Share Facebook
Crohn's Disease Forum » Your Story » 10 years fobbed off.


08-31-2015, 01:23 PM   #1
sabboo
 
Join Date: Jun 2015
Location: hull, United Kingdom

My Support Groups:
10 years fobbed off.

It's been nearly 10 years since I was diagnosed with crohn's disease, getting there was not easy. Nearly 2 years going to different doctors complaining about weight loss, back pain, Diarrhoea, blood in poo, headaches, tiredness, weakness and aching muscles and joints. For 2 years I was fobbed off with sick notes for diarrhoea and bad back. It got to the point were I was needing to poo 60+ times each day, and in such severe pain I could no longer eat. ̀ had given up on trying to work at this point and started a university course, I finally see a doctor who said he thought I had crohn's disease, and would refer me to see a specialist, and to take ibuprofen for the pain! I was relieved at first, but after two weeks and not getting a referral in the post I try to get to see my doctor again but cannot get am appointment and told to ring back the next day, this went on for another two weeks and I finally get to see the surgery's other doctor who said I wasn't her patient and I needed to to see my original doctor. 3 months go by of me calling every day and being told to try again tomorrow, told to "goto a&e if it's that bad", so my friend has to half carry me there as I was too weak to walk and despite not having eaten a single thing for two weeks at this point the hospital turned me away saying they couldn't do anything without my referral! I had quit uni as I was too weak to walk there and after blacking out in a stairwell and just being left I didn't want to be there anymore anyway. So 3 months go by and I finally get to see my gp again, "sorry I forgot to refer you" he said. Then put me on a self medicating dose of prednisolone.
I finally have colonoscopy and am told from sheer face value I have crohn's disease as bad as it can get. I'm told to stay on the steroids, and on them I stayed for 18 months, it took another 3 to ween myself off them after that and was put on azathioprine, which didn't help that much, finally I get put on asacol.
So as you can imagine I didn't stay with the same doctor, I moved surgery a few times, was made homeless as couldn't work and couldn't get any help with benefits. For years now I have been trying to get help with the severe pain in my joints and constant fatigue I have to live with. I work now part time and find it a daily struggle. It's taken 10 years but I'm finally being referred to a rheumatologist. Ever time I've tried in the past I've been fobbed off saying I have to do this and that, do this and that and then have to start the process again. To get this far I've had to complain to nhs England and can't believe I have had treatments kept from me and also the help I am supposed to be entitled too.
Am at my wits end with fighting all the time, it's enough of a struggle living with this without doctors making it difficult as well. Anyone else had problems like this?
08-31-2015, 01:57 PM   #2
Tuff
Senior Member
 
Join Date: Feb 2013
Location: Ontario

My Support Groups:
I'm sorry you're having such a hard time. The one thing that I would suggest is have someone go to your appointments with you. My SIL is a lot more assertive than me, and when I felt like I was being fobbed off, I started taking her to a few appointments, and she stood up for me. She's also an RN.
I don't know how applying for disability works there, but hopefully someone will come along who does. Hang in there.
__________________
Inflammatory bowel disease may more than double the risk of a serious blood clot in the legs or lungs.
************************************************** ********************************************

Stelara, Warfarin, calcium, Vitamins B12, D.
Previously: 5-Asa, Cipro, Flagyl, Prednisone, Aza, Remicade.
Pulmonary Embolism, DVT's, osteopenia, Peripheral neuropathy.
08-31-2015, 03:30 PM   #3
sabboo
 
