Wellen's false-surgery faux pas

[wellen1981]

Reading all the different posts by everyone here just makes it all the more harder for me to know when to yield and give in to surgery/trip to hospital.

I am getting constant burning sensation in my left eye and it is often bloodshot everyday as of about 5 days ago.
Have had headaches just on the left behind my eye over the past week (and i never get headaches generally to be honest)
Having checked after a motion, I can see from the shape just how narrow things must be inside me currently (approx 4-6mm at its most narrow).

Having issues with fluids eg feeling very dry/dehydrated inside
eg at various points through the day (I am drinking at least a 250ml cup of water every hour), feeling like my throat and onwards is very dry - best way i could describe it is how you feel dehydrated after a good night out drinking and you forgot to drink that pint of water before bed!

My pee is very dark and remaining non clear every day despite the fact i am drinking fluids often every day.

I am worried that I may be offering myself to the hospital to perform surgery as I only would have surgery if I really have no choice.

But then I am possibly being stubborn resisting going to hospital to get checked.

And finally, I am feeling not very good inside currently and things are different for sure, we know our body best and we know when we have different symptoms - but still I wonder am I judging these symptoms wrong and considering a visit to hosp incorrectly?

All you surgery peeps can you talk some sense to me as i am so 'on the fence' that I'm really not sure what direction to go in and I feel like if i go to hospital they will just do what they like and that worries me big time - i would hate to have surgery and bits removed if there wasnt need to operate - eg would a hosptial ER/A&E actually be checking eg running tests and proving to me that i need surgery etc? or would they just act quickly on their own judgement without discussing things with me?

I honestly feel like my crohn's has me cornered currently.

Thanks for reading and if i do end up in surgery i will just use this post of mine to detail how it was for me (sorry my post currently is not quite on-topic)

:quack:

 

[UnXmas]

wellen - you mention a few different symptoms: what makes you think they will require surgery? What type of surgery are you feeling you may need? What problem would the surgery be fixing? Has a doctor suggested surgery to you?

A&E will rush you through tests and surgery if you needed it right now, this instant, for example, if your bowel just perforated, but that doesn't sound like the situation you are in. The most likely symptoms you report that may require emergency treatment would be the dehydration and headache. At A&E they would most likely address this by giving you fluids, and may run tests to find the cause of the headache. If the fluids stabilise you, and they find no serious cause of the headache, they would most likely then discharge you and recommend you follow up as an out-patient; they would admit you for further tests and treatment only if they couldn't rehydrate you adequately or if they suspected an urgent condition causing the headache. Narrow stool would indicate an emergency if your bowel actually blocks. Is there any reason you think the dehydration or headache would require surgery?

When did you last see a gastroenterologist or other consultant? You have various symptoms which are concerning. Book an appointment with your consultant(s); they can arrange tests to diagnose the causes of these symptoms and/or assess them, then they will discuss your treatment options, which may or may not include surgery. If surgery is recommended, you will be referred to a surgeon (if the consultant you already see is not a surgeon). If you are not already under the care of a consultant, or not under the care of one who is specialised in the area which covers your current issues, see your GP. That would probably be a good place to start anyway; ask your GP if you need treatment urgently or if it's safe for you to wait for a routine appointment. You won't be forced to have surgery, you are always asked to sign a consent form before surgery (unless it is an emergency and you are not conscious. If you're a minor, a parent/guardian will be asked to sign). If you feel pressurised into or unsure about surgery at any point, you can ask for a second opinion (or third, or more) from other doctors. Before any non-emergency surgery, you go through a process of pre-op assessments, tests, maybe meetings with anaesthetists, etc.

Go to A&E about the dehydration and headache. (Or if one of the other symptoms suddenly worsens or others develop, e.g. if other symptoms result from the narrowed intestine, such as pain, vomiting, inability to pass stool). See your GP about the other symptoms - get an urgent GP appointment if you can. If there is a long wait for a GP appointment, you could go to A&E about the narrow stool. Don't worry about surgery unless/until a doctor suggests it.

