Hi.
I’m new so please bare with me. For 2 years I have had the most uncomfortable pain in my abdominal. It’s alwaysbtge right hand side near my belly button and sometimes goes to the lower right. It’s aweful. It hurts all the time and when I press. I have had all the tests you can imagine. Endoscopy. MRI. CT. and colonoscopy. All showing nothing.
I’ve been refereed to general surgery who seems to question a grumbling/chronic appendix.
My new GP has been fantastic and understanding. So she did a faecal calprotectin test. The first one was 263 and the second 276. Which she believes could indicate crohns. But the general surgeon says it has to be over 600 combined. Nothing shows up on the colonoscopy. But she says it could well be in the small intestines. Has anybody else had a similar situation. I’m at my end now. What’s ever it is it’s ruin my life. I lay in bed all the time as this is one of the ways to reduce pain or I starve myself as this relives the pain. My bowel movement are all or nothing. Thanks.
HI Chris,
Thanks for you interest, what’s the best way to send the link??
Thanks
Mark
Hi Chris, Sorry to hear what you are going through. I was diagnosed with crohns 53 yrs ago at that stage there were none of these advanced test available yet it did not take them long to diagnose what I had got. But reading a lot of the cases on these forums it seems to be taking ages to sort it out. There is a new test now where you swallow a pill with a camera in it that photographs all your digestive system as it passes through the gut. It might be useful to talk to your GP or consultant abut this option
Have you joined our Facebook Group?? X
Hi Chris,
I'm sorry to hear that things are difficult. Some of what you mention sounds familiar to me.
I was diagnosed in May 2016 after around 8 months of investigations. My calprotectin was around 200 when first tested which led to referral for endoscopy and MRI - both of which showed nothing abnormal.
Meanwhile my symptoms were just getting worse and like you I was having to go back to bed every day. The datigue was incredible and the pain had me in tears most days.
My c reactive protein and Erythrocyte sedimentation rate levels ( both blood market of inflammation) were never raised. I was so ill (my list of symptoms was ridiculous and it was very hard to cope) but nothing (apart from my calprotectin) was abnormal in terms of test results.
I then had a capsule endoscopy (pill cam) which is a really good way of looking at the small intestine.
It found that I had extensive ulceration throughout my small intestine and some stricturing. I also had cobblestone mucosa indicating that I'd had Crohns for a long time.
Can you ask for the capsule endoscopy to check your small intestine?
I too had pain in the area that you describe ( near the appendix) - the ileoceacal valve is close to the appendix and is one of the most common areas for Crohns to occur.
I hope that you can get some answers. Things can most definitely get better. I have just been put into 12 mo they checks by my specialist as I am now so well.
My mum and aunt also gave Crohns and although they were very ill in the past it doesn't affect them now.
I know it's hard but don't lose hope - keep pushing for investigations. The pill cam is the best way to look at the small intestine xx
Sorry, I typed that response quickly and meant to say * fatigue, * blood market and * 12 monthly
Just to add, my calprotectin was only taken at the early stage of my illness so it likely did increase.
My GI consultant did tell me that when Crohns is higher up in the digestive tract the calprotectin level can be not as raised.
Hi Chris,
Sorry to hear you are suffering with these symptoms. There is a lot of support here and there will probably be others who can offer more info than me as I am also new (ish) but have had abdominal problems for many years. Something that came to my mind reading yr post is have you had many blood tests or if so repeated bloods? Your gp sounds great which is a godsend truely when you have anything ongoing so I would try to stick with her whenever possible. For me I had a mixture of symptoms and results which my consultant said was enough to diagnose inflammatory bowel disease. I had a history of diarrhoea which gets pretty uncontrollable at times, severe abdominal pain, bloating fatigue etc but when my bloods showed I was low in b12 folates and had iron deficiency anaemia despite no periods they took it more seriously I had had previous colonoscopies one removed a polyp one queried colitis and another showed no inflammation but that was after a year on steroids.
My small bowel mri showed an enlarged terminal ileum which together with a slightly elevated calprotectin result of 88 (I think) and the history of recurring anaemia, pain and the fact that I improved on steroids and a powder called questran my diagnosis is crohn's in the terminal ileum and possibly collagenous colitis which is microscopic so needs biopsies to confirm. I also have functional gut disorder /ibs and a history of severe endometriosis which was particularly bad on my bowel and rectum and I needed a 4hr surgery to remove the endo. I would ask if there are any biopsies that show or indicate any possible diagnosis as unfortunately I had biopsies in 2008 that were thought to be the microscopic colitis but I was never told this information.
