Still no news :(

[clover445]

Hi guys,

Im feeling really down and I guess looking for your support/ advice again.

Its 4 weeks since my failed colonoscopy, two weeks since I got the letter saying biopsies showed mild inflammation and two weeks since my MRI scan and I have heard no more

Im living day to day at the moment, some days are better than others and some parts of days are better than others. I get by by telling myself the sickness/pain will pass and it does eventually.

My biggest fear is not being told i may have an IBD its being told that I dont and there is nothing wrong and just being told to go and live my life. When i last saw my consultant he said he would get to the bottom of it for me but i cant help feeling he wont, i think because of that happening in the past Im scared it will again.

Ive started to get a lot more pain in my left side where the colonoscopy got stuck and thats new Ive never felt that before now. Its so hard to describe how I feel, Its like sick to my stomach, I ache terribly like im getting flu and feel like I have been awake for a month. Can anyone relate to these feelings?

Clover x

 

[Guest]

hi Clover, aw i am so sorry to hear you're feeling that bad right now. ((hugs))

i think the situation you're in, where you have the pain and other symptoms, yet are finding it hard to get a clear diagnosis, is familiar to many people who've got IBD... for some of us it does take a long long time, and yet others are lucky to get it diagnosed very early on and quickly.

i think the trick is to not lose heart... keep on talking to doctors, be it your gp, or preferably your GI consultant.. don't be afraid to phone the department to ask about your results. if you're too worn out to do this, get someone like a close friend or family member to help you - someone who will fight hard on your behalf.

if you have symptoms, then there's something causing it. it's as simple as that, and we rely on the medical profession to find the cause - so lean on them and badger them until they do. and - if you think your particular GI isn't doing enough, change to a different one.

 

[Astra]

hiya clover
hang on in there, there will be an answer
Ding is right, scream & shout for it, don't accept one gastos opinion, get another, this happened to me for 15 years! I advocate to everyone, don't let it fester, you will get that diagnosis,
and if you start to vomit violently, you're blocked, get to A&E immediately, no hesitation at all, I'm worried about the flu like symptoms, you might be getting an infection setting in there
are you not on any meds at all? if not, you shouldn't be suffering without any.
get on the phone now Clover, don't wait any longer, ask for some meds
lots of love

 

[clover445]

Hi Ding & Astra

Thanks for replying, it really means a lot to know there are people out there who understand.

Im not on any meds at all.

I will check the post tonight and if there is still no news I guess I should ring the consultant. I just hate the idea of making a fuss but deep down i know its not normal to feel like this.

Hugs x

 

[Astra]

great!
you need some meds hun
just to tide you over, ease your pain, xxxx

 

[clover445]

Thanks Astra,

I meant to say, poor you waiting 15 years for a diagnosis, that must have been torture.

I have seen 2 gastros before this one, im hoping its 3rd time lucky.

I can cope with the pain, its the aches and sick I am struggling with. I feel like ive been run over by a bus. Are these normal feelings to have with IBD?

XXXXX

 

[Crohn's 35]

Hi Clover, so sorry you have to wait and it is frustrating. You probably should be on something for your pains but since Crohns and colitis is so hard to dx meds may mask an area they are trying to see. I had a full Colonscopy and showed the same ulcers, and said I still have pain on the left... this has been going on for almost a year. Less than two weeks later I was bleeding with the mucous and a sigmoid scope two days later... turns out Colitis in the large bowel, I have to wait for the biopsy report. In the meantime I am back on pred. I really hope you dont have IBD, because it is a lifetime of uncertainty. In my worst time of pain, took 1 full year of agony (and meds) for dx. Hang in there, let us know what you doc says ok? hugs!

 

[NatalieMT]

Hey Clover,

Sorry to hear you are having a difficult time being diagnosed! I can sort of relate to your situation, although it didn't take me long to be told I had Crohn's it's not a straightforward case and it did take ages to find a gastro that would actually help me. Don't worry about having a 1st, 2nd and now 3rd opinion, I'm on my 3rd gastro and he's fantastic - puts the others to shame frankly.

Maybe in the meantime you should see your GP/primary doctor and see if you can get some pain relief in place? You shouldn't suffer unnecessarily and it might just ease the situation a bit. I'd probably also have described the feeling of a flare as being 'hit by a bus' so I'd say the pains, aches and nausea are feelings representative of IBD. Not that it's pleasant!

Hope you get some answers soon, take care.

 

[clover445]

Thank you all for your kind posts and advice.

There was no news yesterday and I spent most of the night with a dull ache in my left side with my head hanging over the toilet thinking I was going to be sick.
Thankfully I wasnt but the horrible nausea is still there this morning and I now feel like Ive been run over by 100 buses lol!!!

I called my GP and i think he is going to speak to the consultant to see if he can find out whats going on. Hopefully it wont be many more days of waiting....

Hope you are all ok.

Lots of love

Clover x

 

[soupdragon69]

Hey Clover,

We will all happily prop you up at the mo. We totally understand what you are going through and the energy it takes to keep going at this time.

