A bit of background - I was diagnosed with IBS-D around the age of 10. I'm 23 now and in the past few years my IBS-D has gotten considerably worse.
A year ago I was referred to a gastroenterologist because I had started bleeding whenever I had a BM. It started out small and I kind of ignored it but it got to the point where it was like somebody had poured blackcurrant squash down the toilet. I had a colonoscopy and they found nothing sinister apart from a then healed ulcer. I began taking macrogol after a few months and found a new routine.
My problem begins here. I moved a few months ago and have started having absolutely horrendous stomach pain. When it first started happening it was easy to deal with, take a buscopan and some paracetamol and lie on the sofa with a hot water bottle and sleep it off. I had one occasion where I had awful, awful stomach pain for 3 days straight. It stopped me sleeping properly, it woke me up in the morning and I couldn't do anything besides sit on the sofa and not move. It also stops me from eating so whenever I do get the pain I inevitably end up losing a bit of weight because I'm too nauseous / scared of making the pain worse to eat.
I called my GP and I kind of guessed that it was because I must've been fairly backed up (I'd had similar mild pain before when I was constipated) and the GP told me to up my movicol to 4 sachets and add in some senna tablets. The next morning the pain had just gone with no explanation as to why/how I had a flare up that bad.
It's started coming back intermittently and it's incredibly intense pain that stops me doing my daily activities. I've started a new job and had an episode at work where I was trying to work and push through the pain which was inconvenient and really annoying.
I saw a dietitian for 2 appointments (I was discharged from the service because I moved) and was told to cut out my caffeine intake as I used to drink a lot of green tea. In the time between my first and second appointment my caffeine intake has been reduced significantly and I try to keep an eye on what I'm eating.
I'm sorry for rambling but I'm just at my wit's end of feeling like shit (no pun intended) and would feel far more sane if there was some reassurance that this isn't just a me problem!
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Yasai
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What I am finding slightly concerning is that they found a healed ulcer when you had a colonoscopy. I'm not a doctor, but I would have thought that they shouldn't be finding any ulcers whether healed or not. I'm just wondering if they should be periodically monitoring you.
I am a bit confused about your symptoms since you say that you have IBS-D (diarrhea dominant), but you need to use Movicol and keep getting backed up which suggests IBS-C (constipation dominant).
I'm confused about my symptoms too - the explanation I was given for the ulcer being in my colon in the first place was that I was feeling that I needed to use the bathroom and was straining very hard to try and empty. I was given movicol because the gastroenterologist said that I needed to "reset" my bowel and regulate it. I use the term IBS-D very loosely because it's what the gastroenterologist diagnosed me as having.
I would like to be monitored more frequently. The stomach pain is a new thing that's come up and just completely muddied the waters on my understanding of my IBS and I want to figure out what my new normal is.
If they are categorically saying that you don't have colitis, you may be suffering from visceral hypersensitivity (functional abdominal pain) - there is info about it here:
It is where the brain interprets the normal activity of the bowel as pain - this is due to a wearing down of neurons in pain control centres of the brain which can be caused by PTSD, neglect or abuse in childhood, extreme stressful events etc. The first line treatment is nerve pain agents such as low dose amitriptyline. There is a theory that being on something like amitriptyline for 6-12 months can help the pain control centre neurons to regenerate. Note that amitriptyline can cause constipation, though. Unfortunately I couldn't tolerate these. Linaclotide (for IBS-C only) & Alflorex probiotic have helped me with this intestinal pain.
Alflorex can help balance gut flora and if you have an overgrowth of bad bugs, these can contribute to pain. These two in combination have reduced the pain I am in considerably and I have been able to tolerate more foods so that I am able to consume the extra fibre I need to have a BM including oatbran, 1 tablespoon of ground flaxseed, wheat bran (if tolerant) 8-10 prunes, 2 tablespoon chia seeds and 3 shredded wheat (or GF version: Nutribrex) for breakfast, plus quinoa, wholewheat bread and whole grain pastas at other meals. These fruits are particularly high fibre and can help with BMs: hard pears, dried apricots, raspberries, oranges (contain a natural laxative) & 2 kiwi. In some people the Linaclotide also helps a lot with BMs which is its primary purpose.
