I am not a good patient. I have not accepted that this condition is a part of my life - even though I went through a year of every medication there is and of being tubed, scoped and tested, another year after that living with it. I have been told by the best that this is here to stay. Still I don't believe it and don't want to accept it.
Here's the history:
In September, 2005 I had my gallbladder removed. The surgery went well and I recovered well from it. I went to San Francisco to visit friends and felt great. A month later I had adhesions removed from my small intestine and stomach wall. These were caused by a ruptured appendix years earlier and they were giving me discomfort. This surgery was an open abdominal procedure and one week after the surgery I was in the ER at 2 a.m. with a small bowel obstruction. That was the surgery that I didn't recover from - I know I spent time in the ICU. I believed it to be a day - my family says it was a week. Don't really remember it at all. When I got to the Med-Surg floor I was sicker than I had ever been in my life. I do remember not being able to drink or eat and throwing the Surgical team out of my room one day so I could have 5 minutes where someone wasn't poking me or changing my dressing. I feel badly about that. From my records there is some discrepancy over whether or not I had C-Difficile - I think I may have given how sick I was. I had an infection in my incision and spent 17 days in the hospital. I never stopped having diarrhea, it never changed in intensity - I have between 10 to 30 trips a day. Every day.
For 3 months I was completely bed bound except for the trips to the bathroom. I couldn't hold down any food at all and had a hard time with fluids. I crawled into my primary doctor's office at one point so sick and so weak that it's a wonder I didn't get admitted to the hospital. In January I began eating nothing but grapefruits and grapefruit juice. And in February with the help of months of Compazine and a some sunshine on a cruise that I had no business being on, I finally was able to start to eat. The diarrhea continued, unabated. In June I was hospitalized and had a colonoscopy which was normal except for a bunch of polyps and some inflammation.
Medications that we tried are many - Lomotil 3 times (no change), Immodium (vomiting), Pamine Forte (severe eye pain), Cholestyramine and Colestid 3 times (vomiting, stomach pain), Tincture of Opium (hives),Entocort EC (stomach pain and no change), Octreotide (stomach pain). We also added metamucil which caused me to writhe in pain so severely that I never could bring myself to try it again. I get the same crazy writhing pain from vegetables, beans, nuts, seeds, ice cream. I am truly housebound by this condition for the most part - a couple of times a year I get stir-crazy and then I travel and pay the consequences.
So here's today - I get up really early to go with my friends to work a show. I drink my coffee, eat my breakfast pastry while riding to the show. After arriving to the show I visit the ladies room and then nothing after that for hours which is not normal for me. So I start deluding myself into believing that I am getting better, that today is the day that my body is going to heal itself and I will be able to live a normal life again. And even though I know rationally that this cannot and will not happen to me I want so badly to believe it. Then it happens - that moment when it all comes crashing back and I am forced to face the fact that today is just like any other day and I am left feeling like I fell from some great height onto concrete.
It's not that I am stupid. It is incomprehensible to me that this is my reality and I, who has such faith in Western Medicine, realize that there are limitations to what medical science can do for me. I haven't been able to fully embrace any holistic remedies because how can they work when medications designed and tested for my disorder have failed? I do go for massages when I can and I do tai chi and yoga. Meditation and guided imagery every day. These balance me and make me feel centered and whole but they do nothing for the diarrhea.
I have other conditions - asthma, fibromyalgia, traumatic brain injury from closed head trauma which caused neck disc herniations with nerve entrapment. I just had a cancer scare and underwent surgery to have my ovaries removed. But all of these have always been treated successfully and I have been able to bounce back.
Why didn't it happen for me this time?
Now I know you are reading this and you are saying "what's she doing drinking coffee?" and "get off the sugar". Believe me, I have done it all - gave up coffee for 7 months - no caffeine, no decaf, no nothing. I was not a happy girl and it didn't change a thing. And same for the sugar - I also did Gluten Free, Dairy Free, added Probiotics for months at a time and then eventually graduated to the "No Food Diet" which is where I spend alot of my days. It's easier - don't eat because it's not worth it. Drinking liquids - water, juice or anything is difficult too. And the more times I run to the bathroom the less I want anything to keep that cycle going.
I've lost 100 lbs now. I can eat whatever I want as long as it is not anything healthy - no high fiber, no beans, no nuts/seeds/dried fruit, no dairy such as ice cream. I can eat easy things - rice, potatoes, chicken or steak, french fries, tapioca pudding, greek yogurt. My body doesn't know the difference - none of it stays with me for very long. I drink electrolyte enhanced water because I lose my potassium levels easily. I limit my coffee to one cup a day and I try to drink things like limeade or lemonade occasionally.
Recently I was hospitalized again for dehydration. I know the signs now and know when to call the doctor or head to the ER. I know not to wait until I am passing out (been there and done that). I told you I am not a good patient. I am stubborn, defiant and keep trying to live life as I used to. I know that the dehydration is preventable and I would love to prevent having it ever again but sometimes my condition is so bad that I cannot hold even water down - then I know it's a matter of time. When I get the dizziness, the headache, cold feet & hands, aching shins - this time around I even had really bad stomach cramps too. It's the worst feeling in the world. This time I got lucky - one night, lots of fluids, some Cipro for a brewing UTI and my primary came in & got me discharged (he told them at admit that I would be trying to get out of the hospital and he was right). My blood pressure was still postural but I was released. I drank and drank all week but was still moderately dehydrated when it was time to fly to Arizona. I got on the plane - possibly a bad judgment call on my part and arrived to 100+ heat. A rough couple of days and a scare with heat exhaustion then things turned around. No sitting out in the sun like at home, no going out at the worst part of the day, lots of electrolyte enhanced water and potassium supplements and I am hanging in there.
Until today. Today I had to face my limitations again and it was hard. I am still trying to find a balance between what I can do and what I would like to do. I would love to go back to work, leave the house, shop for groceries, do laundry. I can't do those things on most days. If I have a doctor's appointment then I stop all food and water for two days beforehand so I can get to the appointment and through the appointment without having to run for the bathroom. I can't stand for long anymore due to muscle weakness. My hair falls out and according to a nutritionist that I saw I don't eat enough calories in a day. I am working on that when I can - eating red meat, cheese, yogurt, nut butters on crackers - but most days I fail at this task.
So starting now I am going to start taking it one day at a time and I am trying not to wait for a miraculous recovery in the meantime.
Meg
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