Resection with multiple other things going on

[saltimbanc0]

:sign0085:

Im not sure il type the whole story - too long.

Dx with Crohns at 14, on pred 30mg, azathioprine 100mg daily for 7 years - carried on training and representing my country as an athlete.
Came off pred (no taper - thanks GPS!) and had adrenal failure -never restarted. After 9 months was diagnosed with Addisons and put on hydrocortisone, life began again and i was able to train.
About 2.5 years ago symptoms came back and to avoid the high dose steroid long term i had a quick taper and was put on Humira, seemed to work for Crohns but had bad reactions with chest and skin problems, they resolved after a few months off but came back when we retried so no go. Had to drop the aza as well to allow my immune system to rid me of problems.
In this time my old GP told my health insurance the addisons wa related to the crohns so they wouldnt cover me for either so it was pointless having insurance and i cancelled it.

Last 12 months been having extreme pain, fatigue, fevers, frequent bowl movements (10+ daily), insomnia and bleeding. In addition this has caused an increased need for my daily cortisol replacement and i often went into adrenal crisis or had collapses due to low blood sugar as there just wasnt enugh cortisol in my system to cope with what my adrenals would normally make PLUS the need for anti-inflammatory action for the crohns.

Numerous times i begged my doctors to check things and help and told them i knew i was low on cortisol, i tol d them my symptoms but they said my ESR and CRP werent elevated so i was fine. even if i presented in hospital they wouldnt do further checks despite me pleading that my inflammation markers were probably surpressed because i was taking moderate doses of hydrocortisone daily (normal replacement is about 20-30mg and i was not surviving with 50ish). NOBODY LISTENED.

Since new year i have been into hospital 3 times and every time sent home after a few days on a drip of fluid and some extra cortisol and been told "you are fine, if anything you are causing your own problems by taking more cortisol" I managed when i was in for 2 weeks in march to get a flexi sig done (lower end of the large bowel checked) they found nothing and concluded categorically "YOU HAVE NO CROHNS OR INFLAMMATION" and hinted it was all in my head - the bleeding, pain, fever, fatigue etc....

They ignored me pointing out my crohns was found in the illeum and duodenum so nowhere near this and that all the symptoms i pointed out were higher up than where they looked but they insisted that from this tiny area they looked at my entire bowel was fine.

2 weeks ago another collapse and my GP called ahead to the hospital and insisted they do a colonoscopy, they admitted me for an urgent scan. 8 days later they actually did it. They couldnt get the camera anywhere near all the way round due to the damaged tissue and inflammation and stopped the scope after a while (i was awake as the sedation didnt work so i saw and heard them discuss this but they didnt speak to me about it).

2 days after that they came and spoke to me and said it looked very bad and they would put me on high dose steroids (400mg iv daily cortisol) and asacol enemas while they waited for the biopsies to come back but agreed it might need surgery. However its easter weekeend and they all went on holiday and the labs were working either so having to wait til tuesday to hear. I have doubts they will offer surgery as they wont listen or admit their mistakes and they cant get their heads round the problems with the adrenals too and the need to do something other than steroids.

Basically this means i think i have to get this done privately, I am terrified of the costs - ive been bedridden for 6 months and off work for 9 so i have no money and its more the time in hospital and costs of painkillers on top of the actual surgery that worry me. Until i have results from the biopsies etc and know exactly how damaged and how much bowel is necrotic i have no clue whats involved.

Is there anyone with any clue or private costs or can comment on the proces of surgery - prep and recovery time etc. I am not in any doubt if left to the NHS now i will not make it through so private is really the only choice, im not well enough to rob a bank at the moment and playing the lottery hasnt helped me as yet.

:sorry: Sorry for the long post/vent/sob story, there is plenty more negligence to go into but best left to the biography which will have to be published as a fiction as nobody will believe its true!

 

[Crohn's 35]

:welcome: to the forum. I am so sorry for the hell you have endured and to have you tell you it is all in your head? What is wrong with these doctors, and I know, it happend to me 20 years ago and still nothing has changed. There are many here from the Uk that can help you, I dont know their system. All I know from what you are telling us, you are the one case I would say surgery could be your answer. NO one should suffer a day let alone 6 months! Been there done that, for a year! :hang: someone from UK will be along soon. Good luck!

 

[ameslouise]

Hi Salt and welcome. Wow. WOW. I am just baffled and amazed at how the NHS can be so great for some and so horrible for others. I am so sorry you have had such hideous treatment and they caused your adrenal failure and Addisons!

