Dr. Bellyfixer Scores 100%

Better Buy Stock In Miralax

Back at home after driving to St. Louis and back (five hours going and five hours coming back) to see Dr. Bellyfixer.  Experiencing lots and lots and lots of pain this evening.  So glad I took both Tuesday and Wednesday off because I have taken my breakthrough pain medication (dilaudid) and it doesn't seem to be doing anything.  I probably could take more of it, but I think I will make a supreme effort not to, and see if I can just suck it up and bear with it.

I didn't take my neurontin Monday night or Tuesday morning because it makes me sleepy.  I also took some OTC anti inflammatory but they didn't help much. Tried to stay alert, but had to pull over numerous times for 15 minute naps.  I hate to drive long distances anymore because of this.

Dr. Bellyfixer and his fellow specialist in training Dr. Bowels were very helpful.  I have so many things wrong with me they let me pick what problem I wanted to tackle first so I chose abdominal pain caused by bacterial overgrowth of the small bowel for priority #1.  They were able to come up with a new strategy without adding any additional medications so I was thrilled.

Because I am now having electrolyte depletion and leg and foot cramping Dr. Bellyfixer wants me to start using Gatorade each day.  I am to add a couple of capfuls of Miralax to the Gatorade.  Dr. Bellyfixer hopes this will control the fecal incontinence a little better.  Once every three to four weeks I am to purge my system top to bottom using Miralax - something like half a bottle with 32 oz. of Gatorade.  Dr. Bowels said that I cannot overdose on Miralax and Dr. Bellyfixer agreed with her.  He said Miralax is a large molecule preparation that causes the bowel to excrete fluids.   Dr. Bellyfixer's nurse said don't go far from the bathroom on the days scheduled for purging.  They said they have one patient that has to take 12x the recommended dose. Not tasty.

I will be consuming mass quantities of Miralax and Gatorade, neither of which are covered by my insurance.  If buying these sends me to the poorhouse, I'll have to make sure it has a poop-house attached! 

Dr. Bellyfixer asked if I would participate in a study on persons with bowel motility issues, like irritable bowel syndrome or Crohn's disease.  I was happy to!  They took some blood for DNA testing and some other blood tests and I have two or three information booklets to fill out and mail back. Not a big deal and I don't have to write a diary or anything like I had to for the occipital stimulator study, and it's a one time effort.  Hoping it helps other people, as my issues are more bio-mechanical than genetic.

I have a March appointment to go back to Dr. Bellyfixer.  I will have made progress on getting my bowels straightened out by then (a bowel joke as my bowels are kinda kinky = HA!) and maybe will be able to pick another issue to tackle. 

I hope that this post makes sense - the dilaudid and the phenergan are making me "drift" so I keep snapping back to the post and then zoning again.  Wish they did a bit more for the pain.

The Power of The Subconscious

Suggestion or Inspiration?

I decided today that one of my resolutions for the New Year was to learn to knit socks.  When I was young I was taught to knit by my mother and a pair of house slippers was the first project I was taught to knit, a very simple first project.  I learned soon to knit "in the round" using four needles and then moved up to hats and mittens, graduating to gloves with five fingers.  I have made afghans and scarves but really haven't knitted for years except for a disastrous doggie sweater I made for my dachshund Augie.  It might have looked OK if he was a foot longer, had a large hump in the middle of his shoulders and a couple of extra legs and if his throat had been as big around as his butt.  Otherwise, it was a really good fit.

I started wondering this evening why I had a sudden urge to knit.  Why was this dwelling on my mind? Then it dawned on me.  CATHETERS!  The intermittent catheters I am using sorta generally remind you of a knitting needle.  Duh.  I'm handling them over and over and over and over, and I guess it has been tickling at the back of my brain.  Now that I have already gone and bought the yarn and new needles and downloaded some new patterns I have figured it out.  Probably should have saved myself the trouble - I thought I was being inspired, instead I was being nagged.   Sigh.

Since I have some new wonderfully crazy yarn I think I am going to have to knit some socks.  I know myself tho.  Probably this resolution is going to go into the box with all my other unfinished resolutions. I will hit myself over the head later and say "Why did you ever start this??" - at least this time I have figured out the why!

