Advice appreciated before docs appointment

[Starnett]

Hi everyone!

My name is Andy and I'm a teaching assistant who works with children with Special Educational Needs. I've joined the forum to get some advice really. I've been having issues with my digestive system since I was 18 (I'm now 35). I'm now at my wits end with it all and could use some advice.

For years the docs have been saying I have IBS but I feel that this has been an easy diagnosis for them and each time I visit the GP now it's clear they just read my notes and dismiss me.

I started in 1999 with chronic diarrhoea, stomach pain and urgency. I was sent for a sigmoidoscopy which was clear and a barium X-ray which was also clear. I never got any diagnosis at this point.

Fast forward two years and the symptoms persisted intermittently and I was constantly trying to figure out if foods were causing it but could never clearly figure out which, despite food diaries etc. I never got any support from the GP. When I moved to Uni it got so bad that my campus doctor gave me a permanent sick note so I could miss any lectures when I felt ill. I had this for the full three years. He gave me the diagnosis of IBS but I never had any more tests for him to make this diagnosis.

To cut the story short, the symptoms continued until 2012 with many more GP visits in between, at which point I demanded to be referred to the hospital to see a specialist. When I saw him, he did no tests and again was judging me based on the IBS diagnosis from 2001. He looked at the food diary I had been taken and suggested that wheat / gluten may be a trigger or issue. On his advice, I cut all gluten from my diet. This did have a massive impact in my health and apart from the odd small flare up I was almost symptom free from July 2012 to July 2015.

In July 2015, it all started up again but even worse. I was having bouts of severe stomach pain, loose BMs but felt constipated and actually passed out with the pain on two occasions. I was seeing yellow floating BMs in between bouts of constipation. I saw a small amount of blood, but my GP said not to worry as I had a couple of haemorrhoids that could have caused it. In September 2015, I collapsed in the bathroom. I woke up to more severe pain then on managing to pass motions, I passed a large amount of dark red blood. I was sent to hospital by my GP that morning and admitted to an assessment ward. I was physically examined by a doctor, blood tests were taken but they discharged me the same day saying I should go to the GP if symptoms continued.

I was still bleeding for a week and felt awful. I was urgently referred for a colonoscopy, but my GP changed this to a sigmoidoscopy for some reason. This test came back normal. The test itself was excruciatingly painful, despite them telling me I should feel no pain, just discomfort. I have had two more bleeds, though not as severe, since then.

So today, I'm still in pain daily. I'm taking Colofac MR twice daily (for spasms) and amitriptyline 35mg daily for pain. Neither medication is fully working. I don't have loose BMs anymore but the pain persists and is getting worse. I wake up every night in pain as I can't lie on my front or back. A new one this week has been very sharp pain in my upper middle stomach when breathing in, which is worse after food and when I lie down. Also hurts a lot if it's pressed. I have also developed a perianal abscess which is recurrent. It has drained itself 4 times now. Two doses of high dose antibiotics have not cleared it up.

Sorry for the long post. I'm due to see my GP again on Wednesdsy morning and I'm just looking for advice on what to say to him. I really feel some further tests may be needed.

I appreciate any advice people can give.

Thanks

Andy

 

[Plittler]

Sorry to hear you've been having such a rough time! It's so frustrating when no one seems to be taking your symptoms seriously when there is obviously something not normal going on. All I can say is persevere and make sure they get to the bottom of what's going on.
I have a very similar story in that I am now 34 and had been suffering with symptoms for as long as you and just been fobbed off by gp's saying it was IBS, none of the meds helped, no certain food triggers I could pinpoint and my symptoms were getting worse and worse.
I eventually got referred last November and ended up with having an MRI, 2 colonoscopies (which I found extremely painful) and then ended up having part of my bowel removed in January and then being diagnosed with Crohn's.
It shouldn't be how it is but with the nhs you really have to kick them up the backside to get things done. Having had a major operation 8 weeks ago, I had a 2 minute phone call from the surgeon saying it was not cancer and just Crohn's!! and have not seen 1 person since even though I was supposed to have a follow up 6 weeks later.
Good luck and I hope you get some answers soon!

