Not yet diagnosed, but feel isolated

[Brizzle]

Good morning everyone.

What a great and informative site

I have not yet been diagnosed with Crohn's or anything else for that matter, but I have been having a little look around this wonderful site and could really do with some support. (Not saying my family aren't supportive but I'm starting to feel that if I keep going on about my symptoms and how they make me feel - it'll start to sound like I'm whinging!!) I suppose I just need to let it all out with people who can understand and relate. Below is my story.

About 2 years ago I started having an urgency to get to the toilet as soon as possible (at least 4 times a day). I was under a lot of pressure and stress at work and had already had a lot of time off because of this, (being treated for depression) so I put my symptoms down to this.
None of it got any better and last year I ended up leaving my job of ten years. My depression started to ease a bit once I left, but my toilet habits didn't and one day whilst I was in a strange area miles from home, I had an accident as I didn't find a toilet in time. Needless to say I was more than embarrassed and my daughter had to get a taxi to me with clean clothes - I don't know what I would have done if she had been at college that day

I tried to mention it to my GP on several occasions, but always bottled out because I felt ashamed. Then I nearly had another accident and decided enough was enough. I had a bit of a temperature and a urine infection, so my GP said this was the reason and gave me antibiotics. 6 months later I'm back as the symptoms hadn't gone away and now I was extremely tired, was aching all over and generally felt like death warmed up.

I saw a different GP this time and as soon as I told her my symptoms she mentioned IBD, more specifically Crohn's. She took my temp, which was again quite high, and did another urine test, and although that showed I didn't have an infection, it showed a high amount of whatever it is that fights infection which could lead to an infection!! (confused much)

She ordered blood tests to rule out other problems, gave me some painkillers and told me to go back the following week for the results. Before I had the chance the to go back I got a Perianal abscess Which I had to go to hospital and have drained.

Blood tests all fine, I have been given Codeine to relieve the urgency, but now I feel like I have trapped wind . I'm still achy and tired but have an appointment at the Colorectal Surgery department at the end of Jan, so will finally (hopefully) have some answers.

Like I say, I haven't been diagnosed with Crohn's but everything seems to be pointing toward it, and in a way it's a relief to know that it's not just a 'getting older' thing which I also thought as I'm 40 . At least now I don't feel like I'm going mad.

Anyway thank you for taking the time to read. It feels so good to finally let it all out.

Brizzle

Site Team, please move if I've posted in the wrong place, as I've just discovered the un-diagnosed forum :duh:

 

[DAVID KINGHAM]

CHIN UP!.My bloods have never shown crohn's and i've had 2 major ops because of it.A top and tail should give you a definitive answer as that's how i found out.Hope you start feeling better soon.

 

[afidz]

Hi Bizzie and welcome to the site!!!
You did not post in the wrong place, the "Your story" sub forum is where you go to introduce yourself when you first join, but definitely take a look at the un-diagnosed club and share your thoughts there as well. It gets hard to talk to your family about the symptoms of the disease so your in the right place!!
Have you had any CT scans or scopes done yet?
One thing you might find helpful is changing your diet, A lot of people in active flares stick to a low residue diet, however everyone is different. I know of a lot of people on this site keep a food diary to see what makes them sick and what doesn't so that might be a great starting point for you as well.
I wish you well, good luck with the appointment and keep us updated on how your feeling! We are always here to listen.

 

[Beach bum]

Hi there,
I understand the awful waiting and not knowing feeling that you are going through. It took me at a good 8 months to get to see a proper Gastro Doc and get a diagnosis ( funny thing was he diagnosed me in about 5 mins of me finally meeting him) And in the meantime I got a bit worried about moaning to my family and what not, but really I think they like to be kept in the loop (although at one point my sister did ask me "Are you sure its not something , you know, mental ?" - she didn't mean it unkindly).
As afidz has said , the low residue diet is definitely worth a try to see if it helps symptoms while you wait and I would try some probiotics as well especially as you have been on antibiotics.

Good luck , hope you get your answers soon.

 

[Brizzle]

Hi,

Thanks for the welcome, replies and tips.

I haven't had anything done other than blood tests (which as I say came back normal) I've tried varying my diet, but it does not change the cow pat consistency of my movements. I don't get any abdominal pain so to speak, just a lot of gurgling and rumbling which can feel slightly uncomfortable and again this doesn't change with diet?

The food diary is a good idea and I might try and give that a go, in case it throws light on something I haven't noticed.

I understand what you mean Beach Bum about family wanting to be kept up to date, I think it's because tests so far have been normal and I do not yet have a medical name for my condition, that I feel that my family may think I'm making it up for sympathy - although that's probably just the paranoia I started suffering from when things started going terribly wrong at work.

I'm so grateful that whatever the outcome I now have somewhere where I can get advice and support without having to bore my family with it all of the time.

Thanks again

Brizzle

 

[Brizzle]

Hi everyone,

Well a couple of months (nearly) since I last posted, and I'm still none the wiser on any diagnosis!
I've varied my diet, cut down smoking (not a bad thing I know) and completely cut out alcohol.
I've been back to my GP as the tiredness and achy feeling seem to be worse, she's told me that as I've already made the diet changes etc, if I still feel the same next week, I should go and have more blood tested - Oh joy. (There cant be much more to test for!!)

