Pam,
How have you been feeling? I believe you mentioned some issues with the scs and were planning to have a lead replaced. Unfortunately, with so much scar tissue there was room for only one lead which limits how much it can cover. Have you noticed a big difference this one has stopped working?

The dos and don't lists , for the most part, are not too difficult to manage. I do have grapes daily which does contain skin. There is a diet for opioid constipation that mentioned, grapes, watermelon, plums that could help add some fibre.

I have really been dealing with a lot of abdominal pain, as well as the inner hip which is causing nasty groin pain. With taking so much laxatives daily and spending much "potty" time aggravates the situation.

I was reading up on the Bupranorphine you mentioned you were taking. It appears sometimes it is used for those trying to lower their opioid dose/rehab as well as it's use for chronic pain without all the constipation.

This sounded very interesting. I am dealing with a fairly high does of Oxycontin; not sure how this might offer some type of replacement. Are you on a very high dose? How often a day do you take it? I think it is subliminal. Is this something that you keep under your tongue for a fairly long period? Hope you don't mind all the questions. Pretty much at a loss what to do.

The constipation has cost me so many problems throughout the past few years. The Movantik, is too harsh and can put you into very nasty withdrawal. Because of this, I declined my PM's suggestion I take it. I had an awful time and was quite nauseated, chilled, etc. when I tried the Amitiza last year.

Hope all is going well with the DDdogs and the new kid on the block...

Gerry

Hi Gerry, fibre is generally good for most people, then there are people like me and potentially you who benefit from considerably less fibre so there is reduced chance of things clogging up and (additionally) becoming bursts n splurts when taking miralax.

Temgesic, it's great for pain relief and I'm told it has been known to be used to assist people transition from Oxy. I switched as you know and had very little angst with the change. Remember I was on up to 140 MSContin 20mg Oxynorm & Fentynal patches. I have considerably less constipation issues since the change. I'm supposed to take 2 temgesic every 6 hours, but only take 1. When I was in hospital I was on 2 every 4 hours. They are also known as bupranorphene sublingual & are very small/thin. You place them under your tongue and they dissolves within a few minutes.

Thanks Pam, I am aware of warnings not to use Metamucil for those on opioids because of too much fibre; but read items like the grapes, apricots were natural laxatives/fibre and good for those with opioid constipation. Now I am wondering....especially about the spurts that are happening.

(Miralax is the recommended laxative for opioid constipation which I take 3 - 4 doses daily. It rules our life because of fear of even going out for a few hours and the possible messing/cramping that goes on most of the day. I can take 3 doses for a few days; then all at once on the 3rd or 4th day of taking 3 doses, I start having problems and need to take 4 doses to get things moving again. It's a vicious circle. Also the constant stomach upheaval and pain. Not nice. That along with the hip bursitis and groin pain make my PN and spinal issues seem very small in comparison.

I read the Subliminal Temgesic/buprenorphine can oppose the effect of other opioid pain killers that may be given at the same time because they can block the receptors from acting and cause withdrawal and increase pain. As previsouly mentioned, it appears they are often used in rehab to counter the action of the opioid receptors acting somewhat as an antagonist to opioid receptors. Confusing...

A few months ago, I was taking 60mgs. of Oxycontin every 6 hrs. I have sinced reduced to 60mgs. every 8 hrs so am taking 180mgs. daily of Oxycontin rather than the 240mgs. I had been taking. I also take two to two and a half 7.5 Oxycondone/Percocet daily. It would appear this would be a long way of reduction before being able to take the Temgesic.

You say you take the Temgesic 1 instead of 2 every 6 hrs.
How high of a dose are each of the subliminal tablets you are taking???

Again, Pam thanks for your input, you and I, in so many ways, have many similar issues going on.


Gerry

Hi Gerry, this is a reduced excerpt of some info online re temgesic.

There is evidence to indicate therapeutic doses of buprenorphine do not reduce the analgesic efficacy of standard doses of an opioid agonist and that when buprenorphine is employed within the normal therapeutic range, standard doses of opioid agonist may be administered before the effects of the former have ended without compromising analgesia. However, in individuals on high doses of opioids buprenorphine may precipitate abstinence effects due to its properties as a partial agonist.

I hope that helps somewhat, but tbh your treating practitioner or PM will be the best source of information. I see getting Oxy for chronic pain (other than cancer) in the US is going to get significantly harder so if you can precipate the conversation with your practitioners before possibly being forced into discussing it might be beneficial. Although with your cancer history you may be alright? Don't quote me because as you know I don't live in the US so what I've read and heard could be well off base.

Movicol comes in half sachets as well as full sachets, they also have a child's dose. Would your miralax maybe have the same concept? It might be worth you having 3 sachets One day and the next 3 1/2 then 3 and so on. I know when I was on the fully ramped Oxy along with the 100mg fentanyl patch I was on 4 movicol sachets a day - 2 in the am and 2 in the evening. I travelled to the UK and it was a true nightmare managing the back pain, the stomach bloat pain and the risk of obstruction even though on such a high dose. You have my sympathy my friend. Life is cruel at times.

Pam,
With all the attention about doctors over prescribing opioids; my PM has asked a couple of months ago for me to lessen my dose from 4 60mg's of Oxy per day to 3 doses of 60mg's a day.

He now wants me to cut back further. I had never wanted to be on this high of a dose in the first place. Each time my PM would do an Epidural, he would come in the recuperation room and asked if I felt any better; I would say "no" because I just had come out from being on my belly and injection in my spine; of course I would not feel the effects yet. So he says; we'll up you another 10/20 mg's. I said "oh no". He tells me don't worry when the time comes, I'll help you come down.

I believe he had in mind the SCS because when the series of Epidurals ended; now came the push to get an SCS trial. I eventually gave in to what was a very unsuccessful trial; but now was on a total of 240mg's daily of Oxycontin and up to 4) 7.5 Percocets per day for break thru pain. With the rectal cancer 4 years ago; he no longer pushes for another trial or the possibility of an SCS.



Thanks for all the info Pam. You have been quite helpful.


Gerry

Gerry, I read this article in the news today in Aus. It made me think of you & all you are enduring. I hope admin I'm allowed to copy & paste the link. Please remove if I'm not.

Woman speaks out over devastating impact of mesh surgery

Pam,
Thanks so much for thinking of me. It's after midnight here; but will look into Facebook tomorrow. When I had cystocele surgery about 7 or 8 years ago, the urologist put my bladder in a sling and closed me up with mesh as well.

Also, in Nov. 2015, I had three abdominal hernias....2 ventral incisional, and 1 epi-gastric. All three were closed with mesh as well. But I believe the mesh is "iffy" in this area and can be prone to infection or rejection; but using the mesh gave a better chance of the hernia not recurring.

But the main mesh issues is in the female bladder with mesh closure in the vaginal area with the Cystocele surgery. I read an article some months later saying the FDA banned/warned doctors this type of mesh was not to be used in the female lining/vaginal area. Remembering back, I think the warning was sent out the year before I had the surgery.

Because the urologist did not complete tacking the rectal area from dropping, I needed to have additional surgery the following year. For the Rectocele surgery, I then became aware of Uro/gynicologist. The Urologist who operated on me should have recommended I see a Uro/gynicologist. I didn't know any better and went to my husband' Urologist. I wish I had known better.... The Uro/gynycologist who did my Rectocele Surgery a year later said the former doctor should have never put mesh and for this reason he said he uses your own tissue and not mesh in vaginal surgery.

Thanks again.

Gerry