Pills, Pouches and Problems - Oh my

Well I've started my week with a nice little conundrum. I was on my k-pouch webboard reading a post by a woman who had a couple of pills pop out of her stoma several hours after intubating. Firstly this is an issue because the kock pouch is a continent pouch which means its not good when stuff comes out when there is no catheter in the pouch (although we later determined that the pill probably was pulled into the valve by the cath and then just worked its way to the surface). Then 2 days later another one came out and then a few days after that, another one! Well this posting prompted a lot of speculation on what sort of pill it was and why it was coming out now. This lady said that she very rarely takes pills all her vitamins and calcium pills are chewable because pills don't dissolve well in the pouch.

Well this is news to me! Pills don't dissolve in the pouch?? Oh no and they can't exit because they won't fit through the catheter. And this of course prompted a couple of stories by other k-pouchers who were in the hospital when other people actually had to be opened up again and all these undigested pills scooped out of their pouches. One lady who takes a time-release medication for a very serious condition actually ended up overdosing because the pills all hung out in her pouch and released the medication at once. It made her very sick.

I am 3 1/2 months now with my k-pouch and how many pills have I taken? I started to count, well I've been on 6mp since June (thats 1 every day 2 months = 60) then I started my multivitamin and calcium supplement about 3 weeks ago (thats 2 every day = 40) oh and I take tylenol fairly frequently, probably 4-6 a week since I got off.... OH WAIT I took about 60 pain pills in my first month post-op!!!!

So now, as you can imagine, I'm freaking out. Geez I could have an intestinal pharmacy going on! So I do the only sensible thing I can and that is STOP taking any more pills (except 6mp) Thankfully I have a scope in 2 weeks so whatever is in there we’ll be able to get out quickly. So I email my GI asking about the whole pouch-pill-problem. To which he responds almost immediately (he's a great doctor) and here's what he says:

Hi, Katie, Yes, we do have patients with pill stuck there. There is a pt, I removed 224 tablets from the K pouch with endoscopy last year. Yes when we do the scope, if there are pills stuck, will remove them.

I'm not sure what my first thought was upon reading this email. Surely I never doubted that if there were pills in my pouch he would take them out. Relief of course in discovering that they can be removed via the stoma and I wouldn't need surgery if I do indeed have pills in my pouch. But what almost made me laugh out loud is that fact that it sounds as though he’s somewhat amused by the thought. Now I’m friends with this doctor (as good friends as patient/doctor can be) and I like him very much. I feel I know him and his personality pretty well so I’m not insulted or scared by the fact that he seems to find the situation funny in fact it does something to elevate my fears because if he were truly concerned he would’ve said so at once. However I’m still a little anxious because of the 6mp and wondering if there is a liquid form available or if I should start crushing my pills so I emailed him back my concerns. He replied again almost immediately (did I mention he’s a great doctor?)

Nope, Katie, most pills (medicines including 6MP) are quickly dissolved in upper small bowel. Only these dietary supplements often gave us trouble.

Now here it is about 24 hours later and I’m feeling better about it because it doesn’t seem likely that there will be many (if any) pills in my pouch because I haven’t taken a lot of supplements and hopefully they really are digested but I still can’t help pondering it all in my brain. And God has gifted me with a very great imagination that I sometimes wished I could put a bit of a blanket over.

And so this creates a small amount of trepidation for me and my up and coming scope. Will there be any pills in my pouch? If so, how many? How long will it take to get them out because it’s going to have to be one at a time if he’s taking them out through my stoma. And I can just envision myself on the gurney looking up into the TV monitor and watching as the Dr starts fishing them out. And I’m gonna be full of air and groaning because of it and the nurse will be saying “ok you’re doing great, breathe in… breathe out….” And I’ll be gripping the handrails and the Dr will be saying “65…66….67….68…. wow there are quite a few in here…..”

Good Grief. Imagination in overdrive!!!!!!!!!!!!!!!

3 months

My k-pouch is officially 3 months old today! Hooray! Feza and I are doing great and I love having him in my life. Yes my stoma has a name and its a "he". You can call me strange but only because you probably don't know anyone else with a stoma. But, in the world of ostomies stoma naming is incredibly common, probably 80% of ostomates do it. Its a world apart from you, I know. If you'd like to sneak a peak into a day in the life of an ostomate than I encourage you to read some posts on this forum from the united ostomy association or how about this one on the j-pouch group

I know you've probably heard me say it a million times but for me it isn't old yet I'M INTUBATING 4 TIMES A DAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!! That's the coolest thing in the whole world. Sure, you'll hear me grumble about Feza occasionally, its in the nature of a stoma to be troublesome and if he's anything like his namesake than he's got quite a sense of humor too. But really, he's a blessing and I'm so grateful to have him.

I am also 12 weeks post-op now and really feeling quite well. I still have a day or two here and there where I don't feel well, but I'd say about 85% of the time I feel great. It's nice to feel really healthy and well again too! I have most of my energy back now, though I haven't started exercising again (I used to walk 2 miles 4-5 days a week) I'm sure I'll start again soon once the weather lets up a bit.

In the interest of full disclosure I'll have to admit a couple of things that aren't going so rosy. #1 is I'm having some separation between my stoma and my skin, a kind of ravine (if you will) between my stoma and the rest of my stomach. The actual term is mucocutaneous separation. Well, about a month ago I went and saw the ET nurse (enterostomal - means special nurse trained in ostomies) and she said that I need to pack it with a special powder every day and if it gets worse I gotta see the doctor. Well, it hasn't gotten better and I really can't tell if its gotten worse or not. Some days I think yes and other days I think no. Whats a girl to do? I don't wanna make another trip to Cleveland just to have the Doc look at it and say "keep packing it with powder and if it gets worse call my office" No thanks. Its one thing to go to the nurse at CC and its another thing to go see the doctor. This is not a fear issue, please don't accuse me of that! This is a time issue. When I went to see the nurse I was at the clinic less than an hour - that's practically unheard of! But when you go to see the Doc, well, lets just say that your afternoon is shot. And if you need to go, well its worth it, but if not, well....... I'm just not convinced I need to go. And though I used to be the kind of person who would put off going to the doctor, I'm not that way anymore and I'll be on the look-out.

Well #2 problem. *sigh* Its my OTHER incision. My stomach has healed nicely, lovely really and my jp drain wound looks much better even at 12 weeks than I thought would ever be possible. But after sitting for 6-8 hours I'm still a bit sore and there's draining. Still. I was told it could go on "for a while" and its beginning to bother me. These types of wounds can be notorious for taking their time in healing and especially since I thought the draining would all be over after this surgery I find it very discouraging. My surgeon says its normal and I believe him, I'm just tired of it.

Oh and I just found out I'm going to have my pouch scoped Sept 12th. I called to try and schedule it for December and it wasn't ordered so I emailed Dr Shen to ask him if he still wanted me to have it. He said 'YES! Please call my office again tomorrow' But I didn't get the chance because they called me and they said OK you're all set for Sept 12 at 11am. I just said OK. But when I saw him in June he said 3-6 months and I said I was leaning toward 6 but apparently he was leaning toward 3. Oh well. It'll be interesting to watch anyways..... maybe I'll have another funny stoma-spewing poo story to tell (if you don't know what I'm talking about, check out my Adventures in Gastroenterology post from March).

So here I sit with my 3 month-old pouch, enjoying feeling GOOD and happy that it appears that my health problems are behind me! No matter what though, to God be the glory.