Page 1 of 3 123 LastLast
Results 1 to 10 of 27

Thread: if I don't resolve this soon, i'm going to end it

  1. #1

    if I don't resolve this soon, i'm going to end it

    hi,

    excuse the melodrama. ive been through a lot of shit. for decades. but what is happening to me now is unnacceptable and beyond my tipping point. I type this in tears. I. cannot. take. it. anymore.

    ill try to be brief:

    Wht is happening in a nutshell: im getting the most severe spasms ive had in decades. theyre so bad, i cant sleep, i can barely wheel myself properly. ive concluded that the most likely cause is something to do with my bowels. a lot has changed for me. so now, the day before my bowel program, the spasms get severe, and then the day of, its almost unbearable. Now, here's the big big big big problem. i do digital stimulation every few days, i do it myself, with lube and gloves; but when im having these severe spasms episodes, my rectum is tightly shut. sometimes i can relax enough to get a finger and do some rotations and even feel some poop... but the severe spasms send it back up. And then during all this im getting severe autonomic dysreflexia, and the more i remain on the toilet trying to fight it, the tighter my rectum gets, and the more severe the AD, and it becomes a race as to whether ill make it back to my bed to rest. the spasms are so severe i can barely do transfers! and my legs get so rock hard from the spasms it hurts, and it makes transfers scary because i always feel if my leg gets caught while its tight itll snap in half!

    so as you can see, its an absolutely shit show. no pun intended.

    the only thing keeping my alive right now is smoking a metric ton of cannabis. i literally have been spending 1200$ a month on weed. i smoke huge blunts all day to stop the spasms, and even more when its time for my bowel program.... and it was helping TO SOME EXTENT for the past few months but now nothing is helping.

    okay...... with all that out of the way, let me give some supplemental details that are important:
    1) I have an sci
    2) this has never happened to this extent before, it has only been like this the past 4-5 months.
    3) I am on medications: oxycontin (20mg a day, sometimes 40-60), ditropan, and baclofen.
    4) most of my life i avoided all medications until about 4-5 years ago i began opiates; and then 2.5 years ago i moved somewhere i couldnt smoke cannabis, so i had to get pills to solve the problems that cannabis solved, mainly my spasms (solved by baclofen), and my bladder frequency/spasms (solved by ditropan) ..........

    4a) with all that said, ive been trying to cut back recently. Ive reduced my opiates from 40-60 a day to mostly 20mg a day; and as for the bacolofen/ditropan, the doctor overseas didnt even understand why i needed them, i just asked for it, i was given the pills, and i took them at my own discretion and dosage. Ditropan pill says "oxb 5" and i take 2 a day, 1 in the morning, 1 at night; and baclofen about 20-30mg a day.

    i dont know what this is.... neurogenic bowels? severe consitipation caused by any # of things? i just dont know.

    and because of the shitty canadian medical system, ive been waiting for months, and will continue to wait for many more months until i can see a doctor who WILL TRY to find a solution.

    ..... the more im unable to evacuate my bowels, the more i get sick, the more spasms i get throughout the day, and i vomit a lot.... perhaps from poop not being able to get out any other way? or because of the dosage reduction of oxycontin?

    i need to find a solution or else i simply wont be able to handle waiting many more months for a possible solution. if this is my life now, then no thanks, im out.........................

  2. #2
    There’s a solution, hang in there.

  3. #3
    Senior Member air ohs's Avatar
    Join Date
    Mar 2003
    Location
    chatham ont canada
    Posts
    798
    you can take 80 to 100 mg baclofen spred out .i take 90 total.

  4. #4
    Senior Member pfcs49's Avatar
    Join Date
    Aug 2013
    Location
    NW NJ ***********T12 cmplt since 95
    Posts
    1,726
    Sounds like a colostomy would do the trick.

