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andy9898

Joined
Nov 25, 2016
Messages
19
Location
East midlands
Hi everyone how long was it before you got properly diagnosed? Just been my doc who looked at my test results from December and he say it looks like IBD (Crohns) but can't confirm this as it such a hard disease to diagnose, is this true?

I'm sick of bleeding and the cramps, I have a pain in my lower left bum cheek that travels down my leg which he thinks as my bowel is inflamed it's putting pressure on a nerve!, I tried gluten free which did no more than empty my wallet, can someone give me an insight into there experience please 🙂
 
Hi Andy,
sorry for your struggles.

My personal experience with Dx is not typical.
I was sick on/off my whole life plus no stranger to various pains.
I started secret toilet bleeding in summer of 1995.

Early hospitalizations & surgery age3 have left me with white-coat-syndrome PTSD.
Trauma begets avoidance. I avoided doctors like the plague!

Got so sick in Feb 2010 ended up first-time presenting to a sharp gastroenterologist.
My kid bro with CD took me to the next city to his guy & his CD appt.
Unscheduled flex sigmoidoscopy, without benefit of any drug, was difficult.

My physical body was in very bad shape when I finally "gave-in to go-in".
I ran for 15 hard years bleeding and hurting and hiding.
I was formally diagnosed with Crohn's disease in a single, trying day.
Your mileage can, should and will vary!

A formal CD Dx is usually a tricky and multi-step process of discovery.
hope you find some answers,
and some relief,
peace,
w

ps
What test have you had? What did they say? Do you have "your" copy?
: D
 
Last edited:
In 1989, I had surgeries for a fistula and hemmrhoids . I was having trouble healing from the surgeries. In 1990, I visited a doctor who determined that I had Crohns which was slowing down the healing process.
 
The whole diagnosis process for me took about a year and half. I first landed in the hospital with appendicitis and a ruptured appendix. Thickening of the adjacent ileum due to inflammation was noticed at that time but was thought to be a side effect of the appendicitis.

A year later I end up back in the ER with severe anemia. They treated this with emergency transfusions and started a hunt for a reason for the blood loss. Six months more of blood tests, upper and lower endoscopies, MRE, and a capsule endoscopy finally arrived a diagnosis of Crohn's.
 
I have had stomach pains off an on for approximately 10 years and for the most part constipation. About 5 years ago the pain started to become more intense and more frequent so because of the area the focus on testing was my uterus, and everything came back normal so I was fine...and should not have any pain, fever, chills, swellings, bloating, fatigue. Fast forward 4 years dealing with these symptoms and new ones arising from time to time to July 2016 and now it cannot be ignored as I am getting a large amount of bleeding and yet another colonoscopy which finally shows inflammation. So I was prescribed some medication and told to repeat test in a few months. This one shows ulcerated bowels and biopsies show chronic ulcerated colitis but still......no diagnosis, no treatment. I am now scheduled for a pill camera test and gallbladder test because my doctor doesn't think I fit the criteria for Crohns. So at the moment I am on month 8 of eating very few items of food BUT steadily gaining weight...which is very depressing. And for the most part just working and sleeping at home. I call it existing. I hate the thought of having Crohns. It made me even more nauseous at the beginning but now I just want something to try and feel better. I hope you get some sort of diagnosis soon.
 
dejavucandace said:
I have had stomach pains off an on for approximately 10 years and for the most part constipation. About 5 years ago the pain started to become more intense and more frequent so because of the area the focus on testing was my uterus, and everything came back normal so I was fine...and should not have any pain, fever, chills, swellings, bloating, fatigue. Fast forward 4 years dealing with these symptoms and new ones arising from time to time to July 2016 and now it cannot be ignored as I am getting a large amount of bleeding and yet another colonoscopy which finally shows inflammation. So I was prescribed some medication and told to repeat test in a few months. This one shows ulcerated bowels and biopsies show chronic ulcerated colitis but still......no diagnosis, no treatment. I am now scheduled for a pill camera test and gallbladder test because my doctor doesn't think I fit the criteria for Crohns. So at the moment I am on month 8 of eating very few items of food BUT steadily gaining weight...which is very depressing. And for the most part just working and sleeping at home. I call it existing. I hate the thought of having Crohns. It made me even more nauseous at the beginning but now I just want something to try and feel better. I hope you get some sort of diagnosis soon.
Click to expand...
I hope you get a diagnosis soon.
 
My course to a correct diagnosis was long. I had years of bloody stools in the 1980s, but no pain, etc.. In 2004, I had a flare and went to the ER 6 times in 3 months. My G.I. at the time did a colonoscopy. This colonoscopy - he could not get the scope into the Terminal Ileum. He told me I had IBS, and never told me about not being able to finish the scope! I found out about this 6 years later, when I had another attack. I was getting old medical records put together for my new G.I. and surgeon.

In 2010 I had an attack and ended up in the ER on Father's Day. The ER doc ordered abdominal x-rays, blood tests, and then a abdominal CT scan. He became the first to mention the possibility of Crohn's Disease to me. I was officially diagnosed within a couple of months. In October 2010 I had surgery, where about 3.0 ft of small intestines and 6 inches of colon were removed. It was a long haul. But everybody is different.
 
So I could be on for a long wait then!

Tuff - I've had stool sample done, countless physical exams, 2 blood tests and a colonoscopy, they have found some raised levels in my recent bloods not sure what they are tho, do you think an MRI will be next?
 
