Feeling like a hypo :(

[Hollaka79]

Hi everyone. Relatively new to this forum & been doing a lot reading on here about the failure to diagnose Crohns. So here's my story (and have copied and pasted it from a reply I just made on another thread so sorry for the double up, just no energy to type it all twice). I've just been discharged from hospital for the second time in a month. After a Normal colonoscopy (apparently they saw one ulcer), normal MRI, slight swelling on CT & x Ray and a FC of 600 two weeks ago,Drs put me on steroids. Initially they helped but on taper & few weeks later back in the ER. Got admitted again, this time they said I was constipated (even though I have D most days going 10-15 times a day) and gave me movicol then made me do a moviprep yesterday. Still got tummy ache, severe fatigue/exhaustion, sweats & just generally feel unwell. I've had crohns 30 years & been in remission 20 years & this is the first time I've kicked up a fuss with my Drs in that 20 years. But cos most my labs are ok I feel like they think I'm going mad?! I'm doing as they say with the moviprep etc (which makes me feel worse) but I'm having to taper off steroids now (currently on 30mg) and am worried it's gonna flare again badly & they'll blame it on constipation or something equally ridiculous! They have arranged for me to have a pill cam as my CD has always been in my small bowel so I'm really hoping that confirms it again & im not going mad (which like I said they start to make me feel like I am). I'm so fed up with it all, I have two children & im stuck in my bed missing precious time with them all because I'm not the Stereotypical Crohnie. Is there anyone out there who's gone through confirmed diagnosis in past & now flaring but with most labs being ok except a high FC (600) and Drs making you feel like you're a hypochondriac??

 

[Sophabulous]

Hi there,

So much of what you just said resonates with me, the only difference being I'm newly diagnosed. All my bloods are good, last FC was 112 and yet we're now at the point of discussing biologics because my small duodenum and TI are just a freak show!!

This can only be seen on scopes and MRI. I could scream when doctors just go off my bloods and don't actually LOOK at the images. Although I do think that 12 months down the line with very little improvement we are starting to get onto the same page at last!

Sorry this is of no real help but I completely understand how you're feeling for what it's worth!

 

[ronroush7]

Last year, i had symptoms. They did testing and couldn't find anything so they said i had ibs. I kept having symptoms. Towards the end of the year, they asked me if i wanted to be tested again. I said yes. I dont know what the difference was but the second time around they found active Crohn's disease. Maybe you need more testing.

 

[Hollaka79]

Thank you, my MRI was normal apparently but they said with Crohns it's can be missed on an MRI as inflammation inbeds itself in the intestines sonits harder to see. My colonoscopy only showed one small ulcer which they said is normal for a crohns patient. And my CT & X-ray showed mild swelling of small bowel. Bloods are fine (liver was haywire initially as azathioprine had caused it to go bad so stopped azathioprine & now has returned to normal), so only red flag is the calprotectein at 600 (which is know is very high & has been rising over last few months) but consultants say that's not enough to start the biologics so have me on predisolone (which are making me super anxious & down) and will do a pill cam in a few weeks to see if any inflammation in small bowel. My opion is, surely with a FC of 600 (results were 110,132,200,600 over last cpl mths) I have inflammation somewhere. I feel soooooo poorly with it all, have lost 2 stone & am exhausted. I'm a single mum of two amazing girls (11 year old & 21 mth old) and I'm missing out with them & my poor Mum is having to look after them as I barely have enough energy to get to the loo! I am so miserable right now with it all & am starting to feel like I'm going mad & maybe it's just all me imagining it all (even tho my mums witnessed my toilet goings!) These "Dr's" have a lot to answer for & im glad I have at least one of the registrars on my side as the rest keep saying I'm just constipated

 

[ronroush7]

I hope they find something in the pill can.

