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Endometriosis UK
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Living with bowel endo!

I just wanted to find out how others deal with the day to day management of bowel endo.

I have stage 4 endo which affects my sigmoid colon. I have had a sigmoidoscopy and biopsy done which confirm this (and thankfully rules out any other causes) and two laparoscopies one in 2014 and one in October this year. My bowel was not touched due to risk of complications and a possibilty of stoma (my choice).

I just want to know how others make it less life consuming. I get constipation pretty much all month so take movicol and lactulose on a regular basis and am pretty much always bloated with a lot of mucus on my stool. When on my period it is heavy with blood in my stool (this goes at the end of the period but the bowel never seems to settle). It makes me feel dreadfully self concious and down and depressed as it really takes over your life! Has anyone got any super tips or homeopathic suggestions for management?? Does anyone get these symptoms??

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Hi Jaffacake3719

I know just how you feel...I've been living with the exact same symptoms as you describe for most of my life, although the problem became really severe back in 2013/4 when I started bleeding from back passage during my period and ended up excruciating pain. It does take over your life!!! It makes you very self-conscious and thoroughly miserable!!!

I was initially told I had bowel cancer by my useless GP and went to see a bowel specialist at my hospital who, after 2 years of tests, diagnosed a slow transit colon and chronic constipation and told me to eat no fibre and take laxatives every day of my life.

The problem is that from what I've read, laxatives become habit forming and ultimately encourage your bowel to stop doing its proper job...so it seems that it's counter-productive to take laxatives on a regular basis. I've also read that they act like 'paint-strippers' and remove all the gut-friendly bacteria which helps to keep the bowel in good health.

I decided that based on what I'd read and based on the fact that even with the laxatives my bowel still wasn't functioning normally that I'd have to treat myself. Although my bowel problems are still there (not surprising because according to my latest sigmoidoscopy endometrial tissue has been found INSIDE the sigmoid colon and my lap revealed the back of my cervix is completely attached to the sigmoid colon) I can honestly say I very rarely have constipation any more.

The way I've managed to treat the condition is firstly by cutting out laxatives altogether. I've also radically changed my diet so that I'm cutting out all inflammatory or oestrogenic food...so no caffeine, refined sugar (I'm replacing 'normal' sugar with honey, maple syrup, agave syrup etc. but don't really have a sweet tooth so I don't have much of any of these substitutes), alcohol, dairy products from cows (I do have some sheep's cheese like manchego and feta - you can also have goat products, but I don't like them), wheat products, refined oils (I only have cold-pressed oils like olive oil, coconut oil and hemp seed oil) or soy products. It sounds restrictive, but I've found I've adapted quite well. I'm eating oily fish (tuna, salmon, mackerel, sardines, etc.) (I wasn't a meat-eater in the first place, so I don't have meat), loads of vegetables and fruit, eggs, nuts and seeds (chia and flax seeds are supposed to be very good, in particular).

In addition I'm drinking a lot more water (purified) than I ever did before and having lots of herbal tea.

In terms of supplements (based on my reading again), every day I have magnesium tablets (supposed to help prevent constipation), a probiotic pill, turmeric pills (supposed to be anti-inflammatory), some ground flaxseed with my breakfast, Krill or Cod liver oil tablet and Serrapeptase pills (supposed to be good for auto-immune diseases). Before I go to bed every night I also have a 'tea' made from Triphala powder mixed with hot water. To be honest it tastes really, really bitter and horrible, but you can add honey or cocoa/cacao powder to it to make it taste slightly better! It's supposed to be a colon cleanser and you only need to take a very small amount - a quarter of a teaspoon is what's recommended. Psyllium husk is also recommended to treat constipation. I often have it in the wheat-free flour I make up when I'm baking something. You could try sprinkling some of this into smoothies or on breakfast cereal too.

I've also read that another 'natural' treatment for constipation is slippery elm, although I've yet to try it.

Regular exercise may also help...a brisk walk every day can sometimes help to get things moving and yoga can be good, as can jumping up and down on the spot, especially when you feel you need to go to the toilet but can't.

Although I always felt that I had a healthy diet in the past, the recent changes I've made have REALLY improved my bowel function..and I'm sure the supplements are helping too. Recently when I had my latest sigmoidoscopy I was told not to eat any fibre for 2 days before the procedure and then was given Picolax to drink the day before and the morning of the procedure. After just 2 days of not eating any fibre (I just had eggs, potatoes and fish) I suddenly became horribly constipated again and felt awful. The Picolax took 15 hours to kick in and when I had the sigmoidoscopy performed my bowel wasn't completely clear...it took 7 days for my bowel to get back to normal again, so I'm convinced my diet (with the supplements) is now key to me being able to keep my bowel functioning 'properly'. Every day now I'm able to go to the toilet at least twice a day...such a wonderful change from how I used to be!!!