As Pen says, there are many on here that can help you navigate the NHS in order to get switched specialists or hospitals and better treatment. It would probably help if you put where you are specifically in the UK in your profile so the other UKers can comment and give you some advice.

Good luck - I hope you are able to find a better situation within the NHS so you don't have to go private.

- Amy

 

[DustyKat]

Hi Salt and :welcome:

Whoa you sure have been through the wringer and continue to do so.

As the others have said, there will be others from the UK that will be on and hopefully will be able to put you in the right direction to get some decent help!

As to the surgery......Surgeons vary in their requirements pre op, some will have you take a prep, like prior to having a scope, others only have you fast. If your post op recovery is uneventful then you are normally in hospital for 4 - 8 days, the former time frame being for surgery done via laparoscope the latter for open surgery. It will take a while to get back on your feet afterwards and to be realistic you really can't do much...driving distances...lifting...strenuous exercise and so on for about 6 weeks and then build up from there.

Good luck with your results and ongoing issues. Continue to keep us posted and welcome aboard!

Take care, :hug:
Dusty. xxx

 

[saltimbanc0]

Thanks guys for your responses

I admit its hard to know until we have biopsy results and the specialists discuss with me what exactly the options are etc. I have no idea how bad it was or how far along after they couldnt scope there are problems.

I still see the same gastro who diagnosed me at 14, he has been as good as i can expect in this country and at least knows my history - he saw me as an athlete and what i fought through and i feel that is an important dynamic in getting any sympathetic help or treatment. He is based on the NHS at Wexham park Hospital and in maidenhead privately - Dr S Levi.

The problem is unless i see him privately when i make NHS appointments to see his clinic i am always sent to see some registrar or junior doctor who has no clue and fobs me off despite my insistance i need to see somebody with a clue about my history etc. For someone to see me now - an obese swollen mess who hobbbles about with someone supporting him - it would be impossible for them to comprehend that about 2 years ago i was training full time 6 hours a day plus studying and working 6 days a week.

Id love while im in for surgery for them just to take out all the damaged tissue, join it back up and while they have me open stick a large vacuum cleaner in there and suck out all the fat from a year being unable to exercise and having no thyroid and then 6 months bedridden. I would look into writing to the press about this all if i thought it might do some good or even bring in a little money or awareness so i can raise funds for the resection.

Il hassle the hospital for results tomorrow and get straight in touch with my gastro privately.

 

[Astra]

Hiya Salt
and welcome

I'm a bit confused, (doesn't take much!)
Why are you paying for health insurance? Why are you going private? Why are you worrying about the cost of meds?
Are you a UK citizen?
If so, it's your right to choose which hospital you go to via your GP, and you can also choose your specialist.
http://www.nhs.uk/choiceintheNHS/Yourchoices/hospitalchoice/Pages/Choosingahospital.aspx

http://www.nhs.uk/choiceintheNHS/Rightsandpledges/NHSConstitution/Pages/Yourrightstochoice.aspx

This hospital has let you down, so go somewhere else, get a second opinion, talk about other options and treatments.
Don't be fobbed off with juniors and registrars, this is unacceptable.
Good Luck
Joan xxx

 

[beth]

It's a shame you canceled the insurance as any new provider will put your problems under pre-existing conditions and be excluded from cover.

It sounds like you are best sticking with the NHS, and in need of an advocate: PALS I think are the people you need to talk to.

You also need to lay down the law to your doctors. Preferably all of them together. Was it your GP who didn't tell you how to taper off the pred? and the consultant who's clinical staff ignored what you were telling them, together with a PALS person and thrash out what they are going to do to sort out the mess they have got you into. Because it sounds like you have very good reasons for official complaints against all of them.

 

[saltimbanc0]

It was the old GP surgery (who are guilty of several accounts of negliglence) who never followed the taper orders from the consultant. It was also a GP there who told the insurance that all of this was related to pre-existing Crohns which had been underwritten after a few years (as a result they wouldnt even cover the endocrine which wa totally unrelated or if anything entirely down to that GP anyway). This surgery also refused to do routine follow up blood tests requested by the consultant when i was on humira, wouldnt authorise repeat scripts for hydrocortisone and levothyroxine without an appointment which i couldnt get for weeks and finally when i made a complain about them to the PCT they wrote to them saying i had turned up to an appointment clearly drunk and smelling of tobacco/drugs. I am - or until they ****** me over WAS a full time athlete, i have NEVER smoked or drunk alcohol in my life and they have that documented in their records and my history. This was just so far beyond what i could comprehend that i left immediately and changed surgeries. The new one has been better but all they can do is follow the system and make referrals which are ignored or put in a ridiculous waiting list by the NHS.