 

[wellen1981]

wellen - you mention a few different symptoms: what makes you think they will require surgery? What type of surgery are you feeling you may need? What problem would the surgery be fixing? Has a doctor suggested surgery to you?

A&E will rush you through tests and surgery if you needed it right now, this instant, for example, if your bowel just perforated, but that doesn't sound like the situation you are in. The most likely symptoms you report that may require emergency treatment would be the dehydration and headache. At A&E they would most likely address this by giving you fluids, and may run tests to find the cause of the headache. If the fluids stabilise you, and they find no serious cause of the headache, they would most likely then discharge you and recommend you follow up as an out-patient; they would admit you for further tests and treatment only if they couldn't rehydrate you adequately or if they suspected an urgent condition causing the headache. Narrow stool would indicate an emergency if your bowel actually blocks. Is there any reason you think the dehydration or headache would require surgery?

When did you last see a gastroenterologist or other consultant? You have various symptoms which are concerning. Book an appointment with your consultant(s); they can arrange tests to diagnose the causes of these symptoms and/or assess them, then they will discuss your treatment options, which may or may not include surgery. If surgery is recommended, you will be referred to a surgeon (if the consultant you already see is not a surgeon). If you are not already under the care of a consultant, or not under the care of one who is specialised in the area which covers your current issues, see your GP. That would probably be a good place to start anyway; ask your GP if you need treatment urgently or if it's safe for you to wait for a routine appointment. You won't be forced to have surgery, you are always asked to sign a consent form before surgery (unless it is an emergency and you are not conscious. If you're a minor, a parent/guardian will be asked to sign). If you feel pressurised into or unsure about surgery at any point, you can ask for a second opinion (or third, or more) from other doctors. Before any non-emergency surgery, you go through a process of pre-op assessments, tests, maybe meetings with anaesthetists, etc.

Go to A&E about the dehydration and headache. (Or if one of the other symptoms suddenly worsens or others develop, e.g. if other symptoms result from the narrowed intestine, such as pain, vomiting, inability to pass stool). See your GP about the other symptoms - get an urgent GP appointment if you can. If there is a long wait for a GP appointment, you could go to A&E about the narrow stool. Don't worry about surgery unless/until a doctor suggests it.

Only reason I am mentioning the other symptoms eg eye, headache, feeling very dry inside is in case anyone else who had to have surgery for blockages/narrowing could possibly advise me if these were possibly early warning signs that the situation has changed for me internally in my guts and i wondered if these other symptoms left eye and head could be indicators that the narrowing has got worse to the point i need to give in and take myself off to A & E (just for the sake of clarity, I was diag after an mri and flexsig and colonosc with crohn's terminal ileum in feb 2014 and had narrowing, fistulas and ulcers in that area. i have only been given a flex sig since then in july 2014 and since then my GI has let me down in my Oct appointment by having someone see me who had no info and no access to my info - this has caused me to make a complaint and so far the GI has not even attempted to speak to me despite my attempts at phone call and email requests)

I have the complaint underway and was supposed to be having an appointment with the GI on this Thursday coming and also another appointment on the 19th Feb - but I have had issues for the past week symptom-wise (gut related) and I am concerned that through their lack of care with me since july 2014 that i may be in need of checking and so far, the GI has been a liability through conduct.

As an example, as part of the complaint I made the request for the GI to be advised of anti-MAP therapy (this was done through mediation with the patient liason team at the hospital)...

I then had to wait 2 weeks for patient liason to get back to me with the response from my GI and the response to anti-MAP was no they dont know anything about it!

So that was 2 weeks after I had complained regarding other forms of treatment as a possible choice and they couldnt even be bothered to read up on it and then come back to me with a productive discussion regarding anti-MAP.

Am I the only one thinking GI's should keep on top of developments in their specialist field so that a patient has the best choices for treatment offered to them based on the GI knowing their field?