 

[ronroush7]

It is awful the treatment you have been getting. I agree with the post above. Keep pushing until you get answers. Let us know.

 

[Starnett]

So sorry to hear what you've been through Plittler, that sounds awful. Glad you finally got an answer though that should have happened much sooner.

I think you are right about the NHS. It's a wonderful thing if you need emergency treatment or if you have an easy to diagnose illness where symptoms are more obvious.

I just think GPs are under so much pressure to save money now that they no longer have the ability to send people for tests when they need them. In the meantime it's us patients who suffer.

I'm going to tell the doctor I want to be referred for tests to be done and if he refuses I will have to leave the surgery as none of them will listen to me.

I'm just wondering really what to say. If you even mention any medical conditions they treat you like you're a self diagnosing nut case. The last doctor I saw made me feel awful. When I asked if she agreed with my doctors IBS diagnosis, she just gave me a puzzled look and said 'why, what do you think you've got?'.

Needless to say I won't be seeing her again...

 

[Plittler]

Yes the nhs is great at times and I have seen some great doctors and I agree they are all under a lot of pressure to save money and don't get enough time to see each patient properly. I would just try and ask for a gastro referral and not specifically mention any conditions. I am a vet nurse myself and terrible at self diagnosis but you know your own body and know when something is not right. You are not claiming to be an expert but those symptoms are not normal. I was told by my that you do not have inflammation if it's just IBS. You could really do with a colonoscopy, manageable with sedation and good gulps of gas and air

 

[stylinmama]

I don't know what NHS is but I have seen at least 15 GPs and 4 specialists. I don't take no for answer. If they get snooty with me I move onto another. My health doesn't have time for their BS. If I were you I would be seeing someone and demanding a colonsocopy with biopsy and I would go from doctor to doctor until someone agreed to do it. If that meant seeing a whole new doctor in a whole new office and lying and saying I didn't have a diagnosis, then so be it!

 

[Starnett]

Thanks for the advice. The NHS is our National Health Service here in the UK. It has its advantages but it's disadvantage is limited choice of GP that you see. Generally, there are 2-3 surgeries / offices that serve an area, each with about 5-10 GPs working there. You can only seek help from those in your area. The problem comes with the fact that you have a central health record that always moves with you when to go from one surgery to another so they can see your whole medical history.

I have been registered at 3 different surgeries over the last 20 years (as I've moved home) and have seen many GPs in this time. Almost all of them have just written me off because of that initial 'diagnosis' the GP at my university made - despite him carrying out no investigations.

My symptoms continue to worsen, impacting my quality of life, yet they just don't seem to listen. I am going in with a firm stance next week and will ask them to refer me to the hospital for full investigations.

I was wondering if anyone has been diagnosed with Crohns or have had inflammation despite having normal blood tests? My GP always says my bloods are normal, though I've never seen any of these results.

 

[ShellK]

Are you able to get copies of your blood results? I have only ever had one dr ever ask me if I wanted a copy. Recently I decided I wanted to see the results of my most recent ones (I had had 3 lots done in about 4 months) so I requested them from the pathology lab. Not sure about the UK (I'm in Australia) but here we have a right to our results.

 

[Jennifer]

Hi Starnett and welcome to the forum! I'm sorry to hear that you aren't feeling well but I hope that we'll be able to help you through this.

I'm going to tag valleysangel92 to see if she has any suggestions on how to go about getting a colonoscopy with biopsies and an upper endoscopy in the UK as I know things are different out there. You need these tests done to get a proper diagnosis and to find out exactly where the blood loss is coming from. It also sounds like you don't have a specialist and mainly report to your general practitioner is that right?

With IBS you won't have any blood loss so you definitely need further testing. Many members have normal blood work results. I wonder if you could request a stool test that checks for intestinal inflammation (the fecal calprotectin) and also request at the very least a small bowel follow through and see if they'll go for a abdominal CT scan or MRI with contrast.

Definitely request your blood work results if possible. If your doctor won't give you a copy then you should be able to get a copy from the lab. Here in the US sometimes you have to pay for your records but when I get my lab work done they ask me if I want the results to be sent to any other doctors or if I would like a copy as well, so I have them send me a copy every time.

