Hey everyone, fairly new here and don't usually post on forums much anymore from bad previous experiences. Try and keep a long story short I've had a hell of a year, im 30 years old now and I've suffered with GAD and depression for over 8 years now, late last year I ended up with gastroenteritis that now has developed into IBS (GP's seem quick to put the blame on my mental health, believe me when I say it has nothing to do with why it started, but am aware that it exacerbates the issue).Now waiting for a referral appointment to see a gastroenterology specialist and this seems to be a wait till November (got referred in March).
Had stool tests, FIT test, all seem to come back normal so written off as IBS, ironically like my Grandmother who started with it at my age too.
(Still to this day still no explanation for her either)
In this last 6 months I've lost over 2 stone, I'm now under 11 stone (I'm 6ft) and am struggling to eat my daily calorie intake, I seem to suffer with a cycle of pain from central abdomen, down the right side and then in the pelvis and this cycle happens every few days. When I first started with it, it took over a month to health from the initial stomach bug and pain being pretty unbearable. I also seem to cycle between being constipated and being more loose, so I fluctuate between taking laxido/Movicol and simeticone as it seems to be the only thing that kind of helps that I've tried (also tried Husk, fibogel), without it I become completely bloated.
At the moment I've been keeping a food diary, tried to workout any triggers ( I believe that Lactose, wheat and garlic have become triggers to me) and eat more free from products just so I don't feel so bogged down as I started too with everyday on the shelf products.
Also tried keeping more with low fodmap too but do have snacks through the day sometimes that are sugary just to sometimes keep me going as I genuinely struggle to want to eat.
Currently going through CBT too just to try and get more help with my mental health too because I'm sick of suffering with it.
Completely unrelated too, but I've already had a stressful year, planning to get married this year, family drama as well as my son being diagnosed autistic, my partners epileptic and being told after a telemetry she may have had a stroke whilst staying in (at 29!?) and now being told I fit the criteria potentially for ADHD and autism too..
Apologies for the long story, just trying to paint the picture, I understand stress doesn't help, but if anyone could shed some advise on my situation and more so on how I should go about trying to increase my calorie intake it would be much appreciated.
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JCJourney
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It can be tricky with IBS to get all the calories we need. Especially with IBS's weird ways of happily accepting foods for weeks, then suddenly you get a flare up after eating them!
I have that kind of relationship with some foods.
Also for you it's tricky because of your sensitivity to wheat and lactose. I am OK with wheat but daren't even look at garlic any more, and I'm fine with butter but haven't risked anything like ice cream. I never was mad keen on milky stuff anyway but adore butter. Can't manage cheese any more though.
I would say definitely cut out the sweet snacks, not because of the sugar exactly but because no matter what, they will take the edge off your appetite when it comes to mealtime. I know you feel you need the energy boost. Sometimes if I get that I have a spoonful of honey or maple syrup. That doesn't seem to wreck my appetite.
For calories, I'd say go for carbs like potatoes, rice, and alternative pasta options made from other things besides wheat. If you can manage quinoa and the fibre doesn't boher you, then add that to your diet.
Have you tried Spelt bread, and other things made with Spelt? Often it suits people who can't eat gluten. You could try it maybe?
Spelt bread toasted and buttered with eggs on top! wow.
Oatmeal might be an option too. Again if the fibre doesn't upset your tummy.
Eat healthy fats too; olive oil, avocados, eggs, Omega 3 from fish. Salmon is high in Omega 3 and is high calorie.
Peanut butter, and all nut butters, sunflower seeds and pumpkin seeds if you can eat those, walnuts. I find nut butters a bit easier to digest than actual nuts and seeds except for toasted sunflower seeds which seem to be friendly to me.
If you can manage to get all that rich stuff inside you at mealtimes, plus any veggies and fruits that suit you, your meals will be good high calorie and healthy. But stay hungry for meals! So then you will eat well.
