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Newbie

Hi All, my name is Mandie.
I am currently going through testing for possible Crohn's. I am having an MRI scan tomorrow with the IV medication and contrasting drink. My symptoms started as an acute onset of Diarrhoea which is now chronic. I had a sigmoidoscopy done with biopsy for bowel cancer which thankfully were negative. The other symptoms i have had are: abdo cramps, occasional vomiting (only a few times) and intense gurgling of the bowel. I did have a short period where i was loosing blood from the bowel but this has stopped. I have read alot of the threads on here where people are describing their symptoms ... Which some are similar to mine. At the moment anything i eat or drink goes straight through me .. Sometimes even when I'm still eating. I have had these problems now for over 4 months and its now really affecting my life. I have been signed off work for 2 weeks as i have a pretty stressful job .. Im a nurse and i was becoming generally unwell with it all. I am very worried what the future will hold if i have Crohn's .. I know its not curable but it is manageable. I cant pin point any particular food or drink that irritates me as even a glass of water or dry biscuit affects me! I have lost weight over the 4 months, and sometimes get such a bloated stomach i look 9months pregnant ... Is this normal??
Any info/knowledge or words of advice you can give will be greatly appreciated. Also is it a hereditary condition? A maternal female cousin has suffered with Crohn's for many years, my Mother also has diverticulitis. I have been prescribed Loperimide 10mg twice daily but wonder if i should start taking vitamins?
Thanks
 

SarahBear

Moderator
Location
Charleston,
Hi, Mandie! Welcome to the forum!

I'm sorry you're having such a tough time. To answer your questions, weight loss is typical of Crohn's (but doesn't happen in every case). Bloating is also common. There is a genetic component, but it's not completely hereditary. Your risk of developing it is slightly greater if you have a family member who has it, but there seems to be quite a bit more to it than that. Usually certain foods bother people more than others, but not always - you might have no trigger foods. If you're feeling extremely bad, it's not all that strange for every single thing to upset your stomach.

It would be best to have your doctor do a blood test to check your vitamin levels. If you're deficient in anything, they can tell you what is best to take to correct the problem.

I hope things get better for you soon. :hug:
 
Hi Sarah,
Thanks for your reply, it's appreciated... I think the Dr is going down that route after the scan results, I will let you know the results when i get them.
Mandie x
 

Angrybird

Moderator
Location
Hertfordshire
Hello Mandie and welcome to the forum.

I am sorry to hear that you are having a tough time of things at the moment :( I hope things go well today and the scan can help towards getting you a diagnosis. Out of interest with the sigmoid did the doc say whether they saw any inflammation or did the biopsies that were taken indicate anything like crohn's?

Wishing you all the best and please keep us updated on how you get on.

AB
xx
 
Hi Mandie

I'm new here too and also new to all of this - I've had chronic diarrhea now for months and am going to the docs tomorrow. I understand your symptoms they seem similar to mine. Particularly having to dash to the bathroom even in the middle of a meal sometimes. It makes life hard eh?

This seems to be a lovely forum, I didn't know such a place existed - I was googleing stomach illnesses and managed to stumble across this place.

I hope you get some answers!

H :)
 
Thanks AB... The Doc didnt say either.... If it isn't Crohn's i dont know what it could be?
It is a nightmare sometimes.. As i work shifts it can have a real impact on my life .. Most of the time i go over 8 hours without a drink incase i get it at work, and i certainly dont eat at work, its only the last couple weeks ive really started to feel unwell with it, thats why i got signed off. Not looking forward to this MRI scan either .. Apart from feeling chlostrophobic ive got to have the horrid IV injections:( ... But i will keep you up to date and thanks xx
 
