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07-04-2017, 12:53 AM   #1
willpwuk
 
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Waiting

So....after 4 years of going through hell with none of the 'ibs' treatments working. I finally have an actual diagnosis.


4 years ago, I suddenly lost a lot of weight, along with really bad bloating, nausea after meals, along with diarrhoea, and what i thought was constipation. After a trip to the A&E (ER) my appendix was taken out for no reason, and i was referred me to a gastro where after a colonoscopy I was then diagnosed with IBS. I tried all of the treatment options, and none seemed to be working. Symptoms would come and go on their own over a period of months. I returned to a gastro where he then referred me to do a breath test where it was confirmed i had SIBO, and couldn't digest Lactulose. Took the anitbiotics for that, however after a couple of weeks all of my symptoms came back.

Fast forward i gave up, and tried managing the symptoms on my own until i started flaring up again, and my pain got worse. Yet again another trip to A&E, and for some reason I was given a shot of prendisone, and sent home once they found my bloods were normal. I had no symptoms until January where things started coming on gradually. First my joints aching, then fatigue, then a constant low grade fever, and then pain in my lower right side. Went to A&E once again, however this time after finding my bloods normal, I was sent home....again.

Came back the next day, and this time i was admitted after they found i had 'Faecal loading' in an x ray. I was then admitted, and the doctor said i'd do an enema, and go home....however the enema did nothing at all. Came back again the next day, and this time i was admitted for a while. This doctor told me i had a partial obstruction, and that i'd have to drink horrible, horrible things to have a complete bowel cleanse. While i was there I was referred to a gastro who after a minute of seeing my x ray told me 'your small bowel is seriously dilated I suspect you may have inflammation/ a stricture there that we originally missed because it was unreachable via colonoscopy.'

They eventually did an endoscopy which showed i had gastritis and duodenitis (I already knew it wasn't H.Pylori related but i digress.) After a week of waiting i got the biopsy results back and it showed I had a few ulcers, which were all negative for H.Plyori or NSAID use. That's where Crohn's started coming into play. On the histology report it showed that i had chronic inflammation within my stomach and duodenum. MY GI said 'Yes we believe it's Crohn's however we need to wait for all the clinical, and histological reports before we can make the full diagnosis and start you on the right treatment.' He then mentioned 'Gastroduodenal Crohn's is very rare so we have to check your small bowel as well to see if there isn't anymore inflammation there.' I've done the MRI now, and i'm just awaiting the results.

Here's where i need advice though: I'm in agony at the moment but my GI, A&E, and my GP have all said their hands are tied until they get the MRI results back. Has anyone had this experience before where they've been told it's crohn's but until all of the results come back they can't start treatment?

Also the bizarre thing with me was my Inflammation marks always came back normal, along with even my calprotectin levels coming back normal (although i've only done this test twice.) Anyone else experienced this? I suspect my main issue is strictures, and that there's no activity at the moment because it did mention on the report that inflammation could be seen on deeper examination of the biopsy's along with the fact that i suspect the 'faecal loading' was actually a partial obstruction.

I feel like i friggin weirdo for saying this but you should of seen the look of relief on my face when the gastro came to my bed and told me 'we believe this is Crohn's'

I'm sorry about the length of this post, but as you can imagine it's been a long journey.

Last edited by willpwuk; 07-04-2017 at 02:03 AM.
07-04-2017, 02:53 AM   #2
Sophabulous
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Hi there!

Yep, me and you are identical! Only difference is they didn't biopsy my duodenum in the first instance so I was misdiagnosed with H Pylori and treated for that for nearly 12 months. I then lost a lot more weight when they told me to stop taking omeprazole as I physically couldn't eat, so they re-scoped and took biopsies that time. Then the GI actually lied to my face about what the biopsies suggested, but referred me for an MRI and colonoscopy so I knew something was up! I was furious when I found out they had known it was Crohn's in all likelihood for a couple of months and not told me. Grrr!

I feel your pain, my trouble started in 2012 and I was only finally diagnosed correctly last April. So yes in short, I think they knew damn well for 2-3 months that's what it was but didn't treat until colonoscopy confirmed (I do have activity in my terminal ileum as well so that was visible on colonoscopy) and they also didn't tell me about it.