Join Date: Jun 2015
Location: hull, United Kingdom

My Support Groups:
I'm not entitled to disability, thanks in part that the arthritis I have has never been officially diagnosed, that and atos did a number on me nearly three years ago and broke every rule that is supposed to protect my rights. My gf is an act and always at work so although it would be great to have her there she has to work full time. I'm not capable of working full time for more than a couple of weeks before I'm too run down but even part time I am really struggling. We have 1 yo girl and I work at the uni as a cleaner early on and get home just in time to say bye to my gf so we don't have to pay for child support. I've been told I have arthritis, chronic fatigue, and am being told about the extra intestinal symptoms only after 10 years of being fobbed off. My gi specialist cares about nothing other than my bowels and says it's down to my gp. My gp just finds excuses and I dint feel I'm being treated properly. Nhs England has supposedly organised a meeting with the practice manager to discuss this but the deadline ended two weeks ago now and I've heard nothing, but then again the practice manager told me if I don't like it I can go elsewhere! Just do fed up , tired and sick of fighting this every single step of the way.
08-31-2015, 04:08 PM   #4
buttER
Forum Monitor
 
Join Date: Feb 2015
Location: Netherlands

My Support Groups:
Hi sabboo

I wish I was there to fight your corner. Do you have your gastrointestinal symptoms under control?
Unfortunately I CAN believe you are being fobbed off. It is shocking that your extra-intestinal manifestations are not being looked into. Do you think the fatigue and arthritis are due to the Crohns or due to the Crohns treatment? My instinct is that they are relate to the illness, but they are also side-effects of some of the medication.
Have you been on the threads about fatigue and arthritis/joint pain to get some hints about how to deal with these?
By the way, having young kids in the mix is also not easy: I hope yours gives you more energy and motivation that it takes away.
You are alone, but not alone here.....I hope that is some comfort.
09-01-2015, 01:59 PM   #5
sabboo
 
Join Date: Jun 2015
Location: hull, United Kingdom

My Support Groups:
Thank you for the kind reply, hopefully my problems will get dealt with, just feels like being fobbed off for so long your mind starts telling you you are part of some military weapon test to see how much a person can take with the new chemical / germ weapon they have tested on me. Either that or I have just been left to die by the NHS.
09-01-2015, 02:06 PM   #6
sabboo
 
Join Date: Jun 2015
Location: hull, United Kingdom

My Support Groups:
The gastrointestinal problems are somewhat under control, when I have a flare up depends what doc I see as to whether it's my crohn's or not, which is another part of the problem. It's been at this level of remission for over 3 years now. I still have alternating diarrhoea / normal movements daily. Still get cramps. I got sent to a fatigue specialist a couple of years back got told I have fatigue and I'm doing all I can do to help myself including diet and exercise, though when I ask my doctor nothing is written on my file, same story with the bone density test. Have asked nhs England why this is the case, and why every gp I see tells me something different! Any thoughts?
09-01-2015, 05:27 PM   #7
mercbegone75
 
Join Date: Sep 2015
Location: Plymouth, United Kingdom
Hello Sabbo,
I'm in a similar situation to you, but with the added mixture of mercury causing my gastro probs. I had my amalgam fillings removed in 2011 by a mercury free dentist due to the progressive symptoms of mercury posioning. I have a leaky gut and the added bonus of candida overgrowth which is pretty bad. I'm already slim or lean, and have diahrrea quite often. Doctors, and to a degree NHS specialists don't really have the ability to fully understand our conditions. I've been to GP's who just laugh in your face and tell you to go and seek a psychatrist, because it's all in your mind. There's a culture of total denial and a lack of genuine understanding about these life limiting conditions.

I was wondering by chance, do you have any amalgam fillings? It's often been found that people with these conditions like Colitis, Crohn's and Gastritits have undiagnosed mercury poisoning. Many of these "syndrome X's" that the medical establishment are unable to treat can come from mercury toxicity. I've already had to re-arrange an appointment with another dentist to re-check my replacement fillings from my previous private dentist because there's a possibility that I have amalgam chips in some of the white fillings.

