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Banging My Head Against A Brick Wall

Hi,

Last January I underwent emergency surgery to defunction the lower segment of my colon and fit a loop colostomy. This was 6 weeks after the delivery of my second son. I was desparately ill with Crohn's while pregnant but nothing was done; I lost weight at a rate of 1kg per week for the last 4 weeks of pregnancy and had my baby delivered 4 weeks early by c-section. 10 days prior to my emergency op I saw the specialist IBD nurse in clinic who told me that, despite my bowels not opening for nearly 4 months (I have consitpating Crohn's), constant bleeding, pain, horrendous pain, hot flushes and night sweats, there was nothing wrong with me.

At the time of surgery my CRP was 365, :yfaint: I think I had peritinitis and I was in heart faliure. The surgeon said that it was the worse case he'd ever seen and it was so diseased that it was dangerous to try to remove it, as I would have bled to death. The plan was to defuntion the worst part, give the disease time to calm down and then remove the damaged parts of bowel, leaving a permanent stoma. I was put under the care of the top surgeon and have been waiting for surgery to remove the damaged bowel ever since.

I was initially put on prednisolone, then humira which I was on until Christmas when I was diagnosed with a really bad step/straplococcus infection. I have been on nothing but paracetomol since Christmas, and only allowed tramadol in the last week.

I complained to the hospital about my lack of care during pregnancy, and from doing so was horrified to discover that 'nobody believed I was ill', :eek: that a peri-anal fistula had formed during the pregnancy which was tracking towards my reproductive system, and that I have a stricture and disease at the termil-ileum.

My condition stabilised over the summer but started to deteriorate in late October. In November my surgeon said the need for surgery would be symptom-led. A colonoscopy was done in early January which showed active disease, old disease and polyps. I was told it would be too painful to bear and therefore I must have a GA. However due to my strep sinus infection I was given a spinal block. I had to wait until the 5th of March to get the results, although I've not actually been told the findings, I only know about the polyps because I saw them! I was told that all of the de-functioned bowel must be removed (including tail-end) and the termil-ileum but they weren't sure how extensive the disease was and it was likely that they would take out the whole colon. He said that, because of the fistula it was unlikely that the tail end would heal properly and would cause me ongoing problems and that I would just have to wear a pad. I could expect to stay in hospital for at least two weeks as it is a big op and I am a complicated case.

I have been suffering with persistent bowel infections in the defunctioned bowel since February, passing pus, blood and mucus. I have been housebound because of this and pain since before Christmas. I haven't been able to take my 5 year old son to or from school for months now. The pain in my pelvis is constant and unbearable. I have horrendous mouth ulcers which are like big balls in my mouth, and ulcers on the stoma. I can't bear the night sweats because I was so ill with them last year. It reduces me to tears and I am struggling to cope.

Over the last 4 weeks I've had large and extremely painful lumps appearing around my tail end, in my buttocks and underneath. I email my GI consultant symptom updates and when I saw him in clinic earlier this month he said that although I've had abnormal blood results (though he didn't specify what), he wasn't too concerned and I didn't look ill and shouldn't be taking pain killers. He said he'd request an urgent MRI scan, but his request was likely to be turned down (?!)

Thankfully my GP has been sympathetic and I am on slow release tramadol, with regular tramadol top ups. I was given a date of May 22nd for the surgery, but found out from the x-ray department (who were arranging a PICC line to be put in for the surgery) that it has been postponed to the 29th of May. I rang my surgeon's secretary to confirm this and was told that I do not have cancer, am therefore not important, and must wait my turn. I've been waiting for 14 months. My GP said this morning that my condition is critical and that she understood I was a priority case, however she hasn't contacted either of my consultants to express her concerns. She has said I need to see a new GI after the surgery.

I don't know what to do, is it just that I'm not coping well and I'm not that ill, or am I being ignored by my consultants? I feel like I'm banging my head against a brick wall, nobody's listening to me and I don't want to be on the verge of death like I was last year. I'm 29 and I have a family to look after and I feel like I'm losing my mind.

Any advice would be greatly appreciated,

Angela x
 
Angela-
I really dont know what to say. I dont understand your medical system. When I was sick and not yet diagnosed I ended up in the emergency room everynight for just about three weeks. They finally took me seriously and thats when they started moving. Its easy for your Dr to tell you not to use pain meds. Ask him if he would like to pass a kidney stone without pain meds!?!

I hope something changes very soon for you!!

Lauren
:ghug:
 

David

Co-Founder
Location
Naples, Florida
Hi Angela,

My god. What the hell is happening over there? I know the ball gets dropped on occasion, but it sounds like the ball has been dropped, kicked over the fence, and then punctured just to spite you. Wow.

Do you have anyone that can advocate for you?

