My Story: My Diagnosis - Crohn's Disease
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- เผยแพร่เมื่อ 27 ก.ย. 2018
- Here is my story about my chronic illness, grab a cuppa and a snack, its a long one! LOL
I have also done a blog post about this story so if you prefer to have a read then head to alisonsfoxall.wordpress.com
Thank you for watching.
A follow up video will be posted soon :-)
Business Enquiries: thefoxallfamily4@gmail.com
I found your story to be so relative to mine although I'm still waiting for testing/answers. Blood tests and stool samples previously have been normal. CRP normal. July 2021 I was sent to the hospital by my GP 3 times before they even considered giving me a scan. The ultrasound and CT scan showed nothing and the radiographer I spoke to when I asked if they could see everything in my bowel said sometimes but I'd need a colonoscopy. It's now Aug 2022 and I'm still waiting. Within this time I have been referred urgently to a colorectal surgeon a few months ago due to rectal bleeding/fissures and on an internal examination, he saw something he wasn't sure of so he said he'd like to examine closer under GA and possibly biopsy it. It's now 15 weeks since that appointment. I called the secretary and she said it's now 95 weeks as I'm 'only category 3'. Went to my GP in tears and she's now written to them to see what on earth is going on as it was supposed to be urgent. I don't get how anyone can be made to wait 95 weeks for a biopsy! I'm in so much pain daily with my bowels and often times bed bound. I'm struggling to walk due to the pain. I know this has to be more than IBS. I get ulcers, sore joints, fatigue, severe sweats, skin rashes, and a huge distended abdomen that doesn't go down even after bowel movements. The only thing not affected really is my weight. I lose a few pounds then they creep up again. I'll often struggle for my bowels to move or it's the opposite where it doesn't stop for days :( long rant I know, and I understand this video was a while ago but thank you again for sharing! I'll hope to update with some answers soon. It wasn't until recently that I paid for private bloods which showed my CRP was slightly elevated, even though the NHS one said normal. It's bizarre how their ranges are so high, and it's no wonder I feel rubbish it feels like everything is inflamed! Hope to update here soon with some answers xx
i'm so sorry to hear this, its such a shame that we have to wait and wait to get anywhere, i know we are lucky to have the NHS and with covid etc there are long waits but we are the ones who have to suffer longer because the little tests they do show nothing wrong with us, making us out to be making it all up. i would definitely try and chase that colonscopy, it should pick anything up that could be missed by blood tests, hopefully you will be able to get in soon and finally have a diagnosis or at least further along then you are at the moment. we shouldnt have to suffer in silence 😞
Oh Jesus such dire moments for you. #carnivoreCure
#reindeerherdsman
#MetabolicHealthSummit
Bless You and Your health journey, Thank You from the heart, thank you.
I was only seven or eight years old when (my Mum was with me) because of the pain's in my stomach, were so bad, I had this exam of the rectum to exclude an obstruction. It is probably why I am still awaiting my diagnosis. I've been told that I have an eating disorder, told I will perhaps be admitted to hospital, my weight loss is severe. I am 46 years old and around 37.9 kilograms. The toll on my body becomes the blood test's done all look close to normal (subclinically hyperthyroid then resolves after iodine supplementation for a week or two) (vitamin D was very low, superdosed 7000 iu with vit k2, resolved test level to 60) it's like a pattern.
I know I am not absorbing what I eat, I know I have stretorhea, fat malabsorbption by the tan, light colour visible etc
What I can't understand is why these procedures are the protocol for a suffering patient, a child even. It is the worst thing to experience, thanks for saying that, it is.
Here's praying for better, less invasive diagnostic tests, and exam's.
I’m so sorry that you have yet to be diagnosed and that they seem to be blaming you for what you are going through, the only advise I can provide is to keep going to the doctor, or even a different doctor and hopefully you will find one that actually listens to you 😢
💕
Im 15 and I've had symptoms for 6 months. Weight loss, malnutrition, bad stomach pain that has me on the floor screaming and crying. Constipation and diarrhea, bad nausea, and fatigue. I see a doctor tomorrow but im scared it wont be a good one. I dont know how to make sure I get tested for crohns without looking like a nutcase. But I do. Not. Want. To. Be. Misdiagnosed. And I just dont want to feel like this anymore
Carissa Hendricks what where you diagnosed with?
Hello Chrissi, i'm so sorry for the late reply, i'm hoping to be more active on this youtube channel now, it definitely sounds like you sound be on at the doctors for more tests, if you havent done so already, i know with the pandemic at the moment it is easy to be over looked or even scared to ask for more, i've finally had a rheumatology apt that i should have had 2 years ago, i've been diagnosed with joint hyper mobility, not related to crohns, and got told to do Pilates, and maybe have some magnesium for my leg cramps i have started getting every night, which stops me from sleeping :-( I really hope you have found the cause of these symptoms for you now.
What ended up being your diagnosis?
How are you now?
I was sent to the Emergency room the other day, got bloodwork done that came back completely normal, although through an xray they could tell my stomach was messed up. And they gave me pain meds. Told me the bloodwork was normal with no inflammation, and told me to "go get some meat on my bones" then sent me home.