Also stumbled across a NICE document online last night that stated NHS have been advised regarding FMT and that NICE deem it viable... I never had discussions with GI about multiple options for treatment (eg fmt, anti-MAP) and this seems very wrong that they arent even keeping on top of what is going on regarding possible treatment developments.
I am not expecting them to be aware of very new ideas just recently theorised, but more expecting them to be aware of work done in the GI field that has been happening for years and is even being used to treat Crohn's sufferers today in the health care profession.
How can GI's not know about FMT and anti-MAP when the treatments are:
in the case of FMT, NICE approved (NICE approve treatments for use in the UK), and
in the case of anti-MAP not ruining bone density and actually having double the remission rates compared to steroids.

So now I find myself distrusting them a lot due to their incompetence in their basic handling of me on the Oct GI outpatient appointment but even more unbelievable is the lack of care displayed by them in not knowing treatment options for the condition and the fact that GI specialists (the whole dept in my hospitals case), don't even know what I was talking about when I mention anti-MAP and that is with them taking 2 weeks to come back to me regarding the therapy.

This leaves me feeling that I should just take myself down to A & E to basically say to them 'things are worse than normal in my guts, do the proper test procedures that should have been requested by my GI and then on the basis of those, what is the situation as i really dont feel right currently and if it is bad, what are my options given the current condition of my insides.

Hopefully this makes sense, and doesnt come across as too much of a rant.
I dont really know how else to summarise how things have been since coming back to england in april 2014 and being with this current GI.

No patient should know more regarding a specific condition than a specialist.

 

[UnXmas]

wellen - no matter how badly your doctors have treated you, A&E will only deal with emergencies: that's their purpose, they don't treat or diagnose on-going, chronic symptoms. They are not specialists, and will not advise you on treatment options. They will not do tests and procedures just because your doctor may have failed to do them.

Problems that need treatment immediately are the only reasons to go to A&E.

I still don't quite understand why you think surgery is going to result from this. Why would a headache relate to a narrowed intestine? Headache is a common symptom of dehydration - do you think that's what's causing yours? Headaches can be caused by any number of things, and no one on this forum can tell you what's causing yours, there are just too many possible causes. And how is the dehydration related? Are you eating and keeping food down? I can tell you from experience that if your intestine had blocked completely, to the point where you definitely would need to go to A&E, you would know about it! You wouldn't be wondering about headaches and complaints about doctors, you'd have too much abdominal pain to think about anything else. You may well be vomiting as well, and probably not passing any stool or only very watery stool. And you wouldn't go on for days in that situation.

If you are unhappy with your doctors, I would ask your GP to refer you elsewhere. When you've got to the point of having to issue a complaint about a doctor, you're not going to be able to continue being that doctor's patient. There must be trust between you and a doctor. You could also tell your GP your concerns about the narrowed intestine, ask whether you could have a partial blockage and whether you need treatment urgently.

Your idea of what A&E is and what they do is misconceived. Which is understandable, it's not as if we're taught about it! And your idea of surgery, and when it is needed or recommended for Crohn's, I think is misconceived as well. If you do require surgery to fix the narrowing, or, if not needed, if surgery is recommended as one possible treatment option, a doctor will tell you after assessing test results.

I think your best bet is to ask your GP for a referral to a different consultant. Tell the new consultant your symptoms and let him/her take it from there. And you can certainly raise the topic of surgery yourself and see whether the doctor thinks it may be applicable to you.

But do go to A&E if you feel the dehydration has got to the point of being dangerous. Dehydration, and having a new headache with no obvious cause, are worrying symptoms, I just don't see how they're relevant to the question of surgery, or even to the narrowed intestine. Do you have severe diarrhoea or vomiting at the moment? They are what would cause dehydration.

 

[wellen1981]

A&E will only deal with emergencies: that's their purpose. They are not specialists, and will not advise you on treatment options. They will not do tests and procedures that your doctor may have failed to do.

The role of A & E was never unclear to me, yet do you think I am going to ignore things getting worse healthwise?
My GI is at the same hospital and so far have only given reason for me not to trust them and they have just wasted time and time is one thing we dont have with this condition.

Problems that need treatment immediately are the only reasons to go to A&E.