Hi MJH

This is such a fantstic site and your in the right place for advice
Iam the same as you i am undiagnosed i have had a colonoscopy which came back clear of crohns they took biopsy too
Yesterday i had a MRI Scan with the contrasting drink and IV Meds i am just waiting on the results of that which i am hoping and praying i get asap as i am also really struggling
as i too have weight loss sleepless nights harldy eating anything as anything i eat gives me terrible pain and then straight in the loo

the cramps the bloating the sickness the constant feeling totally nacked all of which i have too

do you have any joint pain and is it worse at night for you

Like you i have had bowel issues for 10 years but was always fobbed off by the GPS as IBS but as my Consultants says IBS does not keep you up at night

it looks like we are like for like in our symptoms but they have not given anything to me to help with the pain and the constant watery stools

what have they given you as iam not looking forward to xmas dinner

Good Luck for your MRI

All The Best
Stacey
xx
 
Hi Stacey, we live quite close ... I live in Harlow! ... I have only suffered with restless leg syndrome at night which i have read is a symptom of Crohn's... But i dont know if this is true or not. Im not eating very well either, my Consultant told me to avoid dairy products, vegetables and pulses for now, which i am. Im only prescribed Loperimide and take paracetamol for abdo cramps. Were not having the usual christmas dinner ... Were having steak! At the moment i have identified white onion, pizza and possibly pasta affects me .... Diarrhoea and terrible bloating, i think is going to be a long drawn out process of elimination food wise. I asked the Dr if he thought it was IBS and he said my symptoms were to severe for that, plus having family member with it makes me more at risk of Crohn's.
To be honest as much as i dont want it to be Crohn's i want them to find something wrong ... At least you know whats wrong and can treat it.
Mandie x
 
Hi Mandie

I work in Hoddesdon lol
i am under Dr Preston at the Rivers Hosptial he is amazing he is not messing around getting me sorted
I have the bloating too i have lost 1st 4lbs in about 8 weeks i have gone from a healthy curvy size 12 to almost a size 8 and i am only small thing 5ft so its noticeble and the weight loss is ongoing so bloating make me look preggers.
i am avioding pretty much anything as the only things that dont hurt as much and dont make run to the loo is mash white pasta chedda chesse and ready salted hoola hoops
robinsons orange is good and plenty of water
i also just want a diagnoses asap as iam scared of not knowing at the mo
the tiredness is flooring me as i am only consuming a few hundred calories a day so my energy is also zero all i want to do is sleep as im only getting a couple of hours sleep a night as the pains and the Diarrhoea is at its worse
i think im getting the joint pains due to lack of food
im deffo missing my food as i was always a really healthy eater
like you i just want to get treatment
My Brother in law had crohns for 10 years and he was really bad at the start now he meds free so its making me stay positive but i really dont want to be this ill any more im sick of being like this its taken over my life
For xmas im cooking the norm for the family but ill just avoid the the veggies and gravey and just have a little bit of meat and mash
it is true its a case of trial and error with food
i hope you get sorted soon hun but you deffo come the right place here everyone is so kind and friendly and a wealth of knowledge
xxx
Stac
 
Well im back from the MRI scan and vision is just returning to normal... Still blurry so excuse any spelling mistakes!
I know Dr Preston ... We work at same hospital. Im under Stoner at the Rivers, my follow up is 16th jan... Long wait but would of been longer on NHS!
I lie you am only 5ft and half inch... So bloating makes me look pregnant ... And so painful... And uncomfortable.
Ive gone from a size 16 to a 10/12, at the moment i cant find one food that doesnt upset me ... Which is getting depressing ... And i miss going out for really nice meals ... But hopefully it will be sorted soon one way or another!!
Xx
 
Hi Hun

How did you find the cannula bit i had a really tough time with that as the lady doing it could not get a vein and tried 3/4 time in each arm she had to get a doctor in to get it done my arm is now very stiff and very sore
My vison is till blurry but not as bad as it was i felt pissed yesterday but not in a good way
Dr Preston is lovely i have been told to call the hospital tomorrow afternoon they may have the MRI results back and i have been booked in to see Dr Preston on the 28th and the 4th
what a small world we are at the same hospital and live a few miles apart
i might see at the rivers one day!!!
so glad im at the Rivers and not chase farm or Harlow PA
i feel your pain on the food front i love a good meal and its making me depressed as im missing out on family meals and tomorrow is my office xmas lunch and thats at The Sun and nothing on the menu that wont cause pain and the usual running to the loo
but we will get sorted soon enough
i cant wiat to be well again so i can go for a lovely meal with my hubby
keep me posted hun
xxxx
 
