Hi
Thank you in advance to anyone who reads this and replies. I really appreciate it.
As the title says, I’ve had enough and I’m feeling at rock bottom. I am desperate for answers and to feel well. My mental and physical health are massively being compromised. I am losing weight. I’m not sleeping and barely eating.
I don’t smoke or drink and try to eat well.
In 2023 I underwent a right side hemicolectomy. For several months afterwards, I suffered from diarrhea cramps, with and without diarrhea. The attacks were without warning, often a few minutes after eating and often after dinner. Alongside this, I suffered from nausea and very eggy foul smelling wind, fatigue, joint pain, brain fog, acid, bloating etc.
Fast forward many months and after researching myself, I pushed for a gastro referral and questioned SIBO. I tested positive twice and I have had x3 courses of antibiotics this year.
I have had other tests to include a gastric emptying study. The gastric emptying study was negative for gastroparesis but showed ‘some dysmotility’. I then had a repeat study which showed an improvement. But my symptoms are getting worse and they have absolutely no idea what’s wrong.
I have had combinations of famotidine, domperidone and metoclopramide. Domperidone helped with digestion but the nausea keeps me awake most of the night. I have barely had more than a couple of hours sleep a night for the best part of 18 months.
I now have chronic nausea all day, worse at night. An intense sensation of pressure just below my ribs upper abdo, which feels like I need to burp or be sick not long after eating anything at all, but worse at night. I can barely eat a few mouthfuls of food and my BMI is underweight. Even eating a plain biscuit or a slice of toast makes me feel really sick and it takes hours to feel better. I feel better if I don’t eat but obviously very hungry.
Something is wrong. But all the tests continue to come back negative. I am due to have a transit study as since my hemicolectomy I pass stools every 2-3 days and I now have the added mental upset of having to physically remove my stools from the toilet every time I go, due to the volume, length and how sticky they are. Sorry tmi. But this is now my life it seems. Before my surgery I ate normally, used the toilet normally. Even after my surgery (minus the diarrhea) things were fine. I was eating normally etc.
I am very depressed. I am 39 with a young family and I’m exhausted by feeling so unwell every day. I can’t enjoy anything, or eat etc.
I am also due to have a PH manometry test as well.
I’m thinking whether to push for a small intestine test or not?
I have spent so much time researching and fighting for tests etc. But I’m in such a state I’m now doubting everything and I actually feel like I’m going mad. I was wondering if the antibiotics have caused my symptoms to get worse. The sensation of pressure was now and again and domperidone helped. But now it’s after every meal. I’ve been looking into probiotics but it’s a mindfield and I just feel like nothing is ever going to get me back to how I was.
I’m fed up taking medication for things that they don’t feel I have but they give them to me anyway until they find the problem.
I’m also on B12 and iron because these are now deficiencies since my surgery.
I also feel really sick before passing stools. The nausea wakes me up during the night and I sweat, shake, go really pale, dry mouth, before I pass stools and then usually I feel better or if not then still nauseous for a while, then fine again. This was not an issue before my surgery either.
Please if anyone has ever felt like this, what resolved things for you? What was the cause?
Thank you x