Having a sweet treat like chocolate maybe after a meal, doesn't have to be ruled out (if that suits you. I am so glad to have a tummy-friendly relationship with chocolate! There IS a God!) Choc. is actually full of nutrients. Check it out.
Thank you for your reply, I will try looking at spelt bread, I have been having Gluten free and sourdough bread and been getting on fine with it, it's just eating the same foods after a while becomes monotonous which is ironic because I used to enjoy cooking and trying different things.Will also try the seeds too for something to snack on. I've been eating carbs and do try to still eat my fruit and veg most days as I tried to keep a balanced diet even before this started (I wasn't one for takeaways and fizzy drinks all the time tbh, I left that in my youth 😅)
I think what's doing me is that it's like I'm in one long ibs flareup that's never going away just fluctuates in how unconformable or painful it gets and that's the hard part so the anxiety creeps in to what I should even eat and I get nausea.
It definitely is a balancing act, but thanks for your input it helps a lot.
Oh right...it's especially difficult to get the calories you need if you have nausea, because the appetite can just go.
Just before I got obvious IBS, I also had a period of times when I felt inexplicable nausea. Certain high calorie plain foods were okay then, but they were of the "mashed potato and steamed fish" or "eggs on toast" variety, and I admit I did sometimes lose my appetite. But it was weird because my appetite would come rushing in at unexpected times, and then I made up for any foods I had missed and started craving high calorie foods like sardines and butter. But that was before it became clear I had IBS.
(I remember my doctor was baffled. My tests were all OK. He said it sounded as if I was pregnant! Yeah,,,,at 64, miraculous conception! haha. At least it made me laugh.)😆
That nausea passed, and I hope yours will, too. It didn't really come back except for the shaky cold nauseous horribleness I think we all get during any bad flare ups.
Hi there SNAP! my IBS came on after gastroenteritis years ago and i have also suffered from GAD and depression much of my adult life initially perhaps anxiety sparked bouts but now it's definitely a two way street IBS is now well known for it's links and causation to anxiety I'm also having a problem keeping the weight on after recent prolonged flare ups I try to eat protein with every meal and as much variety of foods as i can anxiety has a knack of taking away your appetite and burning up the calories so i'm trying to eat even if i don't feel like it but smaller meals and snacks might be gentler on your tummy which is probably still healing from the original illness can highly recommend meditation and the Headspace app all the best and hope things improve for you
Thank you for the reply, glad I'm not the only one that's happened to have suffered with it from having a stomach virus (not that I wish it upon yourself or anyone 😅). Unfortunately mental health issues do play a part in messing with your overall emotions on a daily basis and for myself it's become detrimental in my life after several medications and also medication for migraines too. Everything seems to always be a "put you on hold for this, or come back in 6 weeks for that" I'm never progressing in any any areas to the point where I'm now ill on a daily basis. I try and push myself, probably sometimes too much, but I still try to be a dad and a partner everyday and also look after both of them with their own health problems.
I'd previously been using the calm app, but may try the headspace next for something different as they seem to be more british voice overs on there from what I've heard before.
It's a hard balancing act especially when noone around you seems to properly understand and want to shove you back into work straight away. I'm not a lay about, but even if I wasn't ill I'd still have to be a carer to my partner and son as with my partner being epileptic she can't be on her own with our son incase she has seizures, it's one of the reasons I left work to start with.
Thank you though for the advice and apologies for the ranting, I run away with myself too much. I wish us all to have better days
Oh gosh you do have a lot on your plate, I get migraines with it as well I'm convinced it's all linked, many people don't get how debilitating it can all be I call it a chronic health condition these days when i'm talking to people they seem to better understand that especially when i have to cancel something yet again !! sending hugs look after yourself x
Many people's IBS start with food poisoning or some form of tummy bug. This is what happened to me. Your pain may be from bad bugs dominating in the gut. Have you tried any probiotics? Alflorex worked best for me and has been scientifically studied for IBS. It has helped me greatly with the pain.