The only way you could check to see that you have mercury poisoning is by taking a Hair Elements Test. It's a test where by you take a hair or pubic hair
sample. You must stop using any chemical hair shampoo for a week before you do the test. the Hair Elements Test checks your mineral transportation levels. It's just a thought. As with all these conditions, we need unlimited bank roll to be able to tackle these problems. I've found it hard having to live with gut problems for the last 5yrs thanks to mercury causing my Colitis.

Hopefully i've given you some food for thought?
09-02-2015, 10:27 AM   #8
sabboo
 
Join Date: Jun 2015
Location: hull, United Kingdom

My Support Groups:
Thanks for the reply. I only had my first filling about 2 years ago and it fell out shortly after lol. I have thought about heavy metal poisoning causing this in the past but no idea how I would get this tested. How do I go about getting a hair elements test done on the NHS. To be fair my illness makes me feel like I've been poisoned, and like I say this has entered my mind before....today had diarrhoea 3 times quite severe. Several dizzy spells, general weakness and feeling very fatigued. But according to my docs and atos nothing is wrong with me.
09-02-2015, 10:28 AM   #9
sabboo
 
Join Date: Jun 2015
Location: hull, United Kingdom

My Support Groups:
On a plus side work was a real challenge today, I think I've sprained my right hamstring (again) and I don't know how I'm going to make it through the rest of the week....
09-02-2015, 12:49 PM   #10
mercbegone75
 
Join Date: Sep 2015
Location: Plymouth, United Kingdom
Hi Sabboo,

The Hair Elements Test isn't available through the NHS. You would have to go on Yahoo! and then join up the Frequent Dose Chelation board like I did.

Once you've joined up, you need to introduce yourself to the group and explain the condition you have with a brief history of how your health has affected you, and how many fillings you've had over time, and any vaccines that you might of had in the past. Then ask if you can have a Hair Elements Test done. You'll have to pay a fee for it, but it's done through the group Sabboo. It's worth it. There's some superb members on there like Brian Mc, Linda and Joe Grane who all have had merc poisoning and are getting better by using the Cutler Protocol.

Do you have alot of gut inflamation Sabbo? I suggest you get some Slippery Elm powder and use 1tsp of the powder in a sauce pan with some water and bring the water to the boil and gradually consume the warm slippery elm powder. I usually consume the Slippery Elm powder like this three times a day. First thing in the morning, then midday and later before bed. It should help you. Go to ebay and put in Now Slippery elm, avoid the capsule form and go for the loose powder form from Now supplements.

See how you go with it. It might help your gut to some degree. Also keep yourself hydrated constantly with water. I would recommend consuming bottled water like Highland spring, because everytime you have diahrrea, you lose essential minerals.

Last edited by mercbegone75; 09-02-2015 at 02:26 PM.
09-02-2015, 12:58 PM   #11
mercbegone75
 
Join Date: Sep 2015
Location: Plymouth, United Kingdom
Thanks for the reply. I only had my first filling about 2 years ago and it fell out shortly after lol. I have thought about heavy metal poisoning causing this in the past but no idea how I would get this tested. How do I go about getting a hair elements test done on the NHS. To be fair my illness makes me feel like I've been poisoned, and like I say this has entered my mind before....today had diarrhoea 3 times quite severe. Several dizzy spells, general weakness and feeling very fatigued. But according to my docs and atos nothing is wrong with me.
Unfortunately Sabboo we're dealing with a health and benefit system from hell!. Doctors just aren't trained to understand these conditions. You could say they are kept in the dark about how these syndromes affect us. Maybe the system likes to keep us unhealthy.
09-02-2015, 01:36 PM   #12
Guest30
 
Join Date: Jul 2015
Location: London, United Kingdom
At last something i can relate being fobbed off by doctors and concerns about amalgam n mercury how you get through to doctors i don't know is it worth having a troublesome tooth removed ?
09-02-2015, 02:17 PM   #13
mercbegone75
 
Join Date: Sep 2015
Location: Plymouth, United Kingdom
At last something i can relate being fobbed off by doctors and concerns about amalgam n mercury how you get through to doctors i don't know is it worth having a troublesome tooth removed ?
Hi Antias Paul

First off, what's the tooth problem. Do you have root canal with amalgam under it or just a tooth filled with amalgam.

