Advice Please!!

[DavidS]

I'm a new member to the group and just wanted to share my experiences with you for some thoughts/help as I have hit a bit of a road block after nearly 3 years of GP/hospital visits and no diagnosis.

In relation to symptoms, I was diagnosed with IBS about 6 years ago due to the usual symptoms on/off diarrhea and stomach/bowel pain. Then about two and a half years ago I came down with what I thought was just a very bad flu, but ever since then, I have been having a recurring flare up of flu symptoms (fever, general body aches and bad stomach/bowel pain) every 8-10 weeks. In between times, I have the same bowel symptoms as I have always had - 7-8 BM per day, anywhere from normal to loose/mucous and constant tiredness.

The first few flare ups, I put down to bad luck and only went to see my GP after about 6 months who just put it down to flu season and pretty much told to get on with it.

Then had a particulary bad flare up and seen a different doc who ran some tests and CRP was >200 and ESR was high also. I was then told to come back and have bloods done any time I had a flare and this went on for another 6 months or so before doc thought there could be a link between my stomach symptoms and these flare ups as they got a hell of a lot worse when the flare up was ongoing (btw CRP levels were always >150 during flare up). At this stage I had my Faecal Calprotectin checked and this came back at 200, at a time when I was feeling ok.

GP only then referred me to GI specialist and as I am in the UK, it took about 8 months for that appointment to come round. Consultant ordered colonoscopy which was clear except for some bile in the large bowel which led to an abdominal ultrasound which was also clear. So the consultant came back with a diagnosis of IBS again and just completely disregarded the CRP and calprotectin levels. This has my own GP is pulling his hair out too as he thinks inflammation is going in in digestive system somewhere but wants me to have upper GI series done to but now has to start the referral process from the start again!

So all in all I am no further on than when this started other than the flare ups are getting worse (although less frequent) and seem to be having sever outbreaks of mouth ulcers with each one now too. I'm back in the situation where I just go back and get bloods chcked when flare up comes along so GP has something to work with to move forward with the referral. Just wanted some advice on any standard meds I can take to either prevent a flare up or mitigate symptoms during a flare as until I get a diagnosis, Doc won’t prescribe any Crohns meds.
Anyway, sorry for the “War and Peace” length post and thanks in advance for any advice!

 

[SarahBear]

Welcome to the forum, David!

The upper GI series is a good place to start, but I suggest you also request that a capsule endoscopy and/or MRI be done as well, to see your small intestine. The GI should definitely not have dismissed you after a clear colonoscopy. Is there any chance you could get a referral to a different GI this time?

Have you ever noticed any blood in your bowel movements? Keep a careful eye out for it; blood completely rules out IBS (although the inflammation markers really should have as well). Are you ever woken up during the night by stomach pain and/or urgency? This would also rule out IBS as the cause of your symptoms. If you do have any of these, make sure you stress that to the GI when your referral goes through.

It's definitely frustrating to be in this situation, but please don't lose hope. It's very likely that something is going on in your small intestine or stomach; a clear colonoscopy definitely doesn't mean everything's all good (as you well know).

I don't know of anything you can take in the meantime to try to prevent symptoms. Until you're able to track down a diagnosis, treating the symptoms is probably the best you can do. Have you tried anti-diarrhea medications? Ginger and peppermint can help ease stomach pain and nausea, so I always keep ginger ale and peppermint tea on hand. I also find that a heating pad helps relieve pain a bit, and sometimes if I'm having mild stomach cramps, walking helps to ease them off. You might want to start a food journal to keep track of everything you eat and your symptoms - it might help you make connections between the two and better determine any foods you need to avoid. Be sure to avoid NSAIDS such as Ibuprofen as they can aggravate your stomach and make your symptoms worse. Tylenol, however, is safe to take.

I hope things get better for you soon!

 

[ronroush7]

Welcome, David. No need to be sorry. I hope you find some answers soon.

2

 

[Trysha]

What an impossible situation you are in.
The best thing to do when flaring is to go to the emergency department, of a
teaching hospital if possible.
The best one of all is St Mark's Hospital in London, which is
a designated hospital for GI diseases.
You definitely need a proper diagnosis and treatment soon.
Feel better soon
Hugs and best wishes
Trysha

 

[Jinglebob28]

Same here, apart from I haven't gone through any of the diagnosis process yet. My GP did some blood tests but that's it. Have a colonoscopy in the next couple of weeks. It's not very nice knowing there is something not right but not having a diagnosis. I feel for you. Hope they find out what's going on!


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[grt73]

Hi David,
Reading your post reminded me of me! I spent 20 years or so having flare ups, excruciating abdo pains and later on the fevers set in. They were few and far between to start and only lasted 24 hours or so, but got more and more frequent as time went by. My esr/crp showed 177 and the docs told me it was ibs too. I had colonoscopy 3 yrs ago which was all clear. A stomach camera also came back blank. Today a year ago I was admitted to hospital for surgery following a major bout of pain/ fever, this had been going on for a few weeks progressively getting worse. An X-ray, yep just a good old X-ray showed a mass of tissue in my small intestine. A ct scan concluded I had a complete blockage! My advice is to push for an X-ray or ct scan ASAP. Like you I lived through sheer hell for many years, I honestly feel that if they had found the crohns back then it was probably treatable with medication.
The terminal ileum was my location for the crohns and that little bugger has now gone. Since the op the pains I suffered have all but disappeared. Am still recovering from the op but that's another story. Don't panic my friend, push the docs to get the treatment you deserve!! Keep posting as I would love to hear how you get on!

