Hi all. I haven’t been on much for a while. I have been very sick with gastrointestinal issues is all I could call it. It is making me feel very exhausted and sick. My stomach feels like it is in knots and I have been punched. I get waves of grumbling pain. My doc has ordered an ultrasound and other tests after that but it may take a while and he said he honestly isn’t sure what it is. Had anyone else gone through anything similar and can give me am idea?? He has suggested that next times it’s really bad which won’t be far away to go to the hospital and they can try sort it out. But hospitals don’t always know a lot about auto immune diseases etc. I need some guidance here please if you can. I am getting desperate. I can’t hold my little weight very well either
If you are having diarrhea it may be Crohn's or Colitus both of which are auto-immune based. What has your doctor ruled out so far?
Yes I have that too. Often. Sigh. Nothing ruled out yet just started the process.
There is a strong connection between these diseases and PsA. Its important to let your doc lnow your diet before tests. If you are consuming low or no gluten for example, your tests can be off for celiac.
Hi Robyn, yep - unfortunately as both Michael and Lamb say, there is a higher likilihood of having Inflammatory Bowel Disease (IBD – Crohn’s or Ulcerative Colitis, or a few rarer types) if you have PsA. There's an even higher liklihood of having Irritible Bowel Syndrome (IBS). Coeliacs, also an autoimmune disease, also presents more commonly in people with PsA.
Unfortunately these little buggers can be very hard to diagnose. Most doctors will go the IBS diagnosis unless you present with something pretty extreme. Like you, I wouldn't have a lot of confidence in the emergency room of a hospital to do a diagnosis of something this complex – that’s just not what they are designed for.
Did your doctor mention why the ultrasound? That sounds more like a suspicion of endometriosis rather than something to do with your gut?
So in getting the tests done, because each one can have long waiting times, try to be systematic if you can – Coeliacs is an obvious one to test first – blood test first, gastroscopy may be used for confirmation or monitoring.
You can also try something called Fecal Calprotectin (you have to pay for it as it’s not on the Medicare Schedule – but it’s not terribly expensive in the context of being constantly ill). This is raised above normal in 93% of people with IBD, but not in people with IBS (but don’t forget its not out of the normal range in 7% of people – more on that later)
Then comes the gastroscopy with periodic biopsy on which they do histopathology – to look at the possibility of Crohn’s – you are going to need a referral to a gastroenterologist for this one.
Next is obviously colonoscopy – if they are going in for the gastroscopy, I recommend you may as well get the colonoscopy done at the same time.
Then, if everyone is still puzzled, there might be a CT scan with contrast, to see if they can see bowel wall thickening.
How much weight have you lost in how much time? This is often considered as a differentiator between IBS (which isn’t supposed to cause rapid unexplained weight loss) and IBD (which often does). Also it’s worth knowing that if it’s IBD prednisone would usually control or lessen the symptoms if taken in adequate quantities – you haven’t been doing a taper by any chance recently?
Anyway, I’ve got to say that I spent quite a bit of time on IBD forums earlier in the year (and even longer in the bathroom with cramps and diarrhea, severe exhaustion and night-time sweats and temperatures). If you don’t get an explanation that helps, it’s probably the best place to start looking.
My first thought is to check all your meds and see if any of them (or even several) can have GI effects. I tend to get every GI side effect possible :(
Jen, you mentioned night sweats too. Is that associated because I have them about five nights out of seven. I wake up drenched and I could ring out my pajamas. I thought it might be menopause related.
The doc said the ultrasound is just to try and see if they can find what’s going on. Then the gastroscope ands the colonoscopy.
My rheumy previously mentioned bowel disease and how it is associated with Psa etc. I see her again on the 15th this month and I think she will get into it too. She actually works through the hospital.
Over the last couple of years I have lost about 5 percent if myself each year and I was small to start off with. I am only five foot two and a few years ago was a healthy 53 kilos with healthy muscle mass. And I am 43 next year. Now I weight between 48-49 kilos on a good day with barely an ounce of fat on me and not much else. I try and work on the muscle mass when my health permits.
I have to admit adding another automimmune disease to the Psa and fibro scares me. Though it shouldn’t I guess.
And out of desperation recently I started taking predniserine again and it calmed it down! I told my doc the GP that and he freaked a bit.
In answer to your question on night sweats – yep, certainly can be, although it can also be associated with poorly controlled PsA or RA as I understand – but I found it really distinct when I started having gut problems.
So here’s an overview of my “non-diagnosis” in case my experience helps;
I currently have a diagnosis of "short gut maladsorption syndrome coupled with IBS”.
The histopathology was suggestive of Crohn’s, the CT scan was pretty classic for mild Crohn’s, prednisone worked very well to resolve the symptoms, BUT
Endoscopy and colonoscopy were normal, with only a “normal” bleeding ulcer at the anastomosis, Fecal Calprotectin was within the normal range (<50), but on the high end at 41 (some of the initial research suggested that the sensitivity should be set to 35, but they settled on 50, with people in a Crohn’s flare usually in excess of 100).
I was luckily already on Enbrel. The GI suggested a switch to Humira, after which Fecal Calprotectin dropped to 4, I miraculously stopped losing weight (and put 3 of the 6 kilos I lost in the last 6 months back on), and both my extreme exhaustion and stomach issues resolved (though slowly).
Initially the GI felt that if the Humira worked, that would be a diagnosis, but come the day I returned with vastly improved symptoms and Calprotectin, he just couldn’t get over the normal endoscopy and colonoscopy he had seen with his own eyes and stayed with IBS….
