Advice please. : Mum has been constipated... - PSP Association

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Advice please.

Sarah1972 profile image
35 Replies

Mum has been constipated for a minimum 11 days now. She has had 4 enemas in total, today’s one Arachis oil was taken a few hours ago but still no movement.

Mum has been through the mill lately and feel this could be fatal.

Has anyone else had a similar experience?

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Sarah1972 profile image
Sarah1972
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35 Replies
Dadshelper profile image
Dadshelper

If I understand correctly she hasn't had a bowel movement in 11 days? She needs to go to an ER if that is the case. Bowel blockages are not uncommon but that is a long time. Dad had several episodes but almost all involved diarrhea, vomiting or both.

Ron

Sarah1972 profile image
Sarah1972 in reply to Dadshelper

That’s right , nothing for 11 days and very impacted. She has had Pallative nurse and district nurses daily since Sunday to do enema (except yesterday due to ordering a different enema) she is very weak and has been for around 8 days but not in pain. I feel this could be the end for her. Thanks for your response x

Spiralsparkle profile image
Spiralsparkle

I've got no advice to offer. I know sometimes they can do manual evacuations but they are invasive and I would imagine painful trauma for your Mum.

What have the nurses communicated to you as they are aware she hasn't been and surely need to have an acute emergency care plan in place of what needs to happen from here. Has anyone assessed where they believe here to be on her journey for entering end of life or not?

This must be so painful and traumatic for you and if the health professionals aren't communicating fully is going to aid to this trauma. Do you feel able to ask the question tomorrow on what is the best way to proceed of there is no bowel movement as you are entering the weekend and we all know how difficult it is to access medical help on the weekend. Some decisions need to made tomorrow and put in place. When you are feeling so stressed and traumatised it can feel daunting to have to ask these difficult questions that you don't want to hear the answer too.

Please private message me if you need to talk.

Massive hugs

Xxx

Sarah1972 profile image
Sarah1972

Thanks for replying, mum was end of life a year ago due to her swallow and high risk of choking (refused peg) however I do think her days are now limited as she is so weak. It’s been a rollercoaster for the past year. If she were a catholic she would have had her last rights 4 times now, but somehow she pulls through, though I’m not so sure this time as she has been in bed for a week now and that is unheard of. She is so worried about leaving her family but I’ve told her she needs to think of herself now and we will be ok but she continues to fight on. The Pallative care nurse came yesterday and said that I should listen to my gut instinct. As she is so compact, when it comes away her body will be exhausted and she will decline more or she could even pick up again. I just want her to be peaceful and for all the worry to leave her xxx

racinlady profile image
racinlady

Bowel issues and constipation were a constant problem for my husband right up until the end. That was really the only discomfort he complained about and his anxiety level would be through the roof every time he went through another episode. The hospice nurses tried everything to get him regular, but nothing worked for long. I always thought it was a 'crappy' way to spend your last days.

I hope they are able to solve your mum's problem. Are they sure she doesn't have a bowel obstruction? Eleven days seems like an awfully long time to not have a bowel movement. Are the nurses talking to a Dr. about this? I think you should be asking this question.

Pat

fletchnojob profile image
fletchnojob

She really needs to be on a daily laxative. Try natural prune juice first but if not something over the counter. My husband has Movicol. Don’t know if you can get them where you are.

VonTripe profile image
VonTripe

my husband with PSP is on 4 -10 Loperamide daily, without it he would be having accidents all the time He has seen specialists, GP etc and loperamide seems to be the only option . He has had this bowel problem for 3 of the 4 years he has had PSP

Thinking of you x

AJK2001 profile image
AJK2001

I know my Mum has gone similar length of time and eventually things have happened. Is you Mum passing wind or not? If she is, that is a sign that the gut is still working and something may happen. If not manual evacuation maybe necessary. Our neighbour used to be a nurse in a hospice and she always says how much more comfortable patients were once constipation was sorted and that it is often underestimated what a difference it can make.