I now take regular medication and have steroids incase of a bad flareup although only take them when i'm at my worst as I find they elevate my blood pressure for which I take two tablets for each day so have to be careful.
Two of the best things I've done are to take a good probiotic called quest mega 8 biotix acidophilus with other strains they are slow release capsule and help me a lot with the ibs and generally keeping my gut more healthy. The other thing is to get to know what your trigger foods are in your diet. My cons told me wheat and dairy are two of the biggest food groups which can aggravate these disorders. I have looked at what I eat but like you I often don't eat to manage the pain or skip meals especially when I was working I couldn't eat anything much the night before and certainly nothing on the morning of going to work I could just about leave the bathroom to get out of the house somedays. I am getting less flareups at the moment and have a specialist nurse that I can contact if I need to inbetween seeing the consultant. I have b12 injections and iron infusions as one of my symptoms was that I became unable to tolerate any oral iron which is also a known symptom in some people with ibd. I also get flareups of severe pain and diarrhoea if I take certain vitamins and oral antibiotics are a no no now for me.
That said there is a lot more support and awareness now and whatever the diagnosis there is a lot of help here. Hope ive helped a bit.
Take care
R
What’s the group called. Thanks.
Thanks. He has mention the cam pill. So it’s worth asking. As I am aware that can see everything the colonoscopy and endoscopy are unable to.
Hi Sarah.
Thanks for the reply. This does sound very similar to what I am going through. I also thought the exact same if it is higher in my digestive tract (lower intestine) this could be why my F.C levels are just below 300. And they are raised so there just be a reason for this.
I am on the verge of giving up. This is why I have joined this group today. Sometimes I think is it in my head. I just seem to be in so much pain that I am failing as a Dad and husband and everything. I can’t play with my daughter. Go out. Do DIY around the house. Have a drink with friends as alcohol makes it worse it seems. Go to the gym. My life is taken over from this horrific pain. I just want my life back or some at least.
A few months ago I broke my finger and was prescribed pain killers (Co- codamol) And found that these eased the pain a little. But they are only masking it for a few hours and do make me constipated.
I’ve also noticed when I press on the area to the right of my umbilical that it sometimes pushes gas out.
I am going to persist for the pill cam. After the comments and hopefully get a diagnosis.
Was there anything what easer the pain apart from laying down. ?
Thank you
Hi Chris,
I really do sympathise - I felt the same. Please know that things definitely can get better.
The difference in my health now compared to at the time of diagnosis is incredible.
I can tell you what I have done but I'm not saying that this is the solution for everyone - we are all different.
At the time of my diagnosis I was advised to take an immunosuppressant called Mercaptopurine. I refused this as I had attended a presentation by a GI consultant who said that it was now widely accepted that Crohns has a microbial trigger ( essentially, there is an imbalance of good and bad bacteria in the gut). ... Yes, you can inherit a genetic predisposition, but you need an environmental trigger.
I felt that I wanted to try to address the gut dysbiosis and see if that helped so I drastically changed my diet. I had a huge improvement within 2 weeks.
I also take low dose naltrexone and high dose vitamin C but for me the diet change has been absolutely crucial.
Before my diagnosis I bought a tens machine from the pharmacy ( they aren't expensive) - it helped with pain relief - obviously it won't help to reduce disease activity but at those times when I just couldn't cope with the abdominal and back pain it did give some relief.
I eat the SCD way. I also make my own SCD yoghurt which is higher in beneficial bacteria than any tablet form available. It's very easy to make - I ferment it for 24 hours so that all of the lactose is broken down.
I've sent you a private message - I hope that's ok.
Hi, sounds like chrons to me, mycalprotectin test was reading at 333, however a colonoscopy and MRI confirmed it was chrons but my GI said it was mild. I strongly believe if you get tested whilst things are calm, they will not show up, I believe it needs to be done during a flare up which can be hard to do. It's very frustrating, keep pushing for answers don't give up. Good luck 🤞
Sarah, could you please also get in contact with me? I'm in the same situation as Chris. Ultrasound and blood tests are normal, but haven't done Colonoscopy or pill cam yet, i have elevated calprotectin. I have constipation only, fatty stools, loss weight and some ocasional nausea. Pain is the wirst. Always in LUQ and worsens upon body movement, do I can do little other than simple tasks.
Hi, yes, of course xxx I'll message you xx