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09-01-2016, 12:14 PM   #1
williampwilkins
 
Join Date: Aug 2016
My Story

Hi everyone. I'm new here; although my problems have been going on for 4 years now. I know no one on here is a medical professional but what i'm trying to do is piece things together. I'll start from the beginning.

4 years ago, I suddenly started getting very sick. I was in pain all the time (the middle of my abdomen, and my right side.) I was going to the toilet 20 times a day minimum. I lost a lot of weight. I went from 79kg down to 60kg (Apologies for those of you in America i don't know what that is in ibs. lol)

Anyway, after countless visits to the gp i was told it was 'IBS'...A few weeks later the pain got so bad i had to force myself down to the GP and tell them something wasn't right. They wrote a note for me and i headed to A&E funnily enough; the note mentioned 'to rule out appendicitis.' Anyway after the 6 hour wait to see a doctor they finally analysed me. They instantly decided it was my appendix that needed to be removed. Fast forward post surgery....The doctor came to show me my appendix....(It looked completely healthy.) He gave me some excuse about how 'it was inflamed from the inside.' They also told me that i had way too much mucus in my system.

Moving on a month after surgery, I was still experiencing severe pain in my right side. My gp reluctantly (Yes, really...) referred me to a gastroenterologist. Where after a 4 month wait they finally did a colonoscopy. Which came back clear.' I started to accept that i'd have to live with so called 'IBS' I spent the next year trying EVERYTHING the lowfodmap diet, gluten free, anti diarrhoea medication, peppermint capsules etc. Nothing worked. The only difference was I was gaining weight again but i was still in pain. So much so that i spend most of my days lying on my couch unable to do anything.

Went to see my gastro again, and told him nothing was working. He referred me to a pelvic floor unit at Guys and St thomas's hospital. Where they concluded I have a condition called Animus. Where my rectum is constantly tensed...Yet again...to no avail. Although i was only going once maybe twice a day. My stools were solid but very painful to pass. I was having moments where i'd have the most excruciating pain I've ever felt just before passing a normal stool (this still happens now but we'll get there.) I end up waking up in the middle of the night sometimes with this same excrutiating pain before having a diarrhoea episode.

Over the past 4 years i've been to A&E so many times; to the point where they diagnosed me with Anxiety in the end. The only tests they ever do is a CBC...as soon as that comes back normal they tell you to F off.

Let's go back to today now; I still have this constant pain in my right side, and middle of my abdomen. It just doesn't go away. Not even with powerful painkillers. My rectum almost always hurts...I'm still passing huge amounts of mucus whenever i go to the toilet, and i feel like i'm not getting anywhere.

I'm not trying to take anything away from you guys that actually have CD believe me, I've met people with CD since my episode began, and seeing what you guys go through hurts believe me.

What frustrates me more is that I don't actually know what the hell is going on with My gi system. Being Told 'it's only ibs, it's nothing serious, you're over reacting' really doesn't sit well with me. I don't understand how IBS wakes me up in the middle of the night in agony and breaking out in sweats before i spend the next half an hour crying in pain on the toilet.

At this current moment i'm trying to get an upper endoscopy or pill cam sorted but my current gastro doesn't 'see it as necessary.' although I've never actually had one done.

What i'd like to ask you guys is this:

Have any of you had a dx of CD without any passing of blood actually involved?
Did you have your first flare up get a wrong Dx and things got worse years later?
Can 'IBS' even cause severe weight loss?
Have any of you ever had normal inflammation markers before you Dx?

If anyone has experienced anything similar to my story; i'd love to hear it. Like i said i'm not looking for a dx; i'd just like to try and piece things together before my next gastro appointment.

Thank you so much to everyone that takes time to read this.

regards,
Will
09-01-2016, 03:59 PM   #2
ronroush7
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Welcome. I have had Crohns for twenty six years. They tried to tell me that I have ibs also but after a second enterography they determined the Crohns was flaring up. I say that to say to you that you know your body better than anyone else. If you think there is something else going on keep on pushing . You may need a second opinion. Let us know
09-02-2016, 09:28 AM   #3
williampwilkins
 
Join Date: Aug 2016
Welcome. I have had Crohns for twenty six years. They tried to tell me that I have ibs also but after a second enterography they determined the Crohns was flaring up. I say that to say to you that you know your body better than anyone else. If you think there is something else going on keep on pushing . You may need a second opinion. Let us know
Hi Ronroush7 thanks for the warm welcome. That's insane. Sorry i'm not to familiar with what an enyerography is. What does that involve?
Rightttt. exactly! That's what i'm doing at the moment. Waiting to hear back from my gastro so i can get an appointment.

Thanks, I will do!
09-02-2016, 10:28 AM   #4
eleanor_rigby
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Join Date: Aug 2012
Location: Cheshire, England, United Kingdom

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Christ. With this crap care the only place you can possibly be from is the UK
That said I am surprised if you had IBD that they would not have seen damage to your intestines during your surgery to remove your appendix. And that your colonoscopy was normal.

- I have a diagnosis of CD and never pass blood. My fecal calproctectin last time was 60 (highest ever 70), which means there is hardly any blood in my stool.
- Yes things got worse for me after misdiagnoses
- Weight loss is associated with IBD. I wouldn't think IBS causes this UNLESS you are eating less and consuming less calories due to pain.
- Yes I have had normal inflammation markers and a normal CT scan BUT abnormal colonoscopy and upper endoscopy.

I think you need to have small bowel CD ruled out, which can be done by:
- Pill cam
- Upper endoscopy
- Imaging tests such as MRI, CT scan. In the UK though they would probably rather refer you for an ultrasound - this is USELESS.

