Bowel issues - urgent help needed - Endometriosis UK

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Bowel issues - urgent help needed

cupcakegirl profile image
23 Replies

I have been dx with Endo since 2004 and have been on opiates pretty much continuously since then. As a result, my bowels no longer work on their own. Sorry, this may well be TMI for some...

I can't drink Movicol, I've tried but the saltiness makes me gag. The only thing I've found to work is to take 15mg of Dulcolax (bisacodyl) every 4 days, it works but it's basically like having food poisoning for 12 hours. I use glycerine suppositories if I get impacted which work well if I've taken laxatives but do nothing if I haven't - clearly my bowel is sluggish and not moving things through, so there's nothing for the suppositories to work on if I haven't taken laxatives. I tried those micro enema things (small tubes of gel) and had the same problem. senna does nothing for me. If I only take 10mg of Dulcolax it will usually work, but it won't have worked completely so I end up with problems a few days later.

My problem now is that I'm going on holiday next week - we are flying out on Thursday and flying back on Monday night. I don't want to waste a whole day of our trip being stuck by the bathroom. Ideally I need something I can take every day which will get things moving but won't give me awful cramps and diarrhoea. I can't not go the whole trip or I will end up with an obstruction.

I can't be the only person with this problem - does anyone have any ideas? Seeing my GP the night before I go so I can get a prescription if anyone has any suggestions.

Thanks

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23 Replies
JeanOsborne profile image
JeanOsborne

Hi you could try magnesium tablets one every other day . I've found them a godsend

cupcakegirl profile image
cupcakegirl in reply toJeanOsborne

Just magnesium, like a supplement? I've drunk the milk of magnesia stuff before ( utterly disgusting) but didn't know tablets would work. I'll look into that, thanks x

JeanOsborne profile image
JeanOsborne in reply tocupcakegirl

Yeah it is horrible and expensive. The tablets have been great

cupcakegirl profile image
cupcakegirl in reply toJeanOsborne

Thanks Jean. Can I ask what dose you take and whether you need to take anything else with it? Sorry for all the questions - just looked and there are tabs from 100mg to 100mg.

I think I might trial taking just 5mg of bisacodyl every night and see what happens over the next five days - it might be enough for me to just go a bit every day and prevent an obstruction while I'm away.

JeanOsborne profile image
JeanOsborne in reply tocupcakegirl

The one I take are magnesium and vitamin b6 - 375mg . I found I take one in the morning and within half an hour I need to go. They seem to soften stools so you're not straining . Hopes this helps.

cupcakegirl profile image
cupcakegirl in reply toJeanOsborne

That's so helpful, thanks so much - I will pick some up tomorrow.

Breadmouse profile image
Breadmouse

Hi..I'm sorry Im not speaking from experience but have you tried fibogel. It Bulls out your stool...or lactulose which is sickly sweet but attracts water to your stool

cupcakegirl profile image
cupcakegirl in reply toBreadmouse

Yes, tried those. It's more of a movement issue I think - what I need is something that gets my bowel moving and those things don't seem to help that. Really appreciate the suggestion though :)

Di-Mc profile image
Di-Mc

Hi

I have the same problem.....I generally need to take Dulcolax every evening and then use a Glycerine suppository most mornings to start things off.

Could you cope with low dose Dulcolax each day whilst you are away, so that you don't get a build up and then have to go loads ?

I have recently started taking Magnesium tablets and think they do help !

cupcakegirl profile image
cupcakegirl in reply toDi-Mc

Thats what I'm planning. I took a full dose on Thursday night and had a hideous day with it yesterday. Last night I took just one 5mg tablet before bed. I will take another one tonight, and if I haven't gone by tomorrow morning I will try a suppository tomorrow.

Ordinarily I'd go again on Monday and again on Thursday but can't feel like I did yesterday while travelling to an airport and on a plane. Its less awful if I go every four days rather than three, but can't plan it that way before I go. Really hoping that the small dose of bisacodyl each night will work - might take some dulcoease as well. I'll also get some magnesium and will give that a go.

Brownlow profile image
Brownlow

Following surgery I had really very bad constipation. Didn't go for 4 days! I took an Ayurvedic formula that is very gentle in comparison to the nuclear options you are trying. It's called Triphala and was recommended by an Ayurvedic practitioner who is also a doctor. When I was bad I took one three times a day and it definitely helped. It is also good for gynae issues. Try to buy organic. PM me if you want the supplier.

I also used Aloe Vera juice 2ml for every kilogram of body weight once a day. I used Pukka organic. It must be juice from the inner leaf. On special offer at Baldwins baldwins.co.uk/pukka-herbs-...