    I got it 7 years ago and it certainly freed me up to have more time and less frustration.
    69yo male T12 complete since 1995
    NW NJ

  5. #5
    Quote Originally Posted by diaspora View Post
    hi,

    excuse the melodrama. ive been through a lot of shit. for decades. but what is happening to me now is unnacceptable and beyond my tipping point. I type this in tears. I. cannot. take. it. anymore.

    ill try to be brief:

    Wht is happening in a nutshell: im getting the most severe spasms ive had in decades. theyre so bad, i cant sleep, i can barely wheel myself properly. ive concluded that the most likely cause is something to do with my bowels. a lot has changed for me. so now, the day before my bowel program, the spasms get severe, and then the day of, its almost unbearable. Now, here's the big big big big problem. i do digital stimulation every few days, i do it myself, with lube and gloves; but when im having these severe spasms episodes, my rectum is tightly shut. sometimes i can relax enough to get a finger and do some rotations and even feel some poop... but the severe spasms send it back up. And then during all this im getting severe autonomic dysreflexia, and the more i remain on the toilet trying to fight it, the tighter my rectum gets, and the more severe the AD, and it becomes a race as to whether ill make it back to my bed to rest. the spasms are so severe i can barely do transfers! and my legs get so rock hard from the spasms it hurts, and it makes transfers scary because i always feel if my leg gets caught while its tight itll snap in half!

    so as you can see, its an absolutely shit show. no pun intended.

    the only thing keeping my alive right now is smoking a metric ton of cannabis. i literally have been spending 1200$ a month on weed. i smoke huge blunts all day to stop the spasms, and even more when its time for my bowel program.... and it was helping TO SOME EXTENT for the past few months but now nothing is helping.

    okay...... with all that out of the way, let me give some supplemental details that are important:
    1) I have an sci
    2) this has never happened to this extent before, it has only been like this the past 4-5 months.
    3) I am on medications: oxycontin (20mg a day, sometimes 40-60), ditropan, and baclofen.
    4) most of my life i avoided all medications until about 4-5 years ago i began opiates; and then 2.5 years ago i moved somewhere i couldnt smoke cannabis, so i had to get pills to solve the problems that cannabis solved, mainly my spasms (solved by baclofen), and my bladder frequency/spasms (solved by ditropan) ..........

    4a) with all that said, ive been trying to cut back recently. Ive reduced my opiates from 40-60 a day to mostly 20mg a day; and as for the bacolofen/ditropan, the doctor overseas didnt even understand why i needed them, i just asked for it, i was given the pills, and i took them at my own discretion and dosage. Ditropan pill says "oxb 5" and i take 2 a day, 1 in the morning, 1 at night; and baclofen about 20-30mg a day.

    i dont know what this is.... neurogenic bowels? severe consitipation caused by any # of things? i just dont know.

    and because of the shitty canadian medical system, ive been waiting for months, and will continue to wait for many more months until i can see a doctor who WILL TRY to find a solution.

    ..... the more im unable to evacuate my bowels, the more i get sick, the more spasms i get throughout the day, and i vomit a lot.... perhaps from poop not being able to get out any other way? or because of the dosage reduction of oxycontin?

    i need to find a solution or else i simply wont be able to handle waiting many more months for a possible solution. if this is my life now, then no thanks, im out.........................
    Constipation caused by opioids is a medically documented side effect of using opioids. It even has an acronym, OIC or Opiod Induced Constipation.
    From Medical News Today - https://www.medicalnewstoday.com/articles/323430.php
    "How do opioids cause constipation?
    Opioids offer effective pain relief, but they can also cause constipation.
    Opioids bind to specific proteins in the body called opioid receptors. These are present in the brain, spinal cord, and gastrointestinal tract.
    By binding to these receptors, opioids block the brain's ability to perceive pain.
    However, opioids also depress, or slow down, the central nervous system.
    The central nervous system is responsible for the pain response, but it also controls the body's movements, including the involuntary movements that make digestion possible.
    For this reason, opioid use can result in constipation."
    There are prescription medication that can help OIC: Lubiprostone (Amitzia) is administered in pill form, Methylnaltrexone (Relistor) is an injection, Naldemidine (Symproic) is administered in pill form, Naloxegol (Movantik) is administered in pill form.

    It seems you don't know why you are taking Ditropan (Oxybutynin). This drug is used to help reduced bladder spasms and increase bladder capacity. Oxybutynin can cause dry mouth, stool that is dry and hard and constipation. How do you manage your bladder? An alternative to these anticholinergic to reduce bladder spasm and increase bladder capacity is Botox injections into the bladder wall.

