suffering IBS-C feel like I’m trapped in a box…. - IBS Network

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suffering IBS-C feel like I’m trapped in a box….

Bellypainhelp profile image
21 Replies

Im 43 yrs old female I have suffered with constipation my entire life and as a result I have felt awful the majority of my life. I have had every test ran nothing discovered deadly….happy for that part but I’m on Linzess 290mg and I’m not seeing a life changing result. I have been on it for 12 months. Just about 3 mo ago I vowed to take it 100% as directed i made sure to document how I took it and still nothing. I’m suffering mentally and physically behind this disease. I’m depressed as a result please someone help with some advice or jus to talk. I don’t know anyone else around me that understands

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21 Replies
Maureen1958 profile image
Maureen1958

Hi Bellypainhelp, I am afraid I have no answers for you but just wanted to let you know you are not alone with this awful condition. I tend to be more on the diarrhoea side of things myself but some days I try to eat just a small amount and then the next day, I can just about hold it to get some jobs done around the house. I have been suffering for nearly 40 years and tried everything. I am 65 now, mine started when I was about 27/28. I didn't make a note of the date because I never expected it to last this long! Feel free to message me via the Chat facility (at the top of the page) if you want chat privately. Maureen.

DawninFL profile image
DawninFL in reply to Maureen1958

I am trying something new this week, and it’s helping so far. 500 mg of Magnesium at bed and 12 oz of prune juice in the morning. (Don’t skip either). It took me getting 3 colonic hydrotherapy treatments spaced a week apart to free up the constipation. Colonics are the key I’m sure of it now. I’m 47 & have MS & used to be on pain meds that I think deadened my intestines somewhere. I try and follow low fodmap & eliminate dairy, gluten and sugar. Oregano oil helps with bloat & turmeric helps with the inflammation. Right now, I’m also using 4oz of aloe juice with 10mg LGlutamine powder to heal inside. I’ve battled IBS probably 20+ years now & I’ve even had probiotic implantation. You can only guess where they put that lol. So far this week…I’ve gone every day without feeling like I’m dying inside for once. The ER took a CT last week, gave me Bentyl for spasms, & told me I’m extremely backed up & need to see a GI specialist again. No s***t I said lol. They told me they didn’t know much about that California stuff I’m doing i.e. colonics. I had my 3rd one the next day & something finally released inside & freed up stuff stuck inside of me probably from Christmas! U can literally see it come out of you in the hose. It’s gross I know, but misery sucks & I was desperate. It works tho omg it works I swear by the colonic. It’s a Godsend!! Oh fyi the lady who does this where I live will be 87 in April & doesn’t have a pain in her body & takes no drugs for any ailments!! She just wows me! Eat clean & clean the junk out of the body, add the magnesium at night and prune juice in the morning. Let me know if this helps you out. You’re definitely not alone …

Kdw1 profile image
Kdw1

Hi there I'm exactly the same as you I have ibs c and it has now caused rectal prolapse, I feel like I'm getting nowhere and it's not being took seriously. It causes me urge incontinence and I have so many accidents as I don't make it to the toilet on time it's awful as I'm almost 43 also. I think boots chemist own brand suppositories work at times but it's not good becoming dependent on laxatives, its a vicious cycle but your not alone x

winfong profile image
winfong

Yeah, it's awful, isn't it? I've had IBS (mostly C) for 40+ years. Well, at least we've got this forum.

Apart from the Linzess, what else are you taking/doing? I've had some luck with probiotics, a ton of osmotic laxatives (polyethylene glycol, methylcellulose), lots of fibre in my diet & regular exercise.

Hang in there! Let us know how you're getting on.

Nuttycatlady profile image
Nuttycatlady in reply to winfong

Probiotics and exercise have been very helpful to me, too....but IBS C is very difficult to live with.

b1b1b1 profile image
b1b1b1

I have been told by a medical dietician (recommended by my gastro) to use Metamucil and magnesium citrate. This combination is kind of a pain in the neck, but it pretty much works. Ask your gastroenterologist about this. Insist on help; you are entitled to it whether you live in the UK or in the US (or elsewhere).