My case was a bit of a disaster, I found out later when I saw my consultant for the first time that I should have been admitted but I wasn't, they didn't even prescribe me anything and I had to go to my GP 10 days later to get the steroids who was seriously unsure what dosage to give me as I don't think it's usually their place to prescribe acute meds for Crohn's. The whole thing was a fiasco from start to finish.

Gastroduodenal Crohn's is rare and I think the only reason my GP ended up referring me for more investigation was because the weight loss had been so drastic, and I was badly anaemic and folate deficient for no explainable reason. I was lucky in that I never experienced much pain, but that was a blessing in disguise because it slowed things down so much.

It is very frustrating, and even when they confirm the diagnosis there's still a little way to go towards feeling better but I can totally relate to your relief at being told they think it's Crohn's. I think I was grinning like an idiot at finding out it wasn't all in my head! My blood inflammation markers and calprotectin tests etc are always normal or only just outside normal too so i know how annoying that is when you feel like crap but on paper your body is ok. I think small bowel and gastroduodenal Crohn's exists just to gaslight us!

Best of luck, let us know how you get on x
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07-16-2017, 01:07 AM   #3
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Thanks for the message Sophabulous! It's been a hell of a journey since you replied. My pain was getting unbearable since so i ended up Hospitalised.

My MRI came back showing i had 'Thicking in my terminal Ileum.' A couple of days later i became perotinic and was sent for an emergency CT which again showed i had thickening in my TI. The whole irony of this is....I was under the surgical team (Weird. Apparently coming in with abdominal pain means you're referred straight to them....) The surgical team were adamant it was Crohn's yet the gastro team said otherwise. Even though...while in hospital i was started on Antibiotics and hydrocortisone (80mg then reduced to 40.) The gastro now wants me to remain on the steroids for a couple more weeks and wean me off before i have a colonoscopy in 6 weeks time. However he said to me 'because your blood work and calprotectin have been normal i don't think we're going to find anything but...we have been surprised before.'

Sigh. That's two tests that i've done that have showed Terminal Ileitis. I know the Gastro should be the most reliable in this case but the surgeon i was under told me his speciality was CT readings, and there was clearly inflammation in the TI. One of the on call gastro's even said 'I looked at your MRI, and yes there was definitely inflammation in your TI.' 'It is possible because you're inflammation is only in the TI that it would be missed on the regular tests.'

I'm not sure whether they want to be careful with everything because they misdiagnosed me with IBS in the first place and don't want to make any mistakes or if they think i'm 'overreacting.'
07-16-2017, 05:50 AM   #4
ronroush7
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Just wanted to wwlcone you.
07-16-2017, 07:36 AM   #5
my little penguin
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If they wait for six weeks or more of steriod use then to scope you
The odds of finding the inflammation are slim
The steriods will reduce the inflammation drastically and heal the gut
Especially after six weeks of daily steriods
Is there a reason they didn't scope you at the same time as the MRI since your inpatient ?
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07-16-2017, 07:44 AM   #6
willpwuk
 
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If they wait for six weeks or more of steriod use then to scope you
The odds of finding the inflammation are slim
The steriods will reduce the inflammation drastically and heal the gut
Especially after six weeks of daily steriods
Is there a reason they didn't scope you at the same time as the MRI since your inpatient ?
Well from what the GI said, he wanted me to do three weeks on steroids (weaning me off in that time, and three weeks without them before the colonoscopy.) I was actually meant to be having my Colonoscopy this monday but because i was already started on iv steroids when i was admitted, it ended up being postponed by the G.I. I've just gone down to thirty five (my three keys broken so i can't type it) from 40, going down to thirty then 25 etc...
07-16-2017, 09:15 AM   #7
Jabee
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Wow. What a journey. I'm honestly confused about why they haven't done a capsule endoscopy. I also don't know why doctors wait six weeks to three months after a hospitalization for crohn's/intestinal inflammation and then find nothing because the patient has been on steroids the entire time. I also don't understand why your docs are insistent on performing another colonoscopy before diagnosing you. I really love my GI but he schedules me for scopes after I've had a major flare and been on daily prednisone (60 mg and tapering down). Did the MRI show inflammation in other parts of your small bowel? And if your bowel has healed by the time you are scoped are they going to tell you "it's ibs" again (which it clearly isn't)? Sometimes doctors really confuse me!
07-16-2017, 03:37 PM   #8
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Hi Willpwuk,

