The Colon Chronicles: Parts I-X

Ok so you guys said you wanted gross stories. To date the best stuff I've got has to do with my struggle with my gut. I will try to walk you through it with as much detail and drama as I can type. Some of you already know the story some of you only know a tidbit and might be curious. Some of you could care less, but thats ok. For me, having it all on paper to read might make it even more amazing to see what I endured. Grab a coffee, a danish (the kind with the fruit AND the cream cheese), your bike bibs (because you will be sitting on the chair for a while to get through this) and a medical dictionary (you might need it). If farts or poo offend you then stop reading. Besides you cant be my freind if you cant laugh at fart jokes or farts themselves.

Long long ago in a far away galaxy.......
So for many years starting maybe when I got out of college (1993)...... we interupt this story to let you know that the dog farted and I am not able to breathe properly, so any typos from this point forward are due to hypoxia.
So Ive always been a runner. Ran track in high school. I was a sprinter. I dont do long distance very fast. But running keeps my butt and legs and bod looking good so I run. And I love running. Its solitary time for me. Me and my music and the trail. Always been that way, always will be. Im not a social runner. Anyway...... running would give me this bad side stitch even as far back as high school cross country. It was managable but it was annoying. Over time, it just progressed. I guess its hard to put a date on it but I do know that when I was first out of college I would get these pains in my left side that would put me in a state of not being able to function for a couple hours, that i would need to go lie down. This is early 90's. By the time 2000 rolled around running was starting to hurt too much to do. Constant pain in the left side. I muddled through. By 2003 I could barely go a couple miles without stopping to clutch my side. At the end of 2004 I bought a road bike so that I could exercise without that side stitch. This worked for the most part but when I revved my heart rate and got close to LT I would get bad pains in the same place and have to stop. So bike racing was pointless. I did few races with just pack finishes.
In late 2005 I decided I needed to find the cause because I was in pain pretty much daily. I had knee surgery for both knees done in Sept of 2005 so when I was healed I could then focus on the left side thing. So essentially January of 2006 I went to PAMF and saw a GI Dr. He told me I am stressed (no?!!!!!!) and that I should meditate and its in my head. Thanks for that Dr. Yoga Is The Source of All Healing. I asked to see another GI Dr and they told me I cant see 2 same speciality Drs in one department. Huh? So they gave me the name of a Dr up near Atherton. I liked her. Dr. Yang. She said lets do a colonoscopy and take a looksie. Fine, sounds like fun, sign me up. Well I had that done in March. You see, its time consuming. Find a Dr. make an appt, takes a week or so, then see Dr, then set up test, another week.. so time is marching on here. March 2006, one colonoscpoy coming up. Shouldnt be that bad. Little dope in the IV makes you sleepy you wont even know there's a garden hose in your rectum. Wrong! Such pain. Horrid pain that would rip me out of sedation to a screaming, writhing state until they could give me a bolus of something to knock me down again. Went home from that procedure and collapsed on my bathroom floor yakking from so much fentanyl. Martin just brought me a pillow so I could sleep by the toilet since I just did not want to move. Dr. Yang told us that she had never had such a hard time maneuvering a scope before, that it was catching and was very difficult to perform. She told me to go see my OB since she thinks I have endometriosis/adhesions and she doesnt deal with that girly thing. So I go see my OB. I tell her what my GI doc said and she literally gets bug eyed and says "I dont deal with bowels". Fab. So this April by this time. I make an appt with the head of ColoRectal surgery at Stanford. GOing for the big guns, the top guy who has seen and done it all with the colon and he will know how to help me. Wrong. After 2 hours of screwing around with his interns taking histories of me, he finally shows up all suited up and cocky. Jerk. Probably drives a BMW. He tells me "you are wasting my time, there is no way you could have adhesions in your bowels even after a c section in 1997". Martin just about flipped his lid. The ONE thing I have learned in my journey to better health is that just because you havent seen it doesnt mean it doesnt exist. So he tells me of a GI doc in Mountain View that used to be a colleague. Dr.T. This guy is good. And this guy is booked so its like May when I see him. Well, we do a boat load of tests.
