Crohns???

[Stacylouise14]

Hi all.

So for a while Iv been suffering with bad back bloating, low iron and pain ect.
The gp thought it was a gynae issue so requested a scan, my scan come back saying my ovary was rather large so my gp then requested an ovarian cancer blood test.
Whilst requesting this she asked about my bowels which I told her had been a little off but I was diagnosed with ibs 17 yrs ago so I just said I think it’s that playing up.
Anyway she said I think it’s wise to do a FIT test.
I done my bloods and the fit test and within 2 days she rings me saying my FIT results are high and I need an urgent colonoscopy under the 2 week cancer rule.
Day after a surgeon at the hospital rings and asks me all kinds of questions, he said my test was extremely high showing inflammation and bleeding from my insides and needs investigation.
I realized that these issues have been going on quite a while,
Severely constipated
Very dark black/brown stool (obviously blood)
Pain
Extremely weird loud embarrassing noises
Very Bloated
Feeling not empty/ sore bum
Extremely tired
Lots of mucus white/yellow/ orange
Unable to pass wind

I just put all these symptoms down to stress, low iron and ibs.

I had the colposcopy on the following Saturday and the prep was horrendous, I was violently sick and in a bad way. Anyway thank god all was ok and clear no cancer but they have requested I have an MRI of my small bowel as they suspect crohns this has been requested and I have an appt with a consultant again next week. No scan yet.

Sorry for the long winded post, has anyone had any of these symptoms with crohns??
The loud noises have been getting worse since May it’s like a haunted house in my tummy with dodgy pipes!!
I thought it would usually be diarrhea not constipation??

They have always said my low iron is due to my periods but now I’m wondering if it’s been this all a long.

Any help or advise welcome.

Thanks

So I have ulcerative colitis and had exactly all the symptoms you mentioned just before being diagnosed. The only one I didn’t have was the wind as I was full of it but I have Ibs Aswell. My iron is often low as I’m anemic and sadly it often goes in conjunction to having ibd.

With crohns or colitis you can get diarrhoea and constipation believe me I get both and sometimes it’s horrific. I’ve also had the horrible noises and mine sounds like I’ve got an alien in there half the time I’ve always been told it’s either wind or when I’m constipated.

Hopefully your scan hurries up and you can get the answers you need. Think it took 4 weeks after my scan to get the answers but by then I was on steroids as we were 100% sure it was colitis.

Thanks so much for your reply, so I could be either or??
To be honest Iv not felt right for a long time and all the signs have been there but due to everyday life, kids and stress I just passed it all off as my iron and ibs.
I’m so drained some days I just have no physical energy and I have 2 children.
My iron has been low for yrs.

Thank you, I hope it’s quick too, To be honest I can’t fault the nhs, I had my colonoscopy within 10 days and they have requested a scan and now it’s just the MRI scan.

I hope your feeling much better now your on the right medication x

Hi, I have crohn's, diagnosed 6 years ago. I initially went to the doctors as I'd have episodes of cramping, increasing in pain throughout the night until I actually manage to have a poo or be sick. I've had these episodes since roughly being a teen but after I had my son at 29 they were increasing in frequency. I had a blood test which came back with high CRP. I had the blood test for ovarian cancer too as my first doctor thought it was more of woman issue than bowels., took a swab test for chlamydia too all clear, my doctor asked what I thought I had and I had researched it in the dead of night whilst crying in pain, so I was pretty certain it was crohn's, the stories I read from other sufferers were exactly like my own. It took ages to get my stool sample results back and they were positive for crohn's markers, from there on I had a colonoscopy, which showed scaring etc. Then I had an MRI which I didn't enjoy. Looking back over the years all the signs were there, I've had erythema nodosum about 5 times between the ages of 18 to 26. I'm pretty sure the doctor asked me if I had a stomach ache, but when your whole life is a stomach ache you think it's normal! 😂 It's a hard diagnosis to accept, I've found it very difficult and it's made me feel quite down. But it's manageable, I'm not medicated due to living abroad, I've given up smoking (not that I was a big smoker) I don't drink coffee, I don't eat popcorn, I try to steer clear of foods I can't digest. You get used to it. It sounds like you could have it, black stools, mucus, etc are all signs.

Of your symptoms I have a very noisy stomach, bloating, dark stools, runny stools, never feel empty, extreamly tired most of the time, very achey all over, if I wake up in the night my stomach hurts... Alot.. I've had this issue my whole life. Other ones I have are terrible mouth ulcers, thining out hair, very very dry sore skin around my eyes, to the point of seeing the gp, this was a few months before diagnosis. As a child I had awful aching legs, also saw the gp about. Dry eyes (trouble wearing contact lenses).