Anyway, so sorry for the really long post! Although my approach may not be for everyone it's really worked for me and from what I've read it's also recommended by dieticians, nutritionists and doctors, so it might well be worth trying out.

I do hope you can treat these debilitating symptoms soon and best of luck in the management of this horrible disease!!!

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Hi quick question do you know how many supplements you can take because my boyfriend always moans and says I shouldnt take too much 😮 I only take friendly bacteria, immune system tablets, vitamins and minerals and peppermint oil 😮

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Hi Abi_97

Sorry, I thought I'd already replied to this but when I looked back I couldn't see it...so please forgive me if you get an almost identical message to this one!!

Yes, I know what your boyfriend means when he says maybe you shouldn't take too many supplements...I also was unsure whether to take more than one kind of supplement at a time. The way I approached it was to start with just taking one to see whether or not I got on with it okay...then I added another gradually, etc. In my case I'm supposed to take some supplements with food, while others require an empty stomach...so I can spread the supplements out over the full day. I also tend to take one type at breakfast, another at lunch and another at dinner so that I don't 'mix' them up too much!

I'm sure that it's not harmful to take what you're taking....if it was, then you'd have some kind of adverse reaction...feeling sick, having bowel problems, feeling headachey, etc.

Re. your question below about combatting nausea...I have taken peppermint oil pills but didn't really find them all that helpful to be honest. However, I do have mint tea and fresh mint in salads, smoothies and desserts. Ginger is also really good for combatting nausea. I have fresh ginger in stir-fry meals, Asian-type sauces, desserts, smoothies, etc. Ginger is also supposed to be anti-inflammatory. I also try to steer clear of rich, oily foods when I feel nauseous and just eat simple 'fresh-tasting' food if I can.

I haven't tried IBS pills, but I was given Buscopan when I had my MRI scan and later read that it can cause constipation which is the last thing I need! So my advice is to carefully check the information about whichever pill you're thinking of taking and be careful not to make your condition worse.

So sorry to hear you've been diagnosed with endo....did you have a laparoscopy? Could you phone the hospital to ask where they think your endo is located? You need to know - it's your body after all!!

I do hope you manage to get through these horrible symptoms...they really are so tough to live with..please do push to be better informed...most medics seem to be far too content to leave us all in the dark...not helpful at all!!!

Wishing you the best of luck on your journey to much better health. XX

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Hi thanks for replying 😮 I may try then to add turimic tablets in 🤔 Hmm it must work different for different people because so far peppermint oil has helped me the most 😮 I try to add turmiric and ginger into stuff but I never know what to cook hhaha 😮 Buscopan actually helps me when I'm feeling a tiny bit nauseous doesnt cause constipation but when I have a flare up doesnt seem to help I've recently tried senocalm at night which is probably healthier for you 😮 I will push for information I'm currently waiting for my mri scans to come back and to see my specialist 😮 From looking at my notes what I can work out its extentsive on the pouch of douglas 😮 Xx

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Hi Abi_97

With ginger I cut it up or grate it into any kind of stir-fry....you can also add it to soups or smoothie drinks. Powdered ginger is also good - you could try it in biscuits, cakes or crumbles or sprinkle some on breakfast cereals, etc.

Re. your MRI scan results I would recommend contacting PALS at your hospital if you're waiting too long for answers - they will contact the Gynae Department for you and chase the results up. I'm still waiting for anything in writing from my hospital about the scan I had on 20th October!! I contacted PALS in the end and someone from the Gynae team phoned me yesterday. You may also like to know that we can request all our physical medical records by going into the hospital (ask at the reception area where the Patients' Medical Records Department is). You'll need to show them some ID and fill in a form and you may need to pay £10, although if the procedure was carried out over the last 40 days you don't need to pay, apparently. You can request any kind of medical documents, including images from the MRI etc. which will come to you on a CD. If you ever decided to see a different consultant it would be handy to have the information to pass on to someone else.

So sorry to hear you've got endo on Pouch of Douglas....from my own personal experience of living with this all I can say is that I wouldn't wish it on anyone. Please keep pushing for the right treatment asap. Mine has been left untreated for years and now I've recently found out that the endometrial tissue has spread inside the sigmoid colon (wasn't there back in 2015 when I had the last sigmoidoscopy done)....this has happened as a direct result of medical failure to do anything about my condition...it breaks my heart to hear so many stories of medical incompetence and ignorance about endometriosis...why do they continue to (mis)treat us in this way...it's really scandalous....:(

Anyway, as I said, please try your best to keep on top of what's going on...you owe it to yourself to get yourself sorted out as soon as you possibly can...the longer things are left, the worse the condition becomes.

