Crohn's Disease Forum » Ulcerative Colitis Forum » Was this my first flare?


01-31-2018, 04:21 PM   #1
Anxious855
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Was this my first flare?

I am 32, never had much in the way of UC symptoms before October last year. It started with vile smelling gas, a migraine and an episode of loose stools. I then started getting weird tugging tummy type cramps. That went then I had diarrhoea. For four of these days the diarrhoea turned completely bloody but returned to normal colour afterwards. After 3 weeks it went of its own accord with no antibiotics. Would this be considered a first flare up?
02-04-2018, 10:18 AM   #2
Anxious855
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Anybody?
02-04-2018, 11:10 AM   #3
Womble
 
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Anybody?
Nobody on here can diagnose, hopefully your apt will come soon
Stressing over each scenario is not going to help your nerves or guts x

Last edited by Womble; 02-04-2018 at 11:39 AM.
02-04-2018, 11:41 AM   #4
Anxious855
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My FC was high apparently Doctor didn't call me with this abnormal result, I called in as assumed it was normal but it was playing on my mind, she said it was highly likely I had an IBD and that I need to be referred for urgent tests.
I was relieved to hear that the 'urgent' referral wasn't actually all that urgent and it is in fact a guideline. They should have told me this on the phone and yet they didn't which fuelled my anxiety. Someone here (May have been you) told me it was a guideline so I do feel a bit more at ease that I haven't been singled out as being a huge worry. It will be 3 weeks Tuesday and heard nothing back yet.
I don't think the piles caused the bleeding as it seemed too severe. I had 2-3 days of bleeding diarrhoea then it just stopped and returned to normal colour. Not really typical of piles but not normal either.
I think I need to call the doctors back and explain how anxious I am as it is making everything worse. I really don't think it was fair of her to 1. Not call me with an abnormal result and 2. To tell me I almost certainly had IBD.
Either way I need answers soon as this is really affecting my mental health. She has made me think I have raging IBD and each day it goes untreated the worse I am feeling.
02-04-2018, 12:22 PM   #5
Womble
 
Join Date: Oct 2017
I agree with you 100% she has fuelled your fear, usually they are very much more vague for this very reaso.
Lots of people have raised fcp and it isnít Ibd, it is something else, my gp makes me speak to Ibd team as they have very little involvement over all in the care, itís left to the hospital.

Iíd try to avoid thinking you have a ticking time bomb, that will make you feel worse!
I have raging anxiety, gad and agoraphobia for years, so I totally get you.
I was first Iíll at 17, told was food poisoning , carried on getting ill on and off, told at 20 it was mucous colitis, which I think was old name for Ibs, carried on, served 4 years for the military, admitted 2 times for Ďfood poisoningí had my daughter, had appendix out at 22, still ill, had a scope, DONT think they got far- diagnosis pregnancy and hormones off you pop.
Carried on weight loss fatigue nocturnal poops etc extreme pain... well youíve had a scope itís anxiety.
This carried on until 3 years ago and I had a large structure and was very very sick.

But and this is THEE big but, for all those years I worked, raised 3 children,studied with the ou.

Please donít worry that your life is over,it really is not, even IF you do have something! I went 20 odd years with it ticking away. Even my bloods were put down to other causes.

Lots and lots of people have had your symptoms and been fine and not Ibd !
And even if it is, there is support and you will have a life, good times and bad, it becomes part of your life, not all of it.

Just like your anxiety, is part of you, but not all of you!
02-04-2018, 12:31 PM   #6
Womble
 
Join Date: Oct 2017
I forgot to add, not all Ibd treatments are as scary, some people is foam or suppositories depending on what and where, steroids are not fun, but if I can do um... anyone can!
I can freak out taking a Zantac!!!
I shall send u a virtual hug,cos I think you need one,
Youíre not alone, and people here are great support!
02-04-2018, 12:31 PM   #7
Anxious855
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Thank you, You are very kind x
Because of my anxiety (Which the doctors know about so which makes their actions even worse), I am imagining all kinds. Even when my rib aches I think it is because of my colon being extremely inflammed. I am worried about strictures/fistuals, everything. She seems so sure I have IBD and I can only think that was because the reading was so high. That said, if it were crazy high I would have thought I would be seen by now.
I am sorry it took so long for you to get a diagnosis. Reading through the posts here, it is shocking how long people have to wait to get a name for their symptoms. I can't believe people go years and years not knowing.
I too thought I had food posioning when I got my first bout of this. All my symptoms including the bleeding diarrhoea for a few days fitted. Yet I got ill again over Christmas with the same thing just not so severe and with hardly any bleeding. Anything bacterial would have shown up on a stool test so it unfortunately doesn't look like a simple infection
Thank you so much for your reassurance about the FC test and all your support x
02-04-2018, 12:34 PM   #8
Anxious855
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Thank you, hugs very much appreciated. Yes, steroids do scare me but if I am put on them hopefully it will only be for the short term.
Anxiety and dealing with a prospective chronic illness is very tough. I will definitely be needing this forum a lot should I be told I have an IBD. X
02-04-2018, 01:08 PM   #9
Womble
 
