Newbie, undiagnosed (sorry if this isn't the correct place)

[Jean_Wood]

Hi, I'm tearing my hair out and would like some advice, please

I have not been diagnosed (recently had an endoscopy which showed a hiatus hernia and inflamed stomach and I'm waiting on a stool and blood test result. I was just wondering if this sounds familiar to anybody. My symptoms are: extreme diarrhoea, now constipation, flesh blood and mucus in stool, also black stools, green stools, severe abdominal pain, outrageous and painful gas, unplanned weight loss, joint pain, fatigue, itchy eyes, sore lips, I had an incident after the extreme diarrhoea where I also vomited and ended up in a&e. I've been in a&e a few times this year.
I've also found out I have CIN3 cells in my cervix which I read is linked with IBD. I've had treatment and I'm just waiting on the all clear that it's not cancer.
I don't really know what I'm asking, just feeling a bit fed up. I've given up dancing at the moment and I had to defer my law finals. I'm about to start a new job too and I'm worried.
I'll be super grateful for any advice or stories shared.
Thanks x

 

[Cbanner]

I've been through near enough the same for the past 2 years, in and out of hospital, been admitted 6 times in the last 8 months and they kept me in at least a week each time, it does make you fed up as you just what to find out the cause and start medication to help. IBD can be hard to diagnose with some people and I'm one of those. I have had multiple test that come back negative although I'm currently in hospital now they believe they have found it, just waiting on the biopsy results. I can relate to how frustrating it really is and what impact it has on you life x

 

[fuzzy butterfly]

:welcome: jean, sorry your going through all this, it sounds similar to how i was two n half 3 yrs ago, but without the blood in poop !! i was diagnosed with crohns so it may well be that ?? iv had rough time in the past but touch wood, im doing well, have been for 18mths .... hope you get diagnosed soon and can start a treatment that works for you..:hug: and best wishes..

 

[buttER]

Hi Jean
It's tough but hang on in there! It helped me knowing that there were others in a similar situation. But it also depends so much on the doctors and their decision making. I hope you can be helped quickly. Stopping hobbies and work/study is probably sensible even if really hard to accept, that is something I really struggled with for a long time. You might have to find something else that is easier to accommodate (I gave up badminton but took up singing).

Good luck!

 

[Jean_Wood]

Thank you so much for your replies. I appreciate this so much!
I just went to get my blood results and stool sample results. The tested for coeliac (don't know why because I've tested negative to that twice now), thyroid, Liver, kidney, inflammation... Everything came back fine. The doctor also told me today that it's nothing serious because it's my first incident. I just sat there in disbelief because this has occurred for years. I don't get to see just 1 doctor, I end up seeing lots of different ones. When she asked why she was completing a note for my university explained all of the problems and she looked shocked when I told her about the black stools, fresh blood stools and mucus but she just told me to eat a high fiber diet whilst I'm constipated. That was all of the advice. I feel like I'm being stupid. Last night I barely slept because of pain, stupid painful gas and running to the toilet thinking I needed to go but couldn't. Bleurghhh. Sorry for the whinge. It's nice to hear people similar to me and actually being able to talk about poo! Hahaha.
X

 

[GlasgowGirl86]

Hi Jean I'm in exactly the same boat as you. I've had symptoms since February and results so far have been a bit dodgy but inconclusive. Strangely enough I recently had an abnormal smear test result, had a biopsy done and waiting on results so it does make you wonder if there's a relationship there. I'm having bother with constipation at the moment as well after months of loose stools. I found in the beginning it was helpful to keep a food diary to identify trigger foods and avoid them. The waiting time in between appointments can be so frustrating! I find phoning the consultants secretary and pestering them to be useful in speeding things up sometimes. It sounds like you definitely need further investigation such as a colonoscopy so I would get back onto your GP and ask for a referral.

 

[fuzzy butterfly]

Hi jean, sorry if this sounds harsh but its because the health systems drive my mad :mad2: I had to take myself to hospital with a packed case and tell them i wasnt leaving till i was sorted out !!! it worked by the way :thumleft: you really have to stand your ground with these people or you just suffer longer n longer.please just mither them till you get answers and the help you deserve :rosette2:

 

[Jean_Wood]

Thank you for your advice. I think I have a tendency to go in and almost downplay what's wrong with me because I feel erratic/annoying. I guess a quite British response. I'm going to register with a new doctor and I'm taking my mum with me because she was a nurse. I'm definitely going to start a food diary and stand my ground *nervous*

 

[fuzzy butterfly]

aw jean dont be nervous hun, i used to be fobbed off easily once, but after all the pain i went through i finally flipped sides to being tough when it came to my health. I know its not easy to be tough if your normally quite / shy, but its the best thing i ever did, im so much better now after doing my turning up at the hospital with my case in tow. I wish you well and good luck on the being tougher, dont go rageing mad though .... lol..

 

[Bunty]

I sooo agree with Mandy, Jean, you really do have to steer your own course with all this, your health is too important to wait around for other people.
Something someone once said to me is..how do you expect a doctor to do the right thing for you if you're not telling the whole story? It's the only thing a doctor has to go on, what you tell him/her, so tell it like it is, in graphic detail!!! Never play it down, it's self defeating.
Good luck,
Bunty x

 

[fuzzy butterfly]

and i agree with Bunty... its got to be done sometimes to get the help we all need..

 

[Jean_Wood]

Thank you for your replies. It's helped so much. I have just been to see a very kind nurse and doctor who listened to everything and they have booked me in with a specialist and also for a colonoscopy. It was so nice to feel heard and not feel like a waste of time x

 

[GlasgowGirl86]

That's fantastic news! Glad you found a doctor who takes you seriously and I hope you get some answers soon.

 

[fuzzy butterfly]

Aw jean thats great news, i bet you feel better for that hun, im so pleased someone is finaly listening and getting things moving for you, wishing you all the best going forward, may you finaly be getting the best of treatment, that you deserve, x