One, is the endoscopic gut waves measurement test. You put a tube down in the small intestine and leave it there. It has a sensor. You wake the patient up and sit them up with this tube coming out of the mouth taped to the cheeck. You measure the waves of the intestine on machine. You then give the patient who is most uncomfortable a sandwich of dry tuna on wheat toast to eat- why why WHY couldnt it be a freakin' Pop-Tart or a chocolate bar!!!???? Then the probe measures the waves of the gut. This goes on for 6 hours. Awake. With 2 dry sandwiches every 3 hours. You try eating a sandwich made of bark shavings without water to drink with a tube coming up your throat. That sucked. THe worst part was pulling the 5 foot tube out through my mouth when we were done. Had to be done in 2 pulls. The nurse I swear to God looked like she was starting a lawn mower! The taste was foul not to mention the gag reflex. Result: I have Irritable Bowel Syndrome (IBS). No shit Sherlock. Thanks for that. Next test a few weeks later was to swallow a pill that had a bunch of rings in it (tiny tiny things). In 5 days we x-ray your gut so see if they are gone. Well they werent. One little ring was still there sort of caught up on the left side of the descending colon. Hmmmmm. So we now know I have slow motility. Great. So we try some meds to speed up my gut. They dont work. I do know of some good Thai dishes that can do that which taste much better than these pills. We try some other meds, they dont work. Meantime Im scheduled for a Hydrogen Breath Test. He suspects I have an overgrowth of bacteria in my small intestine (SBBO- small bowel bacterial overgrowth). Those little microscopic bastards off gas like there is no tomorrow (which were gas comes from, the bacteria by products of sugar and carbs) and the gas gets stuck in my left side and causes pain. Took 2 weeks to get in for that test since they only do it Fridays. So my test went off the charts. So onto antibiotics I go. Rifaximin for E. Coli. Didnt work. I did get horrid diarreah tho- yay !!!! 2nd round, didnt work. So now its mid May and we do a double dose of 2 antibiotics. I go on our annual 4 day Memorial Day ride from San Jose to Santa Barabara with 50 other freinds and I am sick as a dog from the meds. (sad face). So over the next couple months, we just sit pretty and take a break from doctors. I'd had it. I couldnt do anymore fasting and tests. I cried a lot. We stayed home a lot because I had to lay down all the time. My husband is a good man. Its been 5 months and no diagnosis other than pain in left side, lots of insane bloating in the evening and me having to lay down for up to 5 hrs til it works its way through. By end of Aug Dr. T. recommends this guy in Los Gatos, a surgeon, Dr. Cook. (let me give a shout out to Dr. Andrew Cook and his staff at Vital Care Institute for Women is Los Gatos). The man is world renowned. People travel from all over the world to see this man for endometriosis surgery. He is the best. Period. And he lives in my town! Score. We dont know i have endo yet at this point. I go see Dr. Cook. He is the kindest man. He LISTENED to me. He HEARD me. He said "if you're hurting right there then something is wrong right there. I am willing to do exploratory surgery to find out". I think I cried with relief. Sept 21, 2006 I was scheduled for laproscopy and he does his stuff at Menlo Surgical Facility (like 5 star hotel kinda place). When I wake up, he says we found the problem. I remember crying with relief. He found endometriosis. These rope-like adhesions that were in my abdomen. My colon on the left side where it goes from transverse (across the tummy) to descendning (down the left side) was attached to my ribs so that is why food and gas what getting held up, causing the bloating pain. Ahhhhhhhh. Yay!!!!! Im fixed. He also found more adhesions here and there and zapped them away with the laser. I recover pretty quick. On disability for a couple months. But the pain is not going away. In fact it is getting worse. We tried all kinds of treatments from B12 shots to nerve blocks to lidocaine patches on my tummy. It wasnt helping. I was distraught. Its easy to lose hope when you feel this way. I had