Carissa Hendricks bloodwork will not show inflammation until it’s really bad, ask for a colonoscopy it is the only definite way to get a diagnosis, keep fighting and do not stop until you get some physical evidence everything is fine or there is definitely something that needs to be treated! That’s what I tell everyone. I know a lot of people are fobbed off, but with those symptoms you need to have the colonoscopy to rule anything else out, that is my only regret, I should have fought harder to have more tests. Good luck xx
@@AlisonFoxall alright. Thanks!
Well things took more of a bad turn this evening. I can't eat or drink now, im way too nauseous and I don't even want to move. My arms and legs feel so weak honestly a bit like noodles. Meds arent working and I feel so fatigued I can barely hold my eyes open but im unable to sleep. I have an dr appointment in the morning and I hope I can wait until then
Carissa Hendricks if you didn’t go to emergency room, the next time go, all the admissions will show the docs something is seriously wrong, plus if it’s a bowel obstruction you don’t want it bursting and poisoning your body, hope the docs can do something for you
@@AlisonFoxall thankyou. I havent gone to the emergency room. My family is extremely concerned but they think i might've picked up a virus ontop of everything, but I honestly have no clue, all I know is Im still feeling awful pain and nausea and weakness even after trying a number of medications. Not to mention its 4am here and I can't sleep. But I have a doctors appointment in 4 or 5 hours so hopefully ill be ok till then. Last time I went to the dr. They sent me straight to the ER. May happen again im not sure
My mother has a virus but the meds also work for her. I dont know if my body is just not working properly right now or is weak and that's why meds dont work or idk if there's an extremely serious thing going on. I stayed in bed all afternoon and evening and only tried to eat the smallist bit of mashed potatoes and gravy that made me feel worse rather than better
They will possibly will send you to the ER, I hope you get some answers soon xx
@@AlisonFoxall okay. Thankyou, sorry for taking some of your time
What was the cause of the lump from in your lower right abdomem?
Brandi Chappell as far as I’m aware it was a mass, scar tissue had narrowed my intestine and nothing could get through properly
@@asfoxall I'm currently going through the diagnosis process, haven't had a scope done. But I have lumps in the same area as well as abdominal pain. Though my blood work is normal. Thanks for posting your video, gives me a sense of comfort knowing someone has similar symptoms.
All my bloods were normal too. Get a scope done ASAP! It’s the only way they will pick something up unless you end up having emergency surgery and I would wish that on anyone! If no scope try and get at least the MRI done xx
Wouldn’t **
My son has 55 years old ! When 18 2as complained of everything you mention,got all kinds of tests doctor deci🎉to operated the apendice,appendices, it out,but was not.going further in 2019 had to make an huge operation to take scars that were Making the food stooped in the colon...almost lost his life because they left an open hole and it did cause a huge infection in the blood ...he was 52 than ,now 55 butsuffering the consequences of having a stoma for 5 months ,during covid,and developed an huge hernia and had to have another surgery,in with they implanted a kind of a screen to keep things together...it has been 3 years an# things are okei,I guess😢sorry for the huge rant.😅
So how are you now?
I’m doing well, I’ll do an update video soon, the heatwave in the uk is tough and can cause me to have some major bloating and feeling sick but usually I’m ok
@@AlisonFoxallyes we are in Clevedon. We moved from Solihull in 2020.
@@AlisonFoxallplease make an update🙏
@@macgina8412 Thank you, I have some time over the next few weeks and i'll try and get something uploaded soon on an update 🙂
How are you doing currently??
Thank you for your comment, currently doing a lot better… luckily no more surgery since my first surgery, still on the same medication, and since covid started I have put on weight which I’m told is a good thing and tummy not been too bad, I have my bad days, sure, but they do seem to be less, my consultant doesn’t seem worried so I have tried not to think so much about it, a lot more crazy stuff going on in the world at the moment. I’m not going to say that is been plain sailing as I’ve got anxiety now of getting covid because of the medication I’m on because of crohn’s, but it is what it is. 😊
@@AlisonFoxall im so happy that you are not on biologics, i hope your medecine keeps working for years to come, btw you said that you pay for all your medcine, i thought anssurance covers it :/
@@Knighttus in england we have to pay per NHS prescription, I’m not sure how much it is but I pay for a pre payment certificate which is just over £10 a month which covers any medication I need, not just crohn’s medication. It also covers my bile salts malabsorption medication, it’s only worth paying the £10 a month though if you get at least 2 prescriptions a month so I try and make sure I order at least 2 items. I wanted them to put vitamin d on my prescriptions as it costs a lot at my local heal store but they wouldn’t as my vit d was in range, of course it is because I take supplements 😂 it’s a shame that it’s not free as my husbands diabetes which is also a lifelong autoimmune condition gets his insulin for free… my bile salts malabsorption is with me for life now due to the surgery they did and I have to pay for my medication that gives me a normal life. Annoying really.
I really hope my azathioprine continues to do what it needs, been on it for 10years now 🤞🤞 and that I don’t need anymore medication, otherwise I’ll start to rattle soon 😂
@@AlisonFoxall 💪it will keep working, thanks for the clarifications, i hope my medecine would work for that long, btw are following a diet?
@@Knighttus in the beginning I eliminated my trigger foods but then I realised that it was so random that I introduced those foods back in and found they weren’t actually triggers at all, it could be if I’m stressed or anxious or even alcohol but if I think it might make me feel off, I try to enjoy certain foods on days where I don’t have much planned, the pain sometimes isn’t worth it but sometimes I just overindulge and accept the consequences. I am very lucky and I know that as some people have it much worse them me x