Sadly, it is a long journey. For me, in hindsight, ignorance was bliss. I was diagnosed with IBS in my teens. I had random episodes of pooing my pants, pains, living in the loo, which my GP put down to bowel parasites, gave me Flagyl, it improved. Always passed off as IBS. I did have a colonoscopy 10 years ago which was clear, so still IBS.
In March 2015 I asked my GP for a referral back to colonscopy guy as I knew something wasn't right. The pain! The "Anal Period"!. The staggering amount that could come out of a human's bum! She sent me to a new Dr who she said she would sent her best friend to.
Dr Fat had recently lost 17kgs himself, so clearly I would feel better if I lost weight too. Repeat colonoscopy and gastroscopy = Crohn's Disease. Definitely not Coealic. Had me on 5mg steroids, with a quick taper, then 750mg pentasa daily. When I told him I wasn't feeling better he said that I needed to learn to live like this. About a year later, including regular checkups with him, I reported that original symptoms were back in full force, with the symptom of pooing blood only. He sent me to Dr Ace. Bang! 4.8gms pentasa, stomach ulcers, and the very unwelcome addition that I did indeed have Coeliac disease. Bloodwork show Hypothyroidism. Rheumatologist confirmed Arthritis. Dietician told me that he felt so sorry that my new diet was so brutal - Coeliac, lowFODMAPS, Fructose Malabsorption. Now onto 3rd Gastro as I need to step up to biologics.
I wish I didn't know what MTX stands for but I do, as I have self-injecting for 8 months.
Find a happy place and let the drs shove things in places of your body that you didn't know existed.
Have CT scans, MRI's, Pill Cams (I haven't had that as I'm sure I'll need to take out a bank loan for it). Take notes of questions, then ask them at every appointment. Do not feel like you need to rush your time with your specialist - YOU are paying THEM, plus you've been waiting a long time for your turn.
It will get better (I tell myself). It won't be 100%, but it will be bearable (I tell myself).
I hope you can tell yourself this too.
 
Andy, if your colonoscopy showed an inflamed bowel, I'm not sure if an MRI is necessary. I'm no doctor though. Are you on any medications right now?
 
About 20 years..

Though to be fair most of that time I just accepted the 'just IBS' diagnosis and only sought help again once it had got a lot worse and I'd lost lots of weight. But even then it took them 6 months to decide it was Crohns and another 2 months to tell me.
 
DougUte said:
My course to a correct diagnosis was long. I had years of bloody stools in the 1980s, but no pain, etc.. In 2004, I had a flare and went to the ER 6 times in 3 months. My G.I. at the time did a colonoscopy. This colonoscopy - he could not get the scope into the Terminal Ileum. He told me I had IBS, and never told me about not being able to finish the scope! I found out about this 6 years later, when I had another attack. I was getting old medical records put together for my new G.I. and surgeon.

In 2010 I had an attack and ended up in the ER on Father's Day. The ER doc ordered abdominal x-rays, blood tests, and then a abdominal CT scan. He became the first to mention the possibility of Crohn's Disease to me. I was officially diagnosed within a couple of months. In October 2010 I had surgery, where about 3.0 ft of small intestines and 6 inches of colon were removed. It was a long haul. But everybody is different.
Click to expand...

I'm new to all of this. I've been told unofficially that I have crohns. Waiting on stool spec and biopsy results from an emergency colonoscopy. On meds for crohns however. Anyhow, my question is if you've had any, or know the likelyhood of fistulas, post surgery.
 
Tuff said:
Andy, if your colonoscopy showed an inflamed bowel, I'm not sure if an MRI is necessary. I'm no doctor though. Are you on any medications right now?
Click to expand...

That's correct for making a diagnosis. Seeing the lesions visually on colonoscopy renders the MRI unnecessary for diagnosis. However, the doc may still want to see the MRI results to better understand the extent of the disease - how much of the small bowel is involved.
 
No meds now as he says I need to see more of a gastro specialist. Out of my own interest I weighed myself last night first time in a month, and I've lost more weight too!
 
andy9898 said:
No meds now as he says I need to see more of a gastro specialist. Out of my own interest I weighed myself last night first time in a month, and I've lost more weight too!
Click to expand...
If you've been seeing your GP, that's probably why he doesn't want to give a diagnosis. Hopefully you will see a gastro soon, and get on some medications.
 
Welderfitter1 said:
I'm new to all of this. I've been told unofficially that I have crohns. Waiting on stool spec and biopsy results from an emergency colonoscopy. On meds for crohns however. Anyhow, my question is if you've had any, or know the likelyhood of fistulas, post surgery.
Click to expand...

Hi Welderfitter1!

I had a fistula that was connecting 2 portions of bowel that should not normally be connected in that way. It was repaired when I had my surgery. I have not had any fistulas since the surgery. I have been on Humira for 5 1/2 years. Just recently changed to Entyvio. Humira did a really good job of controlling symptoms, but recently found it was losing effectiveness.

I really do not know what the likelihood of fistuals are post surgery. What meds do they have you on?
 
Thanks everyone super helpful to have an insight into other people's experiences, just checked my nhs referral portal and I'm on an urgent appointment, whatever that means on the NHS 😆
 
I'm on prednisone, Mezavant and salofalk. It's three weeks Thursday since my scope. Is it safe to assume that since I haven't heard anything, there is nothing more serious to hear? Feeling cautiously optimistic.
 
I would call the Dr's office and ask for the results. Dr's offices are notorious for getting busy and not calling about test results.
 

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