I have had my second stool sample and fit test reviewed by the gp my fit test was clear and my inflammation markers are still high. She said that I now will have to see a GI specialist in the coming weeks. She seems to think its ulcerative colitis as my symptoms have not gone away. I'm not to sure its that though.. I have pain on the right side of lower abdomen and burning pain in abdomen and chest and upper and lower back ache. Very worried is an understatement. I had a colonoscopy around 6 months ago which was clear other than a benign polyp. I'm going out of my mind with worry its something to do with my stomach rather than my bowels. I had bloods done yesterday at the hospital, they came back clear. I'm so confused by my body right now.
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Macca1utd
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Hi winfong, Yeah I guess so in terms of my situation with my bowels, I'm just worried that it's something to do with my stomach now. My stress and anxiety definitely isn't helping. Inflammation has got my mind racing and worried.
Hi Macca1utd, the bowel and stomach are very much related and are all part of IBS. When the name IBS was first used, it did seem to be just the lower end of our bodies but now the whole thing from your mouth to your anus comes under the heading of IBS. I guess the same applies to IBD too! As you say your stress and anxiety probably isn't helping, so please try to put the whole thing out of your mind until you have some answers!
Are you doing anything for the anxiety? It plays a huge role in IBS.
If I may ask, what specific inflammation markers are you referring to (and what are your exact numbers)? I've got vasculitis as well as IBS, and know a lot about those things in general. Interestingly, they can be related to almost anything (cold, cancer & anything in between), especially when the numbers are low.
BTW, I'm taking it your user ID points to your being part of the Red Army. Correct? I just so happen to be wearing my jersey as I type this.
Let's hope England can bring it against France. It's been pretty easy up to this point.
I am indeed a red, I'm a season ticket holder. Good to hear you are wearing the Jersey 👹 as for England yeah we have been doing great so far, the big test will be against France this Saturday but I'm pretty confident we can beat them 🏴
My anxiety I have been on tablets for it but didn't continue they as they made me feel worse and I've also had a bit of counselling which was unsuccessful as the counselor I was speaking to didn't seem interested, so I've just been stuck with it for a food while.
My first stool sample had a reading of 185 calprotectin and I didn't find out the exact numbers of my 2nd stool sample I just got told it was high and then the doctor has referred me to see a GI specialist. The worry for me is obviously the inflammation being high and all the symptoms that go with it, the doctor I last spoke with seems to thing its ibd which is another scary thought but then I'm having upper GI symptoms aswel so my mind keeps taking me down different avenues and always worst case scenarios... its really wearing me down, it's all I'm thinking about from the minute I wake up to the minute I go to sleep.
It's a type of autoimmune disease, where your immune system attacks your body instead of the bad things it's supposed to. In the case of vasculitis, it attacks your blood vessels.
That does sound high. I'm guessing it's IBD. I'm also guessing there's a separate forum for that, which you could find by searching HealthUnlocked.
I don't know much about IBD, though I do have a nephew who has it. He has definitely had to make some changes, but is living with it pretty well these days.
I totally agree with Maureen - the medical field would love to separate all this stuff with some nice, clear divisions, but the human body just doesn't work that way. It seems more like the gut is just one big tube, with everything connected, from the mouth to that opening on the other end.
As for the anxiety bit, both for the meds and the therapist, it's a bit like dating. You may have to try several before you find ones that work.
By the way, have you had an endoscopy or colonoscopy?
Yes that's the worrying thing for me is that it's quite high and I'm still experiencing these symptoms. if I'm honest my stomach is more the concern now that my bowels are, I seems to have indigestion everyday and a burning chest with back pain, along side the bowel issues. I just needs some answers, its really effecting my day to day life. Yes I had a colonoscopy around 6 months ago which was all clear, ultrasound around 4 months ago to check gallbladder, liver, pancreas, spleen.. that was all clear, I had a full abdomen ct scan about 1 year ago for bowel issues, that was all clear. I've had numerous blood tests over last year and this year they've always been clear. I had a chest xray around 4 months ago which was also clear. They only thing that has ever come back positive is my calprotectin in my stool sample.
Yes I suppose most people think that it's all lower abdomen problems when in actual fact it is all connected. I wish I could just switch off and not think about it but my health anxiety gets the best of me unfortunately. I'm always thinking of the worse case scenario all the time and it really dosnt do me any favours whatsoever.
I was wondering how you're doing. Yes, I can understand why you're getting worried. It's all very stressful...waiting for test results...being told there's some inflammation etc. IBS certainly gives us all worries, and the "run around". I HATE it!!
One very positive thing is your good blood test result. If it were something dreadful, it would more than likely reflect in your bloodwork. Plus your FIT test was okay.
