Skip to main content

I read a couple of other posts from people on this topic here but they seemed to go back to 2013 so I thought I would start a new one here.

I moved from my home province across the country to a different province back in September for work.  My GI in my home province made a referral to a GI about 4 hours from where I currently live.  I live in a somewhat rural area and I guess the major GI group is there.

I have yet to see my new GI but I have been schedule for a Gastroctomy & Pouch-oscopy late next month.  I have had regular 'pouchoscopies' (whatever the procedure is called when you have a j-pouch)!  I have never had a Gastroctomy yet.  They have given me all the preparation info. and they told me that I would need to be put under for the procedure.  For years, I never bother getting sedated for my pouch-oscopies because I can handle the discomfort and I usually have to drive myself to and from.  Aside from a little discomfort, I never have a problem.

With my upcoming procedures (I will have both done at the same appointment), it is a little more difficult.  My 13yo daughter lives with me and there are just the two of us here.  The appointment is on a Wednesday after so I will have to take her out of school, go to my appointment with her, spend a night in a hotel after the procedure, and then return the next day after I am legally able to drive again.  I suppose I could leave her on her own overnight (she is old enough and capable), however, they initially said I would need another adult to take me from the hospital after I'm done.  I don't know anyone there well enough to have that done.  So, when I asked about my 13yo being the 'adult', they seemed willing to work with me on that.  I also asked if I could avoid the anesthetic...  They didn't completely dismiss the idea but mentioned that it might be difficult because I may have a 'gag reflex' etc that could be too much to overcome.  Knowing me, I have a feeling I would have too much difficulty, unlike the procedure going up the other end of my body!   My dad, a former Pediatrician, also told me that he has had 2 or 3 of them in the past and that I would need to be put under. 

So, back to square one, should I take my daughter or leave her at home?  I would prefer the latter so that she doesn't miss school and have to sit around for a day and a half.  If the GI allows me to come alone then I may do that.

As far as the procedure, I am quite apprehensive.  (A) being put under, and (B) just the thought of what they are going to do.  I am also not sure why I am having one done because I have never had one until now.  Isn't that strange give my history?  What is the purpose of this Gastroctomy?  Is it to check my stomach and small colon for cancer or other issues? 

There are days / times when it seems that everything I eat just goes right through me.  There are other days when I feel slightly more normal.  Usually after I go through a bout when I have a large number of consecutive bowel movements, the next few hours or day, things tend to slow down.  It could be that I am eating less and that mostly everything has passed through.  But usually I think my body kind of adjusts and it slows the digestive process somewhat after that.  It may also be the codeine I take daily that is working after being taken on a relatively empty stomach. 

I used to weigh consistently around 162-166.  The past year my weight is sometimes down as low as 144.  This is around the same as after my Total Colectomy in the year 2000.  I don't feel any worse for it.  I have definitely lost muscle and strength but I am working to try and get it back.  Maybe I'm better off at 150 or slightly lower?  I wasn't really overweight before but I had a little extra fat and definitely greater muscle mass.

I am still taking Simponi but I haven't noticed any improvement so far...bioscript 

Thoughts on some of these matters?   Those are the Simponi boxes I've received since  started a few months ago!

Attachments

Images (1)
  • bioscript
Original Post

Replies sorted oldest to newest

I had a gastroscopy a few weeks ago (technically an EGD - esophagogastroduodenoscopy), but I sure as heck knew why I was having it. Unless you have upper GI symptoms suggestive of something that needs further investigation the procedure may be questionable. Can you call and ask why it’s been ordered? I wouldn’t get confrontational, but I also wouldn’t have the procedure without knowing why I was having it, even if I lived next door to the endoscopy suite. The sedation is necessary but not a particularly big deal. I hope you get this worked out.

I agree with Scott- you need to talk to your former GI about the reasoning for the procedure since it’s going to be a major pain for you logistically.  Perhaps he could refer you more locally, or do an alternate investigation.  There are pill cameras you can swallow now that don’t require any procedure beyond an office visit.  Or a CT or MRI.

If the sedation is the same as what’s used for pouch scopes, then it’s not a big deal.  It’s just sleepy time for an hour and then you’ll be awake and capable.  I find that my memory is a little hazy for an hour or so following the procedure.  But you won’t want to drive - hence the adult requirement.

@capper posted:

As far as the procedure, I am quite apprehensive.  (A) being put under, and (B) just the thought of what they are going to do.  

You need to distinguish between conscious sedation, in which you are NOT "put under", and anesthesia (usually propofol) in which you are. I believe, although I am not certain, that both are options for this procedure - as they are for a pouchoscopy. I uniformly refuse propofol, which will be pushed on you, because it's retail cost is prohibitively expensive, and for other reasons. You have a say in what is put in your body and it is up to you to voice that say. Many patients meekly accept, like sheep, what they are told they should be doing. I am here to tell you that you don't need to do a sheep imitation. If you are in Canada, the cost objection to having propofol isn't really an issue since the government is footing the bill for your treatment. In the USA, in case anyone is interested, propofol is roughly 10 times more expensive than conscious sedation. If you are paying coinsurance on outpatient procedures, you are going to be raked big time. You have the power to control whether that happens.

On another related note, my coinsurance on my last endoscopic balloon dilation at Yale was just over $1000. A component of that bill was anesthesia. Somehow they are charging now in outpatient procedures at Yale the "drip time" that they sedate or administer anesthesia. That component of my overall bill came to $1200 for 61 minutes of conscious sedation (fentanyl and versed); it would have been much more if I had allowed propofol to be administered.

If in fact you are in Canada and can subtract the cost issue, one benefit of propofol is you will recover quickly and will not be drowsy all day. This is not to say you should be driving but you can probably go back to work if needed. Conscious sedation usually requires taking off the day of the procedure. Anyway, you have a choice and good luck with it.

Last edited by CTBarrister

Thanks for the all the feedback to my post.

LovelyCarrot made a great point about logistics and maybe I should question my GI about this procedure.  I thought about that for sure.  However, considering I am on my 4th biologic in the past 5-6 years (Humira, Remicade, Entyvio, & now Simponi), and since I am still having my share of issues, I should probably keep my mouth shut and do what they say!  I suppose it's a small price to pay considering what I have had to live with over the past 22 years post surgery and for another 8 years prior.  I assume that they want to see if there are issues with my upper intestinal tract that could be adding to the difficulties in living with a pouch.  I have never seemed to have been able to get to a point of a consistent lifestyle of 3-6 bowel movements a day. Some days yes, and then some nights I'll be up 4-5 times for toilet runs before breakfast time!  It goes from one extreme to the other.  That being said, without the 360mg of Codeine I take daily, there's no telling where I'd be right now...  Life would likely be a lot worse...

And I am pretty sure that if there were alternate more less invasive and simpler ways to do the test, that it would be an option.  At least I would think so, but I suppose I could always ask.  Being in Canada, the biggest expense for this procedure will be my transportation, accommodations, and meals while on the road.  The procedure in Canada will be covered by my provincial healthcare. 

I am sure glad that I am covered for my Simponi medication by 'compassionate care' as each monthly injection costs CAD$1,584.29 before shipping! 

Add Reply

Post
Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×
Link copied to your clipboard.
×