It began for me in Jan 2006 after a gall bladder operation, I had to run to the toilet up to 20 times a day. After Tests I was told I had IBS. I tried every diet going, nothing worked. I had good and bad days. I just accepted the diagnosis
In Oct 2007, I suddenly had a pain after eating or drinking, in my upper abdomen, I immediately thought Ulcer.
January 2008, I approached my GP since the pain was getting worse, and I was starting to dread eating, plus the diarrhea had increased. My GP referred me to A Dr K K Yoong at Northwich infirmary. I received the appointment in March 2008. He personally never examined me and TOLD me ( his first words of greeting) I had IBS, I tried to explain that the pain was very different, and that it was increasing, he dismissed what I said and repeated I Had IBS...I told him Crap!!!, he said ' don't u believe me' I said NO, he got rather upset about this, and properly told me about his own IBS. He gave me a prescription of Buscapan and anti depressants, He never told me what the medication was, only assured me it would take away the pain. He ordered only two tests, Blood and an Ultra sound...neither which would show What was truly wrong with me. I think you guessed it...I was disgusted about the anti depressants and threw them in the bin, I tried the buscapan which turned out to be Crap!!!
My Bloods showed increased Calcium, Ultra sound - Nothing. I was then referred to another Doctor regarding high Calcium, and a further appointment was made for me to go and see Dr Yoong in October. 7 months later, I was horrified, and in so much pain, but had no choice but to wait.
In the meantime whilst waiting, it was discovered I had parathyroid problems, but still no answer for my stomach pain. I began to lose huge amounts of weight, and became housebound. I owned my own business which I sold for next to nothing...I was too ill to work. My Whole Life Changed Dramatically!
My business sold in June 2008, I was in a rented apartment, Alone, just waiting until the October appointment where I was hoping, Dr Yoong would take me seriously. The day finally arrive and I dragged myself from my bed, with hope that once he see's how bad I was, and the massive amount of weight loss, he would order tests and find out what was wrong with me.
I arrived, doubled up in pain at the hospital, to be informed that Dr Yoong had struck me off as a patient and he had cancelled my appointment...Nobody bothered to tell me in the 7 months I had waited :( I cried all the way home, feeling totally at a loss, losing all hope that one day I will be pain free.
By November of 2008, I had no relief from pain, I could no longer eat, and spent my days and night on the toilet. I then went bk to my GP Dr S Brown...Who told me that I had IBS...because that was what Dr Yoongs report told her, she would not give me any stronger painkillers than paracetamol, and said there is no food supplement, and that I should Just... Eat! She advised me to take Anti Depressants. By this stage I was willing to try anything, but when I got home, I looked at the tablets and once more threw them in the Rubbish Bin.
I was once more, not helped, not taken seriously, and felt completely hopeless. I felt that there was no one out there going to help me, so I gave up, stayed home, used hot water bottles and paracetamol, and cried alot. Thoughts constantly came to my mind ' they shoot horses don't they' or ' they would not leave an animal in the state I was in'. I felt it was Just Plain Cruel, but I did not know how to get these people to listen to me? I knew I did not have IBS.
By Jan 2009 I was in a worst state, in constant pain, I needed the hot water bottles very hot to help me, so had burnt my stomach and back from the heat. I lived on the toilet, in the bath or in bed. Four days had passed and I could not eat, nor get a drink, so I was completely dehydrated, and starving, the pain was at an all time high, and my heart rate was at 180 beats a min, I truly believed I was going to die, and truthfully I welcomed it, because I could no longer take the pain... I was now down from 13 stone(182 lbs) to 6 and half stone.( 91 lbs )
My ex husband came to visit me, and was shocked at what he saw, he insisted on calling an ambulance, I said NO, cos they wont help me, only tell me I have IBS, he then started trying to help me, will fluids and little bits of food. He pulled me from the brink of death. He insisted I try again with my GP, which I believed was a waste of time, but he took me.
I saw a different doctor, Dr Mount ( fantastic Doctor )who agreed with me after she examined me, that she did not think it was IBS and referred me Urgently to Dr J S McKay, I received the appointment for a few weeks away.
Sorry to say this was no better, he never examined me, told me...you guessed it I HAD IBS, My ex insisted on tests, which he ordered, but stated that he felt it was a 'waste of time', and that when they come back negative, he will refer me to an IBS specialist in Wythenshaw hospital, who specializes in Hypnosis, and will help me get control of my Pain. I was very surprised at this, I believe my jaw dropped, and I left feeling once more... NO HOPE!
About 10 days later I finally received the appointments to go for an endoscopy and a CT scan, but they were weeks away :( however my hope's slightly rose, at least I was going to be tested.
I was admitted to Leighton hospital where the hell continued.....
SUMMARY SO FAR:
One GP...Two Bowel specialists, Three misdiagnosis, and One GP Concerned. Who would have hope after this?