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They only test a few infections on the stool test, under your ribs live your gallbladder which can mess abiut and cause issues, pancreas, liver, and stomach. So theres a few things up there.
like i say about teh guidelines, 250 is high on the referral readings, BUT if you read the nice guidelines, this is actually to avoid the cost of testings..........
Even in a chart of what costs what...
My levels were last 535, post surgergical reoccurance, but on the grand scale i feel less crap than i did, and im not a good patient, i dont comply with treatment and i am a very bad advocate, patient, blah!!!
Anxiety can be blamed for a lot of things and they use the label to ignore what you say as theyve premade their discision based on the fact you have anxiety.
When i moved from up north to down south i was given a letter for new gp, which obviously i read as you do...
'Long history of stomach pain, mostly somatic in origin' ...which it wasnt hey.
The gp receptionist can give you your levels over the phone, and im thinking the 'winter flu crisis' may have impacted on you getting your appointment so far.
Here, we get a call to book you over the phone, then a few days later you have a booked time and a nurse calls you, goes over medical history and the prep procedure, then you receive prep in post.
You either go in morn or pm, id request first thing and say about your anxiety, cos then you wont have to wait around worrying.
Prep isnt tasty, but its git to be done, and you will do it!!!
Bum cream, wet wipes, dvd box set, soft loo roll and plenty of clear fluids.
Even if youre totslly freaking out on the day, the midazolam will relax you, you can hear the monitor beeps calm as you do.
You can also request to thr nurse that they try the small scope to make sure they get round.
The prep itself can cause some tiny ulcers and redness, but this will show on the biopsy as being nothing of worry.
Diverticulitis can also cause issues, but they can see this too, also little polyos which they would remove if they saw any.
If youre awake in the scope, it is interesting to see on the screen and a bit weird as the screens are pretty big!!!
Here we have 3 sets of ten min obs bicci, cuppa tea and off you go.
My husband had the endoscope, hes a massive wuss and had no sedation and was fine. He cant even do his teeth without sounding like he has morning sickness!!!!
You will get a luttle printed report of what they did and saw, and a nurse goes over this before you leave.
being anxious and tense will be clamping up the tummy muscles and making you feel worse.
Avoid nsaids, as they arent great for tummy anyway.
if they see anything, they will refer you to gi, and then follow you up from there.
First scope i dont recall
Second was not pleasant and they couldnt get past a bend,
Third scope was little one, and honestly it was easy...i felt daft for freaking out on them and making a show of myself..i actually sai yiu can do it again if you like it was easy!
You asked about food in another pist, when i had my stricture i did have to eat low fibre, not seeds, skins, and it was restrictive yes, but when your that sick you sort of stop caring.
I can now eat most things since surgery.
Medications , steroids...awful, but there you go
Pentasa had to stop,
Meant to be on mercaptapurine....
And meant to be goung on humira....we will see...
whatever happens you will be fine!
My friend had a stoma last year and shes doing great with it and is enjoying life to the full.
02-04-2018, 01:18 PM   #10
Anxious855
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Would they only refer if level was over 250?
I was told to wait for a referral letter not call.
I really hope it isn't IBD but I have a feeling my FC was incredibly high
02-04-2018, 01:38 PM   #11
Anxious855
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People have said to me "There are loads of invasive tests they do before you are diagnosed with IBD" I really hope it's not the case with me. My anxiety won't take it.
I thought I had E coli/shighella but believe that would show up already. Also heard that if the FC is over 200 it is almost certainly IBD
02-04-2018, 02:14 PM   #12
Womble
 
Join Date: Oct 2017
Thats not true about the over 200 at all, ibd is ONE cause, all it means is is that there is inflammation somewhere, from some cause,

https://www.nice.org.uk/guidance/dg1...s-from-the-NHS

Here is the nhs evidence. Have a read.

This is from another hospital site,
Reference Range

For results between 0-110 ug/g faeces: Normal faecal calprotectin ?IBS or quiescent IBD.

For results between 110-1800 ug/g faeces: Raised faecal calprotectin may indicate IBD. Mildly raised figures may still be normal. Also consider other causes e.g. infection, polyps, malignancy and NSAID use.

Note MAY indicate. Also dont start worrying about malignancy either!!

I am not a doctor obvioulsy, but the nice guidelines are really good.
I was told a letter too and it was a call, also a letter to go in for surgery...it was a call.

The most invasive test is a scope. The scans etc arent invasive. Some people have a pill cam, but that doesnt seem to be used as much round here.

When we are anxious its easy to only see the bad and not see the bigger picture.
Try to relax a bit,
02-04-2018, 02:21 PM   #13
Anxious855
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So anything more than 1800 probably ibd..
I am worried as the doctor kept evading the question when I asked what the level was so can only assume it was extremely high.
This is all so worrying, know I need to try and relax but it is so hard
02-04-2018, 02:28 PM   #14
Womble
 
Join Date: Oct 2017
No no, thats just what the RANGE is...the word 'may' meaning might...not 'will'
It says consider infectious, nsaids, etc, it does NOT say yes you will have ibd!
Read around the scary parts, look at the less scary part.
Those are only the ranges, not NOT diagnosis.
02-04-2018, 02:35 PM   #15
Womble
 
Join Date: Oct 2017
I think that my aim to help relax you hasnt worked at all.
Perhaps you should book an appt and discuss your worries with you gp, and they can chase up the referral.
02-04-2018, 02:39 PM   #16
Anxious855
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You are helping honestly. I hope I am not offending you?
I definitely need to speak to the GP about how anxious I am. It may sound crazy but this is ruining my life. I know if I DO have IBD, chances are it is mild as I only have sore ribs right now but it is the thought of all the tests/possibly being told I have a mega high level which is upsetting me.
I really appreciate your help and I really hope I am not coming across as ungrateful x
02-04-2018, 02:47 PM   #17
ronroush7
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Hope you feel better soon.
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02-04-2018, 02:57 PM   #18
Anxious855
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Thank you, I hope so too
10-05-2018, 02:42 AM   #19
elz100
 
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yea we cant diagnose you. You can get gastroenteritis with bloody diarrhoea etc. Antibiotics woudlnt help anyway
High calprotectin definitely doesnt mean it has to be IBD, its actually pretty non specific marker for inflammation.
I guess all our lives are ruined then 😭
10-08-2018, 10:53 PM   #20
vanphuccity
 
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Thank you, I hope so too
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