Anyone in a similar situation?

[Sunita77]

Hi, I apologise if this post is too long. Basically my history goes back to 2006, when I suffered bouts of diarrhoea with nothing to prevail and just kind of got on with it after visiting my G.P about it. I started a new job working with children and it wasn't until this period my symptoms were accompanied with sickness, retching in the morning, diarrhoea, feeling bloated and gassy, eating a bit of my meal and feeling full up straight away and abdominal cramps. I also use to eat certain foods and feel sick. This went on for two years until my G.P. sent me for an endoscopy. I was told it was Gastritis and that my stomach lining was inflamed. It cleared up, but I was still having the symptoms and my G.P. verbally diagnosed it as IBS. Over the years I learnt to let live with the symptoms and would make various visits to the dr's. It wasn't til 2013, I was diagnosed with Oesophageal dysmotiliy. Things took a turn for a worse, I had emergency surgery for an ectopic pregnancy followed by blood clots in my leg and lung. It was until 2016 that my symptoms went super crazy, I was having pelvic pain non stop, my bowel movements were fluctuating between diarrhoea most of the time. I was being sick after eating and many more symptoms. I was also bleeding from my bottom too. It was concluded it was Endometriosis but after being on pre-menopausal injections my pains and symptoms were there. So it was concluded I didn't have Endometriosis and was told to be referred to Gastroenterology. I got quite poorly all of a sudden this year, I was admitted to hospital and scans showed I had bilateral incisonal hernias that were obstructing my bowel. I had emergency surgery again and a bowel resection. I am now being investigated by Gastroenterology as I was referred by my G.P. I have had a previous stool sample done (through the the years) which have come back normal and my blood tests were normal apart from a borderline CPR result at times. I have now been told to do another stool sample and have had a blood test done again. They are looking at my CT scans again from June just to make sure they didn't miss anything out from last time. The consultant has said my case is very complexed because my past illnesses could be causing the symptoms too which was abdominal surgery (twice), adhesions (from my first abdominal surgery) and the incisonal hernias. He is going to discuss my case with the surgeons and consultants and get back to me. Could this be more of a case of IBS or something else? Thanks.

[weegmack]

Oh goodness, what a nightmare for you. I’m really sorry you’re been through such an awful time. You are so brave to keep going through all this. Are you in the UK?

It sounds like you’re suffering so badly from your surgeries more than this being a case of IBS. You have a lot of intestinal issues by what you describe. Please keep fighting for a definitive diagnosis. I honestly don’t think anything sisnister is going on in there, I just think your poor guts are in a bit of a mess 😕😕. Xx

[Sunita77 in reply to weegmack]

Thank you. Yes you're right I think the surgeries are now making my symptoms worse and that is what the consultant thinks as well but my argument was that prior to my first surgery in 2015 my symptoms were still crazy after 2006. I do think my digestive system is slightly messed up but would be happy for more examination via tests just for reassurance as it'll be 13 years next year with no answers to which I deserve!

[Sheeniejay in reply to Sunita77]

Did anyone suggest a colonoscopy? I had one this year because of chronic constipation. It's one of the worst things I've had done - preparation is brutal - BUT it did, thank hek, rule out one of my worst fears. If you're offered one - I asked for one from the internist here in the Netherlands and he agreed - or ask for one and they agree. to put your mind at rest and rule out that aspect - I'd urge you to take the IV painkiller. Luckily, it knocked me out and, even though I'd wanted to be awake so I'd not have to wait to speak to the internist directly afterwards, I do think it's better to not to be conscious! I've also had an endoscopy and it's heaps worse than that. I hope you find out what is causing all these problems. I know too well how mystery conditions really, really pull you down mentally. x

[Sunita77 in reply to Sheeniejay]

Thank you. The consultant did mention a colonoscopy, but because my bloods and stool sample have been fine he seemed a bit reluctant. I've had an endoscopy before I'm the past and I hated it. They numbed my throat before hand and I was gagging through out the whole procedure. I've heard the preparation for the colonoscopy is bad and some people find it painful. The consultant also mentioned that he wasn't too keen to sedate me either especially with my thrombosis history. If they offer me a colonoscopy I'll be happy and then at least I know they did investigate it.

[Sheeniejay in reply to Sunita77]

That's how I felt. My bloods etc showed no markers but I also knew two people who had no symptoms etc Have sedation for a colonoscopy. The pain without it is excruciating - I know someone who tried without sedation. I gagged throughout an endoscopy too but I knew it was crucial to rule out Crohn's etc. Check what exactly they checked for during the endoscopy. If not everything, they can check again when they do the colonoscopy, they just go further up. That's what my internist did. If you do have a colonoscopy, you can message me & I can help you prepare mentally!

[Sunita77 in reply to Sheeniejay]

Thanks.

[Kilgh in reply to Sunita77]

Your doctor may be correct here. Any procedure could make IBS worse. And on top of that you have other complications. My Gastro wouldn't send me for any invasive procedures either based on my symptoms and clear bloods and other tests. But he did say if it was stressing me out not having them he would schedule some. Depends how stressed you are.

[Sunita77 in reply to Kilgh]

Thanks. I'm not really stressed but I really don't want my symptoms to get worse like last time but I do think I need some answers with a bit more investigation.

[Kilgh in reply to Sunita77]

Then you need to do what you think is right. As long as the medical risks are not too high.

[Eliana5]

I'm so sorry to hear you are going through this. It is frustrating that the medical community does not take bowel/intestinal issues seriously..although it accounts for more annual visits to Doctors a year, than most anything else. I wish every day for more research and more help for those of us who are suffering. Instead, medication and surgeries..are thrown at us..yet no look a for root causes only symptoms. I am wondering if you could benefit from someone a little more specialzed than a Gastroenterologist, like a Colon and rectal surgeon. For some reason, they seem to have more answers, but that is just my experience. Just keep insisting on tests..Anal Mamonetry..upper GI and lower abdomen barium follow through..testing for dumping syndrome..I hope and pray we all find answers..please keep us posted..

[Sunita77 in reply to Eliana5]

Thank you. I'm just waiting to hear what the next step is and will keep you all informed!

[Sunita77]

Just an update: The gastroenterology team decided that I needed another CT scan as I was still having on going pain since my operation. I had my CT scan in February, it's been nearly 3 months and I haven't had my results back yet (I was assuming everything was normal hence not receiving the results). My symptoms are back which includes a painful backache, so I went back to see my GP, who told me my results as he checked up the results. Everything came up fine, as there wasn't any new hernias detected but they have found an abdominal mass. They have given the dimensions of the size which has got me worried. My GP has reassured me that it isn't anything to worry about as they are the specialists, they will tell me a bit more about it and what they will do. In the meantime he is going to chase it up with them. He has also mentioned that it is a periumbilical mass, but on the results they do not mention what it is. I thought it could have been a hernia but they have put down no new hernias detected. I'm also having a MRI scan done as my GP mentioned spinal disease. Has anyone been in the same boat with an abdominal mass?

[Sunita77]

1 year on and I've finally had a colonoscopy after my visit to see a colorectal surgeon. I absolutely hated the moviprep. I sailed through the first lot but vomited the second lot up. I.had sedation but still could feel everything and found some parts painful and two nurses had to hold me down. They took 8 biopsies and they found a few terminal ileum apthous ulcerations. After 13 years I hope I finally get answers!

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