Feel very let down by doctors and family & friends :(

[mcos22]

feel very let down by doctors and family & friends

Hi every one my name is Kirsty and I am 24.
I first got rushed into hospital with severe stomach pain and other symptoms such as temperature and severe sickness when i was 14. As soon as i entered the hospital i was given morphine and anti sickness and was then told i had appendicitis and i would be scheduled for emergency surgery. I did then not see any one until 2 days after. The doctors carried out tests after the flare up had occured and as every one knows, chrohns disease will not show up in simple tests afterwards. I was sent home with constipation.

This pattern happened for years. The doctors suspected everything from infection to cysts on my ovaires and had various tests for them but always came back clear and was told to go home i had no pain threshold. I was so distressed by the treatment i was receiving and those comments.

Finally however, the doctors carried out a simple test on my urine when i was actually in pain and not 2 days afterwards and found i had an extremely high white blood count. This time they took me serious and asked me questions about myself. They soon learned that i had been diagnosed with anaemia and irritable bowel syndrome. Straight away i was scheduled for a barium meal and was told i had crohns disease years after the first time i entered hospital. Hallelujah!

But I have not been given any thing for crohns disease. I have iron tablets for anaemia and just get told to eat healthy. I have now developed other symptoms such as the blood in stools, diarrhoea and athritis in my wrists. But i still have not been helped by the nhs system. I do still get flare ups but will not go to the doctors as i have no confidence in them. does any one else feel that they have been let down by their doctors?

sorry about the moan but i am sat at the computer now as my stomach has just started flaring up and gettin painful so im getting depressed as we speak and therefore i went in search for people to talk to in the same situation as myself. Is there anyone else out there that feels the people around them don't understand the distress crohns disease causes because it isn't a disease people can see? I rarely feel like wanting to go out these days due to the many years of distress and if i get tired people call me lazy and if i say that i'm hurting the comments i get is "you're always ill kirsty". I feel I have no support anywhere.

I've heard this site is an amazing support site. I really hope this is the case and that also i can support other people. would really like to hear from people who actually understand.

Thank you
Kirsty xxx:yfaint:

 

[David]

Hi Kirsty and welcome.

Goodness, I'm so sorry you've been through so much. You poor thing *hugs*

And yes, many of have been let down by our doctors. IBD can be a difficult thing to diagnose but some even drop the ball when every red flag is screaming IBD. With that said, there are also plenty of absolutely amazing doctors out there I wish we could all see. And family and friends, some are wonderful, but some just don't get it. I think it's hard when you've never had a chronic condition to understand what someone is going through.

Ok, with all that said, let's get the ball rolling for you:

1. I realize you've been let down by doctors but you need to demand to be seen by a Gastroenterologist consultant. You have Crohn's Disease and you need to be evaluated by a specialist and given a proper treatment regimen and properly monitored.

2. Demand that they, at the very least, also test your vitamin B12 and vitamin D levels. These are very commonly low in Crohn's Disease patients. And your anemia may in fact be due to low B12. If they're willing to test other vitamin and mineral levels, have them test everything they're willing to do.

Please do this immediately. That you're starting a flare and have bleeding tells me you need treatment. Yes, you may have to fight for proper care, but it is what you DESERVE. You deserve good care. And there ARE plenty of great doctors out there. Fight until you get to one

We're here for you anytime, night or day!

*hugs*

 

[mcos22]

Hi David,
Thank you for that advice. I will definately go see my doctor and ask for those tests. Even though i have had it for so long I haven't actually researched it just got on with that i know that's awful.
Thank you so much for the support i appreciate it soooo much i wasn't havin a moan just vent my feelings out to keep my sanity lol. If you don't me asking what do you have?
Kirsty

 

[kathleenmayb]

Hi Kirsty!!! first of al i TOTALLY understand where your coming from!! i was a national gymnast when i got sick the first time. i was vomiting 20 times a day and was admitted to sick kids for a week and they found nothing. they refused to do a colonoscopy saying there was no way my symptoms could be explained by crohns. (even though i have a family history of it) they sent me home with no real diagnosis. two years later after i already quit gymnastics because i simply couldn't cope with my health, i was admmmited to sick kids again and this time they did a colonoscopy. and what do ya know!! they found crohns. doctors can be sooo incompetent sometimes and it is SO frustrating, i understand. if only they could have diagnosed me and gotten me better when i was fourteen i wouldn't have had to quit my favourite thing in the world, let alone spend 2 years of my life sick without any diagnosis.
as for the whole lack of support from friends and family, i hear where your coming from. i feel so alone in all of this. as much as your friends and family want to understand there is simply no way they could possibly imagine how shitty this disease is and how hard it is to deal with. to them, crohns disease is just a belly ache every now and then. sure they feel bad, but they cannot relate. and like, i don't want to feel like a wimp complaining about my disease all the time, but sometimes you NEED to complain about it.

