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.

Daylight Eye Trouble

Scary Scotoma

Woke up this morning feeling mighty fuzzyheaded.  Sure now it is the neurontin that I have started up again.  Trying to get ready for work this morning I experienced almost an hour of a visual scotoma that took up my entire peripheral vision fields, leaving the middle part clear until the very end.  It was like a fluctuating curtain surrounding my central vision.  I was not able to really see what I was doing so I just sat in the bathroom where I was showering until I was able to see again.

I was very confused afterward so I sat around for about an hour or so to see if the confusion would clear and it did not.  I may be having a worsening of The Headache and just not feeling pain as my left eye was not wanting to behave either.  I gave up around noon and called in and told work I would not be able to make it.  I am so tired and done in I just want to give  up entirely but I will recuperate this evening, brush myself off, and try again tomorrow.

I never had a visual scotoma in my life until I took Topamax.  I was very droopy and tippy on Topamax and I started experiencing scintillating scotomas.  They disappeared after stopping Topamax, and I associated these with the intense eye pain that Topamax induced as a nondesirable side effect. I now occassionally have an episode of scintillating or non-scintillating visual scotomas, so not sure if Topamax made a permanent change somewhere in my hardwiring or if The Headache just likes to mess with my vision to throw me off stride.  I don't seem to have an increase in The Headache pain when I have these - I probably should check my blood pressure the next time (if there is a next time) this happens although I doubt if there is any physical reason for these other than The Headache.

I slept most of the day today.  At least I remember what I did today!!  Yeah!!  I'm ready for my brain to reboot and start functioning in neurontin mode again.  The Belly is not happy tonight, but I'm happy because The Legs are still - no dancing in pain for me this evening!!  Yeah again!!!

I have an appointment with Dr. House at the Washington University Neuromuscular Clinic on April 7th at nine AM concerning The Legs.  This is in St. Louis, a good four hour drive away, so I guess I will go up the evening before and stay at a hotel.  The Great Big Corporation I worked for had a base of operations in St. Louis a few blocks further downtown so I am very comfortable finding a hotel nearby.  I used to go there on a regular basis when I was a project manager for them.  I could fly in and back but flights to St. Louis from Springfield Missouri are terribly expensive - I guess because business customers will pay whatever the rate may be if there is a need for the flight.  I think this will be another dead end for me concerning The Legs but I promised myself last fall I will be persistant in trying to find a solution to The Legs.  Washington University has a world class neurology department so hopefully if there is anything to be done Dr. House will find it.

I go to see my PCP next Monday for a followup on the neurontin, and to see how I am doing otherwise.  I am glad he is a great advocate for me with other doctors.  He tries different approaches if one is not working, something I have not had good success with convincing specialists to do.  Just wish I didn't have to see him as often as I do.  There was a day (pre cancer) when I only went to the doctor a couple of times a year to have my synthyroid dose checked.  Now I go to the doctor way way way too often in my estimation.  Too many systems not working right.  Big sigh.

Going Down In Flames

Me and My Pancreas

I now have an appointment with Dr. Gnome in St. Louis on October 16th. I talked with his nurse, and they are requesting more records from my gastroenterologist's office since they didn't include anything from my recent hospitalization, or some of the lipase tests I have had over the last nine months.

Wasn't able to work a full day today as The Belly hurt bad enough that the mild pain killer I took at work didn't touch it, so I drove home and medicated with stronger stuff. This still did not completely kill the pain but it made it tolerable. The pain seems to increase in the evening, so the second dose I took at about 9:30 just isn't doing too much. I'm hesitant to go to the doctor about this before the Dr. Gnome visit because I run the risk of hospitalization again.

My daily meal plan at this time is one meal each day of a poached egg and a piece of toast with jelly no butter and about a third of a cup of applesauce, eaten with pancreatic enzymes. Starting to feel the effects of not being able to eat, rather weak, but I have had to do this for months before so I know it is possible. Have been hydrating much more as I was instructed in the hospital but this has worsened both the diarrhea and the incontinence issues I have from the radiation therapy.

I am going next Tuesday to Washington University in St. Louis to be seen concerning the long terms effects of radiation therapy. I found information while researching this for radiation neuritis in the lower spine, and this seems to match many of my leg symptoms. The problems are not resolving, but keep getting worse and I am concerned about what the end result will be. The weakness is a big issue, since continued standing and walking make it worse, making it harder and harder to travel and to do my work when I am at a client location where I have to walk and stand a great deal. I'm hoping these physicians will have some new ideas on what I can do to make the symptoms better tolerated even if we can't make them go away.