What do you do when someone has horribly painful bowel movements. This is my husband who is terminally ill with myelodysplastic syndrome and liver. I have compained until I'm blue in the face and the response is "they shouldn't hurt that bad".
We have some very good doctors, but...
I have asked his liver specialist (famous guy)
I have asked his MDS specialist (famous guy)
I have asked his oncologist (not so famous guy)
I have asked our family practitioner
I have asked our new internist.
I am frustrated. It hurts so bad he literally screams in pain, and I really feel like he is going to die right then. It sends such a horrible feeling through me.
I have checked him for hemmorhoids (none). I have checked for impaction. It seems to me that his stool is not being pushed down his colon effectively. He will have a bowel movement and it won't all come out. Of course there is visable blood in every movement. It is affecting him psychologically, also. His father died of a heart attack on the toilet. His mother died of a pulmonary embolism on the toilet. He is afraid to have a BM if I am not here, so he doesn't respond to the urge. Tonight he is in tears because he has had 4 BM's in the last 24 hours, each more painful than the last. I finally convined our new doctor to do a colonoscopy, but it's not until next month. (His mother had colon polyps.) Oh, he is on major doses of narcotics, but has been for many years and this has not been a problem until the last 6-12 months. One more "unexplainable" thing, according to the docs, his stool is rock hard balls. He had been telling me that it was hard, but I didn't know how hard until I did the hemoccult test. I could hardly cut into them to get a sample. And then I when I was cutting into one it flicked out of the top hat and fell on the floor with a loud thud. If it had hit my foot, it would have hurt :rotfl: (sorry-have to have a sense of humor or I'll go fetal) I know you're not supposed to ask for medical advice on here, but I
am just so frustrated. I would feel bad for a patient in this shape, but it really hurts to hear my husband scream and to see him cry. Thanks!
and then there's good, old-fashioned mineral oil-30cc w/30cc mom and add juice to taste (it's still disgusting but powerfully effective). this is what we've used for our hospice pts on narc overload.
i'm truly sorry you and your dh are experiencing such pain.
Thanks for all the suggestions and support. My long term goal is to be a hospice nurse (after I complete the LPN program, then the RN program and work in the hospital for a couple years). It is things like this, the "little" things like constipation that affect dying people so much and doctors just shrug their shoulders. When my daddy lived with us, he would be so sick from being constipated, I would find him in fervent prayer in his room. He would tell me that he had asked God to either give him a bowel movement or take him home to Heaven because he just couldn't stand it. After that conversation, that's when I took charge and learned to remove impactions and give enemas.
This has affected my husband so much that he has lost the will to live. He has really gone downhill the last 2 days. Now he is refusing to eat so he won't have any thing in his system to eliminate. When he came to bed finally at 6am, all he did is lay there and moan and say "oh God". This is very hard for me. He's only 50 (I'm 35, and we have a 5 year old.) Now you can see why I'm so frustrated. I have been keeping him updated on the suggestions from you guys, but he is afraid to try anything. He thinks that it will just end up hurting more, if that was possible.
So please keep the suggestions and support coming if you have time.
I am so sorry for your poor husband's suffering Nurse Joey! Is he in hospice? Is there a specific nurse that he has a good relationship with? Maybe that would be the place to start...one of the office nurses that he likes, perhaps? I wish you the best.
I too am very sorry for your ill husband. I am not a nurse, but I am a pre-nursing student and I have IBS. I have had a terrible time with constipation in the past as well to the point of bleeding and doubled over in pain afraid to have a BM. Over the years I'd tried a few things with minimal relief and then I talked with my OB/GYN who suggested I take flaxseed oil (2 tbsp/day). I actually take 2 to 4 1000mg. supplements because the oil itself is awful tasting. I can tell you honestly, I have not had a problem with painful/bleeding constipation in over 2 years since starting the flaxseed oil.
Specializes in Trauma acute surgery, surgical ICU, PACU.
YOu say that you have checked him for hemmorhoids. But have any of the doctors taken a look?? - it's possible he could have something like a rectal or anal fissure.... It's good that a colonoscopy is going to be done.
Try a sitz bath a couple of times and see if that brings him any relief.
No family member should have to fight like this to get someone's problems addressed "It shouldn't hurt" - but it DOES hurt, so why aren't the docs being proactive amd looking for the cause???? :angryfire
Specializes in LTC,Hospice/palliative care,acute care.
....This has affected my husband so much that he has lost the will to live. He has really gone downhill the last 2 days. Now he is refusing to eat so he won't have any thing in his system to eliminate. When he came to bed finally at 6am, all he did is lay there and moan and say "oh God". This is very hard for me. He's only 50 (I'm 35, and we have a 5 year old.) Now you can see why I'm so frustrated. I have been keeping him updated on the suggestions from you guys, but he is afraid to try anything. He thinks that it will just end up hurting more, if that was possible.
So please keep the suggestions and support coming if you have time.