You could also try the Nerva gut directed hypnotherapy app or any form of meditative or mindfulness practice. Exercise is great for relieving stress and helping with mental health issues including anxiety and depression. Running (if you are able) helps to switch off the fight or flight response, but you may want to concentrate on weight gain first.
In terms of gaining weight, here are my top tips:
Try to eat more food, more often with less meal spacing. Ordinarily I would recommend spacing out meals to help the MMC (migratory motor complex) to run. This sweeps food from the small intestine to the large intestine during fasting. However, this could be counter productive if you are trying to gain weight.
Eat carbohydrates that you are more able to tolerate such as:
White jasmine rice. This is pure calories and very easily digested. It gets completely digested in the small intestine leaving no residue for the colon. Note that some types of rice (such as Basmati) contain resistant starch some of which would be undigested and end up in your colon.
Low FODMAP and/or gluten free grains (if you are intolerant to wheat). This can include buckwheat pasta, gluten free pastas, quinoa and buckwheat flakes. Some of these are more fibrous than others, so you will need to test for your own tolerance. Some sufferers are more tolerant to oats than wheat, so porridge made with full fat or dairy free milks are good for breakfast and even as extra snack meals. Oat amazake is a form of highly digestible fermented oats. I mix this with buckwheat flakes and add in tolerated fruits as a snack.
Squash and pumpkin. There are different types of squash and pumpkin products listed on the Monash University FODMAP app with their various low FODMAP serving sizes.
Beans and pulses (thoroughly rinsed when canned) – see Monash University FODMAP app for low FODMAP quantities if necessary.
High fat varieties of dairy (e.g. hard cheeses) or lactose free dairy if necessary. Note that some sufferers will be intolerant to cheese due to the whey or casein protein content rather than lactose.
Semi-skimmed or whole milk or lactose free varieties.
Nuts. These can be ground in a coffee grinder to make them more digestible. Nuts add fibre, so gradually increase the amount.
Eggs.
Protein shakes as snacks.
Berry fruits (strawberries, blueberries and raspberries).
Healthy fats such as extra virgin olive oil. This could make you more loose, so start with 1 teaspoon working up to 3 tablespoons (1 tablespoon with each meal) per day depending on tolerance. Note there are 3 teaspoons in 1 tablespoon.
If you are struggling with fibre consumption, Alflorex may help with that since the strain within it helps to digest complex carbs.
Good luck with it all and congratulations on the forthcoming wedding.
Hi, thanks for the reply and yes I've tried a couple different kinds of probiotics one with up to 30 billion live bacteria per capsule and drinking kefir drinks to try and help my stomach but they seem to do little to be honest, maybe I'll give the one you suggested a go too.Thanks on the diet suggestions, I think I'm going to have to bite the bullet and strip back my diet to basics and see what else could be irritating my stomach as it's becoming debilitating to be honest.
Just had an appointment today with my GP who's said he'll try and chase up the gastro referral but seems to be a nationwide wait (like most things it seems) and give my peppermint oil to take. I have taken them previously but not at the dose he's prescribed them at as I couldn't afford to buy them at taking 6 a day from the store tbh. If it doesn't work he said he'd try me with something else in 2/3 weeks so fingers crossed.
Thank you, I think once the wedding has happened it'll take a weight off the situation too tbh. I'm excited but it's stressful too. Hope you take care too.