If necessary go private.
__________________


2nd Generation affected

Symptoms since 2006 (age 17)

Emergency open bowel resection after perforation in 2011 (age 22) (wrongly diagnosed as burst appendix ). Three years remission following this unmonitored

DX with perforating small bowel Crohn's Disease 01/2016 (terminal ileum, duodenum) and coeliac disease (age 26)

Meds:
75mg azathioprine
Gluten-free diet
09-02-2016, 10:59 AM   #5
ronroush7
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Hi Ronroush7 thanks for the warm welcome. That's insane. Sorry i'm not to familiar with what an enyerography is. What does that involve?
Rightttt. exactly! That's what i'm doing at the moment. Waiting to hear back from my gastro so i can get an appointment.

Thanks, I will do!
Enterography is imaging and you have to drink contrast.

09-02-2016, 12:30 PM   #6
williampwilkins
 
Join Date: Aug 2016
Christ. With this crap care the only place you can possibly be from is the UK
That said I am surprised if you had IBD that they would not have seen damage to your intestines during your surgery to remove your appendix. And that your colonoscopy was normal.

- I have a diagnosis of CD and never pass blood. My fecal calproctectin last time was 60 (highest ever 70), which means there is hardly any blood in my stool.
- Yes things got worse for me after misdiagnoses
- Weight loss is associated with IBD. I wouldn't think IBS causes this UNLESS you are eating less and consuming less calories due to pain.
- Yes I have had normal inflammation markers and a normal CT scan BUT abnormal colonoscopy and upper endoscopy.

I think you need to have small bowel CD ruled out, which can be done by:
- Pill cam
- Upper endoscopy
- Imaging tests such as MRI, CT scan. In the UK though they would probably rather refer you for an ultrasound - this is USELESS.

If necessary go private.
Right! I never had to visit a gp ever until 4 years ago. Made me realise how crap the service actually is. They almost give you a look of disgust when you want a particular test ordered. Literally fuming atm because my g.i discharged me 2 months ago because he assumed I was under care at another hospital
Anyway now; I have to go back to my GP (who doesn't believe me in the first place, and get another referral to go back.) Great work NHS.

See that's where things don't add up for me. I was still eating regular amounts. Everything would just come out the other end though (sorry for tmi lol.)

Thanks for your post Eleanor. It has actually shed some light for me. Once i finally get back in to see my gastro i'm gonna ask them to check my upper g.i.

P.s. I wish i could afford private, i really do

Hope you're doing well!
09-02-2016, 02:38 PM   #7
eleanor_rigby
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Join Date: Aug 2012
Location: Cheshire, England, United Kingdom

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Ha well I am actually diagnosed CD and for me the care hasn't got any better. I am still made to feel like a hypochondriac.

Me: I'm still in pain
GI: you are doing really well, poo in this pot, goodbye.

When will they realise that prevention is more cost-effective in the long-term? God knows how much I cost the NHS when I needed emergency surgery.

You might be able to get an MRI scan for under 200, which might be worth it as a last resort if you could save over a couple of months? Not sure though. Other than that you could just keep going to different GPs? Change practices if necessary. If it is IBD you don't want to mess around for long, things can get ugly quickly.

I would also suggest a blood test for coeliac disease and also get the fecal calproctectin test (although if you have upper GI issues this may be normal for you).
09-03-2016, 03:03 AM   #8
williampwilkins
 
Join Date: Aug 2016
Ha. Omg that's so bad. I would of thought they keep track of you properly. You know, considering you had emergency surgery and all....Wow.

Right. They'd be better off doing more tests, and like you said using a prevention mind set. Not only would a ton of peoples lives be saved + improved but i'm sure it's like you said less cost effective but sigh....nhs.

I just read about your surgery. They seriously thought it was a burst appendix?Sigh.

In regards to me. I actually went back to my gastro to demand more tests be done (because I've started losing weight again + back to going 20 times a day + in pain.) Guess what i was told?

'You have to go and see your gp first.'

What the jksjksjjks does my GP know about gastro issue? I'm really getting tired of this care.

I've changed practises so we'll see what they say. They honestly make me feel like i'm being a waste of time.
09-04-2016, 06:04 AM   #9
williampwilkins
 
Join Date: Aug 2016
Little update:

Ended up in hospital last night because i was in a lot of pain. They concluded they were going to do a pill cam, and upper endoscopy to check my upper g.i and small bowel because they think they may be missing something.

They gave me prednisone while i was there which they'd like to continue because a new doctor their believes that it is useful even if this may be just severe ibs because of new evidence suggesting there is a link between ibs and low-grade inflammation. Their initial thoughts now however; are more likely CD that is hiding in my small bowel. Dr said my CRP was quite high (he didn't give me an exact number.)

I think i almost cried yesterday because i finally feel like i'm getting somewhere.
09-04-2016, 06:10 AM   #10
ronroush7
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Little update:

Ended up in hospital last night because i was in a lot of pain. They concluded they were going to do a pill cam, and upper endoscopy to check my upper g.i and small bowel because they think they may be missing something.

They gave me prednisone while i was there which they'd like to continue because a new doctor their believes that it is useful even if this may be just severe ibs because of new evidence suggesting there is a link between ibs and low-grade inflammation. Their initial thoughts now however; are more likely CD that is hiding in my small bowel. Dr said my CRP was quite high (he didn't give me an exact number.)

I think i almost cried yesterday because i finally feel like i'm getting somewhere.
Glad that you are finally getting somewhere.

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