What symptoms do you have?
09-02-2015, 02:31 PM   #14
Guest30
 
Join Date: Jul 2015
Location: London, United Kingdom
I've had problems with teeth since around 1984 when i was aged about 17 my top row had rotted so had a great deal of restorative dental work done caps crowns bridges around 1985 i went to live in spain and not long after developed the most painful headaches I've ever known at that time the only thing i could link them to eas a bottom left tooth that pains along with the headaches had a dentist in spain work on it and treat with antibiotics didn't help much and heads went away on their own nothing again until 4 or 5 year's after i returned to London again out of the blue the headaches returned though much worse than the first time again that same tooth seemed the culprit so had it cleaned out and impacted the day after the headaches subsided i collapse after a right sided rupture and come round with the abdominal distension which has been constant since the headaches were diagnosed as cluster headache around 2003 that same tooth still hurts any time i have headaches which are mostly one sided the back of the tooth taste metallic
09-02-2015, 02:54 PM   #15
mercbegone75
 
Join Date: Sep 2015
Location: Plymouth, United Kingdom
I've had problems with teeth since around 1984 when i was aged about 17 my top row had rotted so had a great deal of restorative dental work done caps crowns bridges around 1985 i went to live in spain and not long after developed the most painful headaches I've ever known at that time the only thing i could link them to eas a bottom left tooth that pains along with the headaches had a dentist in spain work on it and treat with antibiotics didn't help much and heads went away on their own nothing again until 4 or 5 year's after i returned to London again out of the blue the headaches returned though much worse than the first time again that same tooth seemed the culprit so had it cleaned out and impacted the day after the headaches subsided i collapse after a right sided rupture and come round with the abdominal distension which has been constant since the headaches were diagnosed as cluster headache around 2003 that same tooth still hurts any time i have headaches which are mostly one sided the back of the tooth taste metallic
Sounds like mercury leeching to me. I had the same problems with my amalgams. In 2010 I had the worse symptoms of mercury poisoning. Eye twitching, extremely bad tinitus, heart pulpatations off the charts, slight hand tremor and signs of extreme anger coupled with stress off the charts and aniexty with a tension band around my fore head which I had for most of the 1990's, but only very mild. I also showed signs of early schizophrenic behaviour. My amalgams were slowly killing me. I'm beginning to wonder whether people with mental health conditions like schizophrenia have undiagnosed mercury poisoning, it's a possibility. A relative of ours had many mental health issues throughout his life, and a load of amalgam fillings in his mouth. He died of Parkinson's two years ago. Another neuro-degenerative disease that's implicated to mercury.

There's no scientific evidence to suggest this, but I do often ponder this. You seem to be in a certain bracket of people where your dental history makes me suspicious. If you did consider going down the path of considering having a dentist look at your teeth I would recommened Munro Hall in Bedford. You would need a dentist like Dr. Graeme Munro-Hall to look at your dental situation and consider also the cost of such extensive dental work that would need to be done. It's a possibility that you could book an appointment with him and see whether he can help you. He's the only dentist I would trust in the UK.
09-02-2015, 03:21 PM   #16
Guest30
 
Join Date: Jul 2015
Location: London, United Kingdom
Coincidently I'm due to have my top row of remaining teeth removed from next week 7 all in all then replaced with a full denture thankfully i have a very good dentist and I'm gonna ask him to take that bottom tooth out as for evidence think there's probably quite a bit of new evidence springing up lately linked to a lot of diseases makes you wonder though what else they're hiding from us
09-02-2015, 03:37 PM   #17
mercbegone75
 