It's not really our place as the patient to judge that though is it, eg blood clots can present as headache symptoms and catching those early is vital yet many people would follow your advice and not 'make a fuss' only to collapse and die - an extreme example but can be applied to most situations - better safe than sorry. Also the signs are there that something isnt right inside as i am drinking fluids yet still feeling dry inside and feel like my lower left side is closing up/narrow/causing obstructions. So far my GI has shown themselves to be incompetent so would you really expect someone to change GI's etc knowing how long processes take - also GI slots tend to be wait times of 3months approx.
Should I really take the risk with my health? Surely the sensible thing for me to do would be to try and catch whatever this is early and given the problem with my GI and the erosion of trust A&E is the only option i have left right now (dont forget this has been getting worse for the past 6-7 days now and doesnt seem to be going away).
Finally if it is narrowing etc to the point that something needs ot be done about it, what sense is there in me just ignoring it now and putting up with it even longer - it is only going to do more damage the longer it goes on and worse it gets. Even i have a duty of care to myself even if the GI doesnt follow the same stance.
I am not fixating on the headache symptoms but mention it to be complete regarding listing symptoms as to omit a symptom would potentially render advice less accurate - it is the new feeling in my gut over the past week that makes me realise something is wrong that may need attention.

I still don't quite understand why you think surgery is going to result from this. Why would a headache relate to a narrowed intestine? Headache is a common symptom of dehydration - do you think that's what's causing yours?

As I explained before, I never get headaches, this feeling is concentrated behind my left eye, my left eye is either slightly burning all day or at various points moderately burning and it keeps going from slightly bloodshot to more bloodshot in the day.
Given the fact you and I are not medically trained, it would be just as wrong for us to assume that the headache is related to my narrowed intestine as it would be for us to assume that it isnt.
I didn't say the headache related to the gut, I just presented the range of my current symptoms to canvas opinion with a view to seeing if any others who were observant during earlier stages before needing hospitalisation, could shed any light and understanding on if these other symptoms were related or not related to my main symptoms in the gut.
You and I guessing and assuming either side of the coin is dangerous as only someone here with experience/knowledge in observing deteriorating symptoms leading to the need for hospitalisation/surgery due to complications arising from Crohn's in the gut area, would be able to offer the insight needed to take the guesswork out of it.

If you are unhappy with your doctors, I would ask your GP to refer you elsewhere. When you've got to the point of having to issue a complaint about a doctor, you're not going to be able to continue being that doctor's patient. There must be trust between you and a doctor.

I was already in the process of doing this potentially but was trying to resolve things with current GI but they have been completely disinterested in being accountable for their conduct in October. My take on my current GI is they have let me down so far but I know it is worse to have to change GI's than to see if the GI will actually hold themselves accountable given a patient is unhappy with the handling so far, and that the GI should be inclined to put things right by addressing their patients concerns and if mistakes have been made, then either the GI should hold themselves accountable for this or someone above them should be doing so - I dont expect GI's to let patients down and just carry on as if handling them badly is acceptable.
I am very much ready to change GIs, possibly even hospitals if i had to, but they will be made accountable for their actions and as i have only just recently started things moving complaint-wise and they have not even acknowledged their mistakes and incompetence, it is getting closer to me giving up on them as they have not even tried to repair the trust lost so far.

This is why the healthcare profession is so shit as most patients are in vulnerable positions and when things do go wrong and mistakes are made either the dead tell no tales, or the weak and ill have to just panic and run to other hospitals to 'try' and get correctly treated with care.
The unaccountable culture works so well the profession due to patients not being in a strong enough position to exercise their rights to have decent healthcare.
Also once most people are on the mend and getting better, we are lazy by our nature and don't tend to pursue things as we only see the immediate, here-and-now issues, so we just accept the mistreatment and mistakes previously made up to getting better by the healthcare. This means it continues for the the next ill people and the service is never improving through standards being monitored and poor standards dealt with accordingly. It isnt just about them being told they make mistakes - they need to be made to learn from them so future patients get the benefit and this is something in the NHS at least, that doesnt happen the way it should.

Your idea of what A&E is and what they do is misconceived. Which is understandable, it's not as if we're taught about it! And your idea of surgery, and when it is needed or recommended for Crohn's, I think is misconceived as well. Your headache could have nothing to do with the narrowing of your intestine. If you do require surgery to fix the narrowing, or, if not needed, may be recommended as one possible treatment option, a doctor will tell you after assessing test results.