I also had my appointment with the Colorectal Surgery Service today, and was hoping to get some sort of answer, but the consultant didn't shed any light at all, just said I would receive a letter in the post in due course for an appointment for a colonoscopy and biopsy.

So the suffering and journey of not knowing continue.....

I'm so fed up.

Brizzle

 

[Grumbletum]

Hi Brizzie
It can be so upsetting and frustrating going through the diagnosis process Unfortunately, many of us here know exactly how you are feeling. It's good that you have the colonoscopy scheduled. Have your diet changes etc made any difference to your stomach symptoms?
Hang in there x

 

[Brizzle]

Hi Grumbletum,

The diet changes have not made the slightest bit of difference apart from colour and smell, I tried cutting out dairy stuff, starchy stuff, wheat filled stuff..... no difference, ate more fruit & veg then ever before, even trying veg I've not liked the look/taste of over the years.......no difference. I actually thought cutting out the alcohol would make a change, but having none at all is having just the same effect.

I've started keeping a check of how many times I'm going a day, and I didn't really notice until I started doing that, that four days out of the past 16 I went 7 times a day!!! I couldn't believe it, I thought the most was about four. It seems to becoming as routine as putting the kettle on and not realising how many cups of tea I've had until I see all the teabags lol

Thanks for your post by the way, it's nice just to know I'm not alone (I always feel bad when I say/think this but I'm so glad I'm not the only one through this, obviously for the reason of understanding NOT cos I'm a heartless moo who wants others to suffer lol.)

We'll all get there in the end I suppose

Brizzle

 

[Beach bum]

I know it might not feel like it but getting on the list for a colonoscopy means things are finally moving along, hang in there.

I try to follow a low fibre diet which means less fruit and veg not more - eating more could actually be making you worse I am afraid.

 

[UnXmas]

Hi, sorry you're feeling bad and struggling to get diagnosed. It's so common for Crohn's to take a while to get diagnosed - hang in there because you will get more answers sooner or later.


I just wanted to reply regarding having accidents. I know how much it can impact on your life, but if you can bring yourself to discuss it with your doctors (if you haven't already) they should be able to help you. They can either treat the actual cause or help by managing it with the right continence products. If it's happening because you're simply not able to get to the toilet in time there are anti-diarrhoea medications which can really help. If there's a specific problem which is responsible there is usually treatment available - I had a rectal prolapse which caused incontinence which was corrected with minor surgery. Hopefully this hasn't become a regular occurance for you, but if it has, you're not alone, and you will be able to find ways to stop it impacting your life.


Crohn's is often mentioned early on by doctors as a possible cause of digestive symptoms because it's one of the most common bowel conditions. The colonoscopy and biopsy results should get you a lot further forward, whether you have Crohn's or something else. Doctors don't seem to like to suggest possible diagnoses until they've got test results showing something definitive, which is probably why your consultant didn't have any answers for you. It's very frustrating but they never seem to want to speculate! But every test will at the very least rule things out and get you a bit further forward.

 

[Brizzle]

Thanks everyone for your support.

When I was coming back from the hospital, I knew once I got home and could get on this forum I wouldn't feel so bad, it's just that the appointment seemed to take so long to come around, and January being a rubbish, long, stressful, cold (you know what I mean) month, and then getting soaked to the bone after my brolly blew inside out and broke, rushing to the hosp because the buses were messed up. To get there with 2 minutes spare just to be told their running 2 hours behind.....:ybatty: I just felt so disappointed not to hear something more substantial.

Feel much better now though, thanks to you all .

Beach Bum, thanks for the advice, makes sense about the fruit n veg, was just thinking along the 'it's good for you' line.

UnXmas, again, thanks for the advice. My GP has advised over the counter stuff (which doesn't really help much), the consultant said today that after the further investigation if it's nothing serious they can prescribe tabs to stop the urgency. Nothing's been mentioned about incontinence products, but that's maybe because it's been more near misses than actual messes, and I now carry everywhere my emergency 'Get clean quick kit' in a lovely large shoulder bag bought especially for 'my kit' by my girls for Christmas, so getting support there too.

I can see the light at the end of the tunnel, but it's great to have a whinge and get loads of advice and support.

Thanks again all

Brizzle

 

[Brizzle]

Afternoon all,

Received my colonoscopy appointment letter (was not expecting it that quick!!!) for 13 days time.

Brizzle

p.s It's weird that although I am dreading the procedure I am excited that I might finally (hopefully, fingers crossed) find out what's wrong.

 

[UnXmas]

Glad to hear you got the appointment. I think anyone who's had to suffer symptoms for any length of time without a diagnosis starts to wish for positive test results. It makes total sense that you'd rather know what's wrong - because you know something obviously is! - than be told it's all normal, which is less helpful.

I hope the colonoscopy goes well.

 

[Brizzle]

Afternoon all,

Had a normal colonoscopy result, and they've taken random biopsies to rule out Colitis. So another wait for a chance of some sort of diagnosis :facepalm:

I'm so frustrated but ever so grateful for this site, as I'm now convinced my family truly believe this is all in my head. They've not said as much but I can tell by the look on their faces. I've also got the pleasure next week of convincing ATOS that I'm not well, if my family don't believe me how am I meant to convince a organisation that suggest severely disabled people are fit for work?

I know it's probably just paranoia with my family, but ATOS..............

Thanks for listening to me guys, just getting it out of my head has lifted a weight off

Brizzle x