I would ask your Nurses what the next steps are if there is no action and when do they take them. Would they do a manual evacuation and when? Should your Mum see a Dr? Should she go to hospital in case there is a blockage.

I am always asking questions of what do I do in this or that situation, when does it become critical, who should I contact. You need to know this especially with a weekend approaching.

Good luck and I hope you get some movement !!

Sarah1972 profile image
Sarah1972 in reply to AJK2001

So mum has been given oral medication lactose and senna, but she needs 15ml twice daily plus Diazepam 12mls as and when. But her swallow is so weak she can only manage a max of 8 mls at a time so have started to prioritise her diazepam as that’s what settles her the most. She has gone from 5ml enema to an oil one which is 130ml and still nothing. She is bunged up right at her recutum and totally impacted. I will ask today what happens next. Thank you all for your concern and advice xx

Jimjam22 profile image
Jimjam22

Hi there, it's so upsetting dealing with all that goes on with this disease, I went through all this in August, saddly mum passed away, about two weeks before she was constipated had all the usual stuff to help, but it was manual evacuation or nothing, mum just couldn't push and help herself, she couldn't do anything at this stage, it was just a matter of time all she kept trying to tell me is that she wanted to go to heaven, it's so very sad it was a relief when she passed but very sad to watch, my heart goes out to you, just make sure you keep with her and tell her how much she is loved, it will be hard sending love your way Julie xx

Sarah1972 profile image
Sarah1972 in reply to Jimjam22

Thank you Julie, I think this is where mum is at. She had another enema today and have said they will have to come again tomorrow so I can’t see anything moving anytime soon xx

Jimjam22 profile image
Jimjam22 in reply to Sarah1972

I feel so sorry that this is all happening to another family it's heart breaking, I'm only 8 weeks on and it's so very hard, I read nearly everyday about another family in the same situation, I thought it would all be ok after time but every day I remember things see mum's sippy cup in the cupboard walk into her room. A nice lady rang about family support, I think I may need to go have a chat and see if I can at least talk about mum with out bursting in to tears 😥 sending love to you and your family xx

Sarah1972 profile image
Sarah1972 in reply to Jimjam22

I am so sorry for your loss. Please, each time you see a reminder; think of a happy memory and remind yourself that you were there for your mum. Sending you a huge hug xxx

Jimjam22 profile image
Jimjam22 in reply to Sarah1972

Thank you Sarah, I will take your advice and try and remember the good times, not all the sad bits, hope your mum is settled, love to all Julie xx

Willow_rob profile image
Willow_rob

Dear Sarah, I have the same problem with my wife but have so far been able to succeed about every 4 days using a microlax mini enema whilst she is laying down on her left side. It takes a few hours to work. Because she now eats a minute amount and drinks less she is just being kept comfortable. I am afraid this marks the final chapter for her. Be strong. Rob

Sarah1972 profile image
Sarah1972 in reply to Willow_rob

Thanks for this Rob it’s very helpful. She has been given 2x5ml of microlax since Sunday and yesterday was 130ml of peanut oil then 10 ml microlax this morning. The doctor has been and all we can do is keep her as hydrated as possible and keep her comfy. She is still managing about a table spoon of food and has all her family around her (husband son brother sister) but they all have to leave on Sunday and I think that may be too much heartbreak for her xx

Sarah1972 profile image
Sarah1972 in reply to Sarah1972

Sorry to hear your experiencing the same thing. It’s awful to just sit and watch knowing there is nothing more we can do. Big hugs to you both xx

Tttp profile image
Tttp

Hi there I sure hope your mom has had movement, we all have great advice, but we are not Doctors, probably a good idea to take her to the ER. Hope all goes well.

ehardey profile image
ehardey

Have you tried probiotics or gone to see a GI? My mother has had constipation in the past but never that long. Her biggest issues were having diarrhea- very very liquidy- for weeks. And what helped her was going on antibiotics for two weeks as prescribed by the GI and then changing going on probiotics. We use florastor - less expensive through amazon. Also, increasing water intake could help with constipation.

