Hi everyone, I hope you’re all doing ok. I’m hoping that someone will listen to me and offer a bit of empathy. I only have my husband to talk to and he’s good but he really doesn’t get it.
I’ve had IBS for many years but was formally diagnosed about ten years ago. For me it can be constipation or diarrhoea and my biggest issue has always been pain and bloating.
About a year ago I started getting lower left abdominal pain (bad!), bloating, constipation (or dry, hard to pass pellet-like stools) etc. that would last for weeks. Then, after a while I’d open my bowels about seven times in a day then get diarrhoea the next day and then gradually the pain and bloating would ease. As this was different than I was used to, I saw my GP, had blood tests, stool tests (FIT and faecal occult) and all were ok. Since then, I’ve had this issue about four more times and am currently here again - been in pain since 5th July, then yesterday I went to the loo 6 or 7 times, had diarrhoea x 4 today. I’ve been taking Alverine and Colpermin and have just started Movicol. I spoke with my lovely GP this morning and he feels certain that this is my bowels getting ‘backed ip’ due to my IBS. He’s recommended taking Movicol daily and Senna when needed. He’s also doing another FIT test for my reassurance.
I have had quite a bit of stress over the past year to be honest . Can anyone relate to this? Do you get bunged up and experience horrendous lower abdominal pain? I just want to talk to someone who understands this nightmare condition.
Hello Roo. Yeah, it can be really hard for others to get it, even those really close to us. It's just one of those things you don't appreciate unless you have it yourself. It being largely an "invisible disease" certainly doesn't help at all.
Here is certainly a good place to share, as we all definitely get it (as in understanding, but also in having the condition itself). We may not have a solution, but sometimes it's just good just to listen and empathize.
That said, have you or your docs talked about diverticulitis at all? The lower left quadrant, the excruciating pain, feeling backed up, the stool consistency & what sounds like it may be overflow diarrhea just made me think of what I went through when I got diagnosed with diverticulitis.
P.S. Stress definitely plays a big role. You'll find plenty of advice & confirmation here on that.
Hi winfong. Many thanks for your reply. Yes, I have been referred back to the colorectal specialist for a colonoscopy but I live in the UK, our NHS system is rubbish, and there’s a huge waiting list. My GP said yesterday that it will be six months to a year before I’m even seen. 🥲
Hi,
I understand exactly what you are going through. Wrangling with my worst flare up in a decade right now. Tired of being told, we found nothing and equally as tired of being told I'm depressed. Just when the medical boffins will wake up and listen is beyond me. Of course I'm anxious and stressed. Who wouldn't be after years of going through hell backwards.
In the last few weeks I have finally gotten traction and have been getting tested, poked and prodded and letting blood. Just completed my Oesophageal manometry and Ph tests today. Fingers crossed the acidic stomach, reflux, GORD and acid stripped lips with a mouth turning from raw to ulcers will be enough to evoke a positive response.
I have had 2 weeks of constipation then suddenly this morning into diarrhea. I never though I would envy anyone with diarrhea! But I do.
I have done the fodmap, no gluten, lactose salt sugar and in fact no food at all and have only found starvation the only solution. The acidic stomach, the reflux, the acid stripped lips and ulcerated mouth all go and it becomes very easy to starve after the first few days of craving. Sadly it is only a permanent solution which isn't anything but a last choice from desperation and despair. Yet here am I steering down that barrel pondering the odds.
There are a couple of things that keep me going, no not to the toilet! Hanging to life. I remember a skit of Ali G's I saw some years ago, which lightens my mood when constipated. He was asked if he wished to lay the first brick on a new construction site. His response was to down pants and squat! Passing bricks is exactly what it feels like to me and gives my a giggle every time lifting the spirits for the moment. Then there is my cursed attitude of never giving up or accepting defeat.
I get tired of the "worked for me" with nothing but anecdotal evidence and not a shred of scientific proof. Or the "how do you put up with that?" What choice do I have! get real. Unless you have or have had serious IBS you have little concept of the problems we must put up with. Trying to find a Dr with a proactive attitude and the knowledge to help is a difficult road to travel. But just occasionally I'm blown away with one such Dr who wants to help and reaffirms my belief in Dr's. Happen to have found 3 in the last few weeks and a dietitian with similar problems herself and you can bet I'm hanging onto them for life. Finally getting some traction at last. Not sure it will end well, but at least it is hope for something better. Without hope there is nothing.
Cheers
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Thanks for your reply DC39. I hope we can get some relief soon.
yes I understand exactly however my GP sent me for a colonoscopy and that revealed I had diverticulosis. Small pockets in the bowel where waste was getting trapped, bunging me up then after a lot of pain it would finally release. A bit of a diet change and the episodes are not so frequent now.