I am on my way to St. Louis tomorrow to see Dr. Bellyfixer.  With gastroparesis I have to take "Miralax" every week in order to make everything move through my system.  Some weeks it is very hard to make things move.  Such is my dilemma tonight.  Watch - I will be three hours into a five hour drive and the Miralax Miracle will decide to happen between rest stops. I guess I'll take extra clothes.  Gosh, I feel like Charlie Brown  - I just can't seem to win. Drat or as Snoopy would say "Bleah."  Thinking of Snoopy maybe I will go dancing in my mind with Snoopy and the bunnies; beagles are Always Happy and Joyous (at least our family beagle Max was).  Wandering down memory lane a little too much lately I think, but its such a lovely lane!

Finally - Dr. House

Crisis Management vs. Healthcare Appointment

Life here at my house has been not only hectic but in a tizzy.  I have not been blogging, and I have been staying close to home mostly because I had to help manage someone else's serious health issues and my Mom needed me close by.   She does not have the coping skills to keep up when events turn sideways quickly. Tonight I have some time to blog because while the crisis is not totally past I know everyone involved is safe and well cared for at this time.

The crisis was an hangover from the prior week, so my week got even better when kidney stone #2 of 2011 decided to pass Tuesday night. I debated about calling an ambulance. The pain (even with the fentanyl patch) was so severe I could not drive, stand or doing anything but squeak icky noises. My Mom was having enough problem coping with the other issues, I just couldn't leave her at home while I went to the ER to get help with KS#2. I rationalized that the ambulance would take 20 minutes to get to my house, the ride would take another 45 minutes, and I wouldn't get any pain relief at the hospital for at least another hour - and by then the stone might have passed. I toughed it out and finally got some liquids down my gullet to help push KS#2 down the path after about five hours of extreme spasms. Not something I would recommend if you didn't have to. Big sigh.

Wednesday I wasn't eating much of anything because of KS#2, but I had a tiny piece of some cashew brittle.  I don't eat cashews very often and never cashew brittle but thought maybe the sugar would pick me up and the protein in the cashew would actually digest.  I started having an anaphylactic reaction - joints swelling, stomach hurting awfully, hives popping out, itching itching ITCHING.  I thought - if I use the Epipen I will have to go to the emergency room, so I took two benedryls and a phenergan instead.  This did drop the swelling and some of the itching and stomach pain but I had forgotten I am wearing a fentanyl patch for pain.  I got a little scared because it did become difficult to breathe.  With anaphylaxis it is hard to tell if the problem with breathing is asthma, anaphylactic reaction, or medication problem.  I used my rescue inhaler but it didn't help much.  I think this was a drug-drug interaction between the benedryl, phenergan and fentanyl.  Too much too quickly.  I guess next time I will use an epipen.  Bigger sigh.


I had my appointment Thursday with Dr. House in St. Louis concerning The Legs and the neuropathic pain and weakness.  I had planned on taking Wednesday to drive up to St. Louis (because I fall asleep so badly when I drive it takes me at least a couple more hours to drive this than normal) spend the night, go to my doctor appointment, toodle around St. Louis some, maybe eat some really good Italian food on The Hill, go to Union Station, shop at the Dillard's outlet store - my usual St. Louis jaunt - spend the night again and drive back home Friday.  With The Problems at home taking precedence I decided to drive up and back on Thursday.  Very Big sigh.

I left at one in the morning.  The normal four and a half hour drive took me almost seven hours.  I had to keep pulling over to take a nap.  Nothing kept me awake.  Lately driving at night has gotten me very disoriented.  I seem to lose directional sense and depth perception.  Just what all the other drivers really needed to have on the road with them.  If I had only had the money I would have gotten airplane tickets to St. Louis, and then taxi'd it to Barnes Jewish for the appointment.  Ah well, I was very cautious driving and as dawn approached my vision difficulties got better.  Sigh yet again.

Fecal incontinence makes traveling a difficult problem.  Normally I won't drink very many fluids for two or three days before traveling, and don't drink very much during travel.  However passing KS#2 became a priority so I was primed full of fluids.  I took extra clothing with me, and was very glad because mid way I had an accident.  Since my external sphincter is not as functional as it should be, I just don't have pucker power.  As I explained to my colorectal specialist once the poop chute is loaded the payload delivers regardless.  I changed clothes twice before my appointment.  I was so glad I had brought the extras!!!