Keep harrassing the docs and if your GP gets no further then ring the consultants secretary and explain the situation. They will be well used to calls like that and will speak directly to the consultant on your behalf and try to sort things out.

You certainly need progress and treatment. I totally understand your fear of being told its not IBD with everything you are going through.

I had a case about 5yrs ago where a registrar told me I wasnt asthmatic and never had been, that I shouldnt be on steroids because I didnt need them and he had taken more folk off pred than I had hot dinners. At that time I was diagnosed asthmatic 10yrs and he just blew it all away. I had 5wks of hell waiting, - wondering if it was all in my head and that he convinced me I was being treated needlessly - for a breathing test to see if I truly had allergic asthma. He told me it was a throat problem, that it was all in my head and I needed to learn exercises to learn how to use my throat properly and referred me to ENT and my consultant said ok lets do the breathing test too then.

ENT wanted to know what twit sent me to them! There was nothing wrong with my throat! The breathing test had to be stopped early because I had a massive asthma attack and all the staff outside the room were worried because they could hear me trying to breathe!! They were hopping mad as I was the 4th patient they had from this registrar. In the end I refused to see him again. My consultant has arranged I only see him and he brought the registrar in to listen to my crohns diagnosis along with all my allergy results that day and he couldnt look me in the face!! I had such fun rubbing his nose in it I can tell you. Its the one and only time I have ever felt so angry and actually taken pleasure in pulling him down a few pegs. Wont forget it in a hurry either.

From your side of things you sound to have been through soooo much Clover. It can be frustrating and it does get you down. Its the strain of knowing you have physical symptoms and feeling that no one is taking you seriously enough to explore why or they just plain cannot be bothered. It was my asthma consultant who initially said he thought I had autoimmune problems and it was him who did the first tests which all came back negative, but he still maintained there was something wrong with me. When the crohns was diagnosed he just looked at me stunned as he had read my notes before I arrived. He said it explained why my asthma was so difficult to control. He has been an immense help to me over the years. So remember help can come from the least expected corners Clover. Hang in there honey! We will keep pace with you ok?

Remember we ARE here. We will ALWAYS listen to you.

Thinking of you honey... ((hugs))

 

[alexandros8]

Hey Clover,

I hope you've been feeling better and have gotten some answers! Best of luck!

Alex

 

[Astra]

hi Clover
How are you doing now hun? Any luck yet with getting some meds?
If they wont give you any meds, cos like Jan said, they may mask symptoms, you could ask for some Cyclizine Hydrochloride for the nausea, and Codeine Phosphate for the pain, these are the drugs I was given in hospital whilst waiting for dx, and they work
hope u are ok?

Way to go Jan!
Yeah been there, done that! Saw loads of docs, my notes said - psychosymatic, neurotic, depressed, mental, weirdo - ok last 2 not really! lol
it's soul destroying and i soldiered on for 15 years with 'IBS' when all the time I was a Crohnie! and a hysterectomy to boot!
If I knew then, what I know now, I'd scream from the rooftops for a gastro!

Not sure where you are Clover? but here in the UK we are fortunate enough to have those choices and rights with the NHS, still got to go thro all the crap to get there tho!

lotsa love
xxxx

 

[Nancy Lee]

Hi Clover..

Any word from the doctor(s)? I found you really have to stay on top of it and keep calling or going to see them to get some answers. Especially when you are in such pain and vomiting as well.

Please try and keep your chin up, and let us know when you hear something.

Healing Hugs~Nancy

 

[clover445]

Hi guys,


thanks for all your kind words and advice, you are all truly amazing!!!

I havent been on the boards for a while, I kind of feel like i shouldnt be here if all i have is IBS. I think deep down i know whats going on is more than IBS but what choice do we have other than to believe what we are told. I saw a dietician today and she was really really nice, she said my symptoms could be from a severe food intolerence although the blood and inflammation didnt sound normal to her she said its possible. Ive got to go on an exclusion diet to see if that helps and if it does bingo hopefully i have the answer to all my problems and if it doesnt then i have to go back to see the consultant but he has already said he thinks its IBS so im not sure i will go back if thats what i will be told.

I have good days and bad days, good weeks and bad weeks. The good times are still good other than feeling constantly exhausted but the bad times are horrid. Tuesday night i was in so much pain and sweating like mad in bed and then by today im getting ok again. The pain is like a real gnawring ache, i wouldnt really describe it as a cramp more of of a dull pain. Can anyone relate to that??

My main symptoms that bother me are
nausea
muscle and joint aches
flu like feelings
tiredness
sore eyes
dull left sided pain about 5 hours after eating
Occasional lower right ahcey pain
pressure in the middle of tummy a bit more cramp like
blood in poop on days where pain is bad
diarreah or flat ribbon like poo
night sweats

Its weird sometimes i have all of these symptoms, some times i have none and sometimes i have some. The best way i can describe it is just a general feeling of yuck!!

