Undiagnosed - looking for advice

[GlasgowGirl86]

Hi guys I'm looking for a bit of advice so here's my story.
My problems started a couple of months ago when I would occasionally get a cramping pain in my lower right abdomen and the odd bout of loose stools. I went to see my GP two weeks ago when the pain became worse and constant. I've had upset stomachs where nothing but mucus is coming out, noticed blood stains in the mucus and had maroon coloured diarrhoea. Over the past week I've alternated between diarrhoea and days with little or no bowel movement. I've tried buscopan and mebeverine and neither seems to help with the pain (which sometimes feels like a strange warm burning sensation). I'm currently waiting on a hospital appointment to see a colorectal consultant as my GP is concerned I might have IBD.
Do these symptoms seem familiar to any of you who do have a diagnosis of IBD? What can I expect when I do eventually get my hospital appointment.
Any advice and information would be really helpful. I think the not knowing is the worst part!

 

[scottsma]

Hello and welcome to the forum.While it does sound very much like I.B.D.symptoms,it's not wise to give advice until you're properly diagnosed.But blood and mucus and cramping do seem to suggest that.Are you seeing the G.I doc. before tests ? A sigmoidoscopy,a small flexi camera inserted in the rectum,will look at the lower large bowel to see if there's inflammation,and a colonoscopy can investigate higher up.Neither of them are anything to worry about and are the best way to investigate problems.The doctor will discuss with you which meds.will best suit your problem.But it's usually trial and error.What works for one person is useless for others.I hope you get seen to quickly.Being in the UK,it can take an age,but it might be quicker up north.Try not to worry.You're not alone.There's plenty of us here to give you support and advice.Feel better soon and keep us updated.

 

[Lady Organic]

yes there is probability this is Crohns or Ulcerative colitis. when is your appointment with gastro-enterologist? I hope soon. Dont be shy to go to the Emergency if you feel you have too much pain or increasing symptoms. Sometimes this is the way to see a GI faster. If you go to the ER , make sure the hospital has a gastro-enterology department. I regret waiting too long before seeking help before my diagnosis and bloody-mucus diarrhea escalated really bad and pretty fast. They 'll most likely run blood tests and will want to do a colonoscopy and prolly some other imaging tests.

 

[GlasgowGirl86]

Thanks for the replies.
I'm getting bloods taken tomorrow at my local health centre and results will take about 5 days to come back. My GP did request a faecal calprotectin however the lab refused to do it because apparently it has to be requested by a consultant. I haven't really been told anything other than I have to wait for my appointment with colorectal services. I have thought about just turning up at A&E to be admitted and get all the tests done quicker but my GP said the waiting list isn't very long so I should hopefully be seen at the hospital soon.
Feeling quite isolated at the moment. I've been signed off sick from work and on my last attempt to go out with a friend I ended up in a public toilet with a very upset stomach, not ideal!

 

[UnXmas]

A&E won't help, that's not what they're there for, they won't admit you or even test you if you're not at immediate risk. (Though if you do develop symptoms that indicate an emergency, that's another matter.)

Unfortunately waiting for tests and appointments is the only way. Keep going, hopefully you'll get a better idea of things once you have a consultant involved.

 

[GlasgowGirl86]

Got a letter through today saying I've to phone and make an appointment for a colonoscopy. I'm happy things are moving along so quickly but is it normal to go straight for a colonoscopy without seeing a GI doctor first? Also I've had really swollen sore gums recently. I've never had any issues with this sort of thing before, could this be related to IBD?

 

[Honey]

Hi there, and welcome,
I hope all goes well for you, it takes time to get a diagnosis. Yes, it is normal to be sent for a colonoscopy and the results to go to your G.P. Your Doctor then will discuss the results with you and further treatment will be recommended. You will be referred to a Consultant if Meds fail to resolve your problems. Best wishes, I hope you feel better soon.:
::welcome::rosette1:

 

[Lady Organic]

My dentists once told me this is not unusual to see gingivitis problem in IBD patients and weak gums. I have a family history of weak gums, so I must take really good care of them, but they have never hurt or have been swollen as you describe. I believe chances are good when you get treated for your GI symptoms, the gum issues will resolve as well. Mention this issue to the GI who will perform the colonoscopy.

 

[UnXmas]

Got a letter through today saying I've to phone and make an appointment for a colonoscopy. I'm happy things are moving along so quickly but is it normal to go straight for a colonoscopy without seeing a GI doctor first?

I've always seen a consultant before having any tests. Not just with digestive problems either, I see a lot of consultants and surgeons for various things and it's always been that way round I think (and I'm in the UK so this is also NHS and same healthcare system as you). But maybe it varies depending on the situation.

 

[shamrock15]

I had my original scope, barium enema and a small bowel follow through before seeing my GI for the first time.

I also have weak gums - had gum grafts done before and will likely need to have them done again due to recession. I seem to be prone to infection in one area of my mouth and have been since I was a kid. Now I use mouth wash as soon as I suspect anything is going on there. I don't use it all the time because of tooth sensitivity and I don't want my protection to be removed.

Hope all goes well for you.