lucky for you this is a great place to vent when you need it!!! everyone here is so supportive because we understand! pm me if you ever need to chat because the truth is, ill probably need to chat too! lol
best of luck!!!!!!! <3

 

[David]

Vent all you like! I have somewhat regular vent threads here myself. Heck, we have a forum dedicated to it It feels good to be able to vent to people that understand.

I have a form of IBD called Lymphocytic Colitis. It's a form of Microscopic Colitis that can only be diagnosed by biopsy. It definitely sucks and can be terrible if you have a bad case, but Crohn's Disease and Ulcerative Colitis are usually worse. As much as LC has changed my life and as painful as it has been, it's hard for me to imagine what some here go through and it just makes me want to do everything I can to help them.

 

[mcos22]

Hey Kathleen what is pm? so sorry i am so new to this.:confused2:

Oh my god I can't believe how similar your life has been to my life in regards to crohns. I was a full time dancer when i was diagnosed and I never went back. Every time I could not dance every one just thought i was making excuses. It does rule your life.

In regards to family and friends i know they don't mean no harm but you are right. They just don't understand and think it's a belly ache when it's not. There's so many other symptoms involved that they just can't comprehend. For example the other day I finally found out that my athritis symptoms in my wrist is due to crohn's disease. The doctor knew I had crohns disease yet carried out so many tests including tendenitis (think that's how you spell it) and put me on a waiting list for many years time to see a specialist. All of a sudden they've realised that it is my crohns disease. I was really glad because i've been made to feel like a hyperchondriac so then i told my mother that it was a symptom of crohns disease and she just rolled her eyes at me.

My family and friends are amazing but they just can't support you when they know nothing of it and it's invisible to them. I think crohns disease isn't very widely known either in the public. So people aren't that educated on it.

I am glad you finally got diagnosed aswell there's nothing worse than having doctors and nurses look down on you and hopefully you are getting the support and help you need.

Hope to speak again
Kirsty xx

 

[mcos22]

Hi David

Yes i have been reading through some posts and fair play some people seem to have a terrible time of it. I can only say that i admire every single person on this forum and who deals with all these diseases every day.

It is not easy, but they are all doing it with their head held high. I hope i can become like that. They truly are an inspiriation

 

[David]

Indeed, the people here are AMAZING and so inspirational.

And I sent you a PM. I think that's the fastest way to understand what one is

 

[mcos22]

Thank you for the help David I do really appreciate it.
I can imagine it was extremely hard to be diagnosed with lymphocytic colitis. As harsh as it is to say, doctors don't have enough time to fit in all in these days.

 

[David]

I realize this may seem hokey or cliche, but I now realize it was the best thing to happen to me in a long time

But yes, it really sucked there for awhile. But this is your thread, let's talk about you

 

[kathleenmayb]

ahaah yeah I'm new too i joined last week lol! pm is private message. if you go to your profile thing you'll see it wow really a dancer? thats awesome! yeah i cant tell yo how many times I've had to sit out on practise because of my stomach while my friends just went about their gymnastics thinking i was too lazy to do the work. and yes i agree with you the symptoms are invisible to them. but also, at least with me, i was too embarrassed to tell my friends what my real symptoms were, because lets face it, they are gross! lol my friends would ask me why i was in and out of the hospital so much and i couldn't just say "oh yeah well I'm shitting about 250ml of blood every hour so i kinda need to see a doctor about that"........ no thanks! ahah i would just say stomach problems

 

[mcos22]

aw David I've had my vent and advice and support and it's really comforting to know you're not the only person going through it. Because when you're on that downer and depressed, it van feel like it. Like i said i haven't researched anything just resolved myself to it so i didn't even know what LC was. But i'm glad you're through the worst of it i really am.