The only things they have found in tests is mild inflammation from a biopsy and a kink in my colon.

i just want someone to wave a magic wand and say this is whats wrong with you and here are the magic pills to make it go.. if only hey

xxxxxxxxxxxxx

 

[Astra]

Hi Clover
I'm sorry but it's NOT IBS!
you don't bleed from your bottom with IBS
Please go to A&E, if you have flu like symptoms, you could have an infection, this is what I had and I DID have an infection
Even if you DO have a food intolerance, you need some meds if its an infection asap!
Have you got someone to help you? Your Mum? If you're in UK, phone an ambulance
hope you find some relief soon
besta luck
Joan x

 

[clover445]

Hey Joan

Thanks for replying.

Yeh im in the UK. I have had the flu like symptoms on and off for a long time so im fairly sure its not an infection setting in, if things get worse though ill call the consultant. He was really nice to me when i last saw him and im sure he does care really. i think im just a bit of a mystery to him. His last letter said he wanted me to go to the dietician as he thinks i have food intolerences and IBS but he will see me again in 5 weeks so i guess thats not too long to wait. I know its not IBS either but I dont feel i can argue with a proffesional.

im sure things will work out soon enough

lots of love xxxxxxxxxx

 

[Astra]

Hi Clover
Ok, I'm glad you're in the Uk tho, just in case,
and yes you can argue with a professional! and get a second opinion if you want!
hope you can get some pain relief tho, you shouldn't suffer
lotsa luv xxx

 

[clover445]

Hello I thought i would give you all an update mainly because im desperatly in need of your advice again.

Since i last checked in ive seen the consultant again, he said my MRI scan of my small bowel was normal. He seemed a bit concerned i was having daily diarreah with undigested food and also a little concerend there was a blockage in my colon where the colonoscopy got stuck but he said that i am a mystery and he might never find the cause.

Anyway I had a barium enema today, it was a really low dose and only half single contrast whatever that means and it didnt show a blockage. The radiologist said I must have been to uncomfortable and my bowel went in to spasm causing the incomplete colonoscopy. Dont get me wrong i dont want an obstruction but ive had 2 failed colnoscopies now both getting stuck at the sigmoid and I now have a daily deep ache in my left side in the exact position. Its so weired i feel like everything is getting stuck and my colon is swelling and putting pressure on everything Its a really low down pressure feeling kind of feels like its on my bladder.

Im terrified the consultant is going to tell me its ibs and leave me to get on with it. Im not a wimpy person and i dont moan easily but these feelings im getting are real, its just like ive been runover by a bus.

I just dont know what to do, can you really have two failed colonoscopies becuase of spasms. I feel like such a fraud having all this tests if there is nothing wrong. I question myself all the time because when im ok, i am ok. I genuinlly do have good days mixed in with the bad.

Im having a bile salts test next week and some stool etase? Im just sick of everyone saying thats normal, thats normal. the only thing i have to go on is the mild inflammation and stuck colonoscopy. I feel neurotic wanting there to be something show up but i know this isnt in my head.

Love a very sad clover x

 

[Astra]

Hi Clover

Gosh can't believe your consultant! Mystery? Did he study at all? Did he offer you any meds? Are you still bleeding?
If you are, then don't accept a dx of IBS!
Remember, cos you're in the UK, you have a choice where you get treated, you can chose your hospital. I would get a 2nd opinion for sure.
You know your own body, and these symptoms aren't 'normal', and don't let any one tell you that they are! You're not neurotic, and it's not all in your head!
Hope you find the strength to fight them, or you're gonna slip into a deep depression.
Go back to your GP, ask for another referral to another hospital, and while you're at it, ask to be seen by a gynae too, to rule out any endometriosis that could be attached to your bladder.
good luck, stay focused, and make that phone call OR just get an ambulance! and cut out the middle man!
Then they'll start listening!
let us know how you get on
xxx

 

[Keona]

Hi Clover,
I am sorry you are going through a really hard time. I can totally relate!! I don't have the pain in the left, I have it in the right and I know what you mean by feeling exhausted ALL the time.
It is also my understanding that IBS doesn't cause bleeding and weight loss. Have you lost a lot of weight?
I am waiting for my MRI and colonoscopy and a diagnosis. I know what you mean about feeling like a fraud. If it's not IBD than I have taken up everyone's times here when someone else could have used it... I did read somewhere on here that if it is a bowel/stomach issue that it is okay to use this board for support and advice. Try not to worry about the tests you are having because I have read tons of posts here as well that people had test after test to be told it was IBS when in actuality, it was IBD. I would push the blood issue - that's not right at all. Have you checked your temperature? I have low grade fevers and one GP told me it could be a sign of infection like some have already commented on... you don't always get a fever with an infection though.
I hope you get proper care soon. For me it feels like I'm being told I could possibly have a serious chronic condition however, they're not going to help until they see it on some sort of test...regardless of some of the signs and symptoms. Makes me feel a little invisible.
I don't really know what to say other than keep asking doctors what is wrong. The light at the end of the tunnel is not a train
Keep on keeping on Clover
________
BMW S1000RR