I was diagnosed around 30 years same symptoms as you a lot of pain down right hand side, if you look at a picture of your colon you will see it bends round a corner, I found a lot of my pain was where the bends are, so it became apparent that if my stool was to dry it could get stuck or slow down in these places, I assume you do drink a lot of water 11/2 -2 litres a day plain water is best, sugary drinks not so good. I can’t drink tap water at all because of the chemicals the water company put in it to kill the bugs, it took me a long time to find a bottles water that suited me, I found spring water from shepley springs in Yorkshire was the best for me. I found out a lot of bottled water from the shops is just bottled tap water. Also different spring waters can still affect you it depends what it has filtered through, rock,lime,chalk,peat they all add different nutrients to the water but sone you might find affect you. I ended up having a water filter added in my home so we have three taps now and one is just for drinking water, I change the filter every 6 months, when I do it is bright orange. If I put a glass of filtered water beside a glass of unfiltered there is a massive difference. You could try a water filter jug that you keep in fridge but do your research and get a good one that filters out all chemicals.
have you had stool tests apart from the fit test? I have suffered ibs for over 30 years but 3 years ago I had a terrible flare up that lasted over a year, in the end a nurse done a colprotectin stool test that showed I had issues, my levels were 500 and are supposed to be around 50, or 100 with ibs sufferers. Ibs runs in families so it’s properly correct that you have ibs. When I was first diagnosed with it I asked the specialist what ibs was and was told it’s an issue with the digestive system that the doctors can’t fully diagnose as there are so many different symptoms and it affects everyone different.
I had a colonoscopy after the calprotectin test and it showed nothing terrible apart from internal haemorrhoids, but the prep made a massive difference, I think it flushed out whatever was causing the high readings.
My advice to you is go on a very bland diet of rice or plain mashed potato for a few days the start to add one thing at a time and see if it affects you if not then add one new thing if your symptoms come back you know it’s a trigger.
A big changing point for me was when I kept complaining to my GP about how I felt and he said well until you are prepared to help yourself there is not much I can do, he was referring to my diet.
I can’t eat alliums I try to avoid anything that causes gas, I can’t eat take away food that’s a big no no, and alcohol that really affects me I think it’s the yeast in it, mushrooms are bad as they are a fungus. And yes stress is a massive trigger. The fodmap diet is ok but you still need to adjust it to fit in with you.
I have been very lucky as my wife is an ex nurse and she has helped me so much she also has ibs but on a smaller scale.
Thank you for the reply, and information given. I have taken note of the bend in the colon and this seems to be where the pain sometimes lies when I start to become constipated which is when I then start taking laxido to try and shift it before it becomes even more of a problem, and yes all I've drank for a while now is water and green tea. I do sometimes drink from the tap, but did buy a brita filter a while back before I even started with IBS so may have to start using that again with a new filter, I do buy bottled water, most seems to be from Yorkshire as its where I live so hard to distinguish if any are causing me issues when the pain is constant tbh.
I had 3 other tests done to check for chrohns and other bits as well as a full blood count I requested for the medication i am taking and all came back clear so this is why the referral happened. As it happened I saw the GP today and have been given peppermint capsules to take as I'd taken them previously but in smaller doses. If they don't work then it'll be trying something else in 2/3 weeks.
I did strip my diet back at one point and that's how I found out that dairy seemed to be an issue and wheat products seem to bog me down but I can't be 100% except for just how I've felt, so I think I'm going to have to go back to basics again with chicken, rice and mashed potato again and introduce foods, just don't want to lose any more weight 😳.
Glad you were able to get the help you needed along the way too.
I lost two stone when my calpryectin levels were high, one they came down I put it back on very fast. I had loads of test before the calprotectin test, it checks for infection in the colon. You could be really constipated high up, that can cause diarrhoea, I have suffered from that as well, the diarrhoea is call pass by, it’s where the body need to eject to waste so it passes by the blockage as a liquid. The best thing to do is as much research as possible, do you know about fibre? There are two types soluble and insoluble one soaks up liquid into the colon while the other don’t, if you put some oats in a glass of milk over night the oats would soak up the milk if you put carrots in the carrots would still be the same in the morning as when you put them in, we need both to keep our colon healthy but it’s a balancing game, look up fibre on NHS web site there are lots of web sites saying what veg or fruit are soluble and insoluble, it can be confusing to start with, like an apple is both the shin is insoluble while the rest is soluble. As for food diary I keep one as well also I keep a stool diary going by the Bristol chart (found on google) that way you can see what happening and how fast food goes through you, I knew sweetcorn was a trigger for me but when I wanted to find out how fast food traveled through my system I ate some and as my body don’t break it down it comes out whole so I knew mostly my digestive rate was about 12-24 hours, when I am feeling very well it can be 36 hours but then I get the pain on the right as the food is having more trouble passing through. Have you tried buscopan? You can get from chemist, it’s for ibs sufferers, it calms the colon down, the colon is like a large vacuum pipe and it contracts to push food through, when in distress it tends to go into overtime, buscopan help with the contractions.
