- CASE FILE
I’m a 60 year old with a long history of GI problems & several complicated surgeries whittling down my colon to “Short Bowel Syndrome” size.
ABOUT THIS CASE FILE
I’m looking for assistance with a case study, my own. I’m a 60 year old female that was diagnosed with ulcerative colitis in my mid thirties after suffering with it for much longer. I went through the treatment at the time, which included mega doses of steroids, non steroids, anti-inflammatory meds and even immuno-suppressive meds. That was about 20 years ago. I have had other GI issues, but nothing related to the UC. I take meds for HBP, chronic depression and I have also been treated for HCV, which responded to therapy after two separate cycles of interferon and antivirals.
After living my life centered around where the next bathroom was located and going to visit family in Florida and embarrassing myself again, I was ready for surgery. There has been a lot of GI type cancers on my mother’s side and my younger sis was dealing with colon cancer at the time. I ended up losing my sis to colon cancer and she was only 42. On my father’s side, there tends to be a lot of UCD and Crohn’s. After the Miami trip, I made an appointment to see my surgeon and I decided my colon and I should part company.
I have been living with an ileostomy now for about 15 years. After 4 years, several small hernias developed and my surgeon repaired my small bowel and wrapped my gut in mesh. While still in the hospital, I became obstructed, but cleared it with a NG-tube and staying NPO for the next week. By 2018, I had developed a parastomal hernia so large, my surgeon had to do a revision and move my ileostomy to the other side of my body. The surgery was in August 2018. I went home one week later and became obstructed immediately. Back to the ER. My doc dropped a NG-tube and I was NPO for the next 2 weeks. It didn’t clear.
The third week of August, I went back to OR so my doctor could remove the obstruction. For the next five hours, my surgeon tried to untangle my small bowel from the mesh he’d used ten years earlier. He explained how glued together everything was and he had to remove part of my small bowel. I would not understand my diagnosis until 2-3 months later, Short Gut Syndrome.
I went home in mid-September and almost died. I was so afraid of getting obstructed again, I was afraid to eat. I went back to ER and spent the next few days in NICU, then to the floor and I would not leave again until the first week of December.
I lost 50 pounds, most of my hair fell out and my hands and feet peeled. I had bed sores from the first hospital visit, an open wound on my abdomen and I couldn’t get a good seal on my ileostomy. I had also developed Thrush during the time in September when I’d stopped eating. My chemistries and H&H were mostly all critical low values. We would spend the next two months trying to get my chemistries stabilized. I would end up having to infuse TPN every night.
Now fast forward to the present. My biggest problem, now that everything else has healed, is a malabsorption issue, chronic dehydration, chronic anemia, abdominal cramps, bloating, gas, joint pain and abdominal pain (almost constant). I started out running TPN every night and now only run it twice a week. I’ve had to add saline boluses since hydration has been a real problem this summer.
While I was still in hospital, I received 2 iron infusions and 3 units of packed RBCs. Since being discharged, I’ve had to receive 2 more iron infusions and 4 or 5 units of packed RBCs. At my lowest, my H&H were 6 and 24. Now, after all the treatments, my H&H never goes above 10 and 30. We have done various testing looking for GI bleeds and even did a BM biopsy. They were all normal or negative.
I remember from Med Tech school, there are various minerals and other stuff you have to have to make RBCs, like copper, folate and iron. My question: why am I not making red cells? What could I be missing that’s required for creating these important carriers of O2? I do take a good multivitamin, but maybe I can’t absorb it. Is there something that is normally absorbed in the colon (which I don’t have)that I need for RBC production? I know K2 is produced by bacteria in the colon and K2 is involved in the clotting cascade, but is it required for RBC production?My clotting time has been affected by the additional loss. Any insight or advice would be greatly appreciated!
Update: I do see a hematologist and he has done various testing including a bone marrow, which was normal. The last iron infusion I received was in April 2019 and the last unit of packed red cells was transfused approximately one month ago. My most recent CBC showed an h & h of 10 and 30 and my MCV was 70. Iron studies are in normal range, as is B12 and folate. My hematologist calls it chronic anemia due to chronic disease. Insurance will not approved procrit without a diagnosis for the anemia.