I think your best bet is to ask your GP for a referral to a different consultant. Tell the new consultant your symptoms and let him/her take it from there. And you can certainly raise the topic of surgery yourself and see whether the doctor thinks it may be applicable to you.

But do go to A&E if you feel the dehydration has got to the point of being dangerous.

Crohn's is one thing though, but complications due to crohn's is another.
To have a follow process and wait approach is not in my interest is it?
It would be 3 months wait if i changed to a diff GI right now. That is not a smart decision for my immediate health concerns.

I plan to admit myself in a few hours and let them investigate what the situation is as so far since feb 2014 - now (feb 2015), they dont even know what is actually the situation for me inside and feeling the way I do currently, 'better safe than sorry' is my attitude, given my GI has been so bad I dont really have any other action i can take right now in the immediate short term - and that is my main concern - we can wait symptoms out and follow process over months etc but i have done that and it has only allowed them to mishandle me to the point they havent even been checking he current state of my gut. With this condition left unmanaged things can only get worse over time.
It is for them to investigate and prove that I either need or dont need medical attention (or surgery) but it only affects me and i cant take the risk of continuing to be mishandled right now.

I hope you understand where I am coming from on these responses as I do very much appreciate your response and thoughts unxmas.
I just dont see it being in my interest to not act with my own well-being as a priority, compared to following the way they do things when so far they been incompetent so far and i have lost 9 months through the way they have handled me as a patient thus far.

I will be heading off in the next few hours and will post back once i know what the situation is.

Thanks again for responding to my concerns unxmas as without you posting i would have been still just as unsure.

 

[UnXmas]

It sounds like you've made your decision. Good luck, and I hope you get the care you need this time.

 

[Jennifer]

My guess is that you've already gone in wellen1981. What they will tend to do is run tests (usually blood work and a CT scan if they feel you may have a blockage but there are many other tests they could do as well) to find out what's going on. Unless you're unconscious, they will discuss the possibility of surgery IF it's needed. They should also give you IV fluids and if needed pain and nausea medication.

Based on your symptoms it sounds similar to active inflammation which IV steroids in the hospital may be able to help along with a steady course of medication once you leave the hospital (depending on what you're taking currently). You can always pursue other treatment options like the fecal transplant or anti MAP once your symptoms are better under control. It's best to avoid surgery as much as possible. Good luck!

 

[UnXmas]

Let us know how things are going when you can, wellen. While I hope they've not found anything too serious going on, it would be good if they've managed to identify the causes of your symptoms and get some treatment started.

 

[wellen1981]

Never before have I been so glad to get things wrong!

Last place I ever want to be is hospital, really wasn't sure what to do about 5-7 day persistant symptoms given the fact I have been relatively pain free for a while leading up to it.

Also it didnt help matters that over the weekend there is no support for me with this condition:

-GPs know little about the condition and point to GI dept at hospital,

-the emergency phone number here in UK 111 are literally not capable of fielding crohns calls (they were so busy they couldn't even get a nurse to call me back and a non-medically trained person just called me back 3hrs later to advise they were too busy currently and the chance of a nurse knowing about crohns was slim due to them coming from many random depts)

-that just left me with the ibd nurse helpline that the GI dept had supplied me with...
I rang the IBD nurse and as it was the weekend all it did was allow to leave a message and even said the weekend is not classed as working days so expect a callback by 2 working days... (so that's either tuesday or if classed as 2 working days clear could even be weds)

So not able to get any specific advice from anyone with specialist medical training for the condition and being concerned enough not to just 'put up with it' and ignore symptoms like i am used to.... A & E was the only option to try if i did need any attention.

I already knew that it wasnt the best idea given what A & E is for (and i didnt want to go either) but GPs don't do evenings and weekends and even my IBD nurse doesn't cover evenings or weekends (why dont they work shifts so evenings/weekends are also covered?). UK emergency helpline couldn't even provide someone for me to talk to either and actually said they are too busy/overwhelmed (so the system is badly managed/ran and under-resourced for the demand?)

