Newbie here - Advice about Crohn’s

[Chockyuk]

Hello 👋 all

I’m in a bit of a pickle. To cut a very long story short, a year ago I began to have pains in my lower right hand side, my GP tried me on antibiotics which made no difference. I then discovered I was passing bloody mucus every time I went to the toilet, so I did a stool sample and bloods which both came back as normal. I lost about 2 stone as it eventually got so bad I couldn’t eat, and I ended up in A&E, had a clear CT scan, although they said they could see what looked like dark/old blood - they said given my history (I have Rheumatoid arthritis and my mum had Crohn’s) maybe it was IBD. As we were in the first lockdown I was sent away with Prednisone, which my GP continued to prescribe to alleviate my symptoms until I had further tests (and I was also referred to Gastroenterology). Six weeks later, I had a colonoscopy which didn’t show any Crohn’s lesions, and I’ve since seen the Consultant who told me to stop taking the steroids and wait and see what happened. Anyway, 4 weeks after stopping the steroids I’m back to passing bloody mucus, have lost even more weight as I am struggling to eat as I’m in constant pain - I’ve had a clear CalProtein test this week. I am wondering if it’s because I’m on Methotrexate for my RA it’s masking the inflammation markers for these tests?

The Consultant at Gastro won’t prescribe me anything as all my tests are negative so far, but I’m struggling to see how I can go on like this, at the moment I’m really only eating soup and mushy things like scrambled eggs?

I just wondered if anyone else has had clear tests but still have symptoms?

Thanks 🙏

[SuzyQ67]

Sorry to read you are struggling so much. The colonoscopy is visual & the drs look for any signs of inflammation. Crohns often has a cobblestone look in the intestines. My dr does not rely on labs much because a person can inflammation not related to crohns or UC. He does do the faecal calprotectin because it is gut specific. Methotrexate is sometimes used to treat crohns. I would ask for an upper endoscopy with biopsies.

[SORRELHIPPO]

My definitive diagnosis was only made after a colonoscopy, with numerous biopsies, (lower intestines not upper), so no endoscopy needed.

[Pipinha in reply to SORRELHIPPO]

You made blood tests?

[SORRELHIPPO in reply to Pipinha]

Had bloods taken, but only the look see and pieces of intestinal lining gave diagnosis, my bloods did show a raised ESR, ( an inflammatory marker) but they needed more than just that, to be sure.

[Pipinha in reply to SORRELHIPPO]

You have blood , what your syntoms?

[Chockyuk in reply to SORRELHIPPO]

Same as me, but at the time of the colonoscopy I had been taking Prednisone for a month, plus I take Methotrexate, so I’m wondering if any inflammation I would have had when I was very bad was not there then because of the two medications?The only test left for me now is a pillcam, as I am sure the problem is in the small bowel, as that’s where the most pain is.

My ESR is always sky high, but my CRP is normal, always has been, even when my RA was very active.

[Pipinha in reply to Chockyuk]

ERS?

[Dalebury]

Hi, so sorry to hear you are having so many problems. I live in UK and like previous replies have said when colonoscopy done inflammation can usually be seen, also here they take multiple biopsies from the whole colon. I have had UC for many years and the symptoms you describe are the same as I had when Colitis was first diagnosed,like the other replies have said ask for more investigations with biopsies. I know how bad you must be feeling but persevere and you will get a diagnosis in the end.Good luck 🤞

[Chockyuk in reply to Dalebury]

Thanks for your response. I did first think it might be UC as I have lots of bloody mucus, but my pain is lower right hand side, Consultant says UC is left hand, not sure if that’s right? Also my mum had Crohn’s, was diagnosed late in life after years of being in agony.😔

[Dalebury in reply to Chockyuk]

I don't know enough to disagree with your Doctor but I understood that uc can effect whole of the colon, but your family history of crohn's, which I know very little about should form part of your investigations.