Oh please don’t tell me the MRI is worse than that colonoscopy, I really struggled.
The same as me when the consultant said have you noticed anything different I said no because Iv lived like this for years thinking I just had ibs because I got told that when I was 21 I’m now 37. I’m glad you figured out your triggers, that must help.

@BusterGonad

Of your symptoms I have a very noisy stomach, bloating, dark stools, runny stools, never feel empty, extreamly tired most of the time, very achey all over, if I wake up in the night my stomach hurts... Alot.. I've had this issue my whole life. Other ones I have are terrible mouth ulcers, thining out hair, very very dry sore skin around my eyes, to the point of seeing the gp, this was a few months before diagnosis. As a child I had awful aching legs, also saw the gp about. Dry eyes (trouble wearing contact lenses).

Thank you, weirdly enough I get really sore dry eyes and I never put the 2 together that’s interesting. I also suffer with ulcers, I get this really big 1 in the same place. I hope i get some answers either way soon

I'd rather have an MRI than a colonoscopy any day of the week, with the MRI I just feel a bit weird after, last time getting up from the bed I kind of felt wobbly, not sure why. Also when they put whatever it is in the IV I felt like I had wet myself, now the strange thing is the technician person said that doesn't happen with the MRI I had so it's all very strange. It's noisy in there and you can feel a bit panicked but ask for music, close your eyes and think nice thoughts. I've had 2. I've also only had 2 colonoscopies, the second one I had to have a dilation procedure as I had a stricture making me have flares.

A family members has Crohns, ulcerative colitis and coeliac disease (and a couple of other non bowel related autoimmune conditions) and could have written this post.

Getting stressed and run down and not sticking to a gluten free diet is usually the trigger for flare ups of the crohns/colitis.

Regarding ulcers I had the worse one of my life 2 years ago, on the side of my tongue, the size of a rubber on the end of a pencil. Omg, I couldn't talk, that side of my face puffed up and I had a slur. Everytime I ate I felt like I'd have a heart attack due to the pain. I NEVER want one of those again. I'm so fearful now that at any niggle I use some ointment that I bought and have about 8 sachets at any onetime. It was so bad that I found it hard to even sleep.
I'm not sure if you've had any food advice but for me the best foods are very simple options, low residue, pretty much like you ate leading up to your colonoscopy. White bread, white pasta, mash, soft veggies, chicken, Yogurt, bananas, biscuits etc what society deems 'health foods' are not good for crohn's, nuts, seeds, high fiber usually takes its toll on our insides, we need soft easy foods, like you'd feed a baby really.

I have chrons and over the years have had most of your symptoms. I was chronically constipated although still going to the bathroom about 20 times a day. I have been on many different types of medication over the years with varying levels of success. Am now on biologic injections and recently had surgery which I dreaded and have tried to avoid since diagnosis, the difference in my symptoms has been incredible and I wish I'd been operated on years ago! There are lots of good drugs and solutions out there so when they see the inflammation and know what they want to treat it with, just remember if one doesn't work another might

Ds has Crohns and has had most of your symptoms. Sore eyes and mouth ulcer's can all be due to Crohns too. It's a whole body condition at its worst. Ulcerative Colitis is the same disease, but just in one part of the colon.
I'm shocked they diagnosed you with IBS without ruling out IBD first though.
Low iron can be due to Crohns and the internal bleeding. And diet may help a bit but the only way to get it under control is medication as diet may just mask symptoms.
Go see the Gastroenterology team and find the medication which works for you. Modern options are great and can keep you healthy and well.

That's true Turkeyboots but there are certain foods which most people find problematic with IBD, usually popcorn and salad. They are just too fibrous.

DS can't have popcorn or salad due to the risk of blocking his stoma, but we've been reassured over and over that diet is far less important than medication. But if IBS is also in picture, the Fodmap diet may help with bloating.

My sister and I both have Crohns Disease. Her for 35 years, me for 27 years. Typical flares both have severe pain but she gets constipated and I have diarrhoea. She has B12 deficiency and I have pernicious anemia which is..both of us can eat and drink exactly what we want. Yes creamy things go right through us but we don't count that as not being able to eat them. The mri is a doddle compared to the colonoscopy it's just the dye they inject into you that makes you feel a but meh. Nothing will compare to the colonoscopy prep! There are so many different levels of how any illness will affect different people you just have to hope you are one of the luckier ones.

