Fed up with IBS diagnosis! Ridiculous!

Hi guys I haven't been on for a while as iv been so very I'll. In May I lost 2 and a half stone in 4 weeks! Yes exactly. I went to see rheumy (not my usual Dr) but my urine showed very high glucose. So rushed off for blood tests. The next 4 came back high. I finger pricked 8 times a day for 8 weeks. (My family are diabetic so I know history and records mean alot) after 2 months of sugars of 10.3 to 14.1!! My GP loosing all my results said I'm fine! So iv battled on come November iv gone from 11.5 stone to 8.5 stone! Yes 3 stone. I now start loose stools/d evry day so thinking my sle is flareing up I go to gp. From then till now iv had ALL high blood tests. Including ovarian cancer test. High FIT test,calpractin?,ferratin assay, then get told to prepare by 7yes7 different GPS that iv either got ovarian cancer or and bowel cancer. So I make this Christmas as good as possible with my 18 month old granddaughter (as it May be my last) I pack my hospital bag and have a colonoscopy, CT with medium, and ovarian scan. Get told 4 weeks for CT results and 6 weeks for my colonoscopy results. By the way I was put too sleep halfway through my colonoscopy and then after shown 6photos of biopsies which 2 of them looked just like my dad's stomach cancer. Then 5 yes I said 5 days later I get a letter with 2 lines on it saying CT fine colonoscopy fine!! WOW!! My hole family and friends have reacted the same. That's wrong Nikki look at you! You look like your dieing! I'm now 7.7 stone gone from size 14/16 to a size 6 and still loosing weight!. They reported in my ovarian scan a mass of fluid around my right overie. The cancer expert (I use that loosley) hasn't even mentioned it. Iv asked for a second opinion. My GP went mad sent me for emergency gastroenterology. However gasto have written back (without seeing me) saying iv got IBS!!!! I want to scream!!! My work think I'm lieing but won't say it. I can't stand for long iv still got blood in my stools I still feel the same well worse. And I'm surprised to do a slow return to work next week. I'm sorry it's such a long post but I honestly don't know what to do and I feel like it's not worth going on! I battled for14 very long years to get my sle diagnoses I have not got that fight in me now. I'm so week and so I'll. My rheumy is going to see me 16 March but in The mean Time I'm surpose to go to work with people think iv been making it up! Iv Never been off work longer than 3 Weeks and that's with pluerasy and chest infection iv been off since November and I honestly don't know how I'm going to be able to work for 4 hours once a week let alone 9hours a day 5 days a week. I DO NOT HAVE IBS!! I'm sorry I don't know what to do. Thanks for listening to me I am really desperate 😔

[KayHimm]

What do you mean “I can’t stand for long?”

[Hidden in reply to KayHimm]

I have hardly any muscle mass in my legs like my dad when he was dieing if stomach cancer. I'm so weak. I thought lupus makes you exhausted but this is rediculous. U had to squat on the floor yesterday morning for 20 minutes in the que for the drs.

[KayHimm in reply to Hidden]

You really are suffering. If it is that you feel light-headed when you stand, make you mention this to your rheumatologist. The autonomic nerves connect to the Intestines as well as the nerves that keep blood from pooling at your feet.

The tests you had seem more to indicate structural issues. I don’t think they can diagnose motility problems, which people with autoimmune disease tend to get. Ask your your doctors if they think you might have motility dysfunction. It is sort of IBS but with a known cause.

Let us know how you make out.

K

[Hidden in reply to KayHimm]

Oh my God Kay I think you have hit the nail on the head. It's caused by diabetes!!! Now that makes sense I'm going back to the gp with this thank you lovely. I think you may be a genius xxxx

[KayHimm in reply to Hidden]

Well, I didn’t say it was caused by diabetes. It is just that the nerves can be affected in lupus and cause IBS- like symptoms other symptoms of autonomic neuropathy. They would picked up on diabetes by now, I think.

Try not to get hung up on the IBS diagnosis. It is very common in lupus, a real thing. They think it could be nervous systems related or maybe gut/immune system related.

What other symptoms do you have?

[Boudica1]

Hi, heck you are going through it and you shouldn't be.

I hate that so called IBS diagnosis thats what one of my GPs keeps calling it and even the Gastro surgeon. I've actually been diagnosed with Diverticular Disease by the surgeon himself in the report of the colonoscopy so why they keep referring to it as IBS god only knows. Some of your symptoms sound similar to mine but you also have one heck of a lot going on at the same time and the last thing you need is to be shunted about with "oh it's this or maybe hang on it's that".

