My surgeon and person who has been my go to guy ever since is retiring in October 2018. I was told today that the people taking his place will no longer prescribe tincture of opium for frequency. I asked what I was supposed to do as that is all that has worked for my frequency.  The nurse told me to talk to my doc before he retires for alternatives and/or find a gastroenterologist. I am flipping out here because I have no idea how I will make it without the opium to slow me down. Immodium sucked all the moisture out of my body which was uncomfortable, to say the least, and constipated me. 

I have two questions. What do people use for frequency and does anyone have a good doc that understands and monitors the pouch in the Tacoma/Seattle area?

Original Post

I do not have a dr to recommend, but I can tell you what I have to do to get my tincture of opium script. I go to clevleland clinic (dr shen) once a yr for my scope. He writes a script and also writes a letter to my local GI stating I need the opium. I then bring the letter to my local GI and he will write a script to use locally—since Massachusetts will not fill script from Ohio!! Obviously, someone thinks we will get addicted to it (they haven’t tasted it!!) my local GP will also write a script—-but as we know any dr can only write a controlled substance for one month. Also Dr can only write script for 100 ml of opium, so it becomes a huge inconvenience to go to the dr every month! I take it 4-5 times a day for cramps (k-pouch) and can usually make 100ml last 5-6 weeks.i have also taken aleve and sometimes that works for cramps, but probably would not help for frequency.

It seems that your current Dr would write a letter for you to take to another dr. Maybe you can find a GP or pain dr that would help you. In fact, dr. shen told me to go to a pain dr if the opium didn’t help.

good luck and I hope you find a Dr that understands our issues.

 Thanks for your reply. My current but soon to be retired doc is out of town until late July. I have an appointment with him July 30th to discuss this. I am terrified that I will end up living in the bathroom and hope something can be worked out.

Many doctors in CT, including my PCP, have become much more restrictive about prescribing opioids and sleeping medicines. My doctor has outright stopped prescribing sleeping meds and tells patients to get over the counter meds. This started about a year ago. One reason why is the DEA and FBI have started criminally charging doctors who over prescribe opioids. One such doctor who is now in a federal prison was a high school classmate of mine. He went to jail because one of the addicts who doctor-shopped him died of an OD- on oxycodone I believe. Unfortunately for him his paper trail was to prescribe pain meds like candy and ignore pharmacies who warned him the lady he was prescribing to had an addiction issue.

Your post begs the question of why the group you are a patient of stopped prescribing T of O. You need to ask more questions. A doctor they know now in federal prison due to DEA or FBI controlled med abuse charges? Even if DEA is cracking down in your locale, there is always going to be Doctors with reps of giving out opioids like candy. You hate to shop for someone like that, but depending on what the situation is, you may not have another way to get a scrip.

If I may be honest I don’t think it’s a good idea to be throwing opioid meds at frequency issues in the first place. I have always attacked the issue through diet, Imodium and anti-spasmodics. I frankly think a lot of the people on the board taking T of O are throwing the wrong drug at a spasmodic pouch issue that is treatable with other drugs like levsin, bentyl etc. In the past I raised this question as well. Find out what is causing the frequency. If the frequency comes right after meals it’s 100% that it’s a spasmodic Pouch, which is common after surgery. 

Really, all I know is that I am feeling dumped. No pun intended. I am sorry for the whole overuse/abuse of opoid thing, but do not think the whole class of drugs needs to be vilified. I believe in research and, since my doc is out of town, began by talking to my pharmacist. She said that Lomotil might be an alternative. Once I saw another name for it, Xifaxin, I think I did try that and it gave me diarrhea. Who knows. I guess I need to remember the Jan quote, “This too shall pass.”

Still hoping for hints on local docs and/or frequency solutions.

CT - What diet do you use?

I avoid carbs and sugars because they are causing the frequency, sugars especially in my case. I eat a lot of proteins and whole, unprocessed foods. I am a veteran of support groups and IMHO a lot of people eat horrible diets by habit and upbringing and don’t even blink at the thought that it’s at the root of the problem- I mean soda, candy, Burger King etc. I have heard this at support groups and these people resist when told to change their diet.  It’s always stress and finger pointing elsewhere that makes no sense scientifically, logically, or otherwise. I am not gonna argue because it’s not the purpose of a support group. I just think it’s sad and pathetic on a certain level but diet is the first thing you look at, not the last. A lot of people just want to throw meds at their issues and it’s not always the best or only way to resolve the issue .......

I admit to being bad about sugar. Other than that, my husband and I are both foodies and eat a homemade, pretty healthy diet. There are places I will need to tweak it - sugar being the first thing to look at. 

I did want to respond and ask you about diet, but you told me anyway - thanks. The last few weeks have been nonstop and by the time I collapse on the couch, my mind is too exhausted to even think of checking websites. 

Normal for me is anywhere from 7 to 10 times a day. About 1/2 of those are not real productive, 1/2 are. To me, high frequency is pretty constant, as in 3 to 5 times an hour or more, urges where I run to the restroom and not a lot  happens. I know when the opium is wearing off because I start having to live in the restroom. It is like a tablespoon or so of stool collects and my body wants to expel it  ASAP. Spazms begin and sometimes I leak. Not a good thing when I am surrounded by 13 year olds and cannot get out of the room to go potty constantly.

Add Reply

Likes (0)
Copyright © 2019 The J-Pouch Group. All rights reserved.