constipation and pain.

[mogs]

Hi. My mum had her first chemo session on Wednesday. They almost cancelled it as she passed some blood when going to the loo as she is so constipated (She had not gone to the toilet for 10 days). Thankfully, they went ahead and she has coped really well. She has been a little sleepy but nothing like she expected. However, the constipation is a real problem. She managed to go to the toilet last night but was in agony. She is now too afraid to take her Laxido sachets as she is in pain and afraid they may make her go again. Even passing water hurts as she is sore. We're not due to have our first visit from a Macmillan nurse until 24th March and I just feel as if I'm constantly phoning people asking for help.(my dad had a brain haemorrhage and my mum has been looking after him, so I'm trying to do as much as I can at the moment). She is still in some pain with her back. She takes Gabapentin but says that her back pain is always there. Is this normal?

On top of this she is barely eating. Again, my dad eats very little during the day and I have to ring him from work to check that he's given my mum something to eat. When I called in after work she had nibbled on a small packet of fruit all day but has failed to finish it. She says she feels full. Any advice on what I can give her? So sorry for all the questions.

[Cathy]

Hi

I'm sorry to hear about your Mum. But also glad she has had her first cycle and feels ok (a good sign).

Can you chase the Macmillan nurse and get an earlier appointment and/or get a prescription from the GP for better pain killers? Pain from constipation vs constipation is a real dilemma as one (certain painkillers such as codeine and morphine) can also cause constipation.

My Jonathan had the same and had a real cocktail of anti constipation pills to help. My feeling is to get to grips with the pain first and foremost.

Re food. The GP can also prescribe high calorie drinks (such as Fortisip) or powder to sprinkle on food to raise the calorific value. In the meantime what I did was add cream to everything (like milky drinks, soups etc).

Good luck. Let us know how you get on.

Cathy xxx

[mogs]

Hi Cathy,

I'm going to ring the Macmillan nurse tomorrow to to see if she can see mum earlier.I cannot believe that she hasn't had any emotional support. No-one has sat with her and asked her how she's feeling or coping and to me her mental state and keeping her positive is just as important.

I was thinking of giving her a drink (as she's not drinking much either) but didn't know the name of any. I'll also mention her back pain to the GP. I'm still not happy with her pain relief but feel as if they're going to refuse to take my calls -as all I seem to be doing is complaining but I genuinely think that the way in which she has been looked after is dreadful.

Thanks for replying.

Cara xx

[Jwilson]

Mogs, hi. You can have calshakes prescribed. They are high in calories and like a milkshake. You put a thick liquid part in a shaker along with milk and ice cream. That might be worth a try. Laxido or movacol for the constipation. They are fairly gentle but if you need a bomb try co danthramer or even strong co danthramer.

June......good luck

[mogs]

Oh my goodness. I was going to post earlier this week that my mum seems to be much improved. We'd eventually got her pain under some control, she had been put on steroids so her appetite was back, she was back sleeping in her bed (after sleeping on the settee since being diagnosed) and she had been to the loo!! However, since late Tuesday evening she has been suffering with dysentery. It seems to have got worse as the week has gone on. She was in tears on the phone this morning as on some occasions she hadn't made it to the loo. I can only imagine how distressing this must be for her. After such severe constipation,what could be causing this? We've tried ringing the nurses but have missed their pick up time and wont be able to speak to them until this evening. Is this normal? Could it be the chemo? She's just had her third session of her first round. Thanks Cara x

[sandraW]

Hi Cara,

My husband has not suffered with diarrhoea just loose motions usually around day 4 or 5,is she taking Creon? with her meals, hope she feels better soon take care sandrax

[nikkis]

Hi Cara,

Sorry to hear your mum feels rough. This thing has a habit of tripping you up when you are starting to feel positive.

So many things can could be causing your mum's problems. It could be the chemo, (when my husband was on folfirinox it was terrible), or the cancer itself. You can also get diarrhoea when you are constipated, called overflow. Even if she is taking creon it might be worth increasing it. Make sure she is taking lots of fluids.

Have you tried the nurses here? They will be able to advise you,

Nikki

[mogs]

Thanks both. Nikki-you are so right. We were starting to feel more positive.

She isn't taking Creons - I haven't heard of that. Oh dear-is this something else that she should be taking? I was wondering if it could be from the constipation as she has taken so many things to try and make her go. Hopefully we'll get some answers later x

[Guest]

Cara,

Creon is a pancreas enzyme replacement. Basically it does the job of the pancreas. My dad is struggling with his amounts right now as it still isn't enough.

Can't believe they haven't given your mum these. I wouldn't ask the gp as my dads only wanted to give him one a day! At the minute he is having 9 40,000 with any meal! Speak to your mums oncologist or dietician and they will give you some straight away and advise how to use it. Your mum cannot overdose on these as they are enzymes which the pancreas usually produces.

[mogs]

Thank you for replying. My mum doesn't have a dietician and no-one has mentioned Creons. I've seen it mentioned on here but didnt know what they were. She spoke to the Macmillan nurse who said the dysentery may be caused by her acid tablets or she may have picked up a 'bug'!! She seems to have eventually settled a little today after going through two boxes of imodium (the nurse told her to keep taking them). She's with her 'pain' doctor on Monday and I've told her she needs to tell him how bad it was. He discusses her pain but doesn't really mention anything else. I will certainly be asking him about Creons. Thank you so much for explaining it to me x

[nikkis]

Hi cara,

This is the link to the page on creon. Would think you mum should be definitely on it, but only doctors and nurses specialising in PC know this,

http://www.pancreaticcancer.org.uk/information-and-support/diet-living-with-pancreatic-cancer/diet

Nikki

[Guest]

Please let us know how you get on on Monday.

If the doctor doesn't know about creon, or does know but not much knowledge, i.e: doesn't understand the amount people need, as everyone is different. Mention Jeni and Dianne to them, and give the doctor their number and ask him to call them. I did this with my dads clinical trial nurse. He called Jeni and she discussed creon with him and then he passed the info onto my dad. At the time, but dad was relying in his gp ( as you do) who was telling him one a day, and to absolutely not increase his dose.

In fact, I would advise you to call Jeni or Dianne anyway, and ask about creon. It is a very complex thing, that takes time to get right. I just don't want your mum to be confused about them and to be scared to take a lot, ( if she needs to ).

Xx

[Cathy]

Hi Cara

It could well just be the chemo ("just" ha!) that is causing this. Like you we hadn't heard about creons other than thru this site. In our case, maybe in yours, it could be as they weren't at that point considered needed. However, mention them. I'm sure if we hadn't it would have taken a while to get them.

Very best of luck

Cathy xxx

Edited April 1, 2014 by Cathy

[Guest]

How did you get on today?

x

[mogs]

Thanks for posting the link.

Cathy - you're message did make me smile 'Just chemo!'. It shows how 'everyday' this craziness has become. We actually had the doctor out to her on Sunday as Saturday night was just horrific. The doctor agreed that she thought it was a bug and not the cancer or chemo causing the dysentery. They gave her some antibiotics to take and told her she needed to drink 5 bottles of water a day!!! (she cant drink that much on her 'well days'). She's been eating dry toast and fingers crossed was looking much better tonight.

She also mixed up her hospital appointments - she's due to see her doctor tomorrow not today. This was a bit of a relief really as it would have taken a lot out of her to try and make it there today. Hopefully, she'll be even stronger tomorrow and we can ask about Creons. Thanks all x