There is some good advice about constipation here:
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).
It's really interesting that you mention Functional Abdominal Pain - it's the first time I've heard of it. It's interesting that it's also caused by some degree of stress, and I'm wondering if moving and finding it hard to find a new job caused it to show up. It makes sense that I had an episode of it while at work because I was stressed out about making sure I was doing everything correctly and learning how everything worked!
It reminded me of a time in university towards the end of my dissertation when I had stomach pain similar to what I've been experiencing recently. That was also constant pain and lasted for nearly a month where, in my partner's words, I ate "like a 5 year old" - at the time I could only manage tuna or ham sandwiches and crisps (in very small amounts). I lost about 6kg / 13 pounds at the end of it.
I was prescribed Amitriptyline during that period and have been on a consistent low dose for 3 years. I worry about the effects of taking my laxative medication and, in tandem, Amitriptyline. In a way I'm frightened that I've caused my bowel to slow down because I can't imagine a life where I don't take movicol anymore.
Thank you for the recommendation of Alflorex - I've been looking for a probiotic that isn't yoghurt/dairy based because I have tried Yakult but my body hated it!
I'll organise an appointment to see my GP when I next have a day off so I can bring this up and see if they can advise what I should do to prevent this awful pain from interrupting my daily life any more than it already has.
It is interesting to hear your story and the fact that you are on amitriptyline already. Maybe this has been contributing to your constipation. If you truly have an intestinal pain disorder and your tract is slow, Linaclotide might be worth a go, but best to try the probiotic first since this is natural. Linaclotide is a fairly new drug so most GPs haven't heard of it - my gastro recommended it. It is meant to make more of a helpful natural chemical available in your intestine which calms intestinal nerves to reduce pain and also helps with motility (although it only helps me with pain). I did a lot of research on it - it is limited to the intestine and barely absorbed into the blood stream. It is converted to natural peptides and eliminated in stool. The natural chemical it makes more available also helps to prevent bowel cancer. All of this made me more comfortable about taking it. It does take a bit for your body to get used to it though and can initially cause diarrhea before it settles, but as I said Alflorex is the best place to start.
I haven't been tested for gastritis. Gastritis is related to an inflammation, irritation, or erosion of the lining of the stomach. My pain comes from my intestines and has lately been controlled quite well with the Linaclotide and Alflorex, but thanks for the suggestion.
I have IBS and I now take high strength probiotics kerir drinks and sourdough bread and cod liver oil capsule and I feel great I was given this advice by a doctor who specials in gut problems I wish I had been told this years ago Please try it I am sure you will be pleased with the results
I got into the habit of taking cod liver oil last year but I haven't found a probiotic that's right for me just yet. I tried Yakult but I found that it made me need to use the bathroom more and generally made me feel more unwell. I think the yoghurt based ones upset my body more than help it out! I will do some research into finding a form of probiotic my body can tolerate.
I got my probiotic from Holland and barrett 50 billion the highest doses you can get it is called gut powder Try tesco for kerir it tastes lovely in different flavours also try gluten free or sourdough bread I did it over a 2 week period introducing each thing gradually I have really been poorly with ibs unable to go out ,in bed ,lack of sleep constipation and diarrhoea didn't know if I am coming or going give it a try you have nothing to lose as I found prescription meds hopeless
I think it may be possible to get milk-kefir? Maybe in Sainsbury’s, or make your own. Start with a very small amount of kefir, and build up the daily amount gradually. Kefir, taken over a few months, has vastly improved my IBS. I don’t have a problem with milk, so have more choice. I take an unflavoured / plain kefir in a glass with a dark fruit smoothie - looks exotic!
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