Bellypainhelp profile image
Bellypainhelp in reply to b1b1b1

wow such a long time. Does it alert your mood. My mood is alerted and my attitude my work motivation my marriage and time I would like to spend with my family. This is awful

Fefe09 profile image
Fefe09

I have suffered with Both ibs (c) and d as well my whole life. So your not alone. Do you have any other health problems? Like thyroid? Have you had any kind of infection years ago? What about what you eat? Have you tried cutting out dairy for couple months or gluten-free diet. It’s hard to pin point because everyone is different for example a friend of mine could not go because of medications she had taken paralyzed her small or large intestine i can’t remember which. Also with myself I have hypothyroidism and let me tell you it messes with everything including your gut. I really don’t know what the answers are for you but I would try a strict diet. No caffeine. No dairy only eat fruits and vegetables for a while with lean meats. I know it’s hard and maybe you have tried it or are doing it now. I just know the saying you are what you eat is correct. You eat junk you feel like junk. Or that’s what I’ve experienced for myself. I pray God will heal you and you can live your life to the fullest . Take care

Bellypainhelp profile image
Bellypainhelp in reply to Fefe09

I do have a low thyroid Hypo intake Levothyroxine .75 govern by my primary care doc however, I don’t under the testing no matter how he tries to explain it. Smh

Fefe09 profile image
Fefe09 in reply to Bellypainhelp

dr Eric berg from the U.S. has several short videos if you can pull him up. He explains t3 and t4 better than anyone has ever explained to me. See if you can watch his videos

Tess359 profile image
Tess359

Hi there, I am 67 years old and have suffered IBS -C since I was 4 years old. Nothing the doctors prescribed has ever helped. Last year I decided to see a dietician who specialised in the Low Fodmap diet privately and she has helped me more than I could have imagined. She took me through the elimination process to find out which Fodmaps I am sensitive to and then through the re-introduction phase. I found that I have a problem with Fructose, Lactose, Sorbitol and Mannitol and I have to limit the amounts of foods containing these. Lactose free milk has been a boon, but the real game changer was using Linseeds. I have a very sluggish bowel and I need to take 2 tablespoons a day, that is the upper safe limit, too much and it can cause a bowel blockage. I now have regular bowel movements and the pain and bloating has gone. Everyone is different and I can't guarantee that this would work for you, but it may help you to see someone who specialises in the Low Fodmap diet. I wouldn't recommend that you try it yourself because I did that and struggled to re-introduce food properly.

Nuttycatlady profile image
Nuttycatlady in reply to Tess359

Fodmap has been helpful to me as well

Sharon1969bal profile image
Sharon1969bal

Hi there, I’m 54 and have been suffering with this condition for a long time. I ended up at a & e with a severe blockage. I’ve had all the tests and thankfully everything has come back clear. I did some research and changed to diet to include more fibre and I have chia seeds in a yoghurt every day and drink more water. This is literally all I have done and I’m now going to the toilet normally. I do still get the odd belly bloat but nowhere near what it used to be like. I hope this helps and I hope you can get some relief soon

clio18 profile image
clio18

sorry to read your post on here. I expect after allthese years you have tried every remedy and diet there is out there. During my chemotherapy for breast cancer i tried unsweetened liquorice for my dreadful constipation and it worked for me. If you've already tried this andit wasnt any good for you then im real sorry. Cant imagine how you feel. 😔😘

I have had IBS since a hysterectomy in 1992 with intermittent D & C so i know how awful it can be physically and mentally.

Cant offer any more suggestions for you but you're not alone 😘

xjrs profile image
xjrs

Sorry to hear you've been suffering for so long.

What is your fibre intake like? To improve constipation in the short term you can try ground flaxseed on your breakfast, starting at 1 teaspoon and increasing at 1 teaspoon every 2-3 days - you'll need to consume extra water with it.

These foods are also high fibre:

8-9 Prunes

2 tablespoon chia seeds (soaked for 10-15 mins in milk or non dairy milk with cereal or water)

Shredded wheat (or if GF: Nutribrex)

60g Quinoa

Wholewheat bread

75g Whole grain pastas (if GF: Buckwheat)

2 Hard pears

5 Dried apricots

90g Raspberries

1 orange (contain a natural laxative)

2 kiwi.

I find that I need to have 1 orange or 2 kiwi a day and then another high fibre fruit later in the day to help with BMs. Introduce new foods and any fibre increases slowly, starting with one new thing at a time, waiting for 2-3 days for a response and keep a food diary. You may not need to consume as much fibre as I do.

For breakfast I make a porridge of 4 tablespoon of oat bran and 4 tablespoon all bran (wheat bran), 2.5 small cups of water and microwave for 10 mins. I then mix in 2 tablespoon of chia seeds and 1 tablespoon ground flaxseed and leave to stand for 15-20 mins since the chia seeds need to form a gel. On top of that I place 8 prunes and eat. The best thing to do is to start with normal oats in similar quantities and, if needed, replace one of the tablespoons of oats with oat bran for a couple of days, carrying on doing this every couple of days until you get to 4 tablespoon of oat bran and 4 tablespoon of oats. Then start replacing with wheat bran in the same manner. You can then add the other ingredients one at a time. You might find you do not need the complete 'recipe' to have a BM. All these individual components are down to tolerance e.g. you may not tolerate wheat (see later about Alflorex), so it is best to keep a food diary (I do this on a spreadsheet) recording symptoms for up to 2-3 days after each change.

