What people with IBD should know

I am often asked, “What would you tell someone recently diagnosed with IBD?” So, this is what I think you should know! Look out for clickable links in this blog, leading to more detailed information! For many, a definitive diagnosis is a massive relief after a long period of being unwell. This does not mean that acceptance is easy, after all, you have just been diagnosed with a chronic disease which has no cure. Do NOT panic, we’ve got this, life is not over! It is worth pointing out that no two IBD patients’ lives are the same. The disease does not always manifest in the same way, and the fact that a treatment works for one person does not mean it will work for another. This makes IBD notoriously difficult to treat. That said, some IBD patients may have one flare, find the right medication straight away and never have another, and that is fantastic! For the rest of us, being diagnosed with Crohn’s Disease or Ulcerative Colitis may mean some lifestyle changes and som

Do you feel you get enough support from your healthcare team? Blog series in celebration of World IBD Day - raising awareness of Inflammatory Bowel Disease

This week, to celebrate World IBD Day on May 19th and in aid of raising awareness of IBD and how it affects sufferers not just physically but mentally too, I will be releasing a series of blogs with contributions from the IBD community.

Blog 3

I often hear horror stories about the treatment being received whilst in hospital. Quite frankly some of these cases could easily be submitted as medical malpractice reports! But, on the other end of scale, you wouldn’t still be here to read this blog if they hadn't kept you alive, even if you have been mentally scarred for life in the process.

I think some respect is due to those in the medical profession that DO give a shit, the ones that work in the industry because they have a genuinely caring nature, because they want to make a difference. I’ve met a few and boy do those guys make the hospital stays more bearable! There’s a lot to be said for a good old fashioned bedside manner.

I often wondered why someone would ever think, ‘when I grow up I want to be a colorectal surgeon’ and then I did some research in to the pay rate and NOW I get it!
*Cough* £75,246 - £101,451 PA *Chokes*
My response:
On a personal level I’ve had my fair share of good and bad. After my first surgery I got sepsis because I hadn’t had a drain fitted which meant I had to be opened back up and cleaned out, prolonging my recovery massively as I had to wait even longer to eat, lost more weight and ended up on TPN. I lost all muscle mass and had to learn to walk again. I’ve been refused help and had nurses look down there nose at me because I was 19 and should have been able to look after myself, even though after losing all of my muscle I couldn’t physically even sit myself up. I’ve been belittled by an anesthetist because my reversal was clearly “purely cosmetic” and I was sent home with inflamed (after surgery) intestine resulting in screaming in pain, massively distended stomach and covering my house in vomit followed be readmission for an NG tube and to ‘wait it out’.
I’ve been sent home with high potassium levels and not been told, resulting in me fainting and nearly having a heart attack.
I’ve been given an epidural which didn’t work and made to feel stupid by a nurse telling me that I’d just had surgery, of course I was going to be in some pain…(because I haven't done this five time already) when in reality I had just had open surgery, a resection and pouch graft and was getting zero pain relief.
I’ve been colossally overdosed on morphine and nearly died because of it, at the same time as another nurse accidently did her conversions wrong and tripled my steroid dose, making me pretty insane and my healing process much slower and delaying my discharge home because they needed to observe me while the dose was bought back down to a safe level.
I’ve been made to feel like some kind of crack head by a doctors when I’ve asked for higher pain meds. I went from Codeine to Tramadol and by the time I had surgery I was having Tramadol and Para’s every 4 hours and wearing a Butrans patch but every time I wanted a repeat they made me go in to order them! I also had a doctor mess up conversions and spent a whole weekend rolling around the house in agony because the meds werent strong enough!
And on the other hand there has been a nurse who called the doctors and had me whisked straight off for X-rays as soon as she arrived on shift, after I’d been ignored by the other nurses on the ward for the previous 18 hours and ultimately saving my life as this lead to the discovery of the sepsis before it was too late.
I’ve had a nurse wash me and make me feel as comfortable as it’s possible to feel as another person showers you. I’ve had a nurse that only had to smile at me to make me feel better and a nurse that let me sneak off drips to go for a cigarette, even one that cuddled me as my epidural went in and kissed me on the forehead. My IBD nurse is lovely and is also a great supporter of the campaign  It’s the little things that mean a lot when you’re feeling poorly so a cheery voice, the genuine “how are you feeling?” and the cheers because “you look less like shit today” make all of the difference. 


Your responses:
No. Mostly due to the fact it took so long to get diagnosed. Then when I did another 2 years for a more thorough examination despite telling them of ongoing problems. I think they need more specially trained consultants in this area
-              Lorna Beeke

I feel like I don't receive any support from the NHS what so ever. It's taken years for me to have the appointments that I have had recently, and they were a result of me bleeding. When I go to the doctor's I'm fobbed off with medication and nothing more. I've not been spoken to about an IBD nurse or a dietitian. One doctor told me to lose weight and my symptoms will disappear, I've also been told that it's in my head. What I know is what I've researched on the internet or seen in this group.
-              Jennie Maccoll

My health care team aren't the best and my consultant isn't that good, when I was diagnosed he didn't tell me anything about IBD and just asked the nurse to give me a NACC information pack (which was very good!) I'm lucky in that I do have two IBD nurses too who I can get in contact with if I need to, I haven't had to contact them yet but it is comforting knowing that they are there if I should need to contact them.
-              Jane Goben