But like the others say, it could be that she needs to go to the ER if it’s a bowel blockage.

Sarah1972 profile image
Sarah1972

Mum to weak to travel, but she doesn’t want to go to the hospital anyway. Thankfully she is not suffering as it’s not in her gut and eating very little. Thank you though x

sivas profile image
sivas

My dad has constipation issues too. My mom gives him Clearlax (laxative) every night (mixed in hot water). Found in USA. She tried other types of laxative but this works the best for him. At one point he was also prescribed Chia seeds (just mix chia seeds with water and drinkit right away before the seeds soak). It worked sometimes but not always.

Marilyn_cbd12 profile image
Marilyn_cbd12

Sarah, I do not have specific advice, but would echo the concerns of those who believe that 11 days is a long time. It seems important to me to get a physician (internist or gastroenterologist) involved asap. I have had small bowel obstructions and they were painful, as well as dangerous. You say that your mother doesn't appear to be suffering, but she must dread the enemas and invasive procedures. Medical team needs to recognize that she is in serious need of attention and, patient and long-suffering as she is, deserves better.

Marilyn

Sarah1972 profile image
Sarah1972 in reply to Marilyn_cbd12

Hi Marilyn, they have explained to mum about having it removed manually but it would be extremely uncomfortable for her, the only other option would be surgery and that would be to risky as can’t open her mouth to be sedated and the trauma would be to much x

Hi. My mom is constantly troubled with constipation and to the extent that she cannot manage the pain and uncomfortable feeling it brings. I have to do manual evacuation when she gets to this stage. NOTHING else works. Once the evacuation is done she settles and soon after passes stool normally.

She is in so much pain when she does get this constipated that she would rather me do the manual evacuation that suffer the pain of the blockage.

So sorry that you are going through this.

This disease is wretched!

I hate it!!!!

Take care. Love to you your mom and your dad.

Sarah1972 profile image
Sarah1972 in reply to DeborahRamsden3602

Thank you for sharing your experience. Mum is able to raise her hand to say she wants to continue with the enemas and to say she is not in pain. She is so peaceful and has all her family around her. As she has spent her life protecting her family, she is still continuing to battle on and not leave us. She needs to let go now and think of herself. She is my idol and so very strong, my love for her is indescribable, she is my everything. I just want her to rest now x

DeborahRamsden3602 profile image
DeborahRamsden3602 in reply to Sarah1972

Stay strong! I'm sorry. Xxx

ketchupman profile image
ketchupman

I know this will sound very gross, but it truly works: Digital Stimulation. What that means, you put on a glove, apply some lubricant to one of your fingers (ie. a digit) and then insert your finger in your loved one's anus. You then have to stimulate the anus by inserting and vibrating your finger for a few minutes. It worked almost every time with my wife, and she sometimes had gone for 2 weeks without passing a stool. And we had tried all types of drugs and over-the-counter products. Enemas often worked for my wife, but ultimately it took the digital stimulation. If you're not comfortable doing that, try to get a nurse to come and perform it. It's not an often spoken procedure, but trust me, most nurses are fully aware of this.

Ketchupman

Sarah1972 profile image
Sarah1972 in reply to ketchupman

Thanks for this, we have a nurse each morning to give enema but before hand she gives mum an internal (sweep) so think this could be the same thing. I will ask in the morning.

ketchupman profile image
ketchupman in reply to Sarah1972

Glad to hear you have a nurse available. It's more than just a sweep, but you actually have to aggressively stimulate the anus and ultimately the bowels. It is sort of like masturbating. Sorry to be so crude. Try googling "digital stimulation constipation" and you will see several articles on how this is done.