[Stubbsie]

I suppose you could ask for a capsule endoscopy, my calprotectin came back at 798, I have had the test and am waiting on the results, apparently this test can see the small bowel, which a colonoscopy can not go up far enough to see and an endoscopy can’t go down far enough to see

[Chockyuk in reply to Stubbsie]

I have a telephone appointment with Consultant in May, I am going to ask for capsule cam then 👍I’d just like to get to the bottom (pardon my pun) of it all, it’s been a year now, and is ruining my quality of life.

[Stubbsie in reply to Chockyuk]

Hope you get it sorted. I was diagnosed with IBS 5 years ago, so these things take time to sort.

[Pipinha in reply to Chockyuk]

What your syntoms?

[nibb]

If you were on prednisolone or other anti-inflammatory medication at the time of the scope this would have affected how the bowels appeared on colonoscopy-potentially leading to a false negative result. I'm a Vet not a human Dr, but I am 100% sure from personal experience in animals. Have to take my canine/feline patients off pred for a few weeks at least prior to a scope. Also the whole length of the bowel can be affected so it's worth having a scope of the upper portion of the small intestine/stomach (gastroscopy), too. Even better would be to get a complete visual of the whole length of the gut with biopsies when you have been off all medications that may reduce inflammation in the gut. I would either seek a second opinion or explain your concerns to your current GP/gastroenterologist. I've been struggling with symptoms for years but the signs have been confused with my chronic pelvic pain (endometriosis, fibromyalgia, CFS etc). Just started investigation after 8+ months of chronic diarrhoea with blood. Crohns runs in my family, too but I also have a lot of symptoms of UC, too. I have pain in all quadrants but especially lower left and right pelvis and abdomen. I'm sick of living off mush, too! Hope everything turns out all right for you. And sorry about the long reply.

[Chockyuk in reply to nibb]

HelloThank you so much for your reply.

It makes me feel like I’m not going mad to hear this. Also I’m on Methotrexate for my Rheumatoid arthritis, so that combined with the steroids could have definitely changed the outcome of the tests.

Now I’m off steroids I’m sick again, bloody mucus, waking up 3-4 times in the night in pain, always the lower right hand side, can’t eat, losing weight daily.

I have a telephone appointment with Gastro next month, I’m going to have to try and explain my predicament yet again 😔

I’m sorry to hear you’ve been going through similar, it’s just miserable.

[heyimscared in reply to Chockyuk]

Hey, I'm going through the same exact thing right now and have no answers. Were you able to get answers?

[Chockyuk in reply to heyimscared]

Hi 👋 Yes and no.

I did the usual and limited my diet, just eating easily digestible food for weeks and it died down.

Had appointment with Gastro Consultant on the phone, emailed him my photos of bloody mucus.

He came back saying it wasn’t blood but poop stained mucus, even though it looked bloody to me 🤷‍♀️

Says it’s just IBS, although it’s always lower right hand side, which I didn’t think was IBS? But the upshot is he’s prescribed Amitriptyline, so I’m going to give that a go.

What are your symptoms?

[heyimscared in reply to Chockyuk]

oh wow, it's definitely frustrating not knowing. Mines been going on for almost a year. I've got alot of bloody mucus on days that I'm constipated or have hard/dry stool. On days that I have normal/soft stool there is just a small amount of mucus and a little blood on TP. I also have urgency issues especially first thing when I wake up, if I don't run to the bathroom I could have an accident. however there is sometimes fresh blood that just comes out liquid after I've straining for a few days. I go back and forth between soft, dry and diarreah stool. But my biggest concern is that I've noticed my stool has narrowe just like you were saying. I've read that it could be a stricture due to inflamed colon/scar tissue from ulcers. When I had a phone appointment with a GI specialist he said he suspected proctitis but because of Covid I was not able to schedule a colonoscopy, then I had my baby and just got busy. My symptoms have just been ongoing for a year and they have not changed or worsened. I'm suspecting ulcerative colitis but I don't know. I'm way too scared of a colonoscopy considering the risks and how horrible the prep is considering I have a newborn I'm taking care of and breastfeeding