Ive suffered with IBS for a number of years. I first remember symptoms getting bad when I was about 11 years old. Id had a few accidents at school, time off etc. Ive always just tried to cope with it as best I can but the older Ive got, the more debilitating Ive found it.
Im diagnosed with Hypermobility Syndrome and Fibromyalgia, both of which IBS is very common in. I have ridiculous amounts of Loperamide everywhere because Im too scared to go out without it. Over time however, it doesnt seem to work the same anymore. Ive been in a particuarly bad flare up for at least a few weeks now...pain, cramping & daily diarrhoea, nausea, and bleeding.
I have extremely bad anxiety with toileting. I cant even go for a wee if my family are close to our bathroom. So when it comes to diarrhoea, my anxiety is horrendous, Ive been known to hold it as long as I can that eventually I will have accidents. I know my severe anxiety (Im diagnosed with mixed anxiety) contributes to flare ups but my mental health team have been rubbish when its come to getting me more stable so I can try and live a 'normal' life again. Ive been out of college since age 17 due to my mental & physical illnesses, Im now 19...I can't stop feeling as if I cant carry on like this until Im 'old'.
My diet definitely isnt great. I struggle with food smells/textures and fruit/veg always seem to cause flare ups.
With my mental health not being great as it is - chronic pain, fatigue, IBS etc affect my mental health greatly too. I guess the point of this post was just to get everything out...I rarely see friends, I havent for years, I rarely go out, cant work/be in education and Im just feeling incredibly fed up. I just wanted a safe space to talk, where there was people who understood😭😭.
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lauren5678
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I'm so so sorry lauren5678 , you've an awful lot to cope with.
After a bad bout of food poisoning my IBS changed from C to D and I was getting diarrhoea daily and acute nausea and was very down. Fast forward to now, I feel so much better, the low fodmap diet has been my saving grace.
I begged the doctor to refer me to a Dietician and thankfully he did. The diet works in around 75% of people.
I really hope that you are able to give this a try, it's hard work but so worth it.
I'm so sorry that you have other conditions as well.
Hi, Lauren. Im sorry to hear how much you've been struggling.
I can relate to you a bit. I suspect I might have chronic fatigue syndrome and ibs. I also have this kind of anxiety with toileting you do - i cant empty my bladder when I dont feel comfortable, which is terrible.
I have barely been going out, have really no friends, not even family (they suck).
However, if you happen to live near London, I have just created a group on meetup for people with invisible disabilities. Its just for hanging out together. If you were interested, let me know.
Your situation sounds very hard. So much pain and anxiety and discomfort, day after day. I have a daughter just a couple of years older than you who had to withdraw from college because of chronic fatigue syndrome, and she struggles with anxiety about her future. When you're ill already, worrying about the future is the last thing you need but it's hard to avoid. She is lucky in that she enjoys spending time on the computer and has good friends she plays online games with and they chat while they play, so at least she doesn't feel socially isolated.
I had IBS which I think was caused by TMJD, which is a connective tissue disorder centred in the jaw joint, so it has some relationship to your hypermobility syndrome but isn't the same thing. I've managed to clear up my IBS but am still working on the TMJD - I think I'm getting somewhere with it but it's a long slow journey. I tried a low FODMAP diet, it didn't really help me though it helps a lot of people. What has helped me more than anything is mind-body awareness practice - lying down relaxing, trying to listen to the signals from my body particularly in areas where it's uncomfortable, and trying to see if I can do anything to help like relaxing areas that are tense or wiggling muscles nearby uncomfortable places. And trying to be aware of any urges I get while I'm doing this and respond to them instead of completely ignoring them as I would usually do - because I've found they are usually helpful.
One conclusion I've come to through this is that there is a feedback loop between my emotions and my bodily sensations. When there is suddenly pressure in some areas of my gut, I suddenly feel anxious, and anxious thoughts keep popping into my head, and if that pressure is suddenly relieved, the anxiety disappears too. Sometimes it just helps to be aware of this as it helps me discount the anxious thoughts. It's like my brain notices I'm anxious and flounders around trying to find what it should be worrying about, but if I tell it actually everything's ok right now, it's just a physical sensation, it stops me getting in a stew.
I hope you get the support you need, and can find solutions that improve your quality of life soon.
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Feeling dizzy, anxious and IBS
I feel like I jinxed myself...
Fed up feeling like this.