Drink plenty of fluids throughout the day and stay hydrated. I know that your endo and the opiates are contributing/causing the trouble but dehydration is a big cause of constipation.

Foods I ate were 2 dried prunes soaked for a while in water and eaten before food. They contain sorbitol which promotes peristalsis. Also kiwis and mint tea. Buckets of mint tea. Mint is great fir the digestion and gas etc.

I also recommend lying down and doing some slow deep breathing a few times a day. Good video here m.youtube.com/watch?v=67SeR... Try mindfulness meditation too. Calming the mind will help relax your bowel muscles. You might find that being on holiday and relaxing will help a lot.

Castor oil was also recommended by the Auyrvedic practitioner but I didn't need to use it. It is very potent and can upset your tummy. The recommendation was to start off slow with about a teaspoon of organic castor oil and see how you feel. Stop if you feel unwell or continue if ok.

I also tried magnesium but I didn't like it. The form to take is powdered magnesium citrate. It is the most easily absorbed form of magnesium. Start off slow with half a teaspoon. A you increase the dose you might get bowel cramps so regulate the dose back down. I don't like this method though. It didn't suit me.

Accupressure will help too. acupressurepointsguide.com/...

Some essential oils are also said to help but I didn't try any. Try searching online for good ones to use.

Whole flax seeds are often recommended but they are oestrogenic and could cause your endo symptoms to flare so best avoided. Chia seeds would be better but they must be soaked in water to form a gel first otherwise they will make matters worse.

Natural Constipation relief ideas found online...I didn't try all of these!...

olive oil 2 x tablespoons on empty stomach

warm water and lemon juice (I drink this first thing every morning)

molasses- 1 teaspoon in warm water then increase to 2 tea if nothing happens

baking soda 1 teaspoon in 1/4 cup warm water, drink fast

coffee!! or tea but caffeine is oestrogenic so be careful

broccoli

apples

pears

kiwis

dried prunes

magnesium citrate

nuts

baked potato skin on

baked sweet potato skin on

raisins

dried apricot

popcorn

kidney beans

berries

sauerkraut - I make my own. Very good for digestion and probiotics.

celery

probiotic coconut yoghurt - I used Coyo yoghurt. Expensive but good probiotics. Avoid actimel or live youghurt, dairy is best avoided with endo and actimel is full of sugar and not much else.

It's a case of trial and error. I would avoid any branded OTC products and steer clear of Senna. Your bowels will eventually be unable to work without 'help' if you take Senna.

cupcakegirl profile image
cupcakegirl in reply toBrownlow

Thanks for all this, I will look through it all. I only take Dulcolax as it's what my specialist recommends and does encourage normal bowel function.

I've tried a few of these things already - what I find frustrating is that I either don't go at all or it's like I've eaten something very bad - it takes a whole day of exhaustion, cramps, running to the loo etc. I just want something that will make me go like a normal person and without the pain, fatigue or urgency.

That's nothing - before my first treatment lap, I used to have cramps and diarrhoea every time I ate. My specialist gave me a bowel prep and removed a load of adhesions from my bowel - I didn't go for 14 days after that surgery. When I finally did, with the help of various meds, I thought I was in labour. My bowel has never worked well since - once I recovered it worked a bit better, but as my morphine went up it stopped working altogether. I spent three years only able to go on weekends. It was horrendous.

Waiting for a lap and hoping to get my morphine down afterwards so hoping things can get back to normal one day.

cupcakegirl profile image
cupcakegirl in reply toBrownlow

Oh and just for fun, I'm allergic to all nuts and seeds, so many natural remedies are things that could kill me. Anything coconut is out which is a shame as I know it's good for lots of things.

I'm wondering whether probiotic and prebiotic capsules from a health food shop would help as all the laxatives have probably stripped a lot of the good bacteria away but I don't know if they work and they're very expensive.

Brownlow profile image
Brownlow in reply tocupcakegirl

I'm not keen on the probiotics from healthfood shops and prefer to get my probiotics from fermented foods. I eat sauerkraut. I either make it or use Biona's organic sauerkraut. It's not pasteurised so it still has all the beneficial bacteria. I would also recommend kefir but have not used it myself. It is made from milk though so if any dairy allergies the water kefir might be better. The woman who said up this UK company healed her bowel issues with kefir nourishkefir.co.uk

I tried a probiotic called VSL3 vsl3.co.uk Lloyds stock it. You can ring a branch and ask if they have it. They will order it for you. It has to be always refrigerated but can be kept in temperatures up to 25 degrees for a few days. I used one sachet a day but my bowels started cramping so I had to stop. This is why I try gentler methods outlined in my post above. If you try this and get cramps, reduce the dose to 1/4 a sachet or 1/2 a sachet.

