Please help :( new here
Hi All
New here, and new to IBS full stop actually but currently sitting on the toilet in despair (sorry for the overshare especially so early on) I’m really looking for some advice/support.
I’m a 32 year old female from the UK.
I’m lucky enough to have private health cover via my employer and I have only recently been speculatively diagnosed by a gastroenterologist as having IBS after years and years of gastro issues. He is in the process of ruling out anything else it could be, including anything nasty although he doesn’t expect it to be. (I have a colonoscopy and upper endoscopy on Friday) before he definitively lands of IBS as a diagnosis.
However I really want to understand if my symptoms/experience is like anyone else’s as right now I’m really not convinced it’s IBS (based on my understanding of IBS) because of the frequency and nature of my gastro issues.
So to start at the beginning…. For around 8 years I’ve experienced sporadic bouts of sudden and painful diarrhoea that is accompanied with very intense awful cramps, nausea and the feeling that I will faint.
What usually happens during one of these ‘episodes’…. I will eat a meal and within about 15 minutes my stomach will begin to growl, gurgle and pop and mild cramping starts.
Knowing the warning signs now I’ll go to the toilet and almost always it starts with passing a few normal solid stools but within about 5 minutes or so the cramps will intensify to the point I cry from the pain and the normal stools will be replaced by explosive very watery diarrhoea.
I will get very hot to the extent I need to take all my clothes off; I literally don’t care where I am, public toilet, someone’s house, the clothes have to come off as I feel so hot and sick. I’ll also crave the feeling of something cold on my neck so I try to find something cold in advance now, I will also get a few really big waves of nausea, start to shake and have an overwhelming feeling that I’m going to black out/faint, although I never actually have.
The whole experience usually lasts around 20/30 mins but the reasons I’m unconvinced it could be IBS are the following
- it doesn’t happen all the time, I can go months without this occurring at all and then it might happen multiple times in a row or on a more frequent basis for a while before disappearing
- it only happens once each time! So whilst the ordeal lasts around 20/30 mins and is always horrendously painful I get that one bout following the meal and then it’s done until the next time. I can continue with my day/eve, continue to eat and drink without pain and sometimes even pass a normal stool a few hours later
- it doesn’t seem to happen after breakfast or lunch, only in the evenings after dinner. I can only think of 2 occasions over the years where it has happened after lunch or any other time of the day except dinner
- there seems to be no rhyme or reason as far as what I’ve eaten etc I’ve tried keeping diaries, excluding things from diet etc it makes no difference. I have even experimented with EXACTLY the same thing, one day I’ll eat it without so much as a twinge, next day EXACT same meals but the diarrhoea will happen
A few other things that might be worth noting is over the past year I have lost my appetite completely but I am fairly certain that is stress related. Probably also completely unrelated but I’ve had tail bone pain for many years that no one can find a reason for and breathlessness that 2 of the top respiratory doctors cannot find reason for.
Even when I don’t have diarrhoea I do seem to have a very regular bowel, needing to go to the bathroom 2/3 times a day and often the second I wake up in the morning.
The only thing I’ve ever found over the years and hundreds of hours of searching that I thought my symptoms sounded like was ‘dumping syndrome’, until I realised this is only relevant to people who have had weight loss surgery which I haven’t, I have always been slim.
But the sudden and intense need to go to bathroom following a meal that is accompanied with nausea and sweating and faintness BUT only ever occurs the once, I feel fine as soon as it’s passed and can leave the bathroom and continue as normal, until the next time which maybe days, weeks or even months in the future.
I’d really appreciate any guidance, help, support, signposting.
So sorry you are going through this! I feel like you will get answers with the colonoscopy. Ask them to take biopsies. At least with that procedure you can rule out an ulcer or even IBD. Also maybe ask your doctor to test you on SIBO. You might have an infection of some sort that flares? Just thinking outloud. I really hope you get relief from these episodes soon. It sounds awful. -Elizabeth (team member)
I did forget one thing that I think is important to mention to that young lady who's probably having her colonoscopy as I type this. I'm one of those people that don't believe it has to take a long time to get fixed. BTW I'm not fixed but I'm a hell of a lot better and I look at things way differently than I did before. You're like me. I've read your posts. What I mean is at least you go out and do your life. And most of the time it probably works out okay. I know that from your sharing and I do the same as you do. I credit cognitive behavioral therapy for changing my perspective on this whole thing and I'm a big believer that it breaks the habit of poor thinking habits. Basically it's retraining the brain to compartmentalize the thoughts that can bring about an episode, and not let them overwhelm you. They are what they are and nobody's going to die. I know I've written this before but I feel very passionate about it. I'm finished now. 🤣🤣😇😇😇😇 Thank you for sharing your thoughts! Great points and I think changing your perspective on this diagnosis is so so important. You have to get out there and live your life. I hope you are well today. Hugs, Elizabeth (team member)
I'm sorry that you're going through this. I agree that this doesn't sound like typical IBS, also symptoms can be very different for different people... Since you mentioned tail bone pain, I wanted to share this story with you: https://irritablebowelsyndrome.net/stories/gut-neck-problems-linked. It's not exactly the same but sometimes gut issues can be related to other problems as well. I hope you'll get some answers soon. Wishing you all the best, Karina (team member) See US diagnostic protocols https://gastro.org/news/new-aga-guideline-a-targeted-approach-to-ibs-c-and-ibs-d-treatment/and IBS-D treatments, incl https://www.viberzi.com/en/about-viberzi/what-is-viberzi. Arm yourself with info and prepare to dig. MDs don't, in my experience, so I do now. Not pleasant reading but necessary. I now subscribe to NHI-Digestive Diseases bumf - free to everyone, God bless America. I discovered that decades of asthma puffers likely caused my IBS - two key ingredients. I've been much better absent puffers tho not 100%. Longer intervals btwn explosions. At some point I expect the explosions to cease altogether. I do have some pain with episodes, and Monster stomach often gets active with exercise, but I work out anyway. Monster can't be controlling. It took yrs to get this bad, may take time to resolve. But I am now hopeful that it WILL resolve. Prayer is a major feature of my daily regimen. I really like your approach that it took years to get this bad so it might take time to get better. I think that's so true, especially if your IBS was caused by medication that you've been taking for years... Thanks so much for sharing your findings with our community! Karina (team member)
Welcome to the wonderful world of IBS! (sarcasm) What you are describing is IBS. I'm not a doctor, but try eliminating dairy and greasy foods (those are proven to make me run to the bathroom) and see how you feel. You maybe can tolerate a certain amount of those foods, but too much, and you run to the bathroom.
You say you're under stress. That will do it, too.
Try taking 2 Imodium after lunch, to get you through dinner.
The feeling hot, the crying, the nausea- that's IBS. Be sure and drink a big glass of water after you have a bout of diarrhea, so that you don't get dehydrated.
I've had it since I was 3. Sometimes I know what triggered a flareup, sometimes I don't.
Good luck to you. And come back, and don't worry about oversharing, we all have been in your shoes.Thank you so much for sharing what worked for you! How have you been feeling lately? Karina (team member)