Wishing you all the best and virtual hugs.

x

[Hidden in reply to Boudica1]

My gp clearly told me that if the tests show no cancer then I absolutely have IBD Chrome's ECT. Because my FIT test and calpractin test and all other tests were high and I quote you don't have high FIT and calpractin levels with IBS infact it rules out IBS! Now she's changing her mind because gastro said so without seeing me. If you go on Nhs or nice or fit test they all say high levels rules out Ibs!? I'm so fed up. Thanks for your hugs though ❤️ xx

[Hidden]

I know sue my whole family are diabetic. I know all the signs and symptoms. It was my rheumy that discovered my diabetes. However my GP "lost" the next 4 very high blood tests. My pharmacist where I work told me to do bloods eight times a day for eight weeks to get ahead with the GPS and give them history. So I did and my GP said that blood sugars of 14.2 are fine!!!lol I know I should only be between 4 and 5 max. But I'm hyperglycemic! So iv never been above 1.5 my entire life. Lol so 14.2 is ok? So it's rolled on science last May and now it's IBS!! Hence why I will not accept IBS as my diagnosis it's totally rubbish. And now I was reminded by the above post that yes undiagnosed diabetes does indeed cause stomach bleeding ECT. So I'm going to go private I'm selling my car whatever so I can pay I'm sick of these stupid labels IBS, chronic fatigue,fibrmyalger. All of these are names GPS give to people like us when they can't be bothered to investigate further. So they say these things to make us go away! If I'd of done that Over the last 14 years and accepted fybromyalger. I'd of been misdiagnosed and they'd of missed lupus srogens raynauds chronic osteoarthritis slow thyroid tumor on my pertuatory gland and now probably diabetes!!! I mean seriously the NHS and gps are letting us all. Down. My mom's been misdiagnosed for 32 years! She now has discoid lupus and she's blind and bed ridden and lost all her hair not to mention her dignity! They have not said sorry it's taken 32 years to diagnose. You know why? Because it's.me who gave them the answer not them!!! My mom is dyeing of her lupus as it's to far gone. I do not want to die like her! We are beeing let down!! ☹️

[miccika1]

Your symptoms sound a lot like my coworkers' who has ulcerative colitis. Did they check for that?

[Hidden in reply to miccika1]

Well even though the Dr said from the beginning that if it's not cancer it's definitely IBD or chronse ulcerative colitis ECT I think she said there are 4 IBD s they look for? However like iv said the colonoscopy was clear!!!? Even though they put me to sleep half way through? And I saw the 6 biopsy photos and 2 looked very suspect to me having seen similar. And they went to discharge me saying all clear no biopsies. When I had to stop them and say I'm sorry your wrong iv had 6 biopsies from I quote 6 very sore very suspect sites. The nurse then went away and found out it was a mistake and I had indeed had 6 biopsies and told me to be very careful for the next few weeks as I'd be in pain and quite sore!! Now my gp says because the 2 sentence results that took 5 days to come says I'm fine nothing to see here. Then obviously I don't have IBD or Chrome's or ulcerative colitis or any other form of IBD!!! Everyone thinks iv been misdiagnosed. But 25 days later the cancer specialist I use that term loosley has not written with an explanation! And I keep going back to go to see what he's said and the more I go the more the gp has gone from this is a wrong diagnoses to oh well I think gastroenterology are probably right and it probably is IBS! In other words this is taking to much time and just take the IBS diagnosis and go away. So what do I do? I can't leave my GP practice. Round here we are given one and that's your lot. Iv asked for a second opinion. Gastro without seeing me atall is my second opinion!! Or it's try to go back to work save up and go privite!! It's 12 o'clock dinner time iv just woke up and now I need to go back to sleep. But I'm due at work Monday lol life's a joke. I am truly sorry guys for moaning I just don't know where to go and what to do. Iv ask for a second opinion that's got me this stupid diagnosis of IBD we all know I haven't got that. But in reality I can barely keep upright I'm so weak I have hardly any muscle mass. I'm on a really healthy lupus diet.even all the GPS specialist said I can't eat any better than I am. I give up!

[miccika1]

What are your ANA and ENA panel results?

[Hidden in reply to miccika1]

No idea miccika1 don't even know if iv even had them done! Sorry