When i had been in hospital and treated so badly and allowed to collapse from adrenal crisis we made complaints to the head of nursing, the chief clinician and the CEO of the hospital - none replied. We then contacted our PCT and the local MP - both replied saying they would look into it and expect a reply in 30-40 days..... nothing happens and this is how patients get lost and die in the beurocracy and madness of it all....

This is why i fear i will have to go privately - the NHS hospitals refused for over 9 months to do a colonoscopy and now they finally have I am waiting for them to even give me meds to manage it and come back to me about a plan, they still have never spoken to the endo consultants ive been with to work out a plan together to manage things and right now im not getting any help from them whatsoever. I have been in so much pain for so long now i really just feel too tired to fight and carry on so i just want to get in and get this ripped out of me and onto something to manage it all so that in a few months i can turn my attention to the endocrine stuff. Il have to worry about paying debts off later - after all if i dont get out of bed again there isnt a life to worry about. Id rather be up and about and struggling to pay debts than this.

 

[littlemissh]

I suggest you simply ask your GP to be referred to another hospital. Is wrexham park near London? If so sk to be referred to St Marks. They are a gastro centre of excellence. There is no point going to see doctors who you have no faith in and your current gastro clearly isn't on the ball...if he prescribed you medication it is HIS responsibility to ensure that he follows you up appropriately and check at follow up that you are taking the correct medication at the correct dose. he should have known that you weren't well and made arangements for relevant investigations etc. He should also have arranged for you to be under an endocrinologist for your addisons as it is his treatment /lack of appropriate follow up that probably caised your adrenal failure.
It really sounds to me like you need a new gastro...asap Ask your GP to arrange it with all your recent tests enclosed.

You really, really don't need to pay privately. You just need a good team of nhs clinicians around you that treat you appropriately and responsibly.

 

[saltimbanc0]

I will do my best tomorrow to get transfered up there if they are recommended. If i can do it on NHS then great, i guess i can hope the results are concrete and conclusive enough that any hospital that sees them will get me in urgently for surgery/treatment. Its just i know how long the NHS transfer/referrals all take, I might have to get copies of the results/discharge and then go to A and E at the appropriate hospital?

Being in bed and out of it much of the time its hard to organise things so I will have to wait for my mum to be around to help and arrange things - so nice to be disabled and living back at home at 24 after living alone and owning my own property on the other side of the world a few years ago.... If i went any more backwards id be bending the space time continuum.

 

[littlemissh]

There is no reason you cannot have it on the nhs. If your gp sends it as an urgent referral and faxes it over it will generally be shown to the consultants who decide when an appointment should be sent. If it is sent as routine you will be waiting ages as the consultants don't see the letter and a routine appt will be sent. The only other wAy is to see the consultant privately for the first appt and ask to be transferred to the nhs after that. Dr Chris Fraser is a good consultant there and very approachable, but all are very reputable.

 

[saltimbanc0]

Thanks littlemissh, il def ask if they can do that tomorrow and mention Dr Fraser.
Right now so exhausted and desperate for some sleep, it doesnt help that with the addisons my blood sugar drops too low as soon as im low on cortisol. I have to keep putting carbs in either food or energy drinks or i go hypoglycemic. Again if i can find a way to deal with the GI stuff without steroids this might be manageable. Ive asked my mum to come over and help me as soon as possible tomorrow, hopefully il get a little rest before then but pain and other things are keeping me up right now still.

 

[saltimbanc0]