*hugs*
 

Trysha

Moderator
Staff member
Hello Angela,
It is absolutely appalling and unacceptable treatment (or lack thereof) that you have been suffering through.
Do not continue to accept this state of affairs.
Are you able to travel to the Leeds Infirmary--- theya have agood GI set up.
Also St Marks Hospital In London specialises in diseases of colon and rectum.
You must be seen by properly skilled and experienced people.
There is a British Crohns society that may also be able to help you.They have a website
and an area for people to ask advice.
Astra who is on this forum lives somewhere near you,she may have some ideas
Don't let this continue to happen to you.
Feel better soon
Hugs and best wishes
Trysha
 
Good God Angela what a story, I cant believe they are still telling you that you're not unwell!

It really sounds as though there's no one person taking charge of your care, can you get a second opinion with another GI? Or at least another Surgeon? Great advice fromn Trysha about contacting your Chron's society, maybe someone can suggest a doctor who knows wha they are doing!

I lived in the UK for 8 years, was diagnosed last year back here in NZ. HAve always thought that if this had to happen then at least it didn't happen when I was living in London, reading your post has confirmed that! Big hugs and I really hope you can get relief soon xxx
 

Trysha

Moderator
Staff member
Hi Angela
The email address for the crohns and colitis organisation is:
Info@Crohns and Colitis.org.uk
I am sure you will soon get some help from them
Trysha
 
That was something I can recall hearing, I didn't look ill. It was mentioned a few times at doctors offices when younger, and by family and friends a few times too. Always a bit odd to hear. What should an ill person look like? Should I moan and groan often around others, I would joke. The other comment that would irk me was, buck up kiddo you'll have to learn to live with it. Live with it? How is this living? Not being able to participate in society, and with family is tough. It's not much of a living having a severe gut issue.

I wish doctors where more responsive and caring to patients. That seems to be a failing of modern medicine, in my opinion. I think it comes from our 3rd payer system, the lack of responsiveness. Here in the US many have insurance that pays most costs. For older people it is the government that covers charges. And since payments are not direct to physicians and hospitals from patients there seems to be less effort placed into customer service. Anyway, from my experience it can be frustrating to deal with. It's an area in need of improvement.

I'm glad for the internet. It's nice to be able to visit forms like this, see how others live, how problems are dealt with, find solutions. I wish this sight and other medical learning places were around 20 years ago when I became very ill and began my journal dealing with an IBD.

I don't have many suggestions. I suppose the main question that comes to mind is have you experimented with diet and supplement ideas? Those are items that you can try on your own - the SCD mentioned here on the sight in the diet section, vitamin D3, fish oil, probiotics for constipation, taking magnesium, avoiding diary too might be helpful.

Along similar lines, these two articles by Dr Mark Hyman is something that I've believed for awhile, that the use of social media such as this sight can be helpful in treating our IBD conditions. From Dr. Hyman's experience it seems that internet medical help might lead to improved chances of finding cures.

"Can Social Networks Cure Disease? Part I"

http://drhyman.com/blog/2012/04/20/can-social-networks-cure-disease-part-i/

&

"Can Social Networks Cure Disease? Part II"

http://drhyman.com/blog/2012/04/20/can-social-networks-cure-disease-part-ii/
 
Hi Angela, I have been thinking about how best to advise you and think I have come up with some suggestions.

First, for now forget the GI. You're unlikely to get a new one in time or have your current one suddenly start caring about you.

I would put a complaint in about how you were treated on the phone by Consultant's secretary (no need to worry about facing her in future since you will be looking to change GI's after surgery right?). Point out you are very grateful indeed you do not have cancer, and do not expect to queue jump, but you have been in the queue for 14 months already and you have been housebound since Christmas with the pain, passing of blood and pus etc. You do not think her attitude towards you is acceptable.

I would also complain about the Surgeon (a man right?) telling you you would just have to wear a pad. That is insensitive, and it seems no effort was made to educate you fully on what to expect after the surgery- "wear a pad" is insufficient after care advice.

Tell your GP you appreciate her support, but that needs to translate beyond issuing perscriptions and into phoning the Hospital for you.

Perhaps also contact your MP about the poor care you are getting, phone their office and tell their staff member it is an urgent case and not something that can sit on their desk for a few weeks. Mentioning the passing of blood and pus should speed things along nicely.

I know how hard all that is when you are sick, but sometimes we either fight for ourselves to get help, or leave it to others and get no help at all.

Finally, I would after the surgery find another Hospital and another GI to go to that you are happy with. Then write to the Cheif Exec of current Hospital and go into detail about why you have had to seek care and treatment elsewhere. Make some noise about clinical neglect and reporting their Hospital to the PCT or even the Minister for Health.

When this is all over, and you are better and feeling stronger, I would take legal advice about suing the Hospital, it is shocking how you have been treated.
 
