IBS or something more?

[SES05]

Hi, this is my first post on here, and I'm just wondering if anyone can calm my anxiety and mind...For the past 4 years, I've had what I can only call unusual symptoms...bloating, passing a lot of blood from my back passage (clots included and the amount I'd pass during a heavy period), a lot of mucus, lower back pain, fatigue, stomach pains (some which have made me pass out or go to a&e for), a lot of constipation with the odd loose movements here and there...

I've been told it's IBS and have struggled to get heard. I've had various appointments and tests done, all of which have come back "normal". I've had the odd test come back slightly concerned but then everything goes back to normal (High calprotectin levels, high inflammation levels, low folic acid).

I'm in pain with my lower back and stomach pains daily and have to take pain killers almost every day, however these don't seem to even touch the pain!

One scan I had done privately showed I had a lot of edema on my lumbar spine, however the NHS have never picked up on this.

I've recently had my 3rd colonoscopy, where everything looked "normal", no signs of colitis or crohn's, but I still have to wait at least another 6 weeks for the results. Biopsies were taken at the time.

I pass blood weekly and the amount of mucus I also pass seems to be increasing as time goes on.

I have taken food out and reintroduced it (low fodmap, dairy, gluten) and I've found no difference what so ever.

I'm exhausted constantly. No amount of sleep helps. I get run down easily. I get ill easily and seem to be constantly fighting colds off which can last for weeks.

I know something isn't right. I'm pretty convinced that it isn't IBS either... I've had a doctor in a&e laugh in my face when I've expressed my concerns. I've always been told I'm "too young" for it to be anything other than IBS.

Please can someone share some light on what this may be? It affects my day to day life now. When I bloat, I look about 6 months pregnant. When I have really bad stomach aches, I have to get heat onto my stomach to ease it and my whole body shakes because of the impact of it, I'm then completely wiped out for the rest of the day. When I bleed, its alarming to see the amount of blood in the toilet and this can last for days. I sometimes even end up bleeding onto my underwear it can be that heavy....

Is this IBS? Is this considered "normal"?

Thanks, Sophie

[BabsyWabsy]

Welcome Sophie. I am sorry you are suffering. It seems to be common in UK for women's health problems to be dismissed, and you may need to be 'politely persistent' in getting your issues taken seriously. For me, after a few years of being dismissed, a locum took me seriously. Is it possible to see a different GP or specialist? How are your bloods? From your description, you could easily be anaemic. When you pass blood, is it bright red or darker? If red, it is likely to be coming from somewhere near the exit. I hope you get some answers.

[MountainHare1]

Hi. Sorry to hear about your situation. When I was first diagnosed with IBS it was because I was experiencing problems with bleeding from my haemorrhoids and losing blood.

All of the symptoms you describe are classic for IBS and it is probably being made worse by the stress and anxiety of what is going on.

I have written a few posts on this forum that will positively help your situation and help you manage your condition.

Looking after yourself with Self Care is vital to ensure you have a good life.

If you have any questions please get in contact.

Take care x

[xjrs]

Your symptoms sound like classic IBS-C (constipation dominat) with visceral hypersensivity. The blood and mucus may be due to fissures and/or irritation from the constipation. Your system produces more mucus to try to ease out stools.

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...

There are also medications that help IBS-C (constipation dominant IBS). I suffer from IBS-C and have been prescribed Linaclotide for it - this is meant to help with the constipation and the pain. I also take Alflorex probiotic which has made me more tolerant to taking in the extra fibre I need for a BM and also assists with the pain, since the pain is often due to a gut bacterial imbalance oversentising gut nerves. I would try Alflorex and dietary measures prior to the Linaclotide in case there is no need for it.

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.

[Alanis4000]

That doesn’t sound like ibs symptoms to me. Do you have painful periods? After your biopsy results I would keep nagging the docs to investigate, get a second opinion or see a different doctor until they take you seriously. Could be endometriosis which may show on an mri scan but can only be definitively diagnosed through a laparoscopy.

[Viklou]

Are you under a Gastroenterologist?

[Funkyfaerie]

Have you been looked at and tested for endometriosis? Could be likely, it can get in to the bowel, it is a benign disease, but complicated. If you have recently had a clear colonoscpy, then it could be piles, but surely they should have noticed that.....keep on keeping on at them! Best wishes