Hospital havent/wouldnt send full copies of my notes to the GP for my transfer. They said they would "try" to send a discharge summary though they hadnt written one (Im sure this is not possible PLUS they said they had copies of my notes on the ward). Im pretty sure this wont have the full details of the colonoscopy done last week or the blood results showing where things are so its probably going to mean starting the process again wherever i go. I dont mind going to St Marks but its a bit of a trip so once im there It wont be possible for my mother (only person i know in this country really) to visit. Its worth it if the treatment is possible and il be out of it on morphine post op with any luck (for a month on a minimal drip would be even better so i can properly recover and lose some weight!).
Because the hospital wouldnt help or pass anything on it was pointless seeing the GP today but i have an appointment tomorrow, they said they would fish though my notes (poor things its like 8 trees thick) and find anything thats been prescribed before that might help with things in the meantime but as for getting somewhere for serious treatment i dont know.
A big key for me is with the endocrine problems my growth hormone is surpressed so i have no tissue regeneration - this is also a reason for my low blood sugars and adds to the symptoms of fatigue, joint pain etc. I did a therapeutic trial of some I got hold of and it made a difference to being able to sleep and i got about 2-3 hours that night and felt much more refreshed than normally. Im wondering if without GH any damage to my gut is going to heal properly even if the inflammation is reduced by steroids or resection...
I know there were successful trials with GH therapy for crohns but in this country it will never happen so not sure what to do regarding that. I will have to see where we are with a plan for the current flare and then consider if its necessary for me to pursue in order to rebuild.
Its clear im not a simple patient that fitx in the box but the implications are not THAT massive or incomprehensible if the doctors would just accept they need to look at a few other things at the same time and treat the patient as a whole, or a least a human.
Ive been so down the last few weeks, well months really as i dont know how id build my life back even if i did get this problem sorted now. I was so hopefull when i finally went into hospital and they agreed i was right and found the damaged tissue that something would happen but it really doesnt seem to be and its just made me feel like whats the use again when i havent got the energy to fight and instead each day just get in more pain and slip further backwards. im sure if i felt i had any control of the reigns to make things happen that I would have sometihng to hold on to but I just cant seem to do that, that was why i was even considering private options because at least i had some power to make things happen - you cant put a price on hope and a reason to keep fighting but I WILL try the suggestions you guys have made because at the end of the day its quite likely giong to be the same surgeon etc but just a hell of a lot cheaper for the bed and recovery etc.....

I would like to try and put a positive note in here and point out for those with Crohns, esp young active people that when I was dx at 14 i managed with the stomach pains and fatigue to keep training every day and push through. It was something i lived with but never a real disability and just something to make me fight harder and prove to myself and those around me how bad i wanted to skate. I still acheived a lot until other health issues came in. Just want people out there to realise it is possible to still fight and be on a par with everyone else with something like this.

 

[saltimbanc0]

Ok did a lot of reading up on St Marks and think this is best option. Been up all night in agony and zopiclone hasnt given me any sleep so i have written notes for my GP tomorrow assuming i will be too low on cortisol and sleep to get everything accross so haing it written down might help. I aos then wrote a summary for her to PLEASE fax direct to St Marks to basically say "get him in now and fix him or he wont last" I know this isnt the normaly way things work but like you gyus up there said direct faxes and phone calls in extreme circumstances should be able to yield SOME help. It really is this or bust now.

Il try to C and P the letter:


WRITING THIS NOW WHILE LUCID IN CASE I CANT CONVEY WHAT I NEED TO SAY IN THE MORNING:
I genuinely feel now that surgery is an option that must be taken, though I was firmly against it originally, in light of recent (the last years) events it’s clear that the standard drug treatments alone are not treating and indeed making some matters (Addison/endocrine) worse.

I have been speaking to the Crohn’s association, initially about the poor care at Wexham and their failure to pick up on the flare which has been going on for a year now clearly from the damage shown on the colonoscopy. They strongly recommended St marks hospital as it has a centre of excellence for gastroenterology and many people have been very happy with their NHs surgeries there and the aftercare offered.

They have advised that in this situation a direct referral by fax or phone call to the hospital to explain the situation could massively expedite things and avoid the long wait, or failing that presenting at A and E with a letter from the GP (much the same way I did with Dr McKay and Wexham 2 weeks ago). Ideally we can provide copies of the results of recent scans and bloods plus a history explaining why things are so critical here.

Even with increased cortisol I am not getting any relief and continuing to slide backwards and managing my blood sugars has become a nightmare – I am continuing to gain weight at a sickening rate and the high dose steroids are only compounding this problem – IF I am able to recover I have real concerns about how I will be able to turn this issue around on top of the endocrine ones and recovery from the treatment for the Crohn’s itself.

Again I am aware of the system of NHS referrals and wait times and new appointments but was told by the Crohns and Colitis association that there have been many cases where patients have had urgent referrals by fax and been in the hospital the next day and that this is possible in a complicated or serious case and I am very hopeful this could be arranged. I am very worried about the possibility of being put back in a wait list and somehow slipping backwards from here though I am not sure there is anywhere backwards more to go… I was so sure that being in Wexham and finally having my sanity saved when I saw how bad the flare was and how long evidently it had been active – that I Had not been “imagining things” as the doctors had suggested and that my concerns that the blood markers might not be reflecting the true problems inside. The difficulty I can see will be getting any results from Wexham to avoid having to repeat tests and scans in St Marks if this could be done to save time and money and speed up the process of treatment, obviously they may see fit to do everything from scratch but id hope some existing notes could be transferred with me to cut some of the time. The hospital would not speak to me at all yesterday when I phoned despite them telling me my notes and discharge summary would be left on the ward for me to pick up – they merely said the GP alone could request a discharge summary but this would not contain a full report or results.