Hi Slman. Thanks for your reply. Yes, my GP has referred me for investigation but the UK NHS isn’t fit for purpose anymore and there’s a huge waiting list.
Would you mind telling me what your diet changes were please?
If you've not tried Kefir I would recommend (Biotiful) Kefir with probiotics (Biocare). Over time it's really helped restore my gut. Not a full cure, but it's been so so much better.
Stress is a trigger and it's a time to really take care of your body in all the ways you can.
Hi serena-g. Thank you for your reply. I’ve tried kefir before and probiotics and both have made my symptoms so much worse. I’ve read that they can do that for the first few weeks to a month but who’s got time to be chained to the loo for a whole month. Maybe I should try again!
Hi, sounds like you may have what I have, which is IBS-C with visceral hypersensitivity which is causing the pain.
What is your fibre intake like? I find that I need to have much more fibre than most people to have a BM. Some people's constipation is due to their intestinal anatomy, where the colon is longer and more loopy than other people's (called redundant colon). This means that food take longer to pass through and as it takes longer more water is sucked out of it and becomes hard too. You can then get a backed up, which can lead to overflow diarrhoea where liquid food seeps around impacted stool.
The things that have helped me the most are:
1. Alflorex probiotic - if you have a gut bacterial imbalance (which many people with IBS do), any dominant bad bugs can cause symptoms such as pain since they irritate intestinal nerves. Alflorex has been scientifically studied for IBS. Much of stool is also made up of bacteria, so adding a probiotic may also help BMs. It contains Bifdobacterium which is particularly good at fighting infections and could help bring things back in balance. It also helps to digest complex carbs which may insist you with increasing fibre. In my case, before Alflorex, I couldn't eat whole grains at all without causing pain. Now I can eat many high fibre foods. I would try Alflorex first.
2. Linaclotide - this is on prescription and is for IBS-C with pain. It is supposed to also help with BMs and calm intestinal nerves. Full pain relieving effects occur after 10 weeks. After 10 weeks Linaclotide reduced my pain by 50%-60%. When I added in Alflorex it reduced my pain to zero and only comes back if I add in foods that I am particularly intolerant to, however I can now eat much more. Since Alflorex had such a big effect on me, this is why I'd suggest this first, since you may not need the prescription on top.
3. Nerva gut directed hypnotherapy app to help calm intestinal nerves.
Let me know if you want some tips about how to go out increasing fibre, but you may need Alflorex first to help you to be more tolerant to it. Hopefully with these measures, you will no longer need the Movicol.
Hi xjrs. Thank you for your reply. Yes, I definitely think that I have gut hypersensitivity and hyper vigilance. I am working through the Nerva hypnotherapy too and it all makes sense to me.
I’ve tried probiotics and have always had really bad reactions to them. I’ve not tried Aflorex though. I’ll look into that, thanks. I’m in the UK and I don’t think that Linaclotide is licensed here. My GP has given me some liquid laxative to try so fingers crossed!
I have reacted to probiotics in the past too - particularly ones with multiple strains and in high numbers (CFUs). From the research I have done IBS sufferers do better on probiotics with lower CFU numbers (<10 billion CFU). Alflorex is 1 billion and is only one strain - a particularly strong one passed from mother to baby during a natural birth to prime the guts defences. The strain (Bifdobacterium) also becomes lower in numbers in your gut as you get older. It has also be clinically tested for IBS at that CFU level. The makers say that multiple strains can compete with one another.
I am in the UK and Linaclotide is available in the UK. It is under the brand name Constella. My GP hadn't heard of it since it is relatively new, but my gastro recommended it. It will definitely be on the their NICE approved list if they look it up.
your story is the same as mine al but I have a wife lol our daughter seems to be heading the same way. I had a real bad flare up that started about the same time as lockdown, it was really bad right up to November 2022 when I had a colonoscopy and had to take the solution to empty me out, it sure empties you out lol, at the colonoscopy they found diverticulosis explaining the pain lower left and the said I had been suffering bad constipation, the diarrhoea was most probably flush by, while I was waiting for my colonoscopy I had the stool test and fit test, the stool test showed high levels of calprotecin now I am under a gastroenterologist who is doing more test but she still thinks it’s ibs. I have been battling this for 30 years, I have missed many family days out, I had to starve myself when my daughter got married I didn’t eat for two days pria apart from plain boiled rice just to make sure I didn’t spoil her day even tho the day was done in such a way that there would be a couple of hours in between so I managed to go home and get some rice. Even now I take each day as it comes, when I was working it was very stressful going and returning from my place of work in case I needed the toilet in a hurry. Have you looked into fibre there are two types one soluble the other insoluble one will bind you up while the other makes you loose the aim is to get a good balance, another thing is tap water I can’t tolerate tap water due to all the chemicals in it, I was on bottled spring water for 10 years before we had a filter system added to its own tap just for drinking washing veg etc, to much fat will start off a flare up, not drinking enough, to much caffeine is bad, I only have caffeine free, and stress is a big trigger, I was a workshop manager for 37 years and when it got stressful I sure knew it. I hope this will be of some help to you.
