and Naturopath and explained my symptoms all agreed to consult with a colorectal surgeon. I found a great colorectal surgeon whom after waiting weeks could consult with me. I was told that at that point I had uncomplicated diverticulitis and as challenging as it was to wait. I waited with severe colon pain. Finally with severe pain Mid May 2018 I couldn't take the pain anymore and went back to the ER.. This time was different my body was really struggling. After labs and yet another catscan... I was told that my white blood cell count was sky high and they had me on Cdiff watch... as well diverticulitis again. I was admitted to the hospital for 5 days over Mother's Day... When the surgeon on call came in he was scheduling me for the resection 2 days later. I said I wanted to consult with my colorectal surgeon first. I then was diagnosed with C diff which put me in a whole other category of risk and infectious disease. Everyone had to wear gowns,gloves and booties to enter my room. The pain of C diff which in hindsight I was experiencing for over a month at that point is like none other. https://www.cdc.gov/cdiff/index.html
C diff is a medically caused disease meaning you get it from taking antibiotics.
During that hospital stay I was put on IV antibiotics x2 .. one for the diverticulitis the other for the C diff.
I was discharged with 14 days of oral antibiotics for diverticulitis and 21 days of Vancomyacin liquid (from the compounding pharmacy) for the c diff. , and to follow up with my colorectal surgeon. I consulted with my colorectal surgeon who said now I have complicated diverticulitis due to the C diff..
I was told to complete the Vancomycin and come back to evaluate.
Within days of finishing the Vancomyacin(early June)the tell tale pains of C Diff were back.... I tested positive and having done mass amounts of research chose a Fecal Transplant. Most of the GI's wouldn't consider it without doing at least one more round of antibiotics and I couldn't go that route again that's what got me here in the first place. I found https://www.openbiome.org/ Open Biome who worked with  my GI to facilitate FMT via capsules. https://www.openbiome.org/about-fmt
With a 80-90% success rate I was hopeful.
It worked for a couple of weeks then boom it was back late July... The C diff bacteria eats away the lining of the large intestine .. causing havoc with peristalsis and toe curling, excruciating  pain, it can cause intestinal rupture and death. I went back to my colorectal surgeon who told me the medical model treats repeat c diff infections by removing the large intestine.... from bad (resection) to worse (entire colon removal)..I was still having daily colon pain and was told I had post infectious IBS.. I decided to give FMT one more shot . I found that the success rate of doing two Fecal Transplants 24 hrs apart greatly increased my  chances of treatment.
And it worked! Since early August 2018 I have had daily colon pain which is part nerve damage from the Cdiff, part SIBO, part abdominal adhesions (from cesarean surgeries) and also diverticulitis,SIBO and CDIFF cause adhesions.....
I have worked closely with a naturopath who specializes in gastroenterology and has helped me navigate the long painful journey thus far. With daily colon pain and my colon's intolerance of anything other than collagen based foods... the concern is something else is going on. The next step is to do extensive stool testing to look for other pathogens and parasites. As well as a colonoscopy to rule out Chron's , Ulcerative Colitis or Cancer... I already have rheumatoid arthritis, hashimoto's thyroiditis and sever asthma and allergies ... so the autoimmune picture is already there.
So that is a brief overview of my experience with the bowels of life so far. I have been riddled with anxiety and despair over how to maintain... caring for myself, my children, the house hold ... let alone eat real food and be able to participate in life... as well as get to the root cause of this and be pain free.
I have catastrophic insurance. So, there is no naturopathic coverage or  other alternative therapies ie... viceral manipulation(abdominal adhesions), acupuncture, supplements..Even with gastroenterologist , colorectal surgeon and prescriptions I have a high copay ..all is out of pocket and the pocket is empty. I am unable to work with daily colon pain and IBS.  I need to trust that people do care and are willing to support me in getting back to life. I am a caregiver who  has contributed so much to the greater community and am a very private person so publicly asking for help is 180 for me. I thank you for reading this far and considering my situation. May your generosity and care come back to you threefold.

Organizer

Landis Helie
Organizer
Poulsbo, WA

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