I also take 30 drops of ginger extract before bedtime to aid motility. You may need to work up the dose to say 7 drop increments each night.

Exercise can help with BMs. The government recommends 150 mins of moderate exercise (e.g. walking as if you are late for an appointment) or 75 of intense exercise (e.g. jogging) per week. I also have a bit of a walk around straight after breakfast to get things moving.

You need to ensure that you are drinking enough fluids (2 litres of fluid per day).

There is some good advice about constipation here:

theibsnetwork.org/constipat...

theibsnetwork.org/constipat...

I also take Linaclotide (same as Linzes in the UK), which helps me with my IBS pain, but not my BMs, which is why I take extra dietary measures. I also take Alflorex probiotic which has made me more tolerant to taking in the extra fibre I need for a BM.

Failing dietary measures, you can try Optifibre, which needs to be worked up to a dose according to instructions. You may not need the full dose - watch out for gas and increment to a level that is acceptable for you.

Some people are more prone to constipation due to their intestinal anatomy. Through colonoscopies I have been told that I have a long loopy (redundant) colon. This means that food takes longer to pass through and in the mean time the intestines have more time to suck out water from the stool, drying them out and causing constipation. I have found that I need to consume much more fibre than other people to have regular BMs.

I have also found useful having most of my food at meal times, leaving 4-5 hours of not eating between meals, eating my fruit snack before a meal. This means that your digestive system has time to process each meal. It also allows something called the MMC (migrating motor complex) to run which sweeps food waste from your small intestine into your large intestine. This only happens when you have an empty stomach. When people snack regularly, it prevents the MMC from working properly. I also find the larger meals help to push things along better than drip feeding through snacking.

Note that the FODMAP elimination and reintroduction diet is for IBS, but if you are constipated it may make constipation worse, since it reduces the amount of fruit and vegetable fibre reaching your colon. In the first instance you could try increasing your fibre intake as described above. If this causes you more problems, you could then try Alflorex probiotic, which might make you more tolerate to FODMAPs and fibre, since it helps to shift your gut bacteria towards more good bugs than bad. It is the dominance of bad bugs that can give symptoms by feeding them FODMAPs, which can result in excess gas, bloating and pain. Failing that you could try a high fibre version of the FODMAP elimination & reintroduction diet - you'll need a dietitian referral from your GP to take you through this. These articles may help:

todaysdietitian.com/newarch...

todaysdietitian.com/newarch...

Good luck.

BlueKeith profile image
BlueKeith

I had suffered with constipation for over 20 years. My routine was a spoon of olive oil in morning then porridge. Fibogel every day and loads of water with magnesium on a night. It kept me flowing to a certain extent. Then I got diagnosed with hypothyroidism. I started taking levothyroxine and the problem disappeared. Well that was until a few months ago when my digestive system completely stopped because my thyroid levels were low again. The doctor upped my dose and it's flowing fast again. Sometimes a bit too fast but not complaining. Hope you find the cause. I expect you have been tested for thyroid but maybe worth asking about.

bluejourney profile image
bluejourney

It is very likely an imbalance in your microbiome. Get methane breath testing done to see if you have overgrowth of archaea and bacteria. Methane SIBO is common in IBS C. I’ve been battling the same problem. It’s not much fun. But if you can get rid of and prevent the overgrowth returning, at least there’s hope.

Blake4799 profile image
Blake4799 in reply to bluejourney

What are you taking for sibo?

bluejourney profile image
bluejourney in reply to Blake4799

The gastroenterologist has prescribed a 2 week course of antibiotics- rifaximin - and I’m also reading Dr William Davis’s book, “Super Gut”, which I have found very helpful.

hi I’m same take movicol every day sesame seed fibre husk tablets and two kiwi 🥝

Works for me after years of trying everything

Rumours profile image
Rumours

Hi, I completely empathise with you having suffered with IBS/C and slow transit bowel for many years. I have recently been prescribed Linaclotide (Linzess) 290mcg after using multiple fibre supplements and laxatives over the years. So far all that’s happened is I’m extremely bloated but still constipated so having to resort to stimulant laxative Dulcolax (Bisacodyl) which gives me gripes but helps to some extent. I agree it’s a difficult condition to manage and gets me down too and so disheartening when you get your hopes up trying different medications and nothing seems to help. This forum is very useful with support and tips from other sufferers and to know you are not alone and that others do understand. I hope you get some relief soon and keep in touch and let us know how you’re doing. Best wishes x

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