 

[Plittler]

How did you get on with your gp today?

 

[Starnett]

How did you get on with your gp today?

Hi,

Thanks for asking and checking back with me. It was a frustrating visit but I have stood my ground for the first time in years and managed to get a referral.

He examined me and confirmed this recent sharp pain is located in my stomach. My GP was concerned about the pain I've been in and the fact I've seen more blood but not enough to refer me. He said he thinks it is IBS as all my blood tests indicate that there is no inflammation.

I was firm and polite and said that he is entitled to his professional opinion but that it is my body and my health and that I feel this needs to be decided by a specialist in the field. I also pointed out to him that passing blood is not a symptom of IBS and that blood results can come back normal and inflammation could still be present.

He was going to refer me to my local hospital but I explained what happened last time I went there and he agreed to let me choose another.

He has also prescribed me a two week course of antibiotics in the hope that will clear up the abscess, fingers crossed.

So I've got a bit of waiting to do now but I'm hopeful that things are now heading in the right direction, at least for getting some answers about my health.

Andy

 

[ronroush7]

Take probiotics with the antibiotic

 

[Starnett]

I will pick some up tomorrow! Thanks for the tip Thanks to you too Jennifer for the advice about tests. I will write this down and make sure I take it with me when I go to see the consultant

Andy

 

[Plittler]

That's good news, fingers crossed they take you seriously this time. If you haven't already I would write a diary of your symptoms and how it affects your day to day life. I don't know the results of my recent blood tests but around a year before my diagnosis my gp did bloods which were elevated for inflammation, so retested a couple of weeks later and they were normal again so yes you can get normal results and still have Crohn's.

 

[Eridon2002]

That's great Starnett! Hopefully you'll get some answers soon. You definitely need more tests than just a sigmoidoscopy. That only shows a small fraction of your colon. From the sound of your symptoms you should have a colonoscopy and upper endoscopy. Have them take biopsies since you may have microinflammation that isn't apparent

 

[valleysangel92]

Hello, I'm sorry I'm responding late, I've been away without my laptop and for some reason tag notifications don't work on my phone.

It seems like you've had some really good advice. Well done on being firm with your GP, I know it sometimes can be hard standing up to doctors and advocating for yourself so that's a great start.

The waiting lists can be quite long for consulatants, I know mine has patients who wait up to a year to be seen, so don't be surprised if its a while before you hear anything from the hospital. In the mean time, keep a track of your symptoms, record your pain levels (score between 1 and 10) and make a note of any particular foods or activities that you feel make your symptoms increase. This will all help you when you get to the specialist appointment. You may need to be firm there too, services are over stretched and sometimes appointments are rushed because they have so many people to see, so you need to be strong with them to make sure you get things across to them.

I live in south wales, so there are some things that will be slightly different, but in general I should be able to help guide you through the process, so please feel free to pm me if you need to.

 

[Starnett]

Thanks for the support, I really appreciate it. Funnily enough I received a text message this morning to ask me to call the appointments line to book my appointment. Having said that, I am imagining that there may be a long wait to see someone.

I will do what you said about the symptoms etc. I am going to write a brief history of things down, with a list of symptoms, and then I will begin to record symptoms, pain etc in a daily basis.

 

[Starnett]

Well I've got my appointment now. Seeing a Mr Robinson on Friday 17th June, so 10 weeks from now. For the NHS I guess that wait isn't too bad. He is based at Salford Royal Hospital.

In the meantime, I've written some notes on my symptom, tests and medication history and I'm going to keep a symptom diary from now until then.

My stomach pain has eased a bit this week and I've been sleeping better as a result. I know it will return, probably with a vengeance, but I'm enjoying it while it lasts

The abscess (or maybe fistula?!?) continues to be an intermittent pain in the...err....well bum :/ Four days into this two week course of antibiotics hasn't made a difference really.

Hope everyone else is keeping well and thanks so much for all the advice so far!!

Andy

 

[Plittler]

That's great news Andy, hopefully the next 10 weeks will fly by for you without too many problems.

 

[ronroush7]

Hoping the best

 

[Starnett]

Keeping my fingers crossed. Thanks for the support