NeuroTalk Support Groups - You wouldn't believe it

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Gerry, I'm so sorry you have to suffer this, you have so much to bear already. Please know you are in my thoughts and prayers. Have you thought of shaving the opoid a smidge, just that little less may offer some relief to your poor tum?

My mum will never change, I became the unwanted child and will always remain so. Nothing I can do will change that. It hurts but not as much some days, today, not at all. It is peaceful without their demands.

Quote:

Originally Posted by ger715 (Post 1220767)

Pam,
You may recall; this past November (Thanksgiving week); I had three abdominal incisional hernias repaired with mesh. Two were below the navel and one was an epigastric; above the navel under the breastbone.

These were due primarily from my abdominal incision from rectal cancer surgery almost 4 years ago. Also because of opioid constipation (using Miralax daily) am forcing which adds to hernias.

A few months ago, I went back to the surgeon because I felt the protrusion above the navel (epigastric hernia area). I thought the hernia there recurred. He said it was diastasis recti (the muscle separation of the abdomen). But that is adding to the bulging and pain. I told him I was concerned about recurrence of the hernias. His response was "with good reason".

My belly pain has been increasing. (because of three Miralax daily due to the opioid constipation, I am on the "potty" several times a day.) which adds to the pain. If I don't take at least three Miralax daily, I will get impacted as well.

I was warned about hernia strangulation. That was my reason for having the three hernias repaired this past November. Actually, I am in more pain now than I was before the hernias were repaired. It is a vicious circle. Being on opioids for several years now due to spinal and neuropathy pain am afraid tho go thru "withdrawal" from opioids, as well as having no idea how horrible the pain would be without them.

Pam,I am so sorry you are having to deal with your Mother's lack of consideration with all you are going through and looking for you to sympathize with her and your sister. That is so very inconsiderate of her.

I believe you are also taking opioids as well as something to fight the daily constipation. The terrible ordeal you went through a couple of days ago dealing with the accidents and cleanup had to be awful. As I previously mentioned; this is a vicious circle.

I pray you will not need to be hospitalized.

Gerry

Pam,
I tried a while back to taper down a bit (my PM warned me it probably will not be a good idea; but he went along with it). I didn't last long. I start feeling sick, nausea, chills and increased pain.

This all started when I had the spinal fusion/laminectomy about ten years ago. My PM did the injections; each time they didn't help; he upped my Oxycontin. After one of the injections, he came into the room and asked if I felt any better; I told him I didn't, so he upped my Oxycontin. I said "oh no"; but he told me not to worry, he would help me come down when the time came.

I think he was assuming an SCS would do this; But; after the failed trial, never did happened. With the bladder surgery,PN worsening, the leg pain/burning feet and edema the dose remained high. Now that my insides are a mess, along with the groin and belly pain; not sure that's going down in meds is an option. I feel trapped.

You have an awful lot going on dealing with so much scar tissue, etc., as well as the awful impacting. Working has got to be quite difficult.

Both you and your husband continue in my prayers.

Gerry

Y

pamela & ger,

i'm not an expert in pain relief by any means. however, i'm wondering if you've seen a pain dr dedicated to pain mgment. perhaps a pain patch? that would help with dosing over an extended period. just a thought.

Pamela - I am glad to hear you are feeling a little better and now have bowel sounds. That is a good sign. I hope things continue to improve for you. I am glad you took some time off work to deal with this.

I know this was discussed in another post but I wonder if a hernia belt would help you or some sort of abdominal binder. My surgery was about a year ago and I still wear mine; not every day but when I feel sore or know I am going to be doing some sort of activity that will require lifting, pushing, pulling, etc. It does help. I got my abdominal binder after my surgery but I know you can get them online and at some of the department/drug stores in the U.S. I know you are not in the U.S. hence the reason I mentioned online. They really are worth it and may help you keep everything in.

As always, please keep us updated on how you are doing. I have been keeping you in my prayers.:hug:

Quote:

Originally Posted by NurseNancy (Post 1220836)

Thanks Nancy. Actually, I have been going to Pain Specialists of Greater Chicago s.c. for at least 6 years or 7 years. The doctor I see there was recommended by my orthopedic doctor. Since I am on a top tier medication, the FDA requires I am seen once a month in order to get my prescription. Also random urine testing is done.

Gerry

Hi Nancy, sadly I don't think many of the experts are an expert in pain mgt. More often than not it seems to be trial and error and how much money is in it for the providers incl pharma and electronic stimulation. I do have a good PM right now, been with him since 2014, had previous ones who were also good but only in their field of expertise and once beyond them, well they were of an age where they didn't feel the need to continue to grow their field and or were /are tapering down to retirement. In Aus in particular pain mgt specialists all started out as anaesthetists so talking isn't really a speciality... And on the down side, all those in the city I live in are on the other side if 60. Between my current PM and previous (who is so in demand and now only works 1 day a week at 79) I have been given a semblance of life back, after 2 plus years of being a house bound 4 wall virtual prisoner I was able to venture back out to PT work. Between Gerry & I we have had a litany of other things plague us to the point where I don't think either of us could or would be surprised. Both of us have long moved on from pain patches, unfortunately for me while effective in the earlier years I'm extremely allergic to the adhesive and risks of continued use became to high. Thanks for thinking of us. :hug:

Quote:

Originally Posted by NurseNancy (Post 1220836)

you guys are so knowledgeable & experienced. you get like that when you've dealt with so much over so long & learned how to advocate for yourself.

i hope you both will feel better.