my update..

well for those that have followed me for a long time, her is an update on the old randynoguts!

last I posted a good update was about a year ago when I started the new drug for short bowel called Gattex. well it has been a year on it and it seems to be working. at my 9 month colonoscopy I was told that my little absorbing nubs in the small intestine looked like a shag rug. which is good, means they have grown very much in size, allowing for more absorptive area . so much that I have been able to reduce my TPN from 2 liters every night to 1 liter 3 nights a week, with 1 liter salines on the other nights. still cant get the fluid to absorb as much.

after 16 years on it ,it is a nice break. however if I stop the drug it does not stay and goes back to the old way, meaning back up on the TPN.

the problem is the pain with the shots every night. it is a small insulin needle but the drug burns , not as much as humira, which I'm still on, but it has its moments.

also have a stricture in the colon just upstream from the rectum. was down to 9 mm. or 3/8ths of an inch. I have been having colonoscopies every 3-4 weeks to stretch the stricture without popping a hole.. I am up to 15 mm now. easier going, but still plugged . don't know where they will stop.

also had a stricture just inside the anus, and had to have that stretched by finger once a week for about 5 weeks. oh what fun. physical therapist does that, with special training.

but I'm still on this side of the grass so no big deal right?


so anyhoo, I have tried to be here more often for a while, I was just burned out for a couple years. I read a lot of posts too, so if I think I can help I will.. randy

Post Edited (randynoguts) : 4/3/2016 4:48:55 PM (GMT-6)

Although what you describe sounds torturous in some ways, it also sounds like you continue to move forward. Your humor and humanity always makes me smile. I do respect the need to get away as I did for a time too. However just seeing your screen name gives me a smile...take care

n-cupa, an insulin needle is about 1/4 inch long (6-7 mm) for you foreigners! ;o). very fine and the drug is just 4 ml per dose. I do it as slow as I can, but it just burns.. it is very much like my humira pens, just not quite as bad but 7 time a week. . also I have from decending down. so 1/2 maybe.

just the thing is I really cant take anymore out without major difficulty all around so the are trying the stretch.. the only saving grace is I don't have to prep every month, just liquids the day before and a quick enema at the hospital, right before.. and with the regular drugs not working for me any more (fentanyl and versed) I get the whole anesthesiologist with propofol thing. best out cold drug ever for scopes! only bad thing is I have to travel to seattle for them and a separate appointment with anesthesia before each one.

Jeez, I had thought at least your colon was okay. There's not much bright side to look on there; the only one I can think of is that you get knocked out for the dilations! I'm a bit nervous about developing a rectal stricture in the future, 'cos I know from j-pouchers' descriptions there's no way I can face having it dilated with a finger. They are just going to have knock me out.