already lost a year of my life at this point to this disease that nobody to pin point. So around December, he sends me for a barium enema, to get a contrast picture of my intestines. And yes, its as bad as it sounds. So you have to fast for this test. You have to fast for all the tests I did. Not eating for a few days is hard. I become a bitch. So would you if you were starving and only got to drink broth. So I show up for this test, empty, pale, annoyed, scared. I do the traditional hospital gown that is open in the back so there is a constant breeze up your arse kind of situation. I lay down on the metal table. They pop the tube in and inflate the balloon thing so the tubes doesn't come out on its own. Try this at home, put a party balloon up your butt and have your freind blow it up. Now leave it there for an hour. Good times. So they fill me with this chalky white contrast solution. It shows up as black on the monitor. It stops right about where I have my pain. It wont go anymore. The technician scratches his head. Im in pain now, that part of my gut is NOT happy. They rotate the table so that Im tilted head down hoping that gravity will help pull the dye up into my gut. Not happening. So they stand the table almost upright and drain me. Thats nice. im going with the flow here, literally and trying to be positive. I just want it over. They decide to dilute the solution further as it is pretty chalky. Fab. Up it goes again. This time is goes. Oh joy. Well after a half an hour of clenching my ass cheeks and grimacing in pain they are done. I go home. Dr Cook has another Dr he works with who specializes in bowel surgery. Dr. Brown . This doc called me and said, "I think I can help you". I cried. I remember exactly where I was sitting and I remember it was dark and rainy outside. I met up with Dr Cook to look at my scans later that week. It was unreal. Picture the Top Gun roller coaster at Great America. It looked like that. They couldnt tell where my gut started and where it ended.
Here is your medical lesson for the day- The normal large intestine(which totals about 5 feet in length) starts at the junction of the small bowel low down in the abdomen and goes up the right side of the abdomen to about the bottom of the ribs then hangs a corner (called the heptatic flexure- hepatic means liver, your liver is on the right) then it cruises straight across to the other side and hangs a corner down (the splenic flexure, your spleen is on the right directly under the last rib) and then it goes straight down (straight not curved) to the cecum, or last few inches of the bowel to the end. Got it? Good.
So this is what mine did. It cruised on up to Mr. Liver (Hello Liver!) and then instead of transversing, it had so much extra length it drooped down all the way into my pelvis. Then it looped back up to the splenic area (well hello Mr. Spleen) and on that segment that went up, it had a fold (picture using frosting in a tube and youre making a nice line and then you double back and go over part of it again and then continue) then it was connected to my ribs. Then, yes it gets worse, instead of just going straight down to my rectum, I had excessive coiling and looping of the bowel. Holy hell what a mess. So we scheduled surgery to go in laproscopically with Dr. Cook to remove more endo/adhesions and then Dr Brown would open me up (on my old c/section scar) and remove some bowel and sew me back together. This was a big surgery. I had to be squeeky clean for this one. Lets just say that the prep was a doozy. My colon could hold a quart of water since it was oversized so those lame ass Fleet Enemas they sell at Longs are worthless. We bought the super-deluxe, over-sized, extra- durable, bright red do it yourself scrub the rectum clean enema bag. Martin should have a medal. He's been scarred for life. 9 quarts folks, 9 quarts- 1 quart at a time for a total of 9 enemas I endured on top of drinking the saline that strips your gut clean. That was not a fun night. We laugh about it now. Actually we laughed about it then as I tried to hold a quart of water in for 20 minutes then did the penguin dance to the can for the explosion of water and Martin yelling "oh my god!!!!" . Good times.