Join Date: Sep 2015
Location: Plymouth, United Kingdom
Coincidently I'm due to have my top row of remaining teeth removed from next week 7 all in all then replaced with a full denture thankfully i have a very good dentist and I'm gonna ask him to take that bottom tooth out as for evidence think there's probably quite a bit of new evidence springing up lately linked to a lot of diseases makes you wonder though what else they're hiding from us
If there's any mercury involved Anitas Paul, make certain the dentist uses a ruber dam and alternative air supply. Yes. I agree with you. It's funny how dentists used the term "amalgam" instead of "mercury" filling throughout the many, many decades to confuse the public into the notion that amalgam was perfectly safe to use. The British Dental Association in the UK still say that mercury, whoops!, I mean amalgam fillings are perfectly safe. I would say that we have a load of Mad Hatter's running the (BDA). Maybe some of them are mercury poisoned??? or just covering there backs like the Government's who say that there's no health risk to the general public. Or maybe the authority bodies just like killing us off. Either way, I wouldn't believe a word that comes out of any Government body to do with health matters or anything else....
09-02-2015, 03:48 PM   #18
Guest30
 
Join Date: Jul 2015
Location: London, United Kingdom
same goes for fluoride in toothpaste a little like domestos kills all known germs dead and just about everything else it comes into contact to after many years of symptoms i pray it's not so late for me to reverse thing's as there's a place i need to get to
09-02-2015, 04:06 PM   #19
mercbegone75
 
Join Date: Sep 2015
Location: Plymouth, United Kingdom
same goes for fluoride in toothpaste a little like domestos kills all known germs dead and just about everything else it comes into contact to after many years of symptoms i pray it's not so late for me to reverse thing's as there's a place i need to get to
Yes. I remember a few years ago that Southhampton had there water fluoridated. 75% of people in the area said NO, but the NHS through the stratigic health authority said YES. So now we have the entire area of Southhampton fluoridated or should I say medicated with sodium fluoride in the drinking water. Better than going to the gas chamber's I suppose. A slow death from a neuro-toxic poison in the drinking water,and no reverse osmosis filter will get it out, unless you can get your hands on an industrial filter system. I think that if you do get your teeth done, you need to make certain that the dentist does it right. Unfortunately for me I had a mercury free dentist remove them with the proper precautions, but he also put's amalgam in as well whilst working for the NHS at the practice I use to go to. Many private dentists in the UK will say they practice metal free dentistry when in fact they are also working for the NHS putting highly toxic fillings into people's mouths. It's a lucrative business model to be in. But to be honest, I wouldn't want to be a dentist. All that exposure to mercury dust constantly throughout the day. No wonder there's dentists with mental health probs and ill health. Breathing in mercury dust is bound to result in some sort of illness down the road.
09-02-2015, 04:13 PM   #20
Guest30
 
Join Date: Jul 2015
Location: London, United Kingdom
I trust my current dentist a lot more than the one i had at guys hospital made a temporary front top denture sound nigh impossible then my dentist up the road made a temp denture that fit's perfectly in a week was reffered to kings for the top teeth removals never did hear back so he's gonna do it himself with a full top denture and the removal of the lower tooth there's not much in the way of metal work left in my mouth after that so I'm good with it
09-02-2015, 04:20 PM   #21
mercbegone75
 
Join Date: Sep 2015
Location: Plymouth, United Kingdom
Glad to here that you are getting there with the dentist. May I wish you luck on your journey to better health. All you can do is try your best. That's it! It's a hard and difficult road to travel down.I've lost friends and feel alone most of the time, but I just have to stay positive and let the human spirit shine through. Good Luck!
09-02-2015, 04:32 PM   #22
Guest30
 
Join Date: Jul 2015
Location: London, United Kingdom
Advice is very much appreciated much thanks for that
09-02-2015, 07:10 PM   #23
AJC - Australia
Senior Member
 