 

[DavidS]

Hi guys. Thanks for the messages of support. Curent situation with my GP is to wait for a flare-up, have my bloods re-checked and then move forward with another referral. So I imagine I'm looking at at least anther 4-6 months before I see another consultant, unless I go to the A&E during the next flare-up, which is what I may have to do. Thanks again for your support and I will post an update as soon as I have one!

 

[Jag23]

Hi David,

I suggest going to the A&E, that's what I did. At the time I didn't know I had crohns or anything like but I got seen to pretty quickly.
Had all tests, just waiting for a MRI scan and I went to A&E in September.

 

[wildbill_52280]

i used dietary modifications to control almost all my symptoms for 4.5 years without drugs. i have one solid bm day with no blood or mucus and no complications since being diagnosed.
here is some of what i do- extremely low lactose and sucrose diet,switch from milk to cheese and lower your fruit intake by alot as it contains sucrose. this is basically the main mechanisms behind why the SCD(specific carbohydrate diet) diet helps people. the bad bacteria that is causing diarheaa loves simple sugars, starving them of these sugars makes them produce less toxins.


there is a treatment in FDA trials that may have cured Ulcerative Colitis, and is now being studied for crohn's as well. it restores the damaged bacteria in IBD patients here is more info- http://www.crohnsforum.com/showthread.php?t=52400

 

[DavidS]

HI folks, so back on here again following my first major flare up in about 3 months. Thought everything was going great and other than some general BM issues everything has been pretty normal. Then I had a pretty heavy night out with som friends and 4 days later, I got the familiar ulcers starting in my mouth and the next day I was laid up in bed with fever, chills, abdominal pain - very severe in LHS - and completely constipated. Back on my feet today and had first BM in 3 days but pretty wiped by the whole thing and worried that the cycle is about to start again (flare-up every 6-8 weeks).

As per my Doc's instructions on my last visit, I went to the surgery and had bloods done for Inflammation, LFT etc so will get these results some stage this week. Anyway, looks like the booze is a major factor for me getting sick so made the decision to go teetotal for the foreseeable future to see if I can get back on track (had been only having 1-2 beers a week for last 6 months until last weekend....). Just frustrated that I now have to attempt to deal with the terrible UK Health service and now doubt will be at least 6 months to wait for a Consultant referral if anything shows up in bloods.

Anyway, just on to provide an update and vent a bit of frustration I suppose-hopefully this was a minor blip and not the start of the cotinueoous flare-ups again!

 

[Nancye50]

Oh no. I hope it's a blip too. And so sorry it was a big night out that brought it on. If there's one thing I want to hold on to, it's beer!

 

[Jag23]

@ David

Dose the hospital you visit not have a IBD team?
I know that I can call them anytime for anything, they really are fantastic.
Hope you can find a team like them

 

[DavidS]

Hi Jag,
To be honest when my GP referred me to the hospital, it was picked up by a private clinic due to long waiting lists in the health service. That consultant signed me off as IBS without doing any follow-up on high CRP, Calprotectin etc following a clear colonoscopy. So I'm back to the start now. Had bloods done on Friday during most recent flare up so need to see how they come back before GP will move with this. his thought is referral for upper GI scope and small bowel series if these bloods show anything.

Sorry, in short, no, as I haven't yet got a diagnosis I have no IBD contact within the hospital to talk too. Coming up on three years since this first happened and no further on whatsoever. Gotta love the NHS eh.......

 

[DavidS]

OK so finally being referred for Upper GI scope and small bowel imaging. Hopefully this will get to the bottom (no pun intended) of whatever is going on! Just have to wait about 6 months due to the wonderfully efficient British health service!

 

[Nancye50]

Six months before the scope??! It sounds like you're at least making forward progress but wow, I hope you get the diagnostics done ASAP to finally get treatment and relief!

 

[Romey]

I'm sorry to hear it takes so long to get into the specialist in the UK. It scares me to think that the states might end up having our healthcare rationed in such a fashion someday. I hope not.
Within 72 hours of my initial consultation with my GI, I had a colonoscopy, biopsy, CT scan and conclusive Crohns/Colitis diagnosis all done at the GI center. Because my case was so severe, I immediately began a regiment of crohns specific drugs that improved my swelling, stopped the bleeding and got me on a path forward all within one week.
I know this does not help you David, but it kinda shows how we all have had different scenarios when confronting this terrible disease.
Time is of the essence, if your colon is swollen and untreated you will get worse.
I wish you and us all the best.

 

[DavidS]

Thanks guys, appreciate the feedback. 6 months is probably best case. When I had my colonoscopy it was 8 months from when I saw my GP until I had the scope.
To be fair my own Dr has been great but the healthcare system here, although free, is terrible if you are deemed to be able to wait for treatment (a big scandal here in Belfast at the minute as there have been deaths in our emergency rooms as people wait for treatment!

 

[DavidS]

Hi All. Just an update on this as have had a small bowel series and OGD which were both clean, so looks like Crohns is off the table. Not sure if anyone has an idea of what could be causing recurrent attacks like this with high CRP and elevated fecal calprotectin? Anyway have a follow-up appointment with my GP next week but not sure what avenue I will be going down now to get an answer! Thanks everyone for your posts/support and wish you all well.