Meanwhile I still didnt know what to do and the only support to be found by people with experience of the condition was even medical professionals but unxmas here on this forum...

Despite me moaning about previous handling with specialists I had already talked myself out of ignoring it and was planning to go to hospital.
I was hoping someone on here would manage to convince me and talk me out of it. Unxmas was clear on the reply but i was still not convinced so off i went the next day (this was monday btw).

Not knowing at all what to expect from A & E, I just planned to explain how the past week had been for me and also to ask them what i should do or if there is anything they can check or i can do, given how things were going nowhere slowly with specialists and after a week of symptoms (although i was only concerned about how my left side has felt) I was unsure what to do and had nowhere else to turn to over the weekend.

I sat and waited in A and E, got filtered through to first person explained things, then explained to 2nd person same again and after that a more senior person was called to speak with me.

I already knew going to A & E was a bad idea but I was in the mindset that I would go and however it panned out so-be-it.

I was expecting to be sent away.

End result i was discharged from A & E after a lengthy conversation with the senior member of medical staff.

I was very open to what he had to say and also explained my situation regarding having no other support mechanism in place to go to over the weekend and my symptoms had concerned me enough to not ignore them and try to act upon them with the only options I had over the weekend.

Moral of the story, if you are stuck on evenings and weekends unsure what to do, put up and suffer unless it is unbearable/immediately dangerous/life-threatening.
(Twice A & E asked me if i wanted painkillers despite me having already told them earlier when i was asked that i wasnt in pain at the exact time of the visit. I can only guess that they are very used to doing that so they are on autopilot and ask despite being told 0 pain)

I dont have the luxury of getting anywhere with the hospital gastro team as they arent even taking their mistakes seriously and trying to put them right by talking to me.

I am only currently speaking to the internal, informal complaints team (PALS) at the hospital as my specialist hasnt even had the decency to call me back or email me despite requests since october to do so.

I will thank unxmas again for the reply yesterday as without that post i would have had no other opinion on what someone else thought.

I am very much glad to have been wrong, sorry this is a ramble and hope it either provides a much needed chuckle for others (including you unxmas) or is actually helpful in providing insight into how not to go about things and more importantly not to let yourself get into such a vulnerable position whereby you have no reliable support mechanisms in place should things change and the condition concern the sufferer.

What I realise from the past 24hrs (or 8 days) is that i really need to quickly sort out the position of having a terrible GI and possibly a gastro dept at my hospital that cant even handle patient concerns acceptably when mistakes have been made without being given a formal complaint.

All i want is to be treated correctly by the people that should be treating me ie a GI.

I got back late last night and would you believe it, today the gut symptoms is easing off without any action whatsoever (just still very dry feeling inside including throat)

Begs the questions though - what the hell happened with me the past weekish?

Cheers

Little edit: I think half the problem is that due to mainly eating rice since july/aug last year i have been 'getting away with it painwise' for a while now and maybe that is making it harder for me to know what to do.

 

[UnXmas]

I'm glad it wasn't anything too serious, but it's so depressing to see how you were basically forced to go to A&E because of failings in the healthcare system; I do understand why you went, because you're having all these symptoms and no one's available to tell you what's wrong. I don't suppose the senior medical man you spoke with offered any insight into what might be behind your symptoms?

I hope you'll be able to get some better help very soon. (Personally, I'd be asking for a referral to a new gastroenterologist rather than wasting anymore time with your current one.)

Don't let this experience put you off going to A&E in the future if you feel you may need treatment urgently.

And I'm inclined to believe it is mandatory for everyone who goes to A&E to be offered painkillers - they probably hope people won't get so fed up waiting to be seen if they're in less pain (maybe less fed up still if they get them a little high on opioids).

 

[wellen1981]

I'm glad it wasn't anything too serious, but it's so depressing to see how you were basically forced to go to A&E because of failings in the healthcare system; I do understand why you went, because you're having all these symptoms and no one's available to tell you what's wrong. I don't suppose the senior medical man you spoke with offered any insight into what might be behind your symptoms?

I hope you'll be able to get some better help very soon. (Personally, I'd be asking for a referral to a new gastroenterologist rather than wasting anymore time with your current one.)

