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Apr 28, 2017
Howdy. Thanks for visiting this website. If you are reading this, you probably already have general knowledge of my current health issues. In a nutshell, I am experiencing serious GI problems and am undergoing treatment at the mayo clinic. I am receiving all nutrition through an IV catheter in my chest. (Read more....)
I know everyone is probably curious to know exactly what is going on with me, but it's very complicated. I know I've already talked about this ad nauseam to most of you. For those who haven't spoken to me or just want to know more, I will elaborate. Being an NP and knowing that the majority of folks reading this are also, it is hard for me not to use medical jargon. I will try to make this layperson friendly too, but please bear with me:
My local docs couldn't figure me out, but thankfully, I am finally getting some answers at Mayo. Although many of you are aware of my recent troubles and GI surgeries, the problem was likely present at birth and I have inherited a very rare intestinal motility problem called "chronic intestinal pseudo-obstruction (CIPO)." This means that food doesn't move through my GI tract properly either due to abnormal nerve or muscle contractions. This is what led to my recent malnutrition and nearly 50# weight loss over the past several months.
All of my life, I've had intermittent episodes of severe abdominal pain and bloating. The pseudo-obstruction looks like a real bowel obstruction on plain film, but is proven to not be a true mechanical obstruction on CT.
Unfortunately, malrotation of the intestines can be a part of the disease, which further complicates my case because I do have recurrent true obstructions in the form of a volvulus (or twisting). Because of this, I have had more than one colon resection surgery which has caused adhesions (scar tissue) that can create additional forms of true obstructions. It also doesn't help that I had another open exploratory laparotomy on 2/17 which just adds more adhesions.
This disease can cause problems in the entire GI tract, so it's not uncommon to have severe esophageal disease and fundoplication surgery as I have had.
Again, I have been dealing with severe GI troubles for as long as I can remember (even as an infant, according to my mother), but over the past 8 months I began to have much more frequent bouts of severe pain and began having a new symptom of significant pain with eating. Therefore, I was surviving on probably under 500 calories/day. I spent over 30 days in the hospital from December thru March with "false obstructions" and abdominal pain. I was finally initiated on TPN (IV food) on 2/26 via a picc line after having had severe malnutrition for months. My labwork was horrible, especially nutrition labs and I had begun to third space quite significantly.
On 3/17 I went to the mayo campus in Rochester where the most respected GI group in the country resides. I had one week of bizzare and sometimes inhumane testing, and another week of consults with genetics & endocrine. The most significantly abnormal test was the 24 hr follow through (mouth to anus). GI guru said I am going through a rapid transit period right now, so in other words, I poop my pants if I eat food. I was given lomotil to slow things down, but because things are moving too fast thru my system to be absorbed, I had a hickman catheter placed (and picc removed) and the "gut failure" clinic has taken over my TPN management. I got officially labeled as CIPO in May from a biopsy of my intestines during an ileostomy (and open hysterectomy) surgery. I now have a loop ileostomy to help me not to have so much abdominal distention with eating. Unfortunately, the midline incision after the surgery became abscessed and I had emergency surgery to drain the pus in the middle of May. Afterwards, I developed a complicated fistula that caused poop to drain out of my open abdominal wound. It has been very painful and I have had to be on powerful narcotics. I also was not allowed to eat or drink anything for two months.
It's 2010 now and I still have catheters in my chest for nutrition/hydration. I still have an open abdominal wound. I was referred and evaluated to the U of Omaha Medical Center for an intestinal transplant evaluation in October.
It's been a long, rough road from diagnosis, to surgery and with multiple complications along the way. As soon as my open wound heals, I am to return Omaha's transplant team for re-evaluation for intestinal transplantation from a generous cadaver!!
I have attached several websites and articles that further explain CIPO under the resource tab.