Want to share my experience....from many years of IBS and now IBD.

[Frasina]

I had what I thought was a bit of a flare for IBS in August time; my usual symptoms were D (a few times a day), abdominal pain, wind pain, not always feeling I had emptied my bowels properly and sometimes parts of my colon felt 'sore' as in slightly inflamed... I did not have any blood with my BM but sometimes did have a bit of mucous. I did phone the GP who said I should do a FIT stool test; this came back negative (I now know that a FIT only tests for blood in stools) so the GP refused to write to gastroenterology.

The first week of September I got a UTI and was given antibiotics to treat the water infection. The exact same time my gut problem seemed to get worse - I was feeling unwell and my BM worsened, 6 plus times a day. I was still eating though and did not feel sick at all. Over 3 weeks I noticed that I was losing weight -10 pounds in 3 weeks! Now, normally it would take me 4 months to lose the same amount ( I know this as being at least 2 stone overweight anyway I dieted from Jan to June 2021 and lost exactly 1 stone). So even though my stools were not showing I had blood in them I started to worry.

My GP was not too concerned saying it was the IBS so I took matters in my own hands and paid to see a gastroenterologist. The minute I explained my weight loss ( and all the symptoms) he said I would need a colonoscopy which because it was rapid weight loss could be done on the NHS. I fact, the colonoscopy was done one week after seeing the consultant (mid October). The report written right away said possible colitis...biopsies were taken to confirm diagnosis though.... people can have colitis (UC, or other forms) without bleeding; my images showed ulcers but maybe they just have not bled.

My official NHS 'follow up' appointment is not until the end of April! So, I had no choice but to continue seeing the gastroenterologist privately as I needed to start meds of some sort. According to what I now know about any form of IBD it is trial and error as to which meds work; what works for some will not work for others. I still have some abdominal pain, wind and some days BM fine but not others. I do believe I have both IBS as well as IBD but it is all too easy for medical professionals to use IBS as an umbrella term for so many gut disorders. And, ironically, my bladder issues never righted itself either so I am off to see urology in Feb...

My advice to anyone out there is that you all know your own body. Don't get fobbed off if you really feel you do have an issue.

[Sunita77]

Hi, I'm so glad you've got a diagnosis but it's unfortunate that you had to go private to get your answers. I'm currently having issues and my calprotectin levels were 222 in September and I did a repeat one in December which was 430. My GP referred me to Gastroenterology back in September but I was told in December that I would have to wait for 1 year to receive an appointment. My GP has currently written to them again to see if they can bring an appointment forward.

How long have you had symptoms of IBS and IBD? I was diagnosed with IBS in 2008 with the usual symptoms bloating, diarrhoea, constipation, feeling full etc but my symptoms have increased severely since then due to abdominal surgeries one of which was a bowel obstruction and resulted in a small bowel resection. I had my gallbladder out and I now have severe diarrhea (which could be bile acid diarrhoea I'm told but have to wait for a year to be seen and for it to be investigated). I'm not too sure whether this is related to my elevated calprotectin levels. I have had calprotectin tests done before and they have never been that high before. My GP has said that it could be IBD but I have had a colonoscopy about two years ago which showed apthoous ulcers in my terminal ileum and had biopsies taken which came back normal. I'm now wondering whether nothing showed up then because I didn't have any active inflammation as I do now

Thanks for sharing your experience.

[Frasina in reply to Sunita77]

I have had IBS 20 plus years but colitis diagnosed few months ago but would imagine the colitis was brewing for a long time (certainly a good few years). I have never had my calprotectin levels done, so have no idea what mine are! I did mention this to my consultant that I saw, but he dismissed it saying they will get done further down the line with bloods etc.. I also mentioned this to my GP - he said they are needed more before diagnosis as high markers indicate inflammation! I would love to know what mine are as I am inflamed!

I have heard about bile acid D - read some posts I think about this on the Chron's and Colitis FB group ( I do not do social media but a family member lets me read all the posts); there is a ton of information which you may find helpful. People like you post even without official diagnosis -someone may have exactly the same issues. I agree with your GP as you could have some sort of IBD and inflammation does not always even show on colonoscopies as there is something called microscopic colitis which can only be confirmed by biopsies done when having a colonoscopy...ideally you would have another colonoscopy but in order to do that you need to be seen by the hospital first!

It is such a shame we have long waiting lists yet we are in pain and cannot live our lives properly. I would have waited a year too had I even been referred (by my GP). I do not regret having to pay (I am not on any health schemes but needs must) and seeing as my NHS follow up from the colonoscopy is not till end April I will have to carry on paying for the foreseeable future. My meds for colitis are not working well - I do know it is trial and error so when back with consultant in a few weeks I will have to see what the next move is. I do have small gallstones but nothing has ever mentioned about having anything done for that. As said, try the forum I suggested - you will get replies off people who may have exactly the same issues as yourself and they would make suggestions. This site also has a Crohn's and colitis forum so maybe use both forums. I really hope that you get some answers and you can get your appointment brought forward...

You could also join the Chron's and Colitis UK organisation; (cost £19 for a year) as they send you a key and card which opens accessible toilets if out and about so you do not have to 'wait' in a queue, plus their website has a lot of good info...

Sorry that I cannot be of more help; please let us know in updates how you are getting on x

[Sunita77 in reply to Frasina]

Hey, thanks for the reply back. You have been very helpful. I'm having my blood tests done again so hopefully something will show up on there. My GP mentioned B.A.D but may need testing for it. I will let you know what happens x

[Criland79]

Hi! I completely agree with you and it also takes a lot of time to find out also because each one of us is different. I come from Italy and here if you want to get proper cure you have to go privately. I also suggest not to stop on only one s doctor opinion, but consult different ones to have an intere vision and a proper diagnosis. From what I got to know so far, at the basis of any IBS there is disbiosis but need to find out which probiotics suit the most in each case and this requests also time and money. By the way, good luck to everyone!!

[Frasina in reply to Criland79]

Yes, finding out if there is a problem that requires further investigation is possibly the biggest issue here in the UK. We have a wonderful NHS but sadly due to current circumstances they clearly are being overwhelmed and so many people are now finding that even if they have a GP who agrees to refer them to gastroenterology the waiting time for an initial clinic appointment can be around 1 year!!! I had no idea this was the case, but some people who posted elsewhere and have possible IBD (they are currently being told it is a flare up of their IBS) have mentioned these sort of waiting times...Every country will do things differently and whilst it seems logical perhaps to see more than one consultant it also means paying double (and private appointments do not come cheap) and also if two consultants 'disagree' then that would cause more issues. For me, I have to assume they got it right because I did have a colonoscopy last October and they took biopsies and the images show inflammation etc.

Without doubt what works for one will not always work for another; this is true for all meds as well as other things such as certain foods to avoid or supplements etc.. All we can do is try things and hope that we find what works to at least give us some relief!