I designed some colon cancer shirts. I will do some more, especially FAP related. I am just trying to make shirts that some of us younger adults would wear. I am over the ribbon colors. Still stuck to blue.
Buy here: www.fightcancer.spreadshirt.com
Preview:
At this point I am really fed up with damn doctors and their taking insurance, reading records to take your case or just never hearing from them again. I have been looking for pain management for over a month now. Baylor where I go for everything else does medicine pain management but their clinic takes Tricare but not the Physician and that is 130 every time I see him so could get costly a month. I am out of choices many won’t take me on being an outside patient on pain meds or just won’t give out meds in general. I can’t get injections in part of my bodies like most suggest due to lymphnodes being removed and that can cause lymphedema.
I now found out at my new Massage therapist who was trained at MD Anderson why you have to go to a certain Massuse that deals with cancer or past cancers. Same thing you have to do more of a cup and hold on the legs and part of arms to prevent lymphedema from occurring instead of the kneading and deep tissue most due in a treatment. What is lymphedema you might ask? Here it is in short.
Lymphatic obstruction is a blockage of the lymph vessels that drain fluid from tissues throughout the body and allow immune cells to travel where they are needed. Lymphatic obstruction may cause lymphedema, which means swelling due to a blockage of the lymph passages.
I am spending the last of my cash on Visceral Manipulation with a local Rolfer in hopes that can break up any adhesions and get rid of pouchitis if still present. I don’t make good money like I did before I got sick. There is something wrong with this system, it is very broken. As an American this country is starting to make me sick.
So at IKEA I found this super cool glass vase that is now my tube hider! I was using the container I got from the Palms to irrigate with and there is nothing cute or sexy about that. This is hip and perhaps my husband won’t feel like our nice bathroom is a medical suite.
Other than that fun find I am “ok”. My pain is still very high. Feels all surgical. If I go off the pain killers the lowest dose I have got it down to it hurts to sneeze so I don’t think that is pouchitis. I intubate every 8-9 hours so three times a day. Pretty good. I feel since I intubate less my stoma is having a difficult time opening up I guess you can call it that for the last inch of the tube to go in or it feels blocked adhesions ? Did my pouch move? I can still drain it just takes longer. I am using lidocaine 2% viscous to ease pain I have.
I am hoping a miracle will happen and by March pain will get better. I am using
donut cushions to take pressure off my lower half if sitting for periods over 20 min. No drainage really. Maybe a nose buger woth of mucus if that. If I do have any light moisture it is at night after irrigating a lot to clean my pouch. So for now I just use regular bandaids that a nice lady who lost her pouch and has an appliance, donated to me off of jpouch.org
I have a new GI she is my age and deals with GI cancers. She will be scoping me in June for my annual digestive check for polyps and tumors. Little nervous. One of her patients has 2 feet or inches? Left of his small intestine is on TPN for life due to short gut syndrome and now has a tumor that showed up in the small intestine due to FAP. Hopefully I am good.
So I did not get to go watch the UFC fight tonight like I wanted since my bladder was calling the shots today. Stupid IC!!! I wonder if I am doomed to have a fucked up bladder and pouch for life or be stuck on meds forever to manage it all.
So I take Bentyl for gas and I try not to take it too often since it has side effects. Mainly drowziness. I have been a huge flare due to my cystitis so took a magic blue pill. It actually helps the IC flare and calms my BCIR. Interesting. Maybe more ICers need to try Bentyl…
Oh I am being so lazy with this blog but I blame that on the great guys that got me a kindle fire. Between that and my iphone blogging just sucks pecking away at keys.
Heading to Florida. Having my pouch scoped to make sure things are ok and visiting family. I am doing ok though. Still have pain but not as bad but enough to still be on Oxy. Better though and at the 5 hr intubation mark life is easier.
No more sugar free candy for this chick! OMG that ingredient gave me the runs and awful gas when I had a colon so thought I’d try it now. My pouch pissed that stuff out and the gas build up sucked! Couldn’t make 5 hours, more like 3.5 due to that.
Will write a proper update from Miami this week!
How to Make a Homemade Electrolyte Drink
via How to Make a Homemade Electrolyte Drink / Nutrition / Healthy Eating.