 

[GlasgowGirl86]

Thank you everyone for your replies.
UnXmas not sure where in the UK you are but I know NHS Scotland can differ from NHS England however I've had urological issues in the past and have always seen a consultant beforehand to discuss treatment/surgical options.
I've to phone tomorrow morning to book in for my colonoscopy so I will let you all know how I get on.

 

[GlasgowGirl86]

Also does anyone have any tips on how to ease the pain I have in my lower right abdomen most of the time? My GP told me just to take paracetamol and I'm covered in hot water bottles (which my cats are loving because I'm a static source of heat for them) but it's not doing much for the pain.

 

[UnXmas]

Yes, I think the NHS does vary on a lot of things depending where you are.

Painkillers can be difficult with bowel problems; ibuprofen irritates the stomach, and opioids like codeine can slow the digestive system - not what you want when you have to clear your system for a colonoscopy, but once the test is done you'll have more options. You may find certain types of foods make the pain worse. Have you noticed what you eat making any difference?

 

[GlasgowGirl86]

I learned the hard way not to take ibuprofen as I took it recently for some muscular back pain and my insides felt like they were on fire! I find it's not what I eat but the amount that I eat that affects the level of pain. If I eat nothing the pain just about goes away but if I eat a big meal I get bad cramping pain in my lower right abdomen and loose stools.

 

[24601]

Hang in there! It does sound like you are doing all you can for pain right now until you get a diagnosis. Hopefully the testing will be done soon and you can start treatment.

Feeling that I need to stop eating to make the pain go away is certainly something that I've experienced with Crohn's but as everyone has said I don't want to offer advice until you have that diagnosis. Sending you my support though. You're not alone though I know it can feel like that.:ghug:

 

[GlasgowGirl86]

Thank you for your support 24601 I will find out tomorrow when my colonoscopy appointment will be.
I've thankfully not had diarrhoea for a week now however I often get this feeling of pressure that makes me think I need to go to the toilet urgently however there isn't actually anything there to come out. Has anyone else experienced this?

 

[GlasgowGirl86]

I have an appointment for a colonoscopy on 1st April and getting blood results back tomorrow. Hopefully will be getting some answers soon!

 

[GlasgowGirl86]

All my bloods came back normal. I'm relieved but also a bit confused as to how I can feel so terrible but all my results be normal. Feel like a bit of a fraud :S

 

[UnXmas]

You're not a fraud. Your symptoms are just as bad as they were before you knew the test result. A lot of people have been in a situation where their objective test results don't match the severity of their symptoms. Many people here (including me) have felt the confusion you feel when you want a test result to be positive and show there's something wrong. It's the natural way to feel when you're already getting symptoms and know you're sick and you just want that validated with test results, and the chance of effective treatment that may come if you have a diagnosis.

You can still get these things; there are other tests to run and there are all sorts of potential treatments, some of which may not even need a diagnosis in order for them to work. The most important thing is to make sure any doctors you see are ones who don't dismiss you if tests are normal. Some may - though not just over one blood test, I think most doctors would do more testing than that, you can have IBD and many other illnesses with normal blood tests - but many won't and will keep trying to find out how to help you.

 

[GlasgowGirl86]

Next step is the colonoscopy so hopefully will get some answers from that but looking at other people's stories it looks like that might not be too helpful either.
I'm signed off sick from work at the moment however my sick pay runs out soon, totally stressing out! I'm in a job where I can't run off to the toilet if I need to and I feel waaay too tired to be doing the 12 hour shifts I do. The waiting for tests etc. is so frustrating!

 

[UnXmas]

Next step is the colonoscopy so hopefully will get some answers from that but looking at other people's stories it looks like that might not be too helpful either.
I'm signed off sick from work at the moment however my sick pay runs out soon, totally stressing out! I'm in a job where I can't run off to the toilet if I need to and I feel waaay too tired to be doing the 12 hour shifts I do. The waiting for tests etc. is so frustrating!

Whether or not you have a diagnosis shouldn't make a difference to any benefits/sick pay you're entitled to. Make sure you have records showing how long your symptoms have been going on for. Have you spoken about it with your employers? Is there any way bathroom access could be arranged?

I haven't ever had to take time off for illness (I've always been too ill to work other than uni and then post grad), but I get PIP, which is a benefit for people who need help with getting around and help with personal care. It's different from the kind of benefits you may be entitled to if this carries on a bit longer for you, but I think it must work along similar lines - with PIP I was assessed according to what I'm capable of doing, not by the name of my illness or even any test results.
When I was at university, I was given extra bathroom time during exams; generally, employers and other organisations have to make "reasonable adjustments" to cater for people with disabilities or illness. Extra bathroom time was classed as reasonable, so the university provided it. (Whereas, if for example, you were so tired that it would be dangerous for you to do your work, no reasonable adjustment could be made to accommodate that, so your employer should refuse to let you work, but you would probably be entitled to benefits instead.)

 

[GlasgowGirl86]

I work as a nurse in intensive care so it's not that bathroom access can't be arranged, it's that I have a really sick patient to look after and can't always up and leave if and when I need to. I'm probably deemed "unfit for practice" at the moment. I've only been a nurse for 5 months and I've got my dream job, would really be heartbreaking if I had to give it all up.