Moral of the story – the diagnosis doesn’t matter to me because I’m being treated anyway, via Humira for my PsA. Because you are in Aus also, I’d suggest that if you have thought of getting onto the biologics for PsA, you consider trying that soon (it is oddly much harder to get them for IBD – which is completely non-sensical). If the idea of biologics doesn't appeal or your MTX is working fine here are plenty of other treatments for IBD, though obviously you have to be diagnosed first.
I should note that MTX can be used as a treatment for IBD - though treatments for PsA not everyone responds to every treatment.
With regard to the prednisone calming it - there has been some recent research that suggests that some IBS has an inflammatory component, so there's still always a chance that its "Inflammatory IBS" if you like - though they haven't really defined what that is and I have a suspicion that it's just mild IBD, or IBD in its very early stages. I should note that it only took around 20mg of prednisone a day to calm mine significantly, and both the people on the IBD forum, and the GI said that normal levels for a proper Crohn's flare would be more likely 50mg (ie 1 mg per kg bodyweight).
Your story is very interesting. I've always had bowel issues, and had symptoms which suggested IBD or Crohn's. But my colonoscopy and endoscopy both looked healthy. I've never had my Fecal Calprotectin tested however (never heard of it!).
Interestingly, the most helpful thing for my symptoms was taking an SSRI... reduced my symptoms 90%, which is just crazy. Of course, once that happened I put on weight for the first time in my life, for the past 10 years I've been struggling with weight gain vs. weight loss.... a very odd change to deal with.
I have had issues for years really. It has now gotten to the point it will not be ignored. Thank you all for your comments. You have given me the guidance I was looking for.
Marietta makes a good point - there is also a subset of people supposedly with IBS who get great improvement on SSRIs - they aren’t really sure why, though there’s some speculation about them having an impact on the Nerves in the smooth muscle of the gut.
I am already on them. Have made no impact at all. Only thing that did was the predniserine. Which I don’t like taking as it has it’s own issues. I do want a diagnosis. I want to be sure what’s going on and not assume. I am worried about any possible damage to my poor insides.
Fair enough Robyn - the reason at the end of the day why I’m not worried about diagnosis is because I’ve read enough and have enough confidence (many might say arrogance) in myself that I am certain that I’m getting the appropriate treatment. And because getting high quality treatment for IBD seems to be a problem in Aus. Happy to provide further details if you need.
I completely agree with you that knowing what’s going on with your insides is the best option (certainly the one I had planned on, though it didn’t work that way for me).
In the absence of that though, it’s worth considering if effective treatment is better than no treatment and not knowing.
Hi Robyn,
I've had GI issues since I was in my teens. Mostly diarrhea along with stomach pains when I got stressed. I was also very skinny and tired a lot. Never thought much of it. I've had very mild psoriasis since about 13 but again it was no big deal. Then at 42 (I am 45 now ) I was hit with a huge flare that pretty much blind sided me it came on so quick. Now that I look back at my life I see how all these symptoms are related. I think what we put in our bodies contributes hugely to how our bodies perform. I prefer nutrition to meds. I cut out gluten, dairy, sugar (white processed stuff) very little meat (has to be grass fed) processed foods and alcohol. I can pretty much manage my pain by doing this and my stomach has been great! I only take a low dose of methotrexate. I don't think we stress diet enough in this forum. Also check out the book "Breaking the Vicious Cycle" by Elaine Gottschall. Hope this helps. Feel better!
IBD-associated arthropathy is one of wonderful subsets we can get.The inflammation is not easily found, but interestingly wnough it seems that ultrasound is becoming a very good tool to find it. It will be important to identify any food triggers. Some folks have them most do not. Predniosone is not going to be a friend anymore.I don't know what you are doing for treatment but it can be dicey. For reasons we are still figuring out the IBD responds well to anti-tnf therapy BUT the anti tnf that the IBD responds too doesn't always work on the arthritis issues.
It would seem if anything was a diet issue this would be. Its not. While you certainly don't want to eat anything that would irritate the inflamed GI system trhat doesn't make the inflammation go away. Like all parts of this disease, its important to make sure the underlying disease is treated. Long term inflammation causes major problems to that system. (far worse than code brown or pain)
Thanks lamb. Fortunately in terms of diet I changed it quite a few months ago. I do not eat any 'trigger ’ foods etc and I only eat very healthy food I will get nutrition from. Very basic but clean and no preservatives or additives. I cook everything. I don’t even eat bread or cereal except plain oats anymore, lean meat, fruits and vegetables. So I can’t cut anything else out or I would be eating grass or cardboard. I can’t eat dairy, always had issues with that but now it’s everything.
I just read that link tlamb. Made me want to cry.
Robyn, I’m so sorry you are going through this. I really feel for you. I had a very challenging set of circumstances earlier in the year with regard to this and can definitely empathize.
My Blackest moments were not long after I figured out I had PsA - about this time two years ago, but my most terrified ones were at Easter this year when I realised Crohns was on the cards.
Do remember though that you still need to get a diagnosis (at least one you are convinced of - even if the docs aren’t sure) before you jump too far to too many conclusions. I never found stress was a big factor in PsA flares but it does a number on my gut!
Also remember that even if you have an IBD, like PsA for most people it gets better after treatment.
I see you are in Aus and i’ll leave you my phone number if you want to talk or just vent. Also the guys on crohnsforum.com are lovely and supportive if that’s where your mind is wandering.
I didn't make you want to cry. I was assuming you read the part where IBD related to arthropathy responds well to treatment (as Jen pointed out) The other thing you may not have thought about is that if its PsA related it will wax and wane as does PsA..................
That’s sort if what made me want to cry. Dealing with another disease. At least it can be managed. It’s just hell between now and then.