I'm getting desperate and scared. I have endometriosis, pelvic congestion syndrome, MCAS, fibro, and who knows what else. GIs have told me I have IBS but theybe never actually tested me.
I developed allergies or intolerances to virtually all food when my endo got bad. I have had surgery for it, but it has permanently damaged my bowels. If I eat **anything** I am sick. Like, in so much pain at 3am I can't sleep anymore and have to get up. My body cannot digest food anymore (ie if I eat lettuce I'm pooping it out whole in less than 12hrs) and also can't move waste thru my bowels properly. I deal with extreme gas, bloating and distension when I eat. I was doing OK in 2022, I found a few vegetables and things I could tolerate without much issue. But I've slowly lost the ability to digest even those foods. Vegetables make me want to cry they hurt my body so much. Low FODMAP hasn't helped, I'm intolerant to many low FODMAP foods.
I'm not getting any help from doctors. My GP has me waiting on another GI referral. In the meantime, I can't eat anymore. It's too painful, I'm spending too much time lying on the floor and running to the bathroom, I have no quality of life, I'm so sick I literally spend part of my day at work lying on the floor hoping no one will catch me. I'm hoping once I lose enough weight I'll get listened to and put on an elemental diet or tube feeding, but in the interim I don't know how to survive. I'm thinking of making ginger broth and only consuming that and supplementing with just enough rice and chicken to keep me from fainting.
I'm scared, I can't deal with the pain anymore, I can't deal with the embarrassment of constant constipated diarrhea and gas and being so bloated I look pregnant even tho I don't have a uterus anymore. Desperate for help and don't know what to do anymore
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Suffering247
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My wife and many many others on this site have the same problem and hopefully will write. My wife lives on swanson chicken broth, noodles and pureed chicken. She is now down to 95 pounds and has been put on palliative care. This allows her to get pain meds. She has laxatives when constipated like trulance and levsin to stop diarrhea. Mash potatoes work and Boost or ice cream to put on wekiight, but they do give her painful gas.
I'm sorry to hear about your wife. I hope things can improve for her. Does she have any diagnoses to explain why she cant eat much? It looks like for now my best bet is chicken, rice (easier than wheat for me), there's one low FODMAP broth that's worked for me in the past. If it doesn't I'll make my own bone broth. And ginger, it's supposed to somehow decrease gas production and helps with motility. So I'm hoping that I can at least manage on that. I'm only in my mid-30s, I have to work to stay housed. I'm on my own, no one to rely on and going on disability would land me in homelessness. I don't have an option to not work. I'm so scared because I don't know how much longer I can keep doing this. Thanks for the reply appreciate it
I'm so sorry your experiencing this. It's not an ideal option at all but have you considered presenting to a&e? If your unable to tolerate anything then that's pretty severe, you could be malnourished and dehydrated and doesn't sound as though you're expecting a sudden improvement. The hospital would be able to insert a nasogastric tube for feeding whilst they investigate exactly the cause of your difficulties. Hoping you get some help / relief x
I wish but in canada doctors don't care. If I went to the er they'd tell me to see my gp and a gastroenterologist. If I start fainting because I can't eat then yes I will go to at least get stabilized. But unless I'm actively dying no one will help
Hi, I have dysmotility, so foods sticks going down. If my bowel flares up the specialist just said eat yogurt, so I buy Activia gut health yogurt, which do help a bit. Hope you get help soon, although these days it takes ages for help on the NHS. Take care
I've seen specialists and they shrug and tell me it's ibs and to deal with it. But I've been getting sicker and now I can only eat tiny amounts of rice and meat. Guess im just supposed to die awesome
Terrible service, you must keep telling them you are not fine. Go to A&E if you have to tell them you cannot eat and need help, someone has to listen. If they do not help you phone NHS England and report them, ask them who is going to help you.
I'm in Canada and our ERs are just terrible. They will tell me to go see my GP or a GI if I go in saying I can't eat. Or they'll label me anorexic and drug seeking. It's shitty here
Oh that’s not good, it’s not good here either to be honest. Maybe try changing doctors if no help or complain. Wishing you well and hope you get some help
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