The surgery went well, it took just over 2 hours. They removed 5 FEET of excessive bowel. I have the photos and if you want I can post them. I will never ever eat fajitas again. OMG!!! It was such a mess. I had that huge adhesion on that back looped part that was causing a stricture so tight, gas and food would get caught in it AND be trying to move upwards until enough pressure built to push it through. 5 Feet folks, 5 feet. So now I have a normal amount of bowel.
The recovery from this was 5 days in the hospital. I dont remember much from day 1 other than waking up, lifting my gown and seeing all the bandages covering al the ports for the lapro and the huge scar and groggily telling my freind Ellen "I look like swiss cheese" before crashing out on a morphine buzz.
I actually was doing pretty well about day 3. I was HUNGRY tho. The rule after surgery, any surgery is you can eat when your gut wakes up. During a surgery, which is trauma to the body, the body will shunt blood to the vital organs and shut down the digestive system. So, when you fart you get jello. Its a very simple math problem. So we wait. Day 4- I feel a gurgle. Oh joy!! Let me back up and explain what they did before they closed me up. To test the resutured bowel site (called an anastamosis), they popped another tube up the hiney and filled my bowel with an iodine solution (iodine is brown) to the point of major distention to see if the stitches held. They did. I was leak-free, they drained me and then closed me up. Not all the solution comes out during the draining, its impossible not just some cruel joke bowel surgeons do for fun. So when I felt the fart coming I thought I was golden. I got up to hit the bathroom since i had to pee and felt the rumble so I went with it. There I am in my sexy gown,standig next to the bed, my hair standing straight up, an odd look on my face. an IV pole in my hand, and my favorite fuzzy white slippers at the ends of some very unshaven legs. I can remember clear as day: My dad is sitting there reading a magazine next to my bed. My mom has run to get a nurse because she wants me to eat something. So I get good and ready and brace myself and I fart. It was not air. Oh no it was not air. It was the iodine remains and it bubbled/shot out at a high rate of loud, squeeky goodness down my leg into my slipper and onto the floor which was carpet because this was the MP Surgical Facility, no linoleum here folks. I was mortified and thoroughly grossed out. I technically shat my pants- sort of. My dad didnt miss a beat, looked up, looked at me, looked at the iodine turd running down my leg, licked his finger, turned the page and kept reading. Classic. So my mom shows up with a nurse and there I am. My moms face was priceless. The nurse had seen it all so she just smiled, turned around and said "im going to get a new gown, wait right there". What a sight. At this point nothing phases me but it was indeed embarrassing. My dad is still reading like nothing happened. Wisely he had checked out of this episode. So I got to take a shower. With my IV pole and my mother half in there with me since I was still pretty weak and couldn't bend down. My slippers didnt make it. But I got some vanilla pudding (I dont think I can do chocolate ever again) so it all worked out in the end. Lets all say it together..... good times.

Ok so bottom line- the Dr that saw me in Jan. had it nailed. I had to finally find a Dr that would take a look. That took 9 months. Im so pissed at Dr. Whats-His-Cocky Attitude-Screw You I went to Med School So Im Better than You-Name that I seriously think I should send him a Christmas card with the photo of the SURGEON THAT HAD TO RESECT MY BOWEL HOLDING 5 FEET OF ADHESION-RIDDEN COLON IH HIS ARMS LIKE A BOA CONSTRICTOR this year and a nice short note telling him to get off his high horse and listen to his patients oh he who has clearly not seen or done it all!!! Take that you jerkoff, I DID need a colo-rectal surgeon because I knew something was wrong and you didnt listen you Turd of all Turds. I need to TP his house.

Im pretty much okay now tho I can feel the endo making its way back like a silent, slithering demon. I have pain pretty severe lately and I know Im facing another operation to remove more adhesions. Endometirosis doesnt go away. Its a life long disease. So many women suffer from it. So many more go undiagnosed because they dont have a doctor that understands or who cares enough to pursue the symptoms. Look it up sometime. Educate. Somebody you love may have this.