Severe distention and tightness

[Michaela1]

Hi everyone,

I've started this thread to see if anyone can help me with this problem, e.g cause, relief, advice, anything!!

Since I was diagnosed really around 6 weeks ago my stomach has been so bloated it looks like I am full term pregnant. I have been constipated since starting meds e.g morphine tablets so Drs have Been trying to get that sorted and clearly think that is the problem with why my tummy is so big I guess. I have been on different meds for constipation and even had an enema, recently there has been movement but tummy is still playing up! I thought it got worse after eating, but really there does not seem to be any pattern to it. It is always bloated (since diagnosis) but it has times that it just gets so painful that I struggle to walk and the pain is horrible. The only thing that eases is a little is a hot water bottle!

I have had one round of chemo and had a couple of side effects but nothing as to what this distention causes! It is ruining my everyday daytime being if you understand me!? I can cope with the chemo just not this! I have come away for a couple of days with my new wife and now she is fed up too as I do not feel like going out and exploring as it causes the discomfort then pain then nausea, all I want to do is curl up with hot water bottle.....all she wants to do is escape the room.....which of course I do too!

Any help gratefully received

Michaela

[toodotty]

Hi Michaela,

I had exactly the same symptoms, sometimes even when I hadn't eaten anything. I say it feels like the second stage of labour when you really do not know what to do with yourself. I have tried rocking on the toilet, on my hands and knees on the floor, pacing about etc. I do not use morphine so this is not a side effect for me.

It has got better through the chemo and now for most of the time I do not suffer from it. I would say that the diet is the main contributor, but it is also important to get exercise just to speed up the metabolism a bit.

Don't forget you can eat fruit without Creon. Cherries work for me, I have them for first breakfast to wake up the digestion. Apples and organic apple juice can also sort out some of the bloating.

Good luck,

toodotty

[Michaela1]

Thanks toodotty, I am sorry you are suffering with it too, I will get the cherries and Apple juice! When you say exercise do you mean when it is actually hurting as I feel like I just need to sit and crouch forward with my water bottle.....if I move it hurts! It is very random isn't it, there seems to be nothing that sets it off it just happens!? I hope the chemo eases it, I have almost convinced myself it is ascites!?

[kate2101]

Hi Michaela

Really sorry to hear you are still so uncomfortable. I also had bloating but by the sound of it nowhere near as bad as you. If any consolation, it has eased after my second chemo. I still get burning stomach cramps and a bit of bloating but the constipation is better. (Piles now a nuisance just to give you something else to look forward to!)

I’m not sure what advice to give you other than loads of fruit, veg and water, fruit juices. What about live bio yogurts, pro-biotic drinks such as Actimel? I would definitely be suggesting that in a non cancer situation, worth a try.

Hope you managed to enjoy some of your break and so sorry again you are suffering. Perhaps you should go back to the doctor again today?

Xx

[Veema]

Michaela, I know your doctors have said it's not fluid, but it might be worth asking for an ultrasound. My husband was like this and I was convinced it was fluid, but all the doctors said not...when they eventually scanned him, he had 7 litres drained off...the difference was amazing.

Vx

[Michaela1]

Hi Veema,

I have spoken with my nurse today and she is going to speak with my consultant on Wednesday and then call me, I think they will be giving me an ultrasound to check! I think I am convinced it is fluid, especially as now I have gone to the toilet.....yet still swollen! I will keep taking the laxatives though as they say to make sure you keep going regular, and I guess if my body is not doing it naturally itself then take the horrible movicol I must!

M x

[PCUK Nurse Jeni]

Hi Michaela,

I assume you are taking creon for your digestion?

If so, what dose are you taking? Its possible that you are not taking enough, and this might be contributing to the issue.

Do email us - details below.

Kind regards,

Jeni.

Jeni Jones

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707

[toodotty]

Hi Michaela,

By exercise I mean walking, especially after having just eaten. Let gravity to the work, it doesn't have to be miles just a walk around the garden a couple of times, as much as you feel comfortable with. As you get through chemo then increase your distance or find a nice walk you can do with someone. It used to be called "Going for a constitutional", and I think for a good reason. About to go for mine, 30 minute walk around the perimeter of the hospital before returning to the ward.

toodotty

[Michaela1]

Hi Toodotty,

How did your walk go? I didn't realise you were in hospital at the moment, are you ok? What part of the country do you live? I live in n.e. Lincolnshire. Yes I have been walking around too.....sometimes I just pace back and forwards to try and ease the pain! I spent 5 hours walking around Sheffield today looking at their Lego expedition! I think I may have over done it slightly! I had a couple of tea/coffee rests, but my body just does not want to do what it could easily do a couple of months ago! I do not know if this is down to the pain from swelling or the cancer or the chemo!? I think I also thought that you would get all your side effects straight away after a couple of days after the chemo, but it seems they can come like a week after treatment!? I think I have a lot to learn.