    Have you tried using laxatives (Miralax) or fiber supplements (Metamucil)?

    Have you tried using a stimulant like a bisacodyl suppository to induce peristalsis that will help move stool into the rectal vault? Digital stimulation is just not enough sometimes to get things moving, especially when you are constipated. Regular bisacodyl suppositories (Ducolax) have a vegetable oil base that does not melt as quickly as a bisacodyl suppository with a polyethylene glycol base that is water soluble. Magic Bullets are a brand of bisacodyl suppositories that are water soluble. https://conceptsinconfidence.com

    An alternative to Magic Bullets is Enemeez. Enemeez is docusate sodium that is said to produce bowel movements in 2-15 minutes. You can request free samples at https://enemeez.com/how-to-use/

    I know you live in Canada, and I believe both Magic Bullets and Enemies are available in Canada or on line.

    How is your diet? Do you try to eat foods rich in fiber? Do you get adequate daily fluids?

    Hope some of these ideas will be helpful.
    Last edited by gjnl; 05-26-2019 at 07:30 PM.

  6. #6
    Senior Member
    Join Date
    Apr 2006
    Location
    Massachusetts
    Posts
    221
    Constipation is definitely caused by opiates. I feel your pain brother, I've been at this myself since June 1986, C4. Being as brief as I can, I would try to cut down the opioids, take Miralax, a lot of it… It draws water into your stool, and it works. Take it every day. At least one of the 17 g doses in warm water. Have you tried linzess? It works as well. I've had awful problems with constipation, massive dysreflexia, etc. You can get it straightened out, hang in there. Any questions feel free to post.
    https://www.linzess.com/steps-toward...E&gclsrc=aw.ds

  7. #7
    Senior Member
    Join Date
    Feb 2010
    Location
    Gold Coast Australia
    Posts
    323
    Opiates give my bowels and therefore me hell. in pretty much the same way it does you. Although I've never needed it long term until recently. Cannabis has been a godsend to me. It doesnt take all the pain. But it takes most of it. My doctors know I toke, although it is illegal to do so, they dont bat an eyelid. I concede I may live in a more liberal society (Queensland, Australia). My experience with weed is purely my own, yours will most likely be different, even completely so.
    Everybody wants freedom.... They just don't want it for everybody else...

    A college professor, a man I now consider my dad, once told me...
    "The minute you let someone decide what you can and cannot do, your life is no longer yours." A truer word has never been spoken in my opinion.


    Professor Bill Johnston
    (1930- )

  8. #8
    I would agree that you may want to consider an elective colostomy. I have had several clients who had severe problems with AD during bowel care, as well as prolonged time on the commode trying to evacuate with suppositories and dig stim to the point that it was causing skin problems and putting their health at risk. They had elective colostomies and it relieved these issues immediately.

    (KLD)
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

  9. #9
    Colostomies can make life a lot easier, but do not expect them to cure constipation. You still need to consciously keep your stool soft if that's your biggest issue.
    Unless you get it high in the colon when things are not solid at all.
    "We must become the change we want to see in the world." Gandhi

  10. #10
    Senior Member Tim C.'s Avatar
    Join Date
    Oct 2002
    Location
    New Jersey
    Posts
    2,248
    Blog Entries
    1
    Quote Originally Posted by alissa View Post
    Colostomies can make life a lot easier, but do not expect them to cure constipation. You still need to consciously keep your stool soft if that's your biggest issue.
    Unless you get it high in the colon when things are not solid at all.

    If you can care for the colostomy by yourself, or have good help.

Similar Threads

  1. Replies: 8
    Last Post: 11-02-2009, 10:33 AM
  2. RESOLVE Urges Support for Stem Cell Research
    By Leif in forum Funding, Legislation, & Advocacy
    Replies: 0
    Last Post: 02-14-2006, 02:27 PM
  3. PARALYSED rugby player has steely resolve to walk again
    By Max in forum Spinal Cord Injury News
    Replies: 0
    Last Post: 04-25-2004, 12:30 PM
  4. Replies: 0
    Last Post: 08-10-2003, 01:10 PM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •