i am so fed up of living in pain and having flare non stop!

[lucasussex]

Every since i was had Gastroenteritis back in 2015 my stomach has never been same again,I have been rushed to A&E 5 Times since start of year with stomach pain throwing up blood and bad flare up i have constipation one day next day bad loose stools with red blood in it, i have had Gastroscopy and Colonoscopy, MRI small bowel, i also had antibiotics for helicobacter pylori no response, i am currently on B12 injections and Folic acid i was admitted to my local hospital again on 07/05/2019 and came out yesterday while i was in hospital they did Video Capsule endoscopy get my results on 17/05/19 i am currently 7 stone i was 10 last year and BMI is 17 this is so mental my Gastroenterologist specialist at Tunbridge wells Hospital advised me i dont have crohns disease that i have Likely functional bowel disorder. and IBS which i dont believe this as my symptoms are awful every time i eat i feel so sick after

to cope with pain i take Morphine, Codeine or end up in Hospital with fluid also every-time i end up in hospital my blood pressure is always really low and nothing gets done, they even sent me for Ultrasound for my appendix and was clear!

currently out of work at moment due to this shit disease

i am only 28 years old and i want my life back sick living in Hell!

[FRreedman]

I understand that it is a long way from where you live, but, if I were you, I would ask my G P for a referral to St Marks Hospital at Northwick Park. This is a centre of excellence for all things related to the bottom, and I can state, that, in my opinion, it is ,indeed, told for bottoms. They are at the forefront of diagnostics and treatments for all gastrointestinal problems. I wouldn't be here, today if it weren't for them. They are based in Harrow, North West London. Good luck

[lucasussex in reply to FRreedman]

Hi thanks for the reply i am going ask my GP to referral me to them!, not getting anywhere with my local hospital thanks so much

[Anniemouse in reply to lucasussex]

Hi great advice given there , i have had Crohns for nearly thirty years . Many operations and interventions . I am currently on Vendolizimab and i see a specialist at St Marks in London. Can not praise them enough. Fantastic team . I am the best with my Crohns that i have ever been I pray it lasts but if not it has been nearly two years off limited pain and i can eat most thing, go to the loo twice a day rather than 12 plus .

So get that referral , you have nothing to loose .

all the best and prayers for some answers and a resolution to your pain x

[lucasussex in reply to Anniemouse]

I feel so I’ll hun stomach killing had pizza last night stomach been in bits all day back to liquid diet 😭 get my results tomorrow from video capsule endoscopy I am going to docs next get referred to st marks

[Anniemouse in reply to lucasussex]

Hang in there x Have you been given some fortisip/liquid food replacement drinks that contain all the nutrients the body needs , high calories . Easier on the stomach . these may help to keep the weight on and give your bowels a rest at the same time. so worth a try . I lived on these for months whilst i was having a nasty flare . Helped me. come in different flavors . May be worth asking GP or Hospital until you can get some answers . Referral a must by the sounds off it . Let us know how you get on

continued blessings . x

[lucasussex in reply to Anniemouse]

Been diagnosed Proctitis Colitis still been referred to guys in London and st Mark’s I feel like shit how are you feeling

[Anniemouse in reply to lucasussex]

Hi well that is step in the right direction, at least now you have a diagnosis and hopefully treatment can be started soon.

I'm ok just waiting to have all my tests before they decide if i need further treatment .

Have a restful weekend and try and look at small meals and maybe keep a food diary anything that will help to see if you have trigger foods

x

[Maggiemay53]

I was diagnosed with Crohns almost two years ago. Was on different meds and even Humira and nothing was working. The day after Christmas I was so bad I went to the hospital and they admitted me and said I had severe diverticulitis. I came out four days later feeling pretty good but within two weeks I was down again and wound up being admitted again and transferred to another hospital. Had my third colonoscopy in two years. This time I came out with an aggressive treatment of prednisone and Apriso and Azathioprine. I’m off the prednisone but the GI said the other two would be long term. So far all the bleeding and diarrhea have stopped. I had a lot of the same things you described you might talk to your GI about meds that I told you I’m on. Hopefully you will find something that works this disease sucks.

[lucasussex in reply to Maggiemay53]

Hi Maggiemay53

My GL doctor wont put me on meds until a diagnose of Crohns yes same here had third colonoscopy this is so frustrating i hate it

[MissNyxiie in reply to lucasussex]

Exactly what my drs are doing, the hospital keep delaying my appointment. My local dr refuses to do anything because i havent been diagnosed and even went to a&e, they told me it was a flare up and sent me away with antibiotics because they couldnt anything more without a diagnosis. Try the different hospital, it may make a big difference, i know i will if i dont get anywhere with my next appointment!

[lucasussex in reply to MissNyxiie]

keep pushing hun dont get fobbed off! i did try different hospital and no joy dunno wot to do anymore! everytime i eat i feel so sick

[MissNyxiie in reply to lucasussex]

Kick up a fuss, if you dont get anywhere complain to pals or your local ccg. I used to work at a drs surgery for a few years, the drs will bother when you complain!

[lucasussex in reply to MissNyxiie]

i have loads of times...thinking going private will see what result says on friday this is driving me crazy!

[Hidden]

Hi, so sorry to hear what you're going through. Have they done biopsy during colonoscopy? I have microscopic colitis which only shows through a biopsy. Some of your symptoms are similar to mine. I hope you find a sympathetic healthcare provider who can help you get back your quality of life ♥️

[lucasussex in reply to Hidden]

Hi I have had two colonoscopy found piles I they did biopsy no they are horrible it’s nightmare

[bedfordlodgers1]

I was so sorry to see your post and what you have been through, I too have a similar problem, was in hospital 3 times last year, even got C/Dif and it took me a year to recover. I never understand this sickness problem but do ask for anti sickness meds as it can be soul destroying everyday feeling like that. Do get the protein drinks from the Dr they will help. Southampton hospital are helping me at the moment and have just had another colonoscopy so waiting to see results. Keep strong things will hopefully get better but talking to others is so helpful. Good luck.

[lucasussex in reply to bedfordlodgers1]

Hi I got diagnosed with proctitis last Friday yes I am on the drinks

[Anniemouse]

Hi lucas , how are you doing .

Have things settled down

Continued prayers x

[lucasussex in reply to Anniemouse]

Hi Annie,

Ended up in A&E yesterday after loads of flare up didn’t admitted me doctor turned around said we have done all tests etc can’t do anymore basically don’t come A&E if I have bad flare up and throw me out with pain relief

Got have PET scan next month

Crap continues hope your well x

[bedfordlodgers1]

I was just looking to see if things were any better for you but it doesn't look like it. I am so sorry but try not to get too down. I am still waiting for results of a scan two weeks ago and like you despair sometimes. I wish I could be more help but have not found the answer to our problem yet. testing different foods to see what works /if any!/. try to eat yogurts when ever you feel up to it just to keep your tummy working. Please look after yourself.

Love Dido

[lucasussex in reply to bedfordlodgers1]

Hi got have pet scan I am in pain still horrible on antidepressants they meant help pain and they starting to work how are you?

[bedfordlodgers1]

Have got so used to the same old same old but try to do things to cheer me up on the days I am feeling a bit better. Have stopped eating anything after 7pm because the Doctor has said the body needs eight hours to rest but quite frankly I will try anything to feel better. Have taken a liking to soya milk so have a glass instead of eating which is making me think I am helping myself. Sickness and pain seem to be the symptoms but still have not heard from the hospital about my colonoscopy. Have been trying to find a hobby to take my mind off it, even been swimming under the cover of darkness/not a pretty sight!/. Am also taking Healthspan Pro10 which is supposed to help the immune system. Nothing ventured nothing gained. Try to stay positive. Have they checked your pancreas. Love Dido

[lucasussex in reply to bedfordlodgers1]

Well I was working got sacked from temp job as didn’t get on with girl worked with she was bitch so more stress trying find another job stomach in bits again still on ensure drinks got pet scan on 13th take care hun

[bedfordlodgers1 in reply to lucasussex]

Hope you got on alright with the pet scan I have been thinking about you and wondering how things were going. I am off to the hospital on Thursday for results of colonoscopy. Wishing you well, sun is sure to come out next week. Got out a pot of paint and started slapping it all over the walls, it was very therapeutic! but a bit messy. Have just baked a massive chocolate cake and may well eat it all myself!!!. Keep your chin up. Love Dido

[lucasussex in reply to bedfordlodgers1]

I ended up back in hospital got admitted last Tuesday was bad flare up came out yesterday, my pet scan came back clear they put me octasa Mesalazine last Tuesday and got B12 infections tomorrow, my doctor was like if you want second opinion

Omg I want some hehe thanks Dido

[bedfordlodgers1]

Hope things are going ok for you. This very hot weather is quite difficult to deal with. Never heard of Octasa Mesalazine. Does it work I hope so. Am now trying water colour painting again, also Caligraphy, I,m crazy , hot, and battling on. Love Dido