I was admitted to A & E, emergency ward at Leighton hospital, where they gave me no pain meds, only caused me more pain, by Canulas (Iv's) into my veins. One Nurse I think his name was Brian tried three time to canulate(Iv) me, causing great pain, hitting my nerves. After three attempts he was still unsuccessful, and even shouted at me,' to stop crying cos that is not helping' for I have burst into tears, which I could not control, and sobbed for the next two hours, uncontrollably. No one helped me!
I was then put into a wheel chair and taken to Ward 7, shortly afterwards I was taken for the CT Scan.
The next day 21st of February 2009, on a Saturday morning, The Bowel Specialist on duty that weekend was Dr I J London, he came to see me, he told me that he had the CT results, and that I had IBD...my immediate response was ' I don’t have IBS' he looked shocked at my reaction and said No " IBD" Inflammatory Bowel Disease. I was taken aback and realized that I was not being told... IBS...phewwww!!!! at long last someone had not said IBS, he then asked lot of questions, examined me, was shocked at the state of the burn marks on my stomach and back, but told me they would fade in time ( which they have) and then said He believed I had Crohns Disease. I was so relieved that finally I had a diagnosis although I did not realize or understand the implications of what this meant...I was overjoyed to finally have someone not say I had IBS.
I spoke to a nurse and asked her, although I was down as Dr McKay's patient, am I allowed to change Doctors? she said yes I then asked for Dr London. She said she will make a note in my file.
So I was admitted on Friday, received the diagnosis on Saturday and then sat in the hospital bed with no doctor coming to see me, or any meds, I saw Dr Mc Kay on the ward on the Tuesday, but he never came to me. Which I expected as my Doctor should of been Dr London now. on Thursday Dr McKay came to me, he was still my Doctor...The change had never been made :( I wish now that I had said something, and insisted on Dr London. I was too weak, sick and in pain to fight for my rights :(
I then told him What Dr London had said, he said NO, it is not yet determined if I have Crohns, they have ruled out Colitis, but with a certain blood count I have, he has only seen it in one other patient, and that was a TB patient, problem being the test is very expensive. ( this caused me less visitors, because I was scared that I could give TB to my family )He never gave me the test. He said he wanted to do a Colonoscopy and GI Endoscopy to verify or eliminate the possibility of Crohns. He also refused to put me on any meds, like crohns meds or steroids until it was confirmed. So I sat in the hospital without proper meds, only paracetamol and now tramadol ( which is useless) and constantly had to heat up bean bags in their microwave to relieve my pain. Even when my pain was at an all time high, nobody offered me anything other than this Crap!!!
(I have to say at this point that the Ward was a complete Nightmare, and I will go into the wards and nursing staff in another blog.)
The day came for my Colonoscopy and EGD, to be done at the same time ( which I was not aware of) A Doctor agreed to come in early one morning for the test. So Dr McKay did not do it himself. This was the worse nightmare of my life...the pain was Excruciating !! I had one Camera down my throat, and another in my colon The Doctor was not Gentle either...it felt like he was rammed it up inside me..
He kept pushing it in, and giving me more and more sedation, until I could not take the pain any more and I Wailed Stop...I cant take it anymore, he then pulled the scope out of me to fast, and that was it... lights out...When I woke up I was being given oxygen,, and was attached to a cardiac monitor,, a nurse was standing by my side. I was relieved it was over, but was confused to why I crashed like that. I now am aware of why I crashed / blacked out, My finance told me it was because of a vagal response, by having the scope extracted to quickly.
Later on my report stated, that the Doctor was unable to diagnose me, because I stopped him! I was even told it was my fault , because I had not let him finish. I felt terrible, because all I wanted was the diagnosis and the meds, so I could get better. But stated! that if they wanted to repeat the Colonoscopy they will have to put me to sleep, because I could not go through that again...I am unhappy to report that what this Doctor put me through, gave me terrible nightmares, and still to this day I can wake up with tears streaming down my face, over this incident. He Completely Traumatise Me. I did ask one of the nurse's to see a counselor in the hospital, to talk to someone about it, because the truth was I Felt Violated! as u can guess no one came and spoke to me, although I was still in the hospital a further two weeks.
One thing good did happen after this was that Dr McKay did agree to give me steroids and Crohns meds, ( or was it good)?so at least I was having hours of pain free time and able to start eating. Also he said he had contacted A Surgeon by the Name of Mr A U Khan, who will be doing a laparoscopy on me, so at least we will get a diagnosis. So I sat waiting for two weeks to see Mr Khan.
Every day for those two weeks, the nurses handing over to the next shift staff, would say I am waiting to see Mr Khan for a Laparoscopy. I actually was still undiagnosed, except with IBD.
