Hi everyone just had major surgery for crohns

[mobius87]

hi everyone just had major surgery for crohns

Hi i was diagnosed with crohns late last year,novemeber time after miss diagnosis for about ten years ,i recently just had surgery i was left by the nhs to get seriously ill with it ,to the point of a few months before the op i was urinating blood and food and alls sorts of nasty things ,i had the op which was supposed to be key hole surgery ,i went in a 9 in the morning ,woke up at 4 o clock with no clue to what was happening except there was pain in my right arm ,later to find out ,they had dislocated my right shoulder during the operation ,and i was on that for 7 hours ,now for 2 days after the op my right arm was paralyzed,i also lost 2 more further days ,where they had left all the air in my stomach from the keyhole ,and it had inflated my insides and was crushing vital oragans,one week on from the op i left the hospital with catheter and stoma bag attached ,i had the catheter and stoma bag for 2 weeks in total,but i was made to make my own way to the local surgery ,baring in mind i could barely stand due to have my stomach cut right open,3 and a half months on,and im in a worse state than before the op,i found out recently when i left the hospital ,i should have seen someone about my diet,had drugs to control the crohns physio and pain killers ,instead i was sent on my way with nothing at all,i had a follow up anointment i told them i was was getting worse,and they just disharged me saying it was part of the recovery,i am now at the stage where i cant eat at all without getting sever bloating and pain ,also have developed acid burns through my chest when even as much as drinking water in the morning,i am stuck and just dont know where to turn now,
can anyone help?

 

[mizgarnet]

Mobius, Do you have an advocate? Being from the States, I am not familiar with the NHS. Here we have to keep pushing until someone listens. I am sorry you are going thru this.

Wendy

 

[mobius87]

nhs

unfortunately not ,pay tax to the nhs ,which is compulsory over here,they are obliged to do a proper job ,but just seems to be screw up after screw up

 

[mobius87]

dont be sorry ,its the national health trusts fault for not dealing with things properly

 

[crunch]

mobius, sorry for all the probs you've been having. I've had some issues with NHS but nothing like you've had. Hope you can get back into see someone, perhaps even your GP to ask their opinion on what should be happening and help you fight your corner.

 

[Jessi]

Hi Mobius. This is a terrible way to be treated! I am appalled! There HAS to be something done about this. Man, I'd be suing some doctors for a whole lotta money, if it were me! Things are probably handled differently here in the states, though.

I am so sickened that you have to go through such garbage treatment. I really hope you find a way to settle this nightmare! Good luck, hun. :hug:

 

[mobius87]

Thanks jessi,im back to see the the specialist today ,i am going to take them to court,as this is a joke ,problem is they can say anything they want x

 

[fosterschick]

mobius87 < hi hope today goes better for you , in Hull we have an organisation called PALS patient liason service ( im sure you will have it too )they will look into your case and see what happened , they can see your notes and bring appointments forward ( with good reason obviously ) also lodge complains too , i used them when i was concerned about a very far off result date for my barium enema , and when they read my notes it turned out my xrays hadnt even been viewed ---i'd slipped though the net , but more importnatly they had me due to take part in a trail for a new drug which was not related to my symptoms !! nhs is a joke at times:voodoo: , you have got to keep up with your own care xx fingers crossed for today x

 

[mobius87]

hi guys ,went back into today ,and after a year of being made to believe i had crohns ,the doctors have now told me its some digestive disease ,they are utter useless ,after all this surgery and everything ,im going to try and get referred somewhere else ,cose this is now just gone beyond a joke

 

[loosewheels]

The treatment should be the same all across the country, however from what I have read its NOT, From what you have said I would say you should see a solicitor, you should not have been sent home or been hurt whilst in theatre.Is there any option to change the hospital you have been in, say to a different nhs area?

Hope you feel better soon.

 

[fosterschick]

did they give this digestive disease a name ? , nhs docs seam to so vauge and reluctant to name anything these days , i would defo contact PALS www.pals.nhs.co.uk, its is across the uk or ring the hosp u attended and they will give you the contact number , these people have direct access to your medical records and can give you lots of info , also ask them for a email or letter of dicussion this is useful if you do go down solitor path , the PALS can read your notes from your surgery so you can find out what exactly was done to you ... hope this helps , xxx

 

[mobius87]

hey guys its called diverticular disease ,im so angry at this ,im getting in contact with solicitors ,appreciate everyones input so much thanks you i tried to get referred and was told i have to go back to the same team ,major abdomanol surgery ,and get treated like this :-(

 

[fosterschick]

thats so rubbish, there's something called patient choice where You can choose the nhs hosp you can go to , defo contact solic and PALS , and im not sure 100% but isnt diverticular disease a bowel damaging disease too ?? xx stick to your guns you shoundt have to be treated like this x

 

[vickyhunter]

This is awful! Good luck with your court case - you deserve to win! xx

 

[mobius87]

Thanks vicky and foster chick,yea it is a form of bowl disease ,but only occurs in people over the age of 50,and im 24 only 8% of people require surgery as i have found out ,everything that could go wrong went wrong with my op x

 

[fosterschick]

well mobius87 im thinking i ought to listen to myself , jus come back from my consultant ( in ther all of about three mins !! ) to be told my large bowel looks ok so its ibs no need to look at small bowel !! when i told him my blood results show auto immune and i was bleed he shrugged his shoulders and said its ibs deal with it !!!! sssooo mad !! x

 

[mobius87]

i cant believe they do this to people,fosterchick get referred you might have what i have ,i was bleeding from both areas ,and still from the rear ,but it was bad at the front had food coming out with it aswell,but they are screwing peoples lives up although whatever it i have i was going gym eating healthy before the op,adrenaline was keeping me up right ,now i cant excercise at all can barely walk for 5 minutes without being out of breath,its just unbelievable , please get your self reffered ps message and i can give you my facebook chat more about it x

 

[fosterschick]

bless you , its awful the way that you jus get left to get on with it , if thats the point why do we have an nhs in the first place , i have got my head on now , going back to docs to ask for this gi and see if he can refer me ther , jus feel for my doc a bit , he is lovely but i bet he thinks , oh no its her agen and theres nothing i can do for her !!! , i think they said i had diverticulr watsit before but they seam to say ihavent now !! who knows xx

 

[mobius87]

Hi guys i have been back to mu doctors after looking over everything ,and my symptoms i have been reffered to another hospital ,he also went through all my diagnosis and paperwork ,i have both crohns and diverticulars disease,at all costs avoid kettering general hospital

 

[Terriernut]

Jaysus! You need to file serious complaints and yes, you do deserve not only to be treated better, and by proper specialists, but you certainly deserve an apology and payout for work missed, etc.

I dont think this would be Ketterings first complaint or compensation complaint by the way! And here we think the Luton and Dunstable is bad!
Egads!
:hug:

 

[mobius87]

am doing everything in my power,my body is refusing to give up ,but every day im getting worse,still nothing to treat either of them x

 

[Terriernut]

Personally, I'd get myself the ER at the next best hospital. Ask your GP for a referral. I understand youve been referred to another GI. Whatever hospital that is that the GI works at, go to it. If you get admitted as an inpatient, you will be taken care of immediately.

Alternatively, the GI you've been referred to has an IBD nurse. Call the hospital and ask to speak to her/him. They can get you in alot quicker.