Cannula straight in lol.... Eyes are blurry ... The Sun is a 2 minute drive from my house lol.... Eaten there a few times ... Pub grub eh! I wa a bit disapointed i had to wait so long for follow up ... But the way it goes ... I work at PAH so didn't want to go there ... Seeing as we live so close we could meet up one day for a cuppa ? Xx
 
That would be lovely meeting up for a cuppa i work at Plumpton road next to the rye house train station, we will should make a date get crimbo out of the way then deffo meet up exchange stories lol

dont mean to rubbish your place of work soz x just had a few bad experiences there with broken bones ect

Its a shame you have to wait so long for a follow up thou i would see if they can get you on sooner

xxx
 
Im back atwork next week but the off for 2 weeks after the 5th ... So be great ... And dont worry its a great hospital with great staff ... But there are problems there .... I am going to see if i can get earlier appt xx
 
Hi Mandy

well the MRI came back with no crohns detected in small bowel and biospy came back clear and nothing found in colon

im very confused as i still have all the symptoms and fell no better

the consultant wants me to go see a dietritian to check if its a food intolerence to do a exclustion diet, but there is not much food that dont effect me

i have been keeping a food anyway just to help myself and i have already excluded diary from my diet and still getting the symptoms

is this gonna take months to detect whats wrong as already had a colonoscopy and a MRI
Is there any other tests they can do to find out whats wrong with me

or is it all in my head !!!!!!!

as the pain the blood the bloating the sickness after i eat anything is not right

I hope your ok and hope you have a lovely Christmas and its not too painfull

Thanks a million

Merry Christmas
Stacey
xxxx
 
Well thats a bit crap..... No diagnosis .... But no change in symptoms :(
On the plus side its not Crohn's, but the down side no diagnosis, the dieticians will be able to help you eliminate certain foods that irritate you, but bring food in that will hopefully help.
Keep ur chin up sweet and enjoy christmas, hopefully meet up in the new year ... Lots of love xxxxx
 
hey Mandy

hope you had a lovely xmas, mine was quiet but stressfull due to so call family being idiots and trying to force feed me food that i know will hurt and make even worse
but hey hubby managed to bat them off

my symptoms have gotten no better and i have completly cut out dairy gone all lactose free

but still no improvment so gonna go very basic and just have chicken rice and mash clear soups

see if that helps

deffo gotta meet up after new year

all the best

xx
stacey
 
Hi I've not got a proper diagnosis either I've been diagnosed with indeterminate colitis which means they don't know whether I have crohns or colitis.. On a plus I feel fine now I have an ileostomy my bowel could of burst at anytime which could of killed me. On a negative side I've no diagnosis and need more surgery to make my ileostomy permanent coz I feel I have no other choice with my diagnosis.
 
Sorry to hear this Cheerbear, i get my results 16th Jan, however since having the MRI scan just before Christmas i have been suffering with terrible abdo/bowel pains during/after eating, i now know im definately allergic to onion, pasta, and pizza .. My abdomen bloates to the size of a 9 month pregnancy!! And it is so hard and painful, one minute im suffering chronic diarrhoea then feel constipated and the bowel gurgling is terrible ... Embaressing and a bit painful, i dont know if this is symptomatic of Crohn's or not?? My symptoms are pretty similar to Staceys and she was told its not Crohn's.... I have had other problems aswell but just dont know what to think :(
Mandie xx
 
Hmm I don't know sorry to hear that I hope they know what it is and can start treating it. Hugs and keep us informed. Hope you start to feel better soon
 
hey ladies

good luck Mandy hope you get some answers

cheerBear i hope you get some relief soon

i am having the whole bloasting and consipation gurgling/ bubbling in my tummy too its so embrassing

i can only eat a few mouthfulls then i feel like i have eaten way to much and bloat

i keep get stitch like pains in my sides

but the lactose free stuff is helping i just cant go too bad and eat loads otherwise im sick

i want to know why i had such high imflammation markers on my last lot of bloods and im interested if i show up again with the next lot however i have read up on this imflammation markers and its connected with IBD and Diabetes so as i have both running throughout my family and i have been told that IBD symptoms and Diabetes are in some way simular i want them to check for Diabetes as well

so see what the DR says tomorrow :(

xxxxx
stacey
 
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