Back in April of 2008 I developed severe stomach pains below my belly button, so my mom came and picked me up from school and my mom rushed me to the ER. They took blood and ran scans. For the CT scan I had to drink this “banana” flavored chalky crap! Then go and take a scan of my whole abdomen/pelvic region. The results came in, which just showed lots of gas. Months later I was tried on many different IBS medications, probiotics, vitamins, etc. Nothing seemed to work, so in September of 2008 my Primary Care Physician sent me to a GI doctor out of Loma Linda University Children’s Hospital. This doctor ran many breath tests looking to see if I was lactose intolerant, I wasn’t. She also did one checking for Small Bowel Bacterial Overgrowth, which came back positive, so I was put on a 4-week course of antibiotics. When those were finished I still had the same symptoms, so she scheduled me for and EGD. The day came for that and the results were that I had an extreme amount of bile backed up in my stomach because obviously my stomach and small intestinal muscles weren’t working together to push the bile through. I was put on more antibiotics, which when they were finished I still had the same symptoms; constipation, cramping, bloating, nausea, and fatigue. That was all up until May of 2009.

December 1st of 2009 came around and I was in severe pain again, hadn’t gone to the bathroom for 5-7 days! My mom rushed me to LLUCH ER, they admitted me for a NG tube Go-Lytely clean out and a Colonoscopy. The Colonscopy results showed ulcers all over in my large intestine and inflammation in my colon. I was put on Pentasa. I was finally discharged a week later, on December 8th.

I was still in pain days later, so my mom called the GI clinic; they prescribed me Lactulose to try and get things moving along. No luck, on December 18th I was readmitted for a Go-Lytely clean-out, which took 7 hourse to even start working! I lost 6 pounds after that. They also did a Upper GI Small Bowel Follow Through, which took 8 hours to finish. I was discharged on December 22nd on Miralax, 17 grams once a day. As time went on the Miralax slowly stopped working, so my dose was boosted up to 34 grams once a day, then finally 51 grams once a day…I was going so much because it either didn’t work at all or I was running to the bathroom 5-10 times a day.

By February 10th of 2010, I lost so much weight and was now down to 79 pounds, so my mom called the GI clinic and had the doctor paged. Of course, he readmitted me for PICC line and NG tube feedings. It took them 4 tries to get a successful PICC line. This stay was the worst…they treated me horribly, like I had an eating disorder and didn’t really have anything wrong with me, even after they ran the capsule endoscopy that took almost 4 days to come out with extremely high doses of multiple laxatives I was questioned by the doctors and psychiatrists. My parents were furious! But I was discharged me on TPN, plus normal eating, on March 3rd.

On my two-week follow up with LLUCH my GI scheduled me for a Colonoscopy and EGD to be done in April, which I had and it was “normal”. We then switched over to Rady Children’s Hospital’s GI department, who did nothing and treated me horrible, so my mom called the head GI doctor at Children’s Hospital Los Angeles and he said he would get me in ASAP because he didn’t like that I was on TPN because I don’t have TOTAL gut/GI failure, which meant my bowels were still able to work somewhat with the help of laxatives. We couldn’t get in to see him until the middle of September. I was on TPN until September 2010, when I acquired a deadly infection and was rushed to my local hospital on September 1st by ambulance, then transported out to Rady Children’s Hospital San Diego. I almost died; my whole body was shutting down. The infection, Klebsiella Pneumoniae, now turned sepsis and I had just hours to live. Thankfully, I pulled through with the help of my amazing doctor I had in the hospital.

During that stay when the infection was controlled, I was switched over to their GI team until I was discharged, so they did a capsule endoscopy, which 4 days later was still impacted in my small bowel, so I had to take 8 dulcolax and 12 doses of MiraLax, then it finally came out! I was finally discharged without tube feedings on September 17th, but with the diagnosis of Fibromyalgia. I saw CHLA’s GI in October 2010 and had another Hydrogen breath test on December 2nd checking for SBBO; I had it, so I’m currently on antibiotics, then he said in the biopsies from the Colonoscopy and EGD I had back in April that were supposedly normal showed eosinophils(a type of WBC) in my bowels, so I was put on Entecort, a type of steroid. I was admitted on Jan 17th2011, where we found I was beginning to develop Osteoporosis, so now I was started on Vitamin D & Calcium. I was sent home on NG tube feeds;10 hours a night.

  • 2 Responses

  • dkaj says...

    Kimberlin, First I am so sorry to hear you have gone through all of this. Has anyone checked you for fructose malabsorption or sorbitol malabsorption. These can also cause constipation. They are breath tests just like the SIBO and lactulose ones. If you have not already gone out to Crystal Saltrelli’s Living Well with Gastroparesis site, she has a ton of info that might help.

  • Kirby says...

    She has sort of gone through everything and has more than just gastroparesis or other intestinal problems she is dealing with. One requiring a possible organ transplant. If you are wanting to follow her story, you can apply to her closed group and let them know I sent you. PM me on my Facebook GP page for their page as I don’t want to make it public here. It is closed for a reason and I don’t want to compromise that. Thank you for taking an interest in Kimberlin’s case. She is an amazing, special girl dealing with major health problems.

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