Now? Yes, absolutely! But when I was first diagnosed it was horrible. The Dr was a joke. Would leak my info to my parents, would rush me in and out with no time to ask a question and never give me the meds I needed to get better. I left him and never looked back. I was told to see the team at the University of Chicago and WOW they are great. I can ask them anything. Take my time and it's never a rush. Call them anytime and I always get a call back. When I was at my worst they were there for me and got me in for a EM ileostomy. Saved my life. I love them there and I honestly believe the feeling is mutual.
-              Brian Jones

Yes I feel that the healthcare has been very supportive over the past year of illness.
-              Charlotte Lewsley

No I feel i don't get any support from them at all, I have to chase appointments up and I've not seen my consultant for about 2 years . I saw his registrar but what she said and what my notes say are two different things. 
-              Louise Rutherford

No I don't feel we get enough support from our healthcare team because it takes far too long to be diagnosed. When diagnosed you’re not told about other symptoms we may get and to look out for eg. Isolation, incontinence, blockages, fissures, fistulas, abscesses bleeding from back passage isn't always piles!  IBS and diet is too commonly used and not investigated properly.
It's not just inflammation of the bowel.
We're left suffering at home in between appointments.
We need more gastro nurses as they are our triage to help assess whether we need to be seen by the specialists sooner. Also when we do see the specialists they go on our blood/stool results instead of our symptoms! Some of us do know our bodies best.. I've proven specialists wrong before now eg. Perforated bowel, strictures caused by adhesions and rectal prolapse!!
And just because someone had weight on them because their bodies been in starvation mode so many times doesn't mean that their insides aren’t damaged, diseased and in severe pain.
-              Dimple smiler
I would benefit from an IBD nurse without a doubt, had i had adequate knowledge of what living with a chronic disease would be like when first diagnosed, I'm sure I'd of spent less of the dark days. Just someone to spend time , someone for me to explain my concerns/symptoms, someone helping / guiding me on my journey, 'riding the waves' with me on the bad days. Someone to tell me 'it's going to be okay' 10 years ago when first diagnosed I just had leaflets and told I had IBD, I searched Google and felt so scared, alone and fear of what I may have to face
-              Gemma Willingham

I don't get enough support for my mental health I feel nope.. but my ibd doctor /nurse seems to be doing something but at a very slow pace.. It’s so frustrating! As for my age.. I think more support could help me, and make me feel better as at the minute I never go out as I'm poorly all the time n leads to having no confidence to do things as needing the loo also.. All the time, I'm 17 years old.
-              Jaz Bingham

Yes I do in a short answer. My case isn't anywhere near as severe as some (yet, thank god) but the way I was diagnosed and have been supported subsequently has been very good. My consultant explains things to me in a way I understand which then also makes me feel comfortable to ask questions. My IBD nurse is easy to contact and yes I do have to wait a short while for a reply but I know and understand they have a heavy case load. I've never had to wait an extortionate amount of time. My GP is also very aware of my situation and is also very helpful to me if I have to see them. I also appreciate the fact that sometimes they cannot answer my question and they will then tell me to contact my nurse etc.
-              Nicola Bullock

Yes and no. From stoma nurses yes, I know I can phone them anytime. From consultant no, in the last year I have had 3 appointments cancelled. To be fair I *touch wood* have been ok but would still have been nice to see him to keep him updated etc, although I guess he can read my notes!
-              AJ Mooney

For the physical side of things I really can't fault my care. IBD nurse is brilliant. The mental effects are a completely different ball game though. Struggling to be put in touch with the right people and get any support is a full on battle.
-              Dave Carden

I think I'm one of the lucky ones in this case. I know there are a lot of people who struggle to get hold of their consultant and IBD nurses. I can either email/phone my team and 90% of the time I get a response the same day but its 99% usually within the week I send it. There are also times my IBD nurse will occasionally call me up just to see how I’m doing! I’ve got two IBD nurses and they’re both lovely and really caring, love to know how you’re doing when I see them and always asking if there is anything they can do to help.
The same could be said about my actual consultant too, she has kind of turned into a mother figure for me when she looked after me in hospital three years ago and since then we’ve bonded. Hugs when I go to appointments with her that kind of thing! It’s great!
-              Finlay Hards

I am very fortunate with my healthcare team, well my hospital team anyway. They have always been very understanding and supportive and have offered me telephone advice and support when I have needed it. My consultant is very open and honest with me and has always said that if I ever feel like he is not helping me, to tell him. He is really good at explaining everything in detail and often draws pictures to help me understand the technicalities. My nurses are always available and happy to talk and take the time to understand my individual case and needs as it is not straight forward Crohn’s. I am very aware that I am extremely lucky with the care I receive now as I know this isn't the case for everyone. I have experienced poor care for the first 10 years of my struggle with IBD, the issues with misdiagnosis and being made to feel like it is all in your head. It is sad to think that so many people are going through what I went through.
-              Sarah Akers

Yes, but they keep messing my tablets up and they make me have stupid blood tests.
-              Vicki Rowlands (daughter)

I suppose it’s another one of those ‘luck of the draw’ situations but that shouldn’t be the case and this makes me very sad. It seems to be a bit of a postcode lottery!

Thanks to all of those who have contributed. Your time and effort is very much appreciated!

Come back tomorrow as we find out the responses to the question ‘Do you think IBD has made it difficult in terms of dating /sustaining relationships?’

Go back to blog 2... covering relationships with family and friends