Ideally, I would recommend a naturopath. PM me if you want the name of a good one. She will do appointments over Skype. It sounds to me that you have some very difficult bowel issues that can't be 'fixed' overnight. Modern medicine is useless at treating this sort of thing. Getting off the morphine will be a big step in the right direction. I hope you get your op soon.

Here's a good overview of coconut and nut allergies blog.onespotallergy.com/201... I would guess that if you have an allergic reaction to coconut it's not because of your nut allergy but a separate allergy to coconut itself. Do you have an allergic reaction to coconut?

Your allergies indicate leaky gut. Plenty online about this. Also present with endometriosis. There's some good information online on how to correct this but it requires patience and can't be remedied by a pill from the doctor. They wouldn't have a clue.

cupcakegirl profile image
cupcakegirl in reply toBrownlow

Yes coconut (have to be very careful with skin products etc), all nuts especially cashew, seeds particularly sesame, nutmeg and all kinds of other related things. I had no allergies until I was 10, and then they started overnight.

I think the morphine is my biggest problem, as it has been much improved on the few occasions when it has been reduced, so I'm hoping to get this lap out of the way, get the morphine down and then tackle it from a better position. For now my ideal is something that will make me go a little every day without the cramps and diarrhoea, so I don't have a serious problem on holiday or when I get home!

I'm limited in what I could get today - I've found some magnesium but only in a supplement with calcium and vitamin D, and some peppermint oil capsules. Might go online and see if I can get some magnesium citrate powder delivered before I go. I'll look into the other stuff too.

Thanks everyone

Di-Mc profile image
Di-Mc in reply tocupcakegirl

I also have a severe allergy to Coconut !

My Gastro Consultant is talking about me having strong Probiotics after I have taken Constella for my IBS for a period of time. She wants to see if the Constella helps first before introducing other things. Personally I would prefer to start with the Probiotics being more natural IMO but can't get her to do that way round.

cupcakegirl profile image
cupcakegirl in reply toDi-Mc

I've heard good things about Constella but I gather it does take a little while to settle down. I know that it is not fun always needing to be near the loo - that's how I've ended up in this situation where I only go every 3-4 days, and when I do it's hideous.

Di-Mc profile image
Di-Mc in reply tocupcakegirl

Well I have decided to start over again tomorrow with it, so fingers crossed it works well this time !

Di-Mc profile image
Di-Mc in reply toBrownlow

Thanks for that list Brownlow !

I have been prescribed Constella tried it for couple of days and first it made me rush to the loo then left me sick and bloated the following day. The consultant wants me to try it again but am worried about the urgency I needed, as I am not always near a loo.

I like the sound of these more natural approaches you have mentioned and am keeping a food diary and trying to work out my triggers for my IBSC but having had Endo, it is interesting what you say about certain foods re that too !

I can't have anything Coconut as I have severe allergy to that.

cupcakegirl profile image
cupcakegirl

One more thing - peppermint tea makes me gag, I think mentally I relate it to laps too much! I know you can get peppermint oil capsules - has anyone tried those? My mum took them before she passed away as her bowel stopped functioning but I don't know if they helped her.

Does anyone know if Movicol comes in any other form than powder? I just can't drink it, I've tried so many times.

persil profile image
persil

Hi

Have you tried lactose you would need to take it every day and it would make going to the !oo more natural.

Good luck

Persil xx

Meekos profile image
Meekos

Hi, isn't it terrible.

It sounds like you need a to combine a stimulant laxative (to encourage peristalsis) as well as a softener or osmotic laxative. Senna is a stimulant laxative, as is bisacodyl. Have you tried increasing the dose of senna? There is an alternative to movicol called osmolax it's the same product but does not have the salty taste at all! You can mix with cordial or juice etc. I would avoid fibre products that bulk up the stool unless your drinking bucket loads of water... As they do just that... Bulk up your stool, and when it's not moving that's the last thing you want. Definitely have a chat with your pharmacist as they will know which laxatives fall into which category. If you are constipated you are probably going to have a degree of cramping with anything you use as it starts to encourage stool movement. But in my experience the gentlest laxative is osmolax. I'm sure you prob know this but also ensure you up your water intake, I also find warm drinks and teas help before I'm trying to go...

good luck...

Meekos profile image
Meekos

I thought I would also mention, I have been on ABs recently and thought that probiotics would be a good idea... They made me so constipated! As soon as I stopped them (the probiotics) the problem resolved. I'm prob the only person on earth that has experienced this but just so you know.

Again, good luck.

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