I'm in the uk too. All my blood tests etc all came back normal, and still do. If they have found inflammation, and have ruled out other causes, then surely it's got to be Crohn's. They kept me on steroids to begin with, I think that's normal. If you're not happy or have any questions ring the secretary of the consultants, or write directly to the consultants. I did. You can ask for the email addresses of the secretary, she will forward your emails on for you, if you want to do it that way. My Drs always responded and made themselves available to me at short notice. Get your name in their heads and force some answers. They were all kind and respected my concerns, they wanted to help. I'm sure yours will be the same.

Good luck, I hope they get on top of things quickly for you.

Connie.
07-17-2017, 01:20 AM   #9
willpwuk
 
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Wow. What a journey. I'm honestly confused about why they haven't done a capsule endoscopy. I also don't know why doctors wait six weeks to three months after a hospitalization for crohn's/intestinal inflammation and then find nothing because the patient has been on steroids the entire time. I also don't understand why your docs are insistent on performing another colonoscopy before diagnosing you. I really love my GI but he schedules me for scopes after I've had a major flare and been on daily prednisone (60 mg and tapering down). Did the MRI show inflammation in other parts of your small bowel? And if your bowel has healed by the time you are scoped are they going to tell you "it's ibs" again (which it clearly isn't)? Sometimes doctors really confuse me!
One answer: the NHS. While free healthcare is brilliant it has it's disadvantages. Getting a test like a capsule endoscopy done is incredibly difficult. They had to refer me to a private hospital just to do a small bowel MRI. I don't understand it either. However i'm hoping that both the MRI and CT will be enough to know where exactly they need to take biopsies from. Honestly i don't know. I'm seeing my general doctor this morning to actually find out the results of the report so i'll let you know. Honestly, it's frustrating...just when i thought i was finally getting somewhere i feel like i've been knocked back a few paces.
07-17-2017, 01:27 AM   #10
willpwuk
 
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Hi Willpwuk,

I'm in the uk too. All my blood tests etc all came back normal, and still do. If they have found inflammation, and have ruled out other causes, then surely it's got to be Crohn's. They kept me on steroids to begin with, I think that's normal. If you're not happy or have any questions ring the secretary of the consultants, or write directly to the consultants. I did. You can ask for the email addresses of the secretary, she will forward your emails on for you, if you want to do it that way. My Drs always responded and made themselves available to me at short notice. Get your name in their heads and force some answers. They were all kind and respected my concerns, they wanted to help. I'm sure yours will be the same.

Good luck, I hope they get on top of things quickly for you.

Connie.
Hi Connie, thanks for your message. The information you've given me is incredibly helpful. Made an appointment to see my GP this morning so i can actually get the results of both imaging tests. Luckily i've got the secretary's email so i'm going to email her once i've gotten all my information together just so i make sure i'm not missing anything. In my case though they just don't want to seem to even utter the word 'Crohn's' with me. It's like a bad word lol. My discharge letter even says 'Terminal Ileitis' so i just want to understand why they seem so reluctant to think it 'most likely' is CD.

Will
07-17-2017, 03:49 AM   #11
Sophabulous
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Oh you poor thing! I've found my hospital Gastro department was very reluctant to commit to it being Crohn's until they had multiple biopsies to confirm and I was never even admitted!

Hope you are getting there now, keep us posted x
07-18-2017, 10:56 AM   #12
willpwuk
 
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FYI: I just have to mention this. Steroids are f****** awful D: my symptoms are starting to improve but the side affects are bloody annoying.
07-19-2017, 03:05 AM   #13
Sophabulous
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Haha, yes I was the queen of hot flushes and mood swings on them. One minute I was in hysterics, the next I could kill a man :-D

I didn't though....just to be clear ;-)
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