Take good care of yourself, XX

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Hi I dont have much advice because I was only just been diagnosed with endo however they didnt tell me where but I have these exact symptoms 😨 I think the constant nausea is the worst for me 😢 Anyway you've probably tried this but have you tried peppermint oil tablets? 😮 Or any ibs relief tablets? 😮

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I'm so sorry you are going through this, you are totally right it is life comsuming! I had severe rectovaginal disease and had surgery to remove it in 2012, like you, the nodules were affecting my sigmoid colon, which apparently is the worse place for the endo to be on the bowel. I had joint surgery with endo specialist and bowel surgeon and was told I would need a stoma - which I found so hard to take. In the end, the surgeons were able to shave the bowel wall cutting out the nodules so I didn't need the stoma. My endo has returned twice since then and I had my 4th lap a week ago.

During my last surgery they found lot of fibrosis and adhesions on my bowel and my sigmoid colon has a kink in it where the nodules were. Even though I had large bladder nodules, endo on both ovaries and ligaments, my bowel is the thing the impacts on me most I would say. Like you, I live with constant constipation and also intermittent diarrhoea and sometime I have the urgent feeling that I need to go to the toilet. It's all made me quite anxious and I don't feel like I could go on holiday/travel with anyone but family now as my bowel has a mind of its own.

Despite my surgeries my bowel issues are still all consuming but there are things that can help. Having high soluble fibre diet really helps. So upping you green veg, I invested in a juicer and often make green juices and smoothies. I swear by Benefiber, it’s a clear tastless natural fibre powder that you can add it hot and cold drinks and food to increase you fibre intake. You can put it in food twice a day and it really helps to make relief constipation. Stool softeners are also very helpful if you finding passing stools painful. I would also recommend taking magnesium. Apparently most endo sufferers are deficient in magnesium. Magnesium increases the amount of water in the bowel which makes bowel movements easier. I know it’s common sense but increasing water intake also really help.

Also bowel massage really helps to increase blood full and movements!

guysandstthomas.nhs.uk/reso...

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Hi.

Thanks for the replies so far. They are a great help... just knowing that you are not alone in this situation helps ease the burden of the situation.

I have been thinking about it a lot since I wrote this post and have noticed a slow change in my bowel becoming worse and worse since I stopped dieting... I lost 3 stone in 2015/16 (great) which I have maintained until recently, having gained a stone of that in the last 4 months. I am eating more sugar / drinking more alcohol... all the things that endo thrives on but all the things that make you feel better when down and out! It's almost self harm with food looking at it now! I have just started taking a probiotic tablet and plan to follow a low sugar diet from January, and cut out the alcohol and rubbish food again, and I am hoping that this will have a positive effect. Judging by the comments above from jjeemm (thank you so much for such a concise reply) it really is worth looking at the diet side of things and working to keep the bowel healthy.

I do take peppermint and find some relief from that and I know I'm not eating enough veg / fruit etc and eating way to much cake and biscuits. After Christmas I am feeling more energised to tackle this and not let it progress any further... it is worth a try for some relief.

I ruled out surgery on the bowel as I really did not want to have to have a stoma. My bowel was viewed under the sigmoidoscopy and there was no further action required at the moment - I am now hoping that I can help myself and avoid another surgery.... maybe if I keep that in my mind it will give me the will power I need?!?! The above replies have given me hope.... thank you xx

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Hi Jaffacake3719

Just wanted to wish you the best of luck finding the will power to make all the changes to your diet. The thing that motivates me is the feeling that finally I've got some control over this horrible disease...So far I've been feeling pretty hopeless just waiting on medics to make the right decisions for me and gradually realising that in most cases they know nothing about the disease and quite often don't even seem to care about treating me. The general lack of competence and care has made me feel really very, very low, but now I'm feeling that finally if no-one else can look after me, I can try my best to look after myself!!! It's actually made me value the power of food in terms of its healing ability and now when I look in my food cupboards it's like looking in a medicine cabinet! I have the feeling that I'm not just eating for the sake of it, but I'm constantly thinking 'if I have some of this ingredient it's good for X, if I have some of that I'll boost my magnesium', etc., etc. I've come to value food a lot more and have a lot more respect for my body as a whole....what I put into my body is really going to make a difference to how I feel.

Now I sound like a real health junky!!!

Anyway, as I said, I really do wish you the very best of luck in making some positive changes to your diet...you owe it to yourself to look after yourself in the very best possible way...if I can do it, anyone can!!!

Try and keep well...and try not to be too naughty at Xmas ;) XX

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