Finally the day arrived Mr Khan came, also with his Resistra Dr Chris Growcock ( not sure on spelling) I was relieved that this was soon to be over, and I would get a diagnosis. On greeting, Mr Khan was very pleasant, but shocked the life out of me, when he started telling me what he intend to do with me...Part Bowel removal, how much they were not sure, and wont know unto they are inside me...I blurted out ' What do u mean, your doing a Laparoscopy, He kindly smiled and said he has never going to do a Laparoscopy, he was a Bowel Surgeon. I once more burst into tears...at the shock I guess! He told me I had Crohns disease, I said Dr McKay said that was unconfirmed, which he laughed and said, It clearly shows on your CT Scan that you have Crohns. The problem he had now, was that I had started taking high dose of Steroids, and the crohns meds, which meant that if he operated then, I would end up with two operations, slower recovery etc...but if I could be weaned of the meds, then I would just need one, as he would be able to reconstruct at the same time. I opted to try to go for the One operation.
Dr McKay came to see me ( not sure how long after that) and questioned me to why I was shocked at the Bowel Operation? errrr dohhhh, simple because he never told me that was a possibility, and told me and the ward I was having A Laparoscopy, it was in the hospital records. I also came to realize at this point, not only had he mislead myself and all nursing staff, but he had given me Steroids and Crohns meds Knowing I was going to see Mr Khan for bowel surgery...What incompetence! He put me through a near month in hospital, loss of visitors, no descent pain killer, and dismissed Dr London's Diagnosis, and put me through hell on the Colonoscopy etc... Why? when Mr Khan said It clearly shows Crohn's Disease on the First test given when I was admitted to the hospital. I decided within my mind that Dr McKay was Away with the Fairies, and that I had finally lost all faith and trust in him. One thing I knew was when I got out of the hospital I would never want to see him as my doctor again.
So he let me go home finally! I had to beg him to give me Orimorph, a liquid form of morphine, incase I had the ' Bad pain' as I called it, the one where I felt I could not handle. I went to see Dr Mount when I came home, and she gave me Morphine tablets. only 5 days later I was rushed back into hospital, and ended in an emergency operation, regardless of my meds...It had now become A Life or Death situation.
I woke in ICU, Feeling fantastic! I was finally out of pain, well, except for the operation pain, and with a Stoma .But Wow life felt Great! finally the 17 months of pain was over. I was moved to HDU the next day and spent 2 days there. The patient care there was one to one, Fantastic! I guess like private care :) I thrived in this three days, much to the surprise of my Surgeon and Dr Chris...who visited me at least three times a day, and I can not Praise Dr Chris enough, words could not describe What a truly Wonderful Doctor and Human Being this man is, I will be forever grateful for the kindness and care he showed me. Plus Mr Khan told me I was now Crohn's Free, so I believed that was the end of it.. I apparently was in ICU and HDU because of my COPD and the fact they expected me to contact septicemia. Luckily for me I did not, I put that down to Having a Brilliant Surgeon...In fact he is know as The Best...So luck was on my side....
Until I was moved to ward 13....
So to end this.. I finally after 4 cancellations had my reversal in February this year 11 months after the first operation, I was Blessed to be once more operated on by Mr Khan, but sadly had No Dr Chris looking out for me, he had moved to another hospital. I am now under the care of Dr London...who I trust and respect, and we are trying to get me back to normal. Have started Azathiprine tablets, so far not helped me, but I do have hope.
I am still Very Angry at Dr Yoong as I truly believe that he has been the cause of my Nightmare, Pain and Surgery, Because he could not be bothered to test me, I went from a prominent Business woman/ home owner to selling my business for virtually nothing, losing my house, losing my car, as I said earlier, My life dramatically changed. I am angry with the doctor who put me through hell, on the Colonoscopy, Dr Brown for believing Dr Yoong and For Dr McKay's stupidity.
In the words of Meatloafs song 'Two out of Three ain't bad ' Well Two Bowel specialist had two out of three, they had the IB correct. In this case however it turned out BAD.
I have to thank My Ex for keeping me alive, Dr Mount for believing in me, Dr Qureshi for getting me the urgent medical attention I needed. Mr Khan for saving my life, Dr Chris for your Wonderful care. and Dr London for taking me on as a patient although I question everything, for I am the type of person who needs to understand.
I also had a third operation within this 11 months, to remove two tumors from my throat...Parathyroid. My Surgeon was the Delightful Lovely man Mr Guy, and to assist him was Dr Chris :)
I do believe that Doctors are now fobbing people of with a diagnosis of IBS and not properly investigating, So You out there if you have any symptoms check everything, Colitis, Crohns, and insist on tests, do not be fobbed off. Even if you are not losing blood. Because I did not fit in with the norm, I never had Crohns from a young age, it started for me age 49, and I did not lose alot of blood, only had spotting.
Good Luck to You, I truly hope your experience is or was a much happier one than mine :))))
Further to this...I was taken off the Crohns medication in March 2009, and the crohn's has been and still is active within me, the problem is...No body knows where! I am hoping they start investigating and finding it.
Further to this...I was taken off the Crohns medication in March 2009, and the crohn's has been and still is active within me, the problem is...No body knows where! I am hoping they start investigating and finding it.