AJC - Australia's Avatar
 
Join Date: Jul 2013
Location: australia

My Support Groups:
have a read of this….it is brilliant.
titled 'dont listen to your doctor' and written by a CROHNIE.
http://mrescombe.blogspot.com.au
09-02-2015, 08:08 PM   #24
Guest30
 
Join Date: Jul 2015
Location: London, United Kingdom
I have a doctor now who is listening don't smoke do drugs or waste money i have someone far away i don't have kid's nor at my age do i want any that's selfish for many reasons not just the fact that by the time they are in teens they will have to put up with the jibes of is that your grandad if after tomorrow my consultation with my doctor goes well and my meds I'm waiting to start oxygen for the headaches tripitlynes and cadnesten for bp and headaches gets symptoms under control i will off back to south africa as soon as possible as i said thanks for the advice appreciate it but all the advice given makes me want to get back to durban all the more until then i will keep fighting to get better
09-03-2015, 09:30 AM   #25
sabboo
 
Join Date: Jun 2015
Location: hull, United Kingdom

My Support Groups:
Wow I've really started something here, perhaps you should set up a separate thread for mercury poisoning as it seems to have lots of people commenting on it. As for me there is no chance I have got poisoning from a filling. That doesn't mean I got poisoned some other way or by some other heavy metal. All the symptoms I have say it is mercury or lead or some such nasty. But it's also the symptoms of crohns extra intestinal nastiness.
09-03-2015, 07:11 PM   #26
mercbegone75
 
Join Date: Sep 2015
Location: Plymouth, United Kingdom
Wow I've really started something here, perhaps you should set up a separate thread for mercury poisoning as it seems to have lots of people commenting on it. As for me there is no chance I have got poisoning from a filling. That doesn't mean I got poisoned some other way or by some other heavy metal. All the symptoms I have say it is mercury or lead or some such nasty. But it's also the symptoms of crohns extra intestinal nastiness.
We'll, i'll have to disagree with you on this one Sabboo. Any mercury filling will contribute to poisoning either sooner or later. People like myself are highly sensitive to this evil neuro-toxic metal, whilst others never show adrenal, thyroid or gut problems, but often succumb to mercury induced posioning further down the road when they reach the ages of 50, 60 or 70's with Parkinson's or Alzheimer's. In the meantime, get some slippery elm powder. That should help your gut problems. Follow what I said in the previous post about how to prepare slippery elm. I find Yarrow good too. You can buy a non-alcohol liquid and dilute the drops in water.

Good luck!
09-05-2015, 01:48 PM   #27
sabboo
 
Join Date: Jun 2015
Location: hull, United Kingdom

My Support Groups:
How can you say I have mercury poisoning from a filling when I don't have a filling containing mercury? I understand it's in the environment, I will try slippery elm at some point. My doctor has put me in anti depressants and I want my body to get used to them before I try anything else new. In other news my doctor has referred me to see the chronic fatigue team.
09-05-2015, 03:53 PM   #28
mercbegone75
 
Join Date: Sep 2015
Location: Plymouth, United Kingdom
I didn't know as to whether you had a white or a metal filling. Anyway's, it's inconsequential now. Yep! Do try the slippery elm down the road. You may have to drink quite a bit water whilst taking it, but do try it.
03-19-2017, 09:46 AM   #29
sabboo
 
Join Date: Jun 2015
Location: hull, United Kingdom

My Support Groups:
Well it's nothing to with Mercury or any other heavy metal poisoning me. A food intolerance test has shown me that egg and cumin and msg has caused my body problems. Although the test didn't look for aspartame cutting that out if my diet too has stopped the arthritis I had been suffering. The test I took was about £20 on either wowcher or groupon. I forget which as was a few months ago. You send a lock of hair and they send you the results, which in this case has transformed my life.

Reply

Crohn's Disease Forum » Your Story » 10 years fobbed off.
Thread Tools


All times are GMT -5. The time now is 01:00 AM.
Copyright 2006-2017 Crohnsforum.com