Thanks everyone,

I will definitely contact the Crohn's society to see who they can recommend. My GP won't let me get a second GI opinion until after the surgery because the nature of the surgery won't change and she thinks it will delay the already overdue surgery. The surgeon is a specialist from Salford Hope and is the best in the hospital (apparently). People speak highly of his work and he has a reputation for being careful and as I have had very bad experiences in the past (in St James Leeds) with uncareful surgeons (resulting in huge problems with adhesions, a total obstruction of the bowel and losing my right fallopean tube and ovary), so I think my current surgoen is probably the best option for me at the moment.

I have tried diet and supplements over the years (I was diagnosed aged 13), and found it to a major help with the disease. I've been taking an elemental diet over the last couple of months to try and maintain my weight but the problem in this instance was that the disease is now so bad, it's beyond control and help which is why the lower colon has to be removed.

I am strongly leaning towards writing a second complaint after the surgery, and as for legal advice, we've already sought advice for their negligence when I was pregnant and are in the early stages of legal action! I wouldn't have thought this would be the cause of my deterioration of care as the hospital as yet are unaware of it. The PCT were involved in my original complaint last August and the hospital trust replied in December saying they were very sorry, opportunities had been missed and they should have taken a blood test at the very least at the time of my appointment with the IBD nurse in January (when my CRP was >200). However, it's become very clear that no lessons have been learnt. I had to ask for this IBD nurse not to be involved in my care, but I still have to encounter him in clinic waiting rooms. I haven't had an apology from him. There is a whopping lack of communication within thier department and nothing has improved.
Because of this I asked my GI for his email address so that I could contact him if my symptoms changed/worsened. He agreed and said to keep him updated, weekly if necessary and he would see me in clinic when needed. This seemed to work until Christmas and then at appointments he started saying 'how did you get this appointment?' errr, a letter came through the door??!

Soretum you've hit the nail on the head, I have no one taking charge of my care. I asked my GP and she said I should email the GI. I asked him to his face in clinic and expressed my concerns that I was having to push for my own care and that it shouldn't be me in charge, as I have no medical knowledge. He said it should be this way, as we should be 'symptom lead'. I don't know how they can expect someone in a poor state of health to have to organise their own healthcare, it's absolutely ridiculous.

Thanks Stargirrl I will talk to my GP, it's difficult because she is the only one on my side and who shows me any compassion, so I don't want to offend her by telling her to step up but it needs to be done, as the hospital certainly aren't listening to me. I am seeing her this week and will let you know what she says x
 
Hi Tinkerbella
I had to join and post on here because I know a little of what you're having to handle with Royal Preston Hospital. I don't have Crohn's but I do have ulcerative colitis and I see the same IBD nurse. He did one of my colonoscopies and I have never been in so much pain in my life. I've had them before and had no prob (up at Lancaster). He then had the cheek to have a go at me about making him stop the procedure because I was in agony. They were very rude and made me feel ridiculous about the fact that I always puke up the bowel prep stuff, even though I asked for something different. I find the whole team very dismissive - I know they're busy but the consultant (Sharma) himself is quite decent with me. They don't talk to each other obviously.

The only consolation is, at least you're not at Lancaster Royal Infirmary because it is much, much worse.

Feel better x
 
So my date for surgery has changed from the 29th of May to the 28th and back to the 29th again. After getting quite fed up of not even having had written confirmation that the surgery is going ahead I rang the surgical waiting list yesterday, who said 'oh yes, your letter was scheduled to be posted today.'

I emailed my consultant and told him that he should have more compassion for me instead of telling me because the worst of my disease is in the defunctioned bowel it doesn't matter, I don't look ill and I shouldn't take strong pain killers! He replied to say he was sorry I haven't felt reassured by him. I took the email to my GP who rang him up. Her first words to me afterwards were 'you need a new doctor.' He hasn't been in contact with my surgeon, he admitted I am in a terrible state and that the mental strain must also be horrendous, that he hasn't known what to do. So that's why he's been off with me. She also said that I was the worst case of Crohn's that they'd ever seen at the hospital and surgery. She said that I need a tertiory care centre (which she'd asked my consultant about before, to which his reply was 'you're not ready for a world expert yet'), and is looking at consultants in Manchester.

So while I haven't had any symptom improvements, I am feeling brighter mentally as having the admission from my consultant that I am really unwell has taken away the feeling of constantly battling and getting nowhere.

Also last year when I was in hospital it was horrendous. I had blood and mucus pouring out of my tail end which I just didn't expect because of having the stoma fitted. Now I'm having it all removed I don't really know what to expect and it would be nice to be aware of things like that that may happen, so if anyone has had similar ops I'd be really grateful if you could tell me about your experience of it.

12 days to go and counting.... x
 
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