I have been reading your nano knife posts too....i am like you, stage 4, Mets on liver and it in the

Peritoneal cavity as well, and other places so I think I am a 'non fixer' at present....also a never say never kind of person too! I think even if it shrunk they would not touch me with a barge pole. But hey they say I can have up to 2 years, so you never know what changes can happen in them times! You take care, will you escape hospital soon?

Hi Jenni

Yes I take creon..40,000 with a meal(could be soup, or couple of wetabix). 10,000-20,000 with a snack, so if I have a bag of ringo crisps for example I'd have 10,000, but banana strawberry and Apple juice smoothie I would take 20,000.

Michaela x

[Dandygal76]

Hi Michaela,

I only have experience of my partner with IBS type bloating (he has it really bad) and he finds probiotics like Symprove really useful. You can get them from Amazon and these are well researched by me - there are some types that are pretty useless. To me it is not a far stretch that the chemo may be reeking havoc on you gut flora. Please though - I am no doctor and although I know it is safe for a healthy person I do not know if it is safe when on chemo. Ask PCUK or your doctors.

DG x

[Dandygal76]

Okay - def talk to your dr first as it seems it can potentially cause probs when on chemo...

https://www.livestrong.com/article/234697-uses-for-chemotherapy-other-than-cancer/

Sorry - I should have looked before I jumped.

[Michaela1]

Hi Dandy et al

Well now I have to go in hosp Fri overnight and have a drain fitted apparently, so I guess they are now putting it down to fluid......they haven't done an ultrasound yet.....they will before though! I thought they would just drain it off though, why a drain fitted?

Michaela

[kate2101]

Hi Michaela

So sorry you’re still having problems but hopefully this will sort it out for you and make you more comfortable. Good luck for Friday x

[Veema]

They may be fitting a drain just to drain off what is there, or sometimes you can have a drain which is left in as the fluid can return.

Vx

[Veema]

Photos of my husband before and after the drain

[attachment=1]nige1.jpg[/attachment]

[attachment=0]nige2.jpg[/attachment]

[toodotty]

Hi Michaela,

Make sure you either take your notes with you, or you create a summary of your treatment so far. This is especially true if you are being treated at a different hospital to your cancer centre. It is really difficult for the doctors to make anything other than a general assumption about your condition if they do not know or understand your treatment background.

Yes Michaela, I have been stuck in hospital for 6 days with a blocked bile stent which was successfully replaced yesterday, though still only a plastic stent so I will probably have to have it done again within a month. My comments about general assumptions are borne out of my recent experience and I am pleased to say that I escaped yesterday evening with my sanity and my PICC line intact. I am feeling absolutely fine other than depressed, malnourished and exhausted by the whole experience.

Do not be bullied into taking medication that seems either inappropriate or potentially may compromise your treatment, challenge everything! The hospital I was at seemed to be running a "mass medication" programme and doling tablets and injections to all. Everyday I had to have a heated discussion with various people as to why I did not want a blood thinner injected into my stomach on a daily basis (especially as I had a surgical procedure due). My cancer nurse was in total agreement, "But that is only used on patients who are long term bed-bound, it is totally unnecessary for you" was her comment.

Good that they are giving you an ultrasound to see if they can get to the bottom of your problem. My excessive bloating was not fluid related, in fact I have no idea what caused it but it has gone now.

Good luck for tomorrow,

toodotty (aka stroppycow)

[Dandygal76]

Oh I love the change in his face. He looks so much happier. X

[Michaela1]

That's great you managed to escape , not so great only a plastic stent! I'm sorry your feeling so rubbish at the mo, I felt like that last night when my body suddenly decided to give me diarrhoea and vomiting! When you are Sat on the loo with a bucket in hand sweat dripping off you at 2 a.m you really do feel sorry for yourself! However when I woke up this morning my stomach although feeling like I'd been punched 50 times by a pro boxer, it actually looked and felt softer than it had since I'd had my diagnosis! I wonder if somehow the 'fluid' or whatever it is somehow dislodged itself and has gone? So I'm hoping when I have the ultrasound tomorrow all will be ok and I won't need a drain fitted! If I do have to have it fitted it will delay my 2nd round which is due Tuesday because of greater risk of infection.

I hope things start to get a bit better for you toodotty aka stroppycow, and that you can get some rest and food. Take care.x

[Michaela1]

Sorry Kate and Veema only just noticed you had written too! Went straight to last page and didn't realise there was more messages! The pic of your husband certainly made a difference from having the drain done.......especially the fact he looks much happier after!x