Don't let this experience put you off going to A&E in the future if you feel you may need treatment urgently.

And I'm inclined to believe it is mandatory for everyone who goes to A&E to be offered painkillers - they probably hope people won't get so fed up waiting to be seen if they're in less pain (maybe less fed up still if they get them a little high on opiods).

The senior guy said they had no expertise in the condition so couldnt even offer any insight and wouldnt like to guess (i appreciated and respected his honesty with me to be honest, even if it did mean they could not give me any help/advice/support there).

I tried to be fair to them and not waste their time given there were more serious immediate needs they needed to tend to in the dept obviously but i did have to get my point across to him and the guy who checked me over that i was only at A&E due to having nowhere else to turn to.

Yeah dont know what to make of the legal-heroine dispensing obsession! Maybe they have surplus ;o)

I will be changing GIs I am sure, but this week (Thursday) things are set up to finally see if I can trust current GI and dept to be capable going forward (I am meeting the manager of the gastro dept and my previous GI to be able to have my concerns and criticisms of the failings so far addressed and also to more importantly discuss more current, targeted treatments such as anti-MAP, SSI and FMT.

Not even sure if I will be able to continue at the same hospital to be honest.
It's a tricky decision to make as disruption can potentially set me back even longer - I am just trying to get them to act appropriately when handling patients so that I can continue to move forward with my condition in the hope I can try anti-MAP therapy somehow, somewhere but also I need a current assessment of the state of my insides as it hasn't been fully checked since oct 2013

EDIT: Have altered some of the above regarding tomorrows appointment at hospital gastro dept. Even if they cannot offer the therapy to me at my hospital i was told by the ibd nurse on the phone earlier that the hosptial i am at have links to kings college in london already, so here's hoping that allows for an easier route onto starting anti-MAP therapy soon!

I very much still plan to discuss why patients such as myself and other are not even advised of such other treatments and their attributes during our initial appointments as this is against patient interest to not allow us to make informed decisions about the range of treatments that exist if the gastro depts dont even tell us about all options for the condition.

No idea what will come of tomorrow but it really is my last hope to get things starting to move forward again.

:yoshijumpjoy:

 

[UnXmas]

If you do end up changing doctors/hospitals, it may be worth doing a bit of research online and seeing if you can find a doctor or hospital department that has experience with anti-MAP or any other treatment you're interested in. Usually consultants have biographies and lists of their special interests on the hospital's website. Usually GPs will oblige if you ask for a referral to a particular person. There are limits as you usually have to stick within the NHS trusts that cover your geographical location, but it's worth having a look.

I get what you mean about expecting your current GI to do a proper follow up and fulfilling his responsibilities though. And October 2013 is way too long for them to have let you go without proper tests. I really hope you can get this situation sorted out.

 

[wellen1981]

If you do end up changing doctors/hospitals, it may be worth doing a bit of research online and seeing if you can find a doctor or hospital department that has experience with anti-MAP or any other treatment you're interested in. Usually consultants have biographies and lists of their special interests on the hospital's website. Usually GPs will oblige if you ask for a referral to a particular person. There are limits as you usually have to stick within the NHS trusts that cover your geographical location, but it's worth having a look.

I get what you mean about expecting your current GI to do a proper follow up and fulfilling his responsibilities though. And October 2013 is way too long for them to have let you go without proper tests. I really hope you can get this situation sorted out.

As per my edit above - found out today that kings college london and my hospital are linked somehow according to the ibd nurse so that could be promising.

I am sure through the sheer amount of mainly rice i have been eating it must be looking a bit better in my guts compared to the colonoscopy check done in october 2013 when they found the extent of the damage going on inside me.

I still swear by my decision to go for white rice so much since july 2014. Within 5 days to a week of just white rice 2 years long extreme pain and discomfort was gone and then remained about a 1-3 out of 10 up until approx 10 days ago when things went very odd causing me to panic.

I really shouldnt be still posting in here as i am keeping it off topic so i wont post again in here but will add the outcome of tomorrow to the my story thread i made when i joined.

Thanks for the support