Pretty sure I have Crohns or worse…please help!

[RaulP1]

Sorry in advance for the long message - this will be a long one.

This is my second time posting since 2019. In 2019, I was suffering from stomach issues. My Calprotecin levels were >67mg and I had a colonoscopy on 11th Nov 2019, where they found very mild patchy erythema at the end of my colon, going into my small bowel. A biopsy was taken and I can the results back in 2020, saying it was just inflammation and no signs of crohns. Also had an MRI which was also clear.

After all this, I was diagnosed with severe IBS.

Since then my stomach settled and I have been fine, apart from very mild pain in the stomach area where the redness was found in the bowel but nothing too concerning.

Fast forward to April 2024 I suddenly started experiencing really bad stomach pain, nausea, vomiting and the feeling of my bowel being inflamed. This has happened over 4 times since then and I can only describe it as flare ups. I had to do a stool test on Monday and today had a call from the GP to say the Calprotecin level is >504mg and that I need to go in to meet with my doctor tomorrow. I am now terrified that I have Crohns or the dreaded C word.

Has anyone had similar levels and symptoms and it not being IBD? And if it is IBD…will life be forever changed or will it be normal? I’m sorry for all the questions but I’m so stressed out. I know that won’t help with the stomach issues and will likely make it worse but I’m worried about having a life long condition.

Thank you all in advance.

[sandylo]

My last calprotectin level was 2100 its been really high for 18 months I have had 2 colonoscopies and come back as IBD proctitis I've had my flare up since the colonoscopies been on suppositories mesazelene and steroids the last 5 weeks have been much better as I hadn't had a bowel movement since the colonoscopies just blood and mucus the gastro depth at my hospital have been keeping in touch the calprotecrin levels are caused by inflammation

[RaulP1 in reply to sandylo]

I’m sorry to hear that Sandylo, sounds like you’ve had a really rough time. I’ve luckily not seen any blood (yet) apart from when I wipe but not in the stool itself.

I’m glad to hear you’re feeling better over the last 5 weeks and I hope that continues for you.

I kind of just wish that they picked whatever this is up properly in 2019 when I had all those tests done initially. I now feel like it’s just got worse and had they taken it seriously then, it wouldn’t have

[4someone]

Dear Raul,

It’s hard not to worry, but if you do have Crohn’s, yes you will have to make adjustments to your life but it’s not the end of the world. I developed Crohn’s when I was 12, I’ve had several operations been on intravenous and nasal gastric feeds when I was really unwell but I reached a good point of health. I’ve sailed on Tall Ships, walked hills and glens, married, had children, volunteered with Scouts and am now in my 60’s. All of which my parents were told was unachievable.

So chin up, wait and see what your doctor has to say then start exploring options to improve your life. This forum has a wealth of experience to help you make informed decisions, Good Luck tomorrow.

[RaulP1 in reply to 4someone]

Thank you so much for your reply. I’m really glad to hear that you’ve reached a good point of health and everything you have achieved is so motivating.

It may be my fault because I’ve been reading more of the horror stories associated with IBD, rather than other ways it could be managed. I’m nervous of the thought of potentially needing surgery and it affecting my ability to have kids.

I would like to be a mum more than anything and keep reading that crohns could affect fertility.

Also the side effects of the medication. Like putting on weight!

I am trying not to panic or stress out. However with my symptoms I’m pretty sure it is crohns or colitis. More crohns as it seems to be moving.

My appointment yesterday the doctor did say that the calprotecin levels indicates IBD. I’ve now been referred for a colonoscopy and gastroenterology department at hospital.

I’m kind of resigned to the fact that I likely will have some form of IBD.

[jackdup]

Have you lost any weight? When I was originally diagnosed with Crohn’s my only real symptom was weight loss, but then after the fact realized some of the things I had experienced were probably from Crohn’s and not simply indigestion from spicy foods. I was also lactose intolerant which i didn’t know so again how much of what i experienced was from the lactose intolerance and how much from Crohn’s and how much was normal indigestion I’m not sure. I was diagnosed I believe in 2000 and it really hasn’t been all that much of a change in my life with the exception of a couple of major flareups. I know that many people have much more severe Crohn’s and do have a major change in their lifestyle but not everyone falls into the group.

I did have a small bowel resection about a year and a half ago. The surgeon said i didn’t really have to have it but I am over 70 and have some other health conditions and was concerned that down the road if I did come to a point where I would have to have the resection my other health conditions may have prevented the surgery so thought it best I do it now, and am very happy I did.

The last few years before the surgery I was restricted from eating peanuts and seeds which could cause an obstruction but now am able to eat everything again.

One thing that has really helped me is yogurt with probiotics. It is not a cure by any means but several years ago when I had diarrhea or loose stools it was the one thing that helped return to normal bowel movements. Some people were skeptical but if I stopped using it for a period the diarrhea would return. It usually took a couple of weeks for it to make a difference but since then have been eating it daily. Again it isn’t a cure and may or may not work for others but there really is no downside to trying it for a couple if weeks to see if it makes a difference.

Stress can be a big trigger for a Crohn’s flareup so worrying is only going to make your symptoms worse if you do in fact have Crohn’s. I know when you have an undiagnosed illness it is hard not to worry but hope you can keep things in perspective.

Good luck and let us know how you make out.

[RaulP1 in reply to jackdup]

Hi Jackdup,

I haven’t lost any weight no and when I’m not having a flare up I feel pretty normal. However when I do have a flare up (only way I can describe what I’m feeling) I feel sick and pain is awful!

Fatigue is pretty awful too and yes my stress levels really do make it worse. I was told by my GP yesterday to not take on unnecessary stress, especially while I wait for a diagnosis.

I’m really glad to hear that you are feeling better too and in a good space with your health.

So not everyone with IBD will be severe or need surgery? I just keep reading that it’s a progressive disease and will continue to get worse. The thought of that is terrifying.

I’ve been referred to have a colonoscopy. I’m already pretty sure of the outcome though.

Thank you for taking out the time to respond to me. I’m still nervous and stressed but will try my best to control it.

[Jacko37]

Sorry I can't help but I have a similar experience. In 2020 right at the start of Covid I had horrendous diarrhoea, calpotrectin over 600. Had a colonoscopy which was fine, biopsies showed not specific inflamation, no Crohn's disease or colitis. Calpotrectin repeated at the end of 2020 and was normal. Everything was pretty normal until 3 months ago and now the diarrhoea is back! Try not too worry, it could be anything

[RaulP1 in reply to Jacko37]

Thank you Jacko, i appreciate your reply. I think my concern is that I have pain and I can fully tell where the inflammation is but you’re right. It could be anything so I need to wait for the tests (which I am also dreading!)