I really hate saying I am on a Paleo diet. I don’t think the SCD is the way to go since their use of dairy boggles the brain. I never had pouchitis but I battle small bowel bacteria overgrowth that forms in the gut so people ask what diet to follow. I bet 90% of Americans have small bowel bacteria overgrowth but don’t know it. If you are eating processed food and sugar, most likely you do have it but that colon of yours makes it easier to live with.
Here are some links to check out.
Don’t forget unless I haven’t told anyone! To visit my food blog, where I post what I might be eating, or cooking. Things that work good for my BCIR and stubborn digestion. I hope after I go to Cleveland Clinic on the 25th they can give me tips on enzymes to help digest better. Tricky with half a stomach and no colon and a gassy pouch due to bacteria overgrowth.
So enough on rambling. The url is http://www.syrupandsalt.com I just wanted to separate the stuff. Food and medical since I was posting some food items but I felt it was competing with my daily life in the world of FAP.
You start to forget things as time goes by. Sometimes when I am on the toilet I try to remember things I hated about having a colon, even though I miss mine every day. I try to think of stuff that I won’t miss and benefits to having a Front Dumper AKA the BCIR
Things I don’t miss about having a colon
1. Whipping your ass and having cheap toilet paper tear getting shit all over your finger. COME ON IT HAS HAPPENED TO ALL!!!
2. Taking a dump in a public restroom only to realize there is no soap in the bathroom to wash your hands.
4. Being bloated
5. More IC Flares
Some good things about a Front Dumper
1. Shitting in a cup in my car if I have to.
2. Shitting in a bush if I have to, standing up. Be J E A L O U S, boys. No penis envy here! HA HA
3. Being able to hold my poo unlike with a colon.
4. Not having shit backed up in your body all the time. Once I drain my Front Dumper I am empty.
5. Never having to use one of these http://www.banterist.com/archivefiles/images/squat-toilet.jpg
Things that suck about continent ileo pouches
1. Gas that moves around and can keep you up at night. I am starting to learn to sleep through it, sort of like my bladder pain.
2. Gas since you can’t fart with no asshole.
3. Loud guts that you can hear over a movie, especially if there is an infection.
4. My small intestine moves around way too much now, usually related to gas and bacteria overgrowth I keep getting.
5. Missing the taking a LARGE dump, the wonderful feeling that shaves 5 lbs off your body.
6. Pain. That I hope will one day pass.
7. Sadness, depression and constant morning. I have a daily pitty party.
If you think about it. Plastic is destroying the earth so why even get an ostomy? My tube that I use to intubate my BCIR lasts up to 6 months. That alone should be a reason to reverse. Ostomies are also just ancient medicine, I don’t care who argues that but more people need to get progressive so more idiot nurses and doctors know how to deal with continent ileostomies. GET WITH THE FUCKING TIMES PEOPLE! The internal pouch as been around since the fucking 70′s, yes THE 70′s!
Having my catheter hooked up to a drainage bag makes me realize that ostomies suck ass. Fuck having plastic stuck to your body. I rather wear my real intestines for a pouch.
Everyone says there are issues with internal ileos but let me tell you what. I have friends that are far worse than me that have jpouches and people with ostomy bags have just as many issues. There is no perfect surgery to have once the colon is removed. They all suck in the end… Nothing is as fabulous as the colon. At least I loved mine, it rocked.
So there is my soap box rant. Fuck ostomies. Oh and they STINK!
I thought I was bad in NY but I am way worse being back in Dallas. Cipro isn’t working so I guess I have to switch anti-biotics. It works for about a week then I have pouchitis again. Wonder if this is it for life because I am over it. The gas is so bad it puts so much pressure on my bladder I can’t hold anything. Once again my life revolves around the damn toilet. This town must just be toxic! I mean it is stupid Texas. Why did I ever move here to begin with? Major regrets.
I wish I kept my colon, I really do. Word to the wise, NEVER remove a body part unless you have to.
So met with my surgeon yesterday and we went over things. Things like my polyp that had cancer is so low he isn’t sure he can cut past the line to do the jpouch. Do I even try at this point or just go to St. Pete for the BCIR. I am so over doctors and decisions. I refused a bag and my surgeon isn’t a fan of the resevoir so he could have his colleague do it or I can go to St Pete, where they specialize in the BCIR and on top of it a urologist will be in the OR to examine my bladder and see if he can find out what is causing my Interstitial Cystitis such as scar tissue from my gastric sleeve. They also do the sleeve there so they can figure things out and they think it is related. FINALLY someone has listened to me about that scenerio.
Anyway. Do I try the jpouch then do the BCIR or say screw it and do the BCIR. Ugh.. really burned out on seeing doctors non stop for this crap. Every day lately now.
Also I might not be eligible for jpouch if my full pathology comes back with stage 3 cancer. Still waiting on path. My surgeon said you can’t have a jpouch if you do chemo and radiation but yet my friend just had a jpouch done last week and had chemo and radiation for her colon cancer… For the BCIR, if my pathology comes back bad then I have to do chemo/radiation first before it.
My surgeon also said leaving a bit of rectum in is risky since I could have rectal cancer spread or go away. He has seen both happen. MD Anderson has also been pissing me off with their holier than though attitude.
riskay bizziness! Smiler
We all know there is no devil but kegals might be the runner up.
I understand you have to do them prior to having your colon removed but most people don’t suffer from IC. Kegals put you in flares, ruin the bladder. So lately I am suffering and hate taking pain killers so sucking it up but I hate kegals and not sure I can do them much more. The last time I was put on a kegal daily rehab work out I couldn’t walk down stairs, my bladder felt like it was leaking, would or the pain was horrible.
I leave for Jax Sunday and come home Wed. Maybe a small trip will help even if it is for court. MD Anderson called me back after I broke down and told them I AM NOT JUST A STATISTIC on the phone to this lovely admin there. I believe the woman I was dealing with who is far from nice got yelled at. OF course they said Oct 17th when I am out of town. I asked to please find me somethig after the 21st since I come back on the 19th and the 20th I meet with a surgeon here that does the Kpouch.
I was never given many options and lately I am finding out about the BCIR, Kpouch and TPouch. These are options that people say are a high-risk failure procedure but more I talk to people who have them, they aren’t. I am still going in for the JPouch but if something doesn’t go right (and I refuse to live with a permanent external bag). Perhaps these are options, options I have been ROBBED of since nobody told me. I could have gone into surgery next month not knowing about them. Surgeons and doctors that don’t mention these just to give you a quick fix surgery, plain ‘ol SUCK BALLS. I just with the JPouch could be done in a one step surgery. I am so burned out that more surgery is just exhausting.
So far I see a surgeon today that is ranked one of the top 1% in colon rectal surgery, tomorrow with an oncologist then next week the Kpouch surgeon followed on the 24th by my current surgeon, the one I do not want to stay with and booked surgery with. Then that following day with a Neurosurgeon for this small brain tumor, that is nothing really and according to my doctor if we gave everyone scans we’d show a lot more people walking around with these. Still doesn’t make you feel warm and fuzzy.
My mom wired me money to get my hair cut and dyed. I love that people with breast cancer can get their wigs styled and cut by people. What about the people who aren’t going through chemo yet, are broke and just need to feel better about themselves. Why is the color pink cool? I want to paint the world blue. I guess ass cancer is not sexy. My hair is out of control dry and frizzy, unmanageable and the roots are about 2 inches I swear. Taking it down to my natural color and cutting a good 2 inches off. If they tell me chemo later on it won’t matter anyway so might as well start cutting now and try to feel pretty since I feel miserable and starting to look it.