Thank you so much everyone for you advice and suggestions. Honestly I think I have had this for so long and just carried on because I have just put it all down to other things.
The chronic fatigue i just put down to the anaemia which I have had for about 4-5 yrs and they just say it’s down to my periods. I have had a really stressful period over the last 12 months so I just felt really run down.

As for IBS Turkey boots, when I was 21 I had a sigmoidoscopy for chronic diarrhea I always had to be close to the toilet and they said it was all fine and I had ibs. When I started with constipation they just gave me laxido and said my bowels are lazy due to ibs! It seems like ibs is the answer to everything. To be honest if it wasn’t for the gp doing a random FIT test I would still just be coping.

Same HGC2 sometimes I go so many times but it’s just little pebbles (sorry for tmi)

Reading up I have so many symptoms but being a mum of 2, 1 with ADHD and sensory issues, 2 jobs my health just got out last.
We just carry on don’t we.

Again thank you all, hopefully i get answers soon xx

I have ulcerative colitis. Your symptoms are pretty much the same as mine when I am having a flare up.

I hope you get your diagnosis soon and som treatment to help you feel better.

Good luck with it all, there are great treatments available now compared to even 10 years ago.
Pity they didn't do a full colonoscopy back then, they might have caught it earlier.

Thank you I really hope I get to the bottom of it soon.
I’ve had a bad day today. I woke up with the really angry stomach and it’s been doing it all day. Sorry for tmi This morning I passed lots of pebbles.
This afternoon I have started with severe cramps I had to run the toilet! It was a lot and all mushy, then Iv still been in pain and had to go again and it was just lots and lots of mucus nothing else. Weird I know but I have taken a picture for my dr. I feel there is deffo a flare up of some sort right now 😭 x

Colonoscopies are god awful. MRIs completely fine - total walk in the park by comparison. I've had small bowel Crohn's for 15 years and never in that time had a problem with diarrhoea. I go maybe once/twice a day and it's normal. Probs why it took me so long to get diagnosed. My symptoms were terrible cramps in my upper stomach, likely due to inflammation in my appendix region (terminal ileum). The terminal ileum is the most common place for Crohn's but your doctors would have been able to visualise this area during the colonoscopy so it's good if it was normal.

Colonoscopies are not God awful. I have had quite a number due to my IBD. I would not call them fun, but they are better than the alternatives like undiagnosed cancer or IBD.

The worst part is the prep because you have to drink some nasty tasting stuff and run to the bathroom. The actual procedure is quick and at most a bit uncomfortable. I always have the sedation.

No one should be afraid. It can feel embarrassing, but the healthcare staff are so used to it they don't bat an eye, and why would they? They have the same anatomy!

Colonoscopies are God awful for me too, so painful, I'm crawling off the bed, I suppose it depends on what state your bowels are in during the colonoscopy. In the US they put you out for them!

@LoveFall I'm pleased for you that you don't find them god awful but I do. That's my experience. In any case, the OP has already had a colonoscopy and was concerned because someone here preferred them to an MRI, and that is the complete opposite for me. Everyone is different.

I found it really uncomfortable even with maximum sedation. The prep was horrendous I was violently sick with the shakes and everything. The colonoscopy itself was really uncomfortable. The surgeon said I had a really twisty Bowel, I had to lay on my stomach and allsorts with the nurse pressing my stomach. The consultant himself said “well that was a difficult one”
I definitely do think everyone’s experience is different but they are needed and it’s amazing what they can actually do.
If it’s got to be done it’s got to be done.

I guess I'm trying to be positive. I am sorry you all suffered. I can't remember much due to the sedation. I'm in Canada and they give midazolam and fentanyl I think, via an IV.

My sister lives in the US and the give propofol. I think they have nurse anesthetists to manage the general anesthetic. We don't have them and would need an anesthesiologist which would be expensive etc.
Like I said, they are no fun but worth it.

My GI doc says I need another one. In confess I am dragging my heels. Covid you know.

I do think we should try not to frighten people away from having one. Bowel cancer you know!

@LoveFall yes I do agree with you, I would never have been diagnosed without it! Completely vital. I just wish they could make some prep taste better! I had picolax for a small bowel MRI and that was fine! Just able to drink it like lemonade, no issue with taste at all, I didn't need a separate drink to wash it down or anything. I think the whole experience could be vastly improved with better prep which also made me projectile vomit.