My appointment with Dr. House was at 9:30 am, but I got there early and was seen much earlier.  I had been to the Center for Advanced Medicine for Washington University Medical School, and Barnes Jewish Hospital before.  I saw Dr. Bellyfixer about the digestive issues I had from the radiation therapy overexposure in 2004.  He was quite helpful, and I found Dr. House and his team just as thorough and helpful.  Wash U definitely Rocks!!!

A young neurologist took my history and did a physical exam.  He did notice my permanent hive on my nose - I told him it was my Rudolph the Red Nosed Reindeer spot.  I guess it helps that I had gotten some sun, because that makes it shine more perfectly beautiful.  I warned him I already had several rare diseases, and if I got one more rare disease I might not believe it. Ha!!  I was so tired I am not sure if I made very good sense.  Good lord I had to remember who was president and do math and spell things backwards!  This is a woman who just pooped her pants twice in the last 7 hours.  I don't know if I was competent to do anything that required brain power...  When he got out the large safety pin to poke me with, I almost pooped my pants again.  Ouch! 

I had brought copies of xrays/mri's/ct scans that Young Dr. Kildare had said Dr. House would need.  Nope - didn't need any of them because I don't have a physical issue with my spine or hips.  I brought copies of Dr. Kildare's notes, nope they didn't need any of them.  They were glad that I had brought the immunology labs and some DNA testing I had done (I thought of that on my very own - take THAT Dr. Kildare!!!).  Dr. House and the young neurologist consulted with each other out in the hallway, then Dr. House came in and introduced himself.  Very nice, not like the TV Dr. House at all.  No arrogance, no immediate attempt to blame me for my problems.

Dr. House repeated part of the physical neurological exam.  Thank heavens - no current event quiz, spelling bee or math problems.  I was halfway expecting him to make them more difficult - there is a train traveling east at 40 mph etc. etc. etc.  Whew!!!  We discussed why Dr. Kildare had sent me there, and his conclusion that I had small fiber neuropathy.  We also discussed my problems with my bowels, bladder, pelvic pain, and nerve pain and that I associate the onset with my vaginal brachytherapy treatments in 2004.  Dr. House said he was going to repeat the EMG and nerve conduction tests using their techniques before he decided I had small fiber neuropathy.  If the tests were negative, then I might need to have a nerve biopsy.  He said their techniques were generally more sensitive than the ones I had in Springfield by Dr. Welby.

I got my blood test orders and the nerve test orders and was sent directly to the EMG lab.  The lady doing most of the test took her time and did much more extensive testing and also warmed up my foot saying if it was cold it could distort the test.  A doctor came in after she was done and read the results of her tests.  It showed a very subtle difference between the speed of the nerves in my arms verses the speed of the nerves in my legs. He said that he would probably say I had large fiber neuropathy, but did the needle part of the test which was normal first.  He went to discuss his findings with Dr. House.

The lab got me admitted to their services and I gave about a gallon of blood for some tests for other causes of neuropathy.  Not sure what they were but Dr. House said it would take a couple of weeks to get the results back so they may have to ship some of it off.

I went back to Dr. House's office to see if I needed a nerve biopsy.  He said that they had all concluded that I had large fiber neuropathy (which Dr. Welby had not detected).  I asked the cause and he did not say that it was diabetes, but he did say he just couldn't prove it was the radiation.  I asked him about the weakness and the pain increasing with activity and he said that was normal with this type of neuropathy.  I asked about physical therapy, would it benefit me, and he said probably not.  I asked about medication and he said I was getting what he would have recommended, but that I might double the fentanyl for more adequate pain relief.  He said I should call back in a couple of weeks if I didn't hear from them about the blood tests.  He said I might have small fiber neuropathy also but the majority of The Leg issues are from the large fiber neuropathy.  Huge sigh.

I got out at about noon, which is fantastic with everything that I did, and started home.  I got home about 6 PM and ended up going to a hospital and leaving there at about midnight because of The Problem.  By the time I got home I was so exhausted I was falling asleep standing up.  I slept very late Friday, and a lot of the day today.  Right now I am so tired I am falling asleep writing this - you probably can tell!!!  Triple huge sigh.

