Calprotectin 452, Colonscopy and missing symptoms

[Chaucer89]

Hi folks,

I recently had a repeated Calprotectin test come back as 452 (previously 72). I have extreme weight loss (I’m currently a 34 year old female, 5’4” and 43kg) and have been experiencing months of daily waking to instant intense cramping and typically unpleasant bowel movement. I’ll continue to get cramping and the urge to go again for about an hour after. Some days I’ll have low level cramping all day and wind and I get a lot of bloating, wind and cramping after meals in the evenings. But gastro consult wasn’t much interested in doing a colonscopy to investigate further as I do not have any bleeding nor diarrhea multiple times a day. CT scan over a year ago was clear. I’ve not felt the need to run to the bathroom constantly, just typically in the morning. The morning cramping is worthy of a few choice swear words and doubling over or curling into ball and breathing, pain scale wise. I get a lot of heartburn, reflux and nausea too.

I also have an enlarged liver which is currently being investigated and some of the findings during a recent biopsy means that my hepatologist wants to do a colonscopy anyway given said findings, the high Calprotectin and my symptoms as this liver issue found is most often caused by inflammation disorders.

I’m just wondering if anyone can tell me as I’m very worried about doing the colonscopy due to the prep mostly (I don’t do well with no food in me given such low weight to start with!) Is a high Calprotectin very indicative of it being an IBD? That it’s worth going through the colonscopy? Is it normal with an IBD to having periods where you feel almost well enough to think it was all in your head? It just feels a bit like I’m not matching symptoms wise to everyone else I’ve been reading etc but maybe I’m too used to my symptoms and down playing it, I have many chronic conditions since I was a kid so I’m used to daily pain, nausea etc so I’m not sure what the ‘norm’ is. I know IBDs run in the family as my dad, aunt and uncle all on one side have some form of IBDs.

Any reassurance? TIA

[Boxroad]

I think it is worth going through the prep for your colonoscopy, they can see what is going on in the colon, I had calprotecin levels of 485, it took 4 weeks before I had colonoscopy and my levels had dropped so they could not find any IBD or bowl cancer so that gave me peace of mind, they found a polyp that they removed, do you struggle with certain types of food? I know that my family used to eats a diet of foods that were safe for me, once my daughter left home she started ibs symptoms because her diet changed and she started eating different foods.

[Chaucer89 in reply to Boxroad]

So theres a chance they won’t see the IBD if you aren’t in a flare at the time? Or presumably not had it long enough/severe enough to do damage that would be permanent. My test was early summer this year and it’ll likely be months before colonscopy given waiting times.

There is a lot of foods that don’t agree with me unfortunately, I eat very mildy, no spices at all. I’ve had heartburn from eating a banana before so gaviscon is my best friend after meals and I take 40mg Omeprazole daily. I can’t see any obvious triggers for my flares though in food though, it all disagrees with me!

Thanks for replying!

[Boxroad in reply to Chaucer89]

Do you take buscopan? I find they help a lot, I found out the hard way to much gaviscon can make the issue worse. I have had ibs for over 30 years, one of my biggest triggers is tap water, the chemicals added to kill off any bugs really affect me, I was on bottled spring water for about 10 years before having a water filter fitted to our drinking water in the house. It’s hard if I go out as I have to be so careful not to drink tap water, after so long avoiding it when I have a shower all I can smell is chlorine in the water, it’s like being in a swimming pool, if I run two glasses of water in our house the one from the filter is clear the unfiltered is cloudy, that tells its own story I think. There are so many chemical in food now as well, our bodies are not designed to handle them, I try to grow as much of our own food as possible but we have to bye meats, and most meats from a supermarket have water pumped into them, we make our own bread, if you read the label on a loaf of bread it is full of things that don’t need to be there, it only takes 5 ingredients to make bread flour water yeast oil and a pinch of salt. Think about what foods your eating in the evening that lays in your stomach while your sleeping, if your eating a lot of processed foods and foods with a lot of E numbers in them it could be the cause of your problems.

[angelwings52]

Best thing would be to have the colonoscopy as it would be worth it to rule out various issues. I know that the prep is unpleasant but it will help to diagnose you. I would suggest getting your gallbladder checked as well. And speaking from personal experience ask to have an ultrasound of your ovaries - I had horrific pain and IBS symptoms for years that were actually caused by a cystic mass on one ovary and chronically inflamed fallopian tubes (had to have complete hysterectomy).

[Chaucer89 in reply to angelwings52]

I do have gallbladder stones and polyps! Double whammy but as the stones were small the gastro wasn’t much interested..I’m not sure what exactly does interest him anymore considering. It seems to be another inherited delight my dad gave me as he and my grandfather have both had their gallbladders out.

I also have PCOS and had a large dermoid ovarian cyst removed a few years ago but only just had a recent scan again and all good on large cyst fronts so it’s just the usual PCOS bother. I also have Pelvic Congestion which also causes cramping and pain so who knows what causing what anymore down there! I’m a mixed bag of many annoying things.

I think I’m just going to have to bite the bullet, do the colonscopy and hope I don’t keep passing out..or worse. I didn’t even manage to get to my endoscopy without fainting first time. Not sure how 24hrs of absolutely nothing is going to fare!