You really have your hands full-I hope you have some local family support especially for your son....Mine was 4 when my mom died-we had moved in when she stared hospice care.I don't know what I would have done without those nurses-it's VERY hard to set limits and "give orders" to your loved ones....The nurses and aides took charge and took care of me as well....Even if he is not ready for "hospice" the visiting nurses will be invaluable....It sounds like he really needs a good cleaning out before he can get regulated...Meds like Miralax will roll that stuff right out of there=but you really need some nursing assistance to get started.I hope you can make some calls in the morning...Sad to say but things will only get harder..My son was fully involved in mom's days-when she became bedridden we ate dinner in her room ....He let me know when he needed information-I gave it to him on his level and honestly...He always let me know when he had heard enough.We never hid the truth in anyway and I think that was best...We were able to be together and that was so important....Kids are so resiliant.I felt guilty initially over what he went through while all this was going on but I soon realized that we did the best for our family that we could....But I could not have done it alone-you won't have to either.....
I know exactly how he feels. I have experienced this problem for many years. I live in the UK and we are able to buy liquid paraffin over the counter which does not soften the stool but does lubricate the lining of the bowel and help the stool move with ease. If your husband experiences cramps then may I suggest a very good exercise that really works.
If he lies face down on the bed and with his hands pull his legs up towards his back and hold this position for as long as possible. Then repeat this a few times. This will help to stretch and relax his muscles and then he should find his bowel movement easier.
All of the women in my family have died from bowel cancer and I have always experienced lots of pain which, does worry me. I feel that we all have a date set when we will meet our maker. The more we worry about things takes away time we can have to enjoy ourselves and make the most of the life we have. None of us have enough time to waste on worrrying because worrying never changed any outcome.
Good luck to you both, I hope this may be of some help to you. xJo
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QUOTE=nursejoey05]What do you do when someone has horribly painful bowel movements. This is my husband who is terminally ill with myelodysplastic syndrome and liver. I have compained until I'm blue in the face and the response is "they shouldn't hurt that bad".
We have some very good doctors, but...
I have asked his liver specialist (famous guy)
I have asked his MDS specialist (famous guy)
I have asked his oncologist (not so famous guy)
I have asked our family practitioner
I have asked our new internist.
I am frustrated. It hurts so bad he literally screams in pain, and I really feel like he is going to die right then. It sends such a horrible feeling through me.
I have checked him for hemmorhoids (none). I have checked for impaction. It seems to me that his stool is not being pushed down his colon effectively. He will have a bowel movement and it won't all come out. Of course there is visable blood in every movement. It is affecting him psychologically, also. His father died of a heart attack on the toilet. His mother died of a pulmonary embolism on the toilet. He is afraid to have a BM if I am not here, so he doesn't respond to the urge. Tonight he is in tears because he has had 4 BM's in the last 24 hours, each more painful than the last. I finally convined our new doctor to do a colonoscopy, but it's not until next month. (His mother had colon polyps.) Oh, he is on major doses of narcotics, but has been for many years and this has not been a problem until the last 6-12 months. One more "unexplainable" thing, according to the docs, his stool is rock hard balls. He had been telling me that it was hard, but I didn't know how hard until I did the hemoccult test. I could hardly cut into them to get a sample. And then I when I was cutting into one it flicked out of the top hat and fell on the floor with a loud thud. If it had hit my foot, it would have hurt :rotfl: (sorry-have to have a sense of humor or I'll go fetal) I know you're not supposed to ask for medical advice on here, but I
am just so frustrated. I would feel bad for a patient in this shape, but it really hurts to hear my husband scream and to see him cry. Thanks!
I have seen this alot working in the nursing homes, people on alot of heavy duty pain meds get constipated quickly and severly if not treated. What irritates me is when your hubbies case is why the doctors don't sit down and discuss it further with you and help prescribe and diagnose exactly why he is constipated. With that being said you could always try nurses cocktail: one part prune juice, one part apple juice and one part ginger ale. We gave that all the time to get our folks "going".
Specializes in ICU, ED, Transport, Home Care, Mgmnt.
I have two thoughts, could his pain be neuropathic? If that is the case pain meds won't help. If this is constipation gone bad perhaps he would benefit from learning self hypnosis to help with the anxiety and pain until you get him cleaned out and regulated.
I think the problem with the docs is that they have seen him go through so much, and have seen him close to death so many times, they get unconcerned with "just constipation". One doctor actually said "well, you've already lived longer than I thought you would." You should have seen the look on his face when that came out of his mouth. It was like "did I say that out loud?" :angryfire
I continue to appreciate all your kind words and suggestions. In response to one reply, no, I have no family to turn to. Have a couple good friends that help me remain sane, but unless you've experienced terminal illness, it's hard for a lot of "regular" people to know what to say/do.
I'm hoping that our new internist will help. He said at our first visit that he doesn't believe in assigning people dates to die. (you know, like saying -you have six months to live). So, we like his theory but haven't really established a relationhship yet. (but I WILL)
leslie :-D
11,191 Posts
and then there's good, old-fashioned mineral oil-30cc w/30cc mom and add juice to taste (it's still disgusting but powerfully effective). this is what we've used for our hospice pts on narc overload.
i'm truly sorry you and your dh are experiencing such pain.
my heart is w/you and yours.
leslie