Thank you Lewis. Yes, I’m well clued up on fibre and am doing my best with that. I only drink decaf anything and I think that stress is a big trigger for me. I’m currently awaiting blood test results so my anxiety is in overdrive. My hubby says I’m my own worst enemy.
Hello Roo, I can relate to what you are going through at the moment. I have had IBS for almost 40 years now and the treatments have changed very little in that time.
Have you been on your medication for a while because I have had a lot of side effects from various medications including Colpermin and Movicol?
I have been taking Boots digestive support tablets which include bacteria and fibre and found them helpful.
I have been on the waiting list for gastroenterology for over a year now and still have about another year to wait (UK)
Hi Lucycal. Many thanks for your reply. I’ve only been on Movicol for a month or so and was changed to Alverine at the end of last year as Mebeverine wasn’t helping at all. I will look at those Boots tablets, thank you!
The NHS is on its knees and all of the managers should be ashamed of themselves.
I’m so sorry that you’re going thru this. I’ve had IBS for 9 yrs & the pan is unbearable. I believe that I have colitis, as ER doctors always mention. Please have a colonoscopy, if you haven’t. My last ER visit turned into emergency surgery, lost half my colon & now going thru Chemo for Stage 4 colon cancer. My neighbor was recently diagnosed with the same. If he’d had a colonoscopy, they would’ve found it earlier.
So sorry to hear about your struggles. It’s very hard to deal with especially when there is no clear diagnosis. I suffer from similar symptoms. I have multiple very loose bowel movements in the morning and constipation throughout the day. The pain is unrelenting and I have got to the point where I have stopped eating. My weight has dropped so low that I am being admitted into hospital next week and put on feeding tubes. I’m very anxious about all of it. The only comfort, albeit cold, I can offer is to say that you are not alone and many people on this forum struggle in their daily lives because of this awful illness that is over looked and under researched. If I find any relief I will post info on the medications on this forum. Trust me I’ve had every procedure, test, diet, medications you can think of all to no avail. Apparently I am healthy apart from the fact I cannot digest anything and am close starving to death. Sending you my best wishes
Hi GKT1969. Thank you, thank you sooo much for your reply. I fully understand what you are going through and have been unable to eat myself. I’m so sorry that you’re in this position. Please let me know, here or via direct message if that’s possible,) how you get on. I’m thinking of you and here for you.
I’ve been so anxious today (especially from a very unhelpful reply) that I’ve decided to pay for a private colonoscopy (using some of my pension) as I really can’t go on like this. This condition is a nightmare!
Thank you so much for reaching out to me when you’re going through anxiety yourself.
hello Roo, thank you for your reply it’s not right you have to py for the colonoscopy yourself. My advice is to ask them to really understand your symptoms and for the procedure to focus on these symptoms rather than just a standard colonoscopy. I have had 3 all of which did not find anything. Same with the endoscopy but I honestly think those procedures have a standard protocol and can miss issues related to specific symptoms. I would like to reach out directly but that would mean exposing our email addresses. Let me know but in the meantime my best wishes and let’s stay in touch and work through this together xxx
Hi GKT1969. Yes absolutely definitely stay in touch and support each other through this nightmare. I’m happy to give you my email address but not sure how. Your reply really touched me and I can feel that we are both struggling. I’m in the UK and our health system is really poor at the moment so, unless I want to wait a year, I’ve got to pay. We are not rich by any standard buy I do have pension I can use so I’m in a better position than most. I’m going to telephone the surgeon tomorrow about it so will let you know how it goes. I’m feeling so anxious tonight and am so low with all this. Thank you so much for your support. Let’s do this together! Xxx
I’m from the UK although i now live in America. I understand the waitlist on the NHS that’s very depressing. I have to go on sick and over here you do not get paid once you exhaust the 5 sick days the company provides. Equally depressing and all adds to the stress. Sorry you are so low I feel the same today has been horrible and the thought on having to be fed with a tube is making me very upset. I wonder how we can exchange email address. Let me look into it. You are in my thoughts xxx
Hi GKT1969. I don’t get paid if I’m off sick either, so trying to just carry on as best I can. It must be very scary thinking of going into hospital and having to be tube fed. Will it be intravenous? I know it’s hard but try to do something that you enjoy to try and distract yourself. I’m just facing a new day of pain, poop and anxiety. Oh joy!!! I have sent you a DM through the ‘chat’ facility on here. Xxx
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