I don't know really as am not a doctor, but maybe some of your pain in the upper parts could be referred pain? Trapped wind can definitely refer pain all over the place, and literally double you up in pain at times.
I get pain in my LEGS with trapped wind, as well as heart palpitations, and pains in my chest. Even though my actual stomach is OK, and most of my symptoms are very low abdomen 99% of the time.
It is possible that might be happening with you?
I guess they found raised Calprotectin? That's a sign of some inflammation but can be quite common, and can also come and go. There are different ways to cope with inflammation in the gut which can be very effective -some "allopathic", some herbal. Plus diet changes to more bland foods for a while.
Thanks for keeping me in your thoughts, I hope you are well. Yes it is very stressful hanging around for results. Yes my bloods and fit test result are reassuring to some degree, I'm just very worried about my inflammation in my stool samples and the pain I'm experiencing, my pain seem to be localised in the lower right quadrant and just behind the belly button, if I prod around that area it is really sore to touch and this is accompanied by bloating, indigestion, heartburn, chest pain, lower back pain, upper back pain and loose stools. Also Yes it is the calprotectin that has shown up in my sample. It all just has me worried because the symptoms don't seem to letting up and it's causing my mind to spin.
Yes, it's natural to get concerned when there are so many symptoms, life's unpleasant, and we're not sure what's going on. All I can say is that if it is colitis, it is treatable, and raised calprotectin is fairly common. That can fluctuate. and sometimes people have a next test that isn't raised...etc. Is it high? It basically just means something is inflamed or sore inside.
If it were me, I would definitely start trying a bland diet, and bone broth, while waiting for any other input from your doctor. Bland meaning white rice, peeled boiled potatoes or baked without skin, white bread, eggs (if they are okay for you) chicken, white fish (maybe not oily fish right now) If you can tolerate vegetables you could try green beans and spinach, or pak choy but cook them. I steam mine until they are just a little softer than "al dente". Stewed apple with honey. Nothing raw, except perhaps green-ish bananas. Plain crackers or plain biscuits. Only use salt for seasoning. No pepper, stock cubes, spices, nothing else. You might be OK with butter or olive oil. You might want to take a multivitamin and mineral A-Z while you're on a restricted diet but check the ingredients in case there's anything that might not suit you in them.
Yes I get really concerned when something is off with my body, I start to think the worst all the time and it just consumes my life until I find out what's up with me. It quite bad really. I just find it hard to stay positive.
I have looked up that bone broth and I've decided I'm going to give it a try for sure, thank you for mentioning it.
Yes my calprotectin is quite high, it was at 185 the last time I asked. I just hope it's nothing too serious and I can get on with my life and sort this anxiety out.
I know. It gets to me too when anything goes wrong with my body! IBS or anything else.
It eclipses everything, and I too find it hard to stay positive. I think that's partly a natural reaction so don't be too hard on yourself about it. I think we go into "survival mode" when the body gets upset in any way. Some people tough it out better than others. They have different temperaments.
Yes it's really difficult isn't it, the body can be a scary thing and adding anxiety to the mix is just a plan for disaster. I cant remember the last time I actually felt normal, I would love to be able to get back to that calmness and worry free life.
Many many years ago my brother had symptoms a bit like this,had tests,saw gp etc to no avail...undiagnosed accute appendicitis in the end.Health services seem to be a bit of a shambles everywhere.Hope you get some answers soon,anxiety is so difficult to keep a lid on.
Thank you flyonawall, I just need to get some answers of whats going on and then I can work on fixing my anxiety. Hopefully whatever is going on inside my body is fixable and I can move on from it.
It is more than possible to have high inflammation markers (mine was 327) and still be diagnosed with IBS, which is what happened to me. In fact an IBS diagnosis is statistically more likely still than inflammatory bowel disease. There are other things that can cause inflammation in the body such as high protein and low fibre diets. A mixed heavily plant-based diet with oily fish and cereal fibres (the Mediterranean diet) is the best diet for reducing inflammation in the body.
It sounds like your GP is being very thorough and taking your symptoms seriously , few make the expense of stool samples which can delay our diagnosis.Ulcerative colitis can cause the symptoms you are talking about . People don't realise just how high up in the body the small intestine lays in the body. UC also creates a lot of Gastric reflux and stomach acid issues adding to the burning feeling. GERD can cause so much pain in the chest that some people do mistake it for heart pain.
Have you also had blood tests for Coeliac and Crohn's ?
These problems can also cause similar symptoms , as can gallbladder problems which would be ruled out by scans from the Specialist.