I am going to start my blog off good for a change, then let is trail off into the bad since not a ton of good has been going on. It’s weird, in the beginning when I ate a meal I could feel it move over to my pouch from my stomach. Now I don’t really feel it anymore unless what I ate produced gas, then I can feel the rumble move just under abs over to the pouch, that always is a bit weird. Maybe I am just used to it now, who knows. The one way I still really feel it if I chase it with my usual glass of apple juice (grape like they recommend doesn’t work for my pouch), but that is awesome for me because with IC, my bladder can handle apple juice but the grape sends me into a flare from hell.
My poop still doesn’t really smell. Even when I eat eggs it is nothing like having a colon. I keep hearing it will get worse over time and it smells way worse than having a colon, so I am waiting, patiently. Maybe people with UC tend to have it smellier than us people with FAP? Just a thought. In case it does get real smelly over time, I learned from the lovely people on jpouch.org that the odor drops yo use for ostomy bags can be put in the toilet bowl. I have a box of Hollister travel size packets of this exact stuff since I thought I was having a jpouch with a 2 step procedure where I would have a tem ileostomy for a bit. So glad I didn’t throw them out! I experimented with it, my poop smelled just like coffee one day after drinking starbucks. Wasn’t a gross smell but still a smell, dropped a few drops in there like magic, no smell! So I suppose if I ever get stinky and want to be polite to the next person if at a house or gathering, etc. I will keep one with me.
Since I have lost so much weight (not complaining) but I just want to lose it slower so I don’t risk my pouch moving I started to eat ice cream, maybe half a pint after dinner. Well since I as a hardcore paleo eater I still don’t eat dairy ice cream. I usually get coconut milk ice cream but for a change I decided to try almond milk chocolate ice cream. Well plain almond milk to begin with will clean you out if you are ever constipated or want a runnier stool. This stuff was like liquid chocolate milk came out, made my pouch super happy! Coffee usually does that for me too but this was far better.
so last yesterday I followed up with my oncologist, clean bill of health colon cancer area since no more colon and no cancer penetrated the wall, hell most were cut away with clean margins prior but you never know what you are going to find until you take it out. So, this lovely RN at the Palms called me up, you are supposed to do a weekly check in with them so they know how you are doing, so she called me. Told her how I cry all the time and been down in the dumps, etc. Since I am a first timer, just had my colon out, had my diagnose just 2 months prior and went through such a HUGE surgery that it is normal to be depressed and some people just have more pain than others, perhaps try Cymbalta. Since Cymbalta treats depression and also is a pain blocker so I could try to get off the narcotics. So my oncologist wrote me a script Cymbalta and I popped a pill around 6:30. Now listen to me… No matter how bad you think you have it now, that DRUG IS EVIL!!!!! Nobody should be taking it.
My mother is the type who has been on ant depressents and lithium for awhile so when I told her what was going on with me that is when she said she never takes new antdepressents that are on the market, only oldschool drugs. Well fuck me this was a damn nightmare. I never took LSD but this is what I imagined it to feel like. My pupils blew up huge, I kept throwing up, my whole body had turned into a cold clamey mess with the metal taste in my mouth. My eyes felt like they were wigging out, going back and forth so fast I felt like someone put LSD in my eyes. Couldn’t eat, couldn’t drink. Just so sick I felt like I was dying. So around midnight I was past the dehydration mark of returning for someone without a colon, I had leg cramps from hell and just plain sick. So I went to the ER and got some meds. That experience was ok. The check in nurse was fascniated about my BCIR and my doctor that I had assigned to me knew about pouches, his BFF one has one, due to lupus, guess lupus ruined his colon. Always weird to hear the rare things about people’s colons going bad instead of the usual UC, FAP and Cancer. They gave me reglan and that drug maybe didn’t interact well with the ativan and zofran I took but I was so anxious, I wold get a sudden urge to move real fast, my legs or arms, and a weird sensation would travel up my body. So they came in with a big bag of fluids to hydrate me and some benadryl. Well I passed out at around 2:30 am the doctor and my husband were standing there and I said “What’s up?” I guess I didn’t realize I was O U T and they laughed so hard at me. haha. Went home and still feel the drug in me even with a 12 or is it 24 hour shelf life. Still feel like I have the shakes and no real appetite. Ate an english muffin since I had diarrhea too and want to slow that down.
What really hurts? The chunk of skin that came off with the bandaid they put on over the IV spot. Took the pink colored thing off earlier and part of my skin went with it. OUCH, fuck your paper cut if you have one, this trumps that!
So how bad I thought I had it, little fresh air and coffee with some narcotics on the side is all I need. I rather cry a lot that ever EVER go on some more drugs.
Donations for Vanessa
http://prox2.spreadshirt.com/