Thanks for letting me know, I'll try and look into it and see if it's something worth mentioning when I finally get to see someone again whether the GP or specialist. I've tried to research a lot ( sometimes too much 😅) so thought I'd asked here as I'm sure there are people with much more experience and knowledge than me to offer me advice like yourself as it seems even each GP has their own opinion on the matter.I have an understanding of different fibres but again will try and look into trying to balancing them out more, it's just trying my beat with what I already have going on in my life (not an excuse, just exhausted most days)
Ironically I've not tried buscopan, think just because I've tried one thing at a time to see if it's worked for me, just ordered some alflorex thanks to a recommendation here so going to give those a try too, so may have to pick some up.
It's not that I'm lacking an appetite unless I get nauseous, it's just what it's doing to my body everytime I do eat.
Hi JC, welcome to the forum. I am sorry you are struggling. Helpful stuff from Louisa, Buggins and xjrs as usual. Autism & ADHD run in my family. If your son is in school, a dx can be a gateway to getting any support he might need. When my late husband was diagnosed with autism (age 73!) it was a shock, but so many things he did made sense and I was able to adjust my mind set towards him because there was suddenly a reason for his quirks. One grandson is autistic, and another has ADHD. They are both fantastic young men. Both very bright and capable. If you do have an ADHD dx yourself, there is treatment which might help to calm your thoughts. Congratulations on the upcoming wedding. Let us know how you get on.
Thank you for the response, thankfully my son has gotten his diagnosis and we are in the process of trying to get him an EHCP at school to get him one to one support as he is quite lacking in areas. He's a lovely boy and an intelligent child, but unfortunately socially and development wise he is around 2 years behind so we need the aid at school for him to keep thriving like he has been.
Myself, I am on Right to choose waiting lists for assessments and hope to get somewhere sometime this year, it's all been a long and tiring process tbh.
My GP's sometimes don't seem to understand why I'm pushing for the assessments, but for me it's acknowledgement of what's going on inside me and being able to move forward aswell as seeing a lot of traits in my son that I used to do and still do now.
Thank you, at this rate I'll need a commode at the end of the isle when getting married just in case 😂.
I hope the school is supporting your EHCP bid. it really helps if they are. My daughter struggled with her eldest, but got there in the end and now has a bit of a reputation as mother tiger (Go girl!). My son had full cooperation from both the primary school and the high school. Both found it made a difference. Interesting that you are seeing traits in your son that you recognise in yourself. If I have a big event coming up, a loperamide a day starting a couple of days in advance works for me. There will most likely be a loo in the vestry, so might be worth asking about it. I hope it all goes well.
Thankfully the school has put funding to getting priority with neurodivergent services and also been having someone in every fortnight for a session just for children with autism and any other development aids. His current teacher has been brilliant with pushing for help and getting the paperwork sorted so we can't fault her on that end. I grew up with 2 older brothers and my parents working often, so I didn't realise till much later on that what was going on for me at the time wasn't shall I say "normal" and my brothers used to bully me for it, but its all a learning process.
Im glad to hear your family managed to get the help they needed, it's good that the help needed is getting recognised and not being put down as weird or naughty children.
This sounds very positive. It's great that he is getting so much help. I hope you also get what you need. Thinking way back, my husband was always a little 'different', but we were together 53 years and it only made sense to me in the last four years.
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