Try to drink the recommended amount of cool water throughout the day especially with food as it does reduce the burning symptoms even if you have a lot of inflammation. Eat five smaller portions of food rather than three big meals each day to reduce the effect of gastric reflux. Cut out alcohol , smoking if you do smoke and overly spicy or sugary foods for now to bring relief until you know what you are dealing with. Sleep on your back or to your left side with your head and shoulders raised on pillows and a pillow for support behind your back if on your side. Sleeping on the right can increase the amount of acid leaves the stomach and gets up your oesophagus at night increasing the chest burning.
It is a positive thing that they are sending you to the GI specialist next. They will make a decision whether to send you for an ultrasound or CT scan in the whole area. They may choose to give you another colonoscopy to be sure they can rule out other benign polyps. You may get a biopsy via a camera down the throat to give the best possible chance of a diagnosis of UC or other digestive issues.
They will be able to rule out so many of your worries with these tests.
If you do have UC or diverticulitis it can be treated well with medication , diet and a change in exercise and how you pace your activity bringing back the quality of life you enjoy.
IBS of any type can be a common disorder to experience with a variety of gastro problems so try to remain relaxed and positive at this time . You are going to get a diagnosis very soon which will hopefully tell you the root cause of the IBS.
It has taken me a good few doctors visits to actually push for more testing but yes its finally looking like I'm getting somewhere.
Thank you very much for you're informative and reassuring comments. I will take note of all of them. Have you ever suffered with any similar symptoms if you don't mind me asking?
Yes I have had the test for coeliac and crohns, they came back negative.
I'm just hoping that I can get these tests done and hopefully nothing bad comes from it and I can then work on getting my life back on track and move on from it all.
What test have you had and what symptoms do you have if you don't mind me asking? I'm at my wits end with it to be honest. I'm sick of feeling like this all day everyday. It's been non stop for over 2 months now. How long have you had your symptoms? Sorry to hear your suffering.
Awe thanks.Had symptoms for over a year.I have severe abdo pain,trapped wind,gurgling down left hand side of bowel.pain in stomach all day,pain under both sides of ribs.burping.Undigested food in stool.some days diarrohea and then normalise.
Had coloniscopy,upperendoscopy,mri small bowel ct scan of abdo pelvis.stool samples blood tests.vitamins depleting due to long term ppi use.lost 9 stones in weight.Still no diagnosis .just been referred for a 2nd upper endoscopy under the 2 week wait.Gastro want biopsies this time.tested negative 4 times for coeliac.and gastric parietal cell.the mind boggles
Sounds very nasty George, your symptoms do sound very similar to mine. Do you have you're symptoms all day everyday? My symptoms are relentless. I've pretty much had all the tests you have had apart from the endoscopy. I'm booked in to see a gastro myself but havnt heard anything back as of yet. Hopefully we can get some answers soon.
Yes it's been relentless.its taken me to A&E a few times Git blood tests then sent home They refused to do a scan as I had 1 in April.Gastro useless.On a 2 week cancer pathway now as I've lost 9 stone in a year all tests show organs are OK organically but bloods are decreasing especially mch and ferritin I'm worried tbh
Just to hopefully reassure you my gastro guy said my calprotectin at 244 isn't worrying.I take a PPI which can elevate calprotectin.He also said they only worry when calprotectin is in the 1000's.My biopsies were clear of IBD even Microscopic.My letters state they may never find the cause.Worrying as it is guess their the experts .
I found out my most recent stool test calprotectin level has dropped from 185 to 131 but I'm still suffering with cramps, gurgling, chest and back pain and indigestion. Thanks for the reassurance mate uts really appreciated. I myself take omeprazole and have done for many years so maybe that has something to do with it? But then I'm absolutely clueless as to why I'm still suffering with all these symptoms 3 months non stop. I go for my endoscopy this thrusday coming so hopefully it's nothing to serious and I can be fixed.
Thats bad that they say they may never find the cause, I really hope they do and they get you on the mend mate.
Thanks for you're reply and sending my best wishes to you.
Hope you get sorted.im after another upper endoscopy as they didn't do biopsies last time but whether they will do it or not is another matter.Just gotta keep pushing.Im seeing my GP tomorrow to try and get my iron sorted.Ive just pushed for ova cyst and parasite,cdiff , hpylori and FIT stool samples.Just had cdiff back negative.You can have coeliac disease even if you test negative via blood test.Im now trying taking my PPI on alternative days and gaviscon advance to see if it helps.Please if you take a ppi get your B12 checked.Let me know how you get on.Good luck
Sounds like you are having a terrible and worrying time mate, thats a lot of weight to lose isn't it. I suppose the reassuring thing is all you're scans and tests have come back clear. I hope they get to the bottom of whats going on for you, I really do mate.
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