 

[Crohns11]

Thank you, my MRI was normal apparently but they said with Crohns it's can be missed on an MRI as inflammation inbeds itself in the intestines sonits harder to see. My colonoscopy only showed one small ulcer which they said is normal for a crohns patient. And my CT & X-ray showed mild swelling of small bowel. Bloods are fine (liver was haywire initially as azathioprine had caused it to go bad so stopped azathioprine & now has returned to normal), so only red flag is the calprotectein at 600 (which is know is very high & has been rising over last few months) but consultants say that's not enough to start the biologics so have me on predisolone (which are making me super anxious & down) and will do a pill cam in a few weeks to see if any inflammation in small bowel. My opion is, surely with a FC of 600 (results were 110,132,200,600 over last cpl mths) I have inflammation somewhere. I feel soooooo poorly with it all, have lost 2 stone & am exhausted. I'm a single mum of two amazing girls (11 year old & 21 mth old) and I'm missing out with them & my poor Mum is having to look after them as I barely have enough energy to get to the loo! I am so miserable right now with it all & am starting to feel like I'm going mad & maybe it's just all me imagining it all (even tho my mums witnessed my toilet goings!) These "Dr's" have a lot to answer for & im glad I have at least one of the registrars on my side as the rest keep saying I'm just constipated [emoji30][emoji30][emoji30]

I know how you feel. I was diagnosed 5 years ago with crohns I'm on azathioprine. I'm march I saw my GI and asked how I was I stated I was having watery bowel movements 20+ most days he told me to stop my laxatives, but I said I feel constipated, he said no. Anyway my partner was with me and stated I could have overflow constipated diarrhoea, he reluctantly sent me for a X-ray and guess what I was constipated. I have severe right side abdomen pain, but I'm always worried as I had a partial blockage a few years ago. So I really have to keep on top of things. 9/10 my bloods are normal, but when I had a colonoscopy it showed crohns in the terminal ileum. I'm not a stereotypical crohnie either. It is hard sometimes but we all know our own bodies I know they are specialist but they don't suffer like we do. Sorry prob not much help. But just to let you know your not on your own.

 

[ronroush7]

Agree

 

[Hollaka79]

Thank you all. Been in today to drop off sample for another FC (after they lost last weeks one ) Had another X-ray done to see if moviprep worked at weekend as they said the same about over flow diarrhoea. I also had a blockage 20 years ago so am jittery about getting blocked up this quickly as symptoms very similar from the blockage days. Since using the moviprep I'm back to not going again but as on steroids now I'm guessing that's why. It's better than the 15+ times a day I was going pre steroids though... Really just want a resolution or at least a plan now. Ugh. Xxx

 

[MarkB]

wife's colonoscopy led Dr. to conclude "crohn's is in deep remission." Next week wife in hospital w/ severe flare-up and blockage in terminal illium. CT showed 20 cm of inflammation in small intestine.

chronic steroids are a problem. Just posted more deets on our 20 year crohn's journey.

Wife shares some definite common stories with you. Good luck.

 

[Hollaka79]

Well my FC came back at 420, down from over 600 before I started the steroids. Booked in for a capsule test next week but worried they won't find anything on that now as have been on steroids for the past month. If they tell me that's normal I don't know what I'm gonna do as clearly something's up as my FC was so high & was soooooo poorly then steroids have made me feel better so logically speaking that can't be ibs (especially with the fc being high & coming down on steroids), but I feel my Drs are bored with me now & just think I'm being difficult

 

[Dmarks70]

Well my FC came back at 420, down from over 600 before I started the steroids. Booked in for a capsule test next week but worried they won't find anything on that now as have been on steroids for the past month. If they tell me that's normal I don't know what I'm gonna do as clearly something's up as my FC was so high & was soooooo poorly then steroids have made me feel better so logically speaking that can't be ibs (especially with the fc being high & coming down on steroids), but I feel my Drs are bored with me now & just think I'm being difficult

I was diagnosed with the pill cam and apart from the prep it's the easiest test I've had. What are your symptoms? I think my Drs are also bored with me sometimes as I don't have 'typical' symptoms. My Dr wanted me to go on humira but I bottled it as my symptoms aren't too bad at the moment. Just stomach pain and fatigue. Let us know how you get on.

 

[rorho19]

Crohn's 11...yeah some of us are not the stereotype- I have illeal CD - which is very common - but I have C with it not D..I haveo use osmotics to keep things moving and supposedly to reduce the pain of stuff moving through my 2 strictures in the ileum.

I have also had regular bouts of urinary urgency ( I'm male) that are a nighmare..indeed this was my first symptom ..to the point where I needed sedatives to get any sleep atall. Seems like it was constipation leaning on the bowel after being compacted through the strictures.