PLEASE HELP


SIMON WALLER





PATIENT NOTES FOR REFERAL TO ST MARK’S;

Male, 24, Ex full time athlete, Olympic squad member and full time sports coach/student.
Crohn’s dx 2001 – terminal ileum and duodenum.
Treated with azathioprine 100mg daily, prednisolone 30mg daily (discontinued after 6-7 years).
Iron deficient but intolerant to iron tablets
B12 deficient – prescribed b12 injections but former practice would not administer

Secondary adrenal failure dx 2008/9 – due to long term steroid use?
Follow up tests 18 months later confirm primary adrenal failure, hypothyroidism and suspected other pituitary suppression.ed
Repeat severe Crohn’s flare 2009, rx Humira which had good results but caused persistent infections (chest, skin etc) which were not responsive to antibiotic or antiviral therapy. Only cleared after discontinuation of ALL immunosupressants (humira and azathioprine).

August 2010, symptoms of flare returned: Gi pain, fatigue, fever, insomnia, joint pain, bloating, rectal bleeding, mucus in stool, frequent hypoglycemic episodes and bowel motions well in excess of 10 times a day. Blood tests showed little elevation in inflammatory markers. (presumably due to endocrine issues that have now developed so far along and the increased dose of HC to manage the adrenal failure).

Symptoms continued until unable to work and was bedridden by Christmas 2010. Pentasa, azathioprine ineffective to manage and Addisonian symptoms on top of the Crohn’s masked/exacerbated problems. Written off work – on Incapacity benefits.

Gut problems worsened still to crippling/debilitating pain in the last 2 months not managed by painkillers. Daily hydrocortisone replacement for the Addison’s below 60mg was not preventing adrenal crisis suggesting a huge amount of inflammation in the body that was using up cortisol reserves. (normal HC dose is 20-30mg daily). Frequent/persistent low blood sugar levels. Joint pain and weakness have prevented even being mobile around the house a lot of the time.
After 3rd hospital admission and a direct request from GP for colonscopy due to sudden deterioration of symptoms, increase in bowel frequency, abdominal distension with acute pain, fever, joint pain, low blood pressure and cushingoid symptoms despite no resolution of bowel problems. Scope revealed “severe acute flare” in the colon – full report not provided but the scope could not be completed or passed fully round due to the extent of damaged tissue that had gone untreated.

In light of adrenal problems, the degree of current inflammation and lack of response to drugs treatment (both of the last hospitalisations have involved 4 days of 400mg IV hydrocortisone with NO symptom resolution) I feel that urgent admittance and surgery or advice from the highly recommended team at St marks is my best option and would greatly appreciate an expedited referral or admittance to sort some treatment before its too late.

 

[saltimbanc0]

Well i had a good chat with my GP this morning who then phoned my consultant directly. She called back within a few hours saying he had seen the results of the scope and biopsy and wanted me back in urgently. She told me shed rung ahead and spoken to the medical registrar who'd sorted a bed and got my notes together and that a surgeon would see me this evening so i picked up the letter from my GP and came straight here.
Got here at 4 and reception said they had no record so go to A and E and show them the letter. 30 mins then through triage and sat in a corridor in A and E for 4 hours before they said they couldnt find a bed and the surgical team and gastro staff had gone home.
I told them it was THEM that told me to come in and had lied to me about their preparations, that i had left home where id gotten myself comfy enough after a nightmare stay here and that I had brought myself and had no way of getting home. 30 mins later still and im in a room on the private ward but i sure hope they are aware there is no way i will or can pay for this. Had spoken to the chief of nursing on the way in and told her i had been asked to come back in but she wasnt able to reply - hpoefully shel be in touch tomorrow as will SOME sort of Doctor as once again i am without any meds - no pain relief, no Iv cortisol (just manging on scraps of pred i could find at home and my usual HC). Burning up a big fever so all i can hope is to get some rest tonight and be ok enough in the morning and not wake up to find they have turfed me onto the lawn outside (though that may cool me down). The only irony is im pretty sure this is the private ward where i first camee 10 years ago wehn i was diagnosed (and had insurance)... Full circle maybe? It would be nice if theyd tell me why they rushed me back in...