I personally think a gymnast is a lot better than dancing it requires so much discipline so i applaud Kathleen for that. I literally joined 1 hour ago it's all so much to take in. I can see why you'd struggle telling people those smptoms. I had more of the pain and sickness to start off with so it wasn't embarrassing compared to you. and now i just say to friends and family oh i got a crohns thing. So much easier. Imagine if you had said that to friends though their faces would have been a picture

 

[xJillx]

Hi Kristy and welcome! I agree with David; you need to be more proactive and demand treatment. The fact that only more symptoms have developed is most likely a sign that medication is certainly needed. I know it can be frustrating dealing with doctors, but you need establish a relationship with a GI and discuss your options.

I sure hope you can begin treatment soon and you start to feel better.

 

[rosiebush]

Hi Kirsty,
I also feel certainly let down by our doctors. And now the hospital.
My daughter who is 18 was diagnosed last week with Crohns. The way they told her was unsympathetic, unconsiderate and with little compassion.
We are in limbo with no treatment, advice or help. But was told to do internet research. Such a terrible bit of advice. Yes the internet is full of valuable info and resources, but its also full of frightening info.
I want to know what type of Crohns my daughter has, and how to help her manage it, and what treatment she needs.

I've got in touch with my daughters gastro's and i'm insistin she is seen by himself and a dietition before Christmas.
Today i actually spoke with the patient liason advice to complain at how my little girl, my baby, was given her diagnosis.

I agree with others, You need to see a gastroentologist doc and a dietition. Your Crohns should be managed properly under medical guidance.

Rosie. X

 

[hannah-rose]

Hi Kirsty

Welcome to the forum. I'm 23 and from the UK and have had similar experiences with heartless doctors. Luckily I now have a Doctor I like and respect.

I can only echo David's original post, and I hope you receive treatment soon.

This forum is a brilliant support group and I hope it gives you the same reassurance it's given me so far

Hannah xx

 

[mcos22]

Hi jill. I just don't feel i have the confidence to go to them when they have knocked me down for so many years. I don't think i will even be listened to. I've tried going to the doctors and they just prescribed me anti depressants. i want to scream at them I'm down because of the illness not because i have a chemical inbalance in my brain. deal with the illness then i won't feel down. lol thank you for the wishes though it really means a lot and same goes for you.

Hi Rosiebush. I can certainly understand what you are saying. When the doctors talked to me like they were my mam would see red. even at 18 years of age i was still her baby girl and she hated seein me in so much pain and the doctors unwilling to do anything. Good for you complaining and fighting for your daughter. What on earth can the internet do though your daughter needs medical help not research which can be extremely frightening. Keep on battling you will get your way and good for you. xxx

Hi Hannah a fellow UK citizen lol well isn't the nhs a load of tosh. doctors are just too busy and hospitals are under staffed. and they have no emotion at all. all you are to them is a peice of paper in a file. I've tried going to the doctors saying how much its getting to me i don't want to socialise around people because i'm embarrassed and ignorant when i keep going to the toilet. They prescribed anti depressants. I was thinking i'm down because i feel ill im not actually depressed which is a different illness altogether. Yes everyone in this forum has been so friendly and helpful im from a really quiet part of wales so theres no one around me has it that i can talk to. Its nice to know theres so many more people going through it than i ever could of imagined and i've learnt so much already.

Really nice speaking to you all

Kirsty

 

[CJ1]

Hi Kirsty,
You have come to to write place to vent,we all need to get it out sometimes and the people in this forum all understand.
I also have Crohn's and was only 14 when it all started, and yes the road can be hard at times,so talk it out at the forum as much as you need to.
I to agree with David.
Stay strong,all the best.CJ

 

[linder]

Hi Kirsty
I'm so sorry you are going through such a hard time....i know exactly how you feel...i am completely alone. It took doctors 3 years to take me seriously and now i finally have a good doctor but as far as family and friends go, i'm all alone. I can't tell anyone how i feel because no one understands or wants to understand...they just tell me to relax and to stop being so stressed out. I can't stand any of them anymore so i lock myself in my house...i'd rather be by myself then with people who think i'm always faking. I wouldn't wish this horrible disease on anyone but i would love to see certain people go through what we go through everyday...just for one day...i guaranty you that they would change their mind about the way they treat us. I hope you find a good doctor that takes you seriously and i hope you feel better soon....take care Hugs