I am currently signed up for illeal resection to remove the strictures in a cuple of months ( 14 week wait on NHS in UK). This despit 112 calproctin and nothing detectable in blodds. Azathioprine has got me into remission but fibrosis in strictures give me pain and constip.

 

[Hollaka79]

I was diagnosed with the pill cam and apart from the prep it's the easiest test I've had. What are your symptoms? I think my Drs are also bored with me sometimes as I don't have 'typical' symptoms. My Dr wanted me to go on humira but I bottled it as my symptoms aren't too bad at the moment. Just stomach pain and fatigue. Let us know how you get on.

They've pushed my capsule test back to next Friday now as the machines broken apparently. Anyway, my symptoms pre starting the steroids, were severe tummy ache, diarrhoea (15+ times a day), major fatigue, nausea & I lost 2 stone in 2 months (could barely eat). They said I had bile salt malabsorption initially which showed on a sechat scan so they treated me with Questran & Imodium. They kept saying that cos my colonoscopy & MRi (first one was done in October) were normal it wasn't my crohns. So I tried functioning on codeine, morphine, Questran, Imodium & anti sickness pills but over Easter I got so poorly I could barely get out of bed so Mum took me to the hospital. There they thought I had an obstruction at first & then when they ran bloods my liver had sky rocketed (turns out the azathioprine wasn't working correctly & only causing liver damage), other than that bloods were ok (ESR & CRP) but my FC was over 600. They said on x ray I was slightly constipated & had some swelling in small bowel. So they started me on steroids. Did another MRI (normal) & the CT scan I'd had a couple weeks earlier again just showed slight swelling. I had to discharge myself after a week as my daughter was sick (single mum), and I was feeling better with the steroids (apart from being stressed & anxious as they make me loopy). Then couple weeks later the diarrhoea started up again (having been constipated for a few days) & the pain was back so got readmitted for IV steroids but after 2 days they discharged me saying the x Ray showed major constipation so said I had to start Movicol (which made me really ill) then do a moviprep clean out. So I've done all that & still have tummy ache (not as bad as pre steroids) I'm constipated now but going tiny amounts 10+ times a day. My belly looks like I'm 6 months pregnant & I'm exhausted constantly. I'm on the steroid taper about to come down to 20mg & they won't start me on any other meds til I've had the capsule. My FC last week came down to 420 so my argument with them is if it's only bile salt malabsorption then my FC wouldn't be 600, come down to 420 on steroids & I wouldn't feel better on steroids (I'm no longer taking any meds for the BSM as haven't needed it - again making me believe this is my crohns). I'm gettting so tired with it all & I really think they think I'm crazy & are just trying to placidate me to shut me up. It's really got me down as I have two children (1&11) and I'm having to have my mum watch them as too sick to deal with them. Just wanna feel better... sorry for the long post, just realised how much I wrote, didn't seem much in my head

 

[Hollaka79]

Crohn's 11...yeah some of us are not the stereotype- I have illeal CD - which is very common - but I have C with it not D..I haveo use osmotics to keep things moving and supposedly to reduce the pain of stuff moving through my 2 strictures in the ileum.

I have also had regular bouts of urinary urgency ( I'm male) that are a nighmare..indeed this was my first symptom ..to the point where I needed sedatives to get any sleep atall. Seems like it was constipation leaning on the bowel after being compacted through the strictures.

I am currently signed up for illeal resection to remove the strictures in a cuple of months ( 14 week wait on NHS in UK). This despit 112 calproctin and nothing detectable in blodds. Azathioprine has got me into remission but fibrosis in strictures give me pain and constip.

Did they find your strictures on an MRI? I'm worried that I have strictures in. Small bowel & it's been missed on my MRI. They way I get so constipated then get overflow diarrhoea is so similar to how I was 20 years ago before my resection & they only found that by small bowel follow through. My belly literally feels like it's gonna explode I have same issue with weeing, have to lift my tummy up when I go as it presses on bladder & can't go properly then every time I wee I have to do a tiny number 2 as well which is weird as pre steroids it was constant diarrhoea for about 5/6 days then constipated then back to diarrhoea again. It's exhausting. Barely leave the house nowadays as never know if I'm gonna be near a toilet... Fun times