Boyce3600 profile image
Boyce3600

My husband was in the hospital in March for a massive stool impaction it was so large I think they told me 9 mm that it was dilating the rectum. We took him to the doctor before he went to the hospital and they told us it was appendicitis because he was in such pain. Believe it or not, he was passing stool at that time, but it was seeping around this tremendous impaction. At the hospital they tried for 7 days giving every kind of enema you can imagine... they gave a molasses and milk enema which was an old family recipe I guess I could say. They tried lactulose enemas; they tried water enemas , warm water enemas and soap enemas. The only thing that worked best for him were the molasses and milk enemas. (Coffee enemas are also very good, from what I hear). They did not do coffee enemas, but anyway he had at least two enemas a day for 7 days actually I think it was more like eight or nine days and it finally reduced the size of the impaction. He laid in the bed that entire time without getting up. He also had double aspiration pneumonia so he was being given antibiotics through IVs. It was a horrible time; I hate to tell you, but it was necessary to give him relief. Impaction is very, very, serious, as is bowel obstruction and my suggestion wpuld be to get your loved one to the hospital asap. My husband is 100% dependent on me and his caregivers, who helped get him to the hospital. i A home health nurse coming to the house is good, but since it's been so long since a movement the nurse cannot do this alone . I'm not a doctor I'm just basing this on my recent experience. It took constant enemas and care if she hasn't gone in that long of a time it could be an obstruction or something else, as well. It is so scary and believe me I cried buckets of tears for days and days but the outcome was really good . He resumed home health and therapy when he got back; he felt better and we connected with more doctors AND we finally have a bowel regimen that is working. He takes 60 ml Lactulose a day...liquid ...one 290 mg Linzess, and 4 Senna Lax OTC at night to get the muscle contractions needed to get things moving on out. All mixed with juice or food; he no longer swallows pills.

When they have all of that stool inside of them, bacteria and toxins build up; it causes confusion and all kind of issues. I've learned so much I never even wanted to know. My heart goes out to you . I am praying for you both. I have to say he is more regular now that he's ever been in his life and especially since this disease has come upon him. Everybody's different. I know Miralax is good and there are lots of other things that are good . While he was laying in the bed for those days, he lost his ability to walk so he had to go to rehab to get physical therapy to get back at least to the condition he was in before he went in the hospital. Basically, the whole thing took us a month. I'm not trying to scare you. I'm just saying that it's extremely uncomfortable for the patient and grueling for us to watch, but it turned out to be better in the end. I wish u both the help you need, peace and comfort. God Bless You!

Sarah1972 profile image
Sarah1972 in reply to Boyce3600

Thank you Boyce, I spoke with Pallative care this morning and they have asked if it is worth putting mum through the trauma if she is not in pain. When the doctor arrived she did an examination and results are that everything is sitting at the rectum (has been there for 2weeks now) however her stomach is soft so there is no blockage in the intestines. She also does not feel it would be fair to remove it as she is at end of life and therefore not in her best interest. I just hope for her sake that things happen quickly. Once again thank you for your advice x

Boyce3600 profile image
Boyce3600 in reply to Sarah1972

I understand. God Bless her and u all!

Anjeli_Hazari profile image
Anjeli_Hazari

Please give her Senna leaves or Senna teabags immediately. It works like magic within 8 hours.

Anjeli_Hazari profile image
Anjeli_Hazari

Please give her Senna leaves or Senna teabags immediately. It works like magic within 8 hours.

Sarah1972 profile image
Sarah1972 in reply to Anjeli_Hazari

Unfortunately it didn’t work she had been trying to have 15mls a night but kept choking so after no movement and 3 days of it we stopped. She was also having lactose and daily enemas(various ones). They have stopped now as she is not in any discomfort he tummy is soft she just has a build up at the entrance of her bottom and won’t soften. She is hardly drinking which does not help. She is end of life so we’re just trying to keep her comfy and settled. Thanks for your advice though. I love this page and how every one helps each other. I would have been lost without xxxx

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