I go back to see Dr. House in six months.  I see Dr. Kildare in a couple of months.  I know that I have large fiber neuropathy, which is more consistent with radiation induced plexopathy but can also be from a lot of different things as it is the most common kind of neuropathy.  I also know that I do not feel cold the same in both of my feet.  One does not feel cold the same as the other.  Hoping the warm foot can teach the rest of my body how to feel warm instead of cold!!  I know there is not a lot that can be done other than what I am already doing for the pain.  Maybe a reason for the problem will come up when the blood test results are in.

The Headache behaved pretty well for all the activity.  The Legs and the pelvic pain and KS#2, not so well.  My mind is the same jumble it was before The Problem hit, and all the travel, and all the walking.  Hoping getting more rest tomorrow will help.  If this post is a little goofy, that is because I am majorly goofy tonight.  Gonna try to get some sleep.  Biggest Sigh Ever!!!

Autonomic Nervous System

Sympathy for my Not so Sympathetic Nerves

I haven't felt well this weekend, as often happens when I don't feel well I research.  Not sure what I think this accomplishes but inwardly it often gives me a feeling that I am still moving forward no matter how stalled out I am in real life.  I am always happy if I think I have discovered something that explains a symptom I didn't really understand before.  Again - this can be just my imagination working overtime, but at least I'm not sitting here stuck in the "I'm in pain" loop.

If you have never experienced the "I'm in pain" loop my brain thinks like this:

"I'm in pain"  (sad and wimpy)
"Ignore that!" (snappy and aggravated)
"My mind seems stuck in a loop!!??" (amazement at my genius)
"Duhhhh......" (drool from slack brain)
"Was I supposed to ignore something?" (looking for a brain cell to light up)
"I'm in pain" (see above)
"Ignore that!" (see above) ....ad infinitum [you get the picture]

It's like trying to bat a mosquito dive bombing your ear.  You wave at it and smack at it and its annoying as all get out but you just can't get rid of the little monster.  When I get stuck like this it becomes impossible to reboot my brain, so keeping it occupied (I have discovered scholar.google.com and http://www.quertle.com/ WooHoo!) keeps it moving forward.

My choice of research this weekend was my nervous system.  Dr. Welby thought it was very interesting that my GI specialist at Barnes/Wash U in St. Louis (Dr. Bellyfixer) was certain that my motility and other digestive issues were from nerve damage that controls the bowels.  In researching the innervation of this region of my body I found that is controlled by the autonomic nervous system, and the part that controls the bowels comes from the lumbosacral region of the spine - the part that the radiation treatment seems to have harmed.

The autonomic nervous system is made up of two to three different systems (there seems to be some disagreement about the third - whether it is a separate element or not).  The sympathetic nervous system governs intestinal peristalsis and some bladder functions.  The parasympathetic nervous system controls the sphincters, incontinence issues and non-specific abdominal pain that may be felt in the skin. The enteric nervous system works with gut motility and some reflexive digestive processes.

These systems work with each to complete the digestive process and to signal the body when things are right and when things are wrong with digestion and organs in the pelvic area.  If one gets out of synch they are all in danger of malfunctioning.  It is sort of a "push me pull me" type of relationship so if two sides decide to push instead of one push and one pull you get all sorts of problems happening. Sorta like The Belly and me!

The major nerve signalling chemical used by the autonomic systems is acetycholine.  One of the drugs which works the best for my motility problems is an older drug, Pamine (methscoplamine bromide) prescribed by Dr. Bellyfixer. One of the Dr. Dunces sneered at me in a condescending manner when I told him that this was really the only medication that had helped me so far.  I guess Dr. Bellyfixer (a department head working at one of the top ranked hospitals in the country) knew his chemistry and neural signallers better than all the local Dr. Dunces put together.  Pamine is an anticholinergic, a medication specifically formulated to inhibit acetycholine in the nervous system so I guess it stops some of the over signalling that is going on in my bowels!  Now I know why it works, and why it was prescribed. 

The autonomic system is considered part of the peripheral nervous system which is basically any nerve in your body that doesn't come directly from the brain or spine.  The other part of the peripheral nervous system is the somatic nervous system, which deals with touch, pain and movement.  The somatic part doesn't work very well for me either, but I think that type of damage is easier to diagnose due to weakness and changes in sensation and pain.

Enough nervous system anatomy for today/tonight.  My pain has decided to calm down for awhile so I'm going to try to go to sleep while I can!  WooHoo!!!  Trying to go without medication so I can jump to work tomorrow early!