Unbearable pain at the gastro-esophageal sphincter put me in the ER twice this past weekend after 5 days of chronic discomfort. Now I have uncontrolled diarrhea to add to this horrific situation. X-ray, CT scan, Ultrasound, Blood Tests…ALL NEGATIVE ! …Moving on to appt with Gastroenterologist for Endoscopy and Colonoscopy… Could this be a double curse of Psoriatic Arthritis and Inflammatory Bowel Disease ?? I don’t think I can bear this much longer…
I’m so sorry to hear this ThreadDesigns, I really feel for you, it is really not fun at all 
Yes, it is possible. There is, in fact, a slightly increased chance of IBD amongst people with Ps from what I’ve read. Having said that, until you know what it is, please try to be gentle on yourself and not to do too much what if on the IBD. Nowdays the treatments for it are MUCH better than they used to be, and often the most effective ones for IBD are also the most effective for PsA (eg Humira, Remicade, Methotrexate).
Can I ask a few questions? Just ignore them if you don’t want to answer 
Were you on steroids before the Enbrel and started to taper off once the Enbrel was working?
Have they done a Fecal Calprotectin test? (you’d have to collect your stool for that one)
Did you do a Barium swallow with your CT?
Have you had previous bowel problems, or is this entirely new?
And forgive me, but how old are you?
I have had significant bowel issues with equivocal results for the above (some indicative of Crohn’s, some not), and nothing outstanding on colonoscopy / endoscopy.
The response I got from my gastroenterologist was… “I am reluctant to label it Crohn’s at your age and relative good health, and that there wasn’t anything obvious in the colonoscopy. Particularly given you already have access to biologics through your arthritis, I suggest you switch to Humira, which is really the best Crohn’s treatment there is, before investigating further. In Australia a diagnosis of IBD will just put you on a roundabout of high-dose steroids, when Humira is the better treatment anyway.”
I had significant bowel issues when I was 16 that resulted in a resection (they took a bit out), and they were never sure of the cause (Crohn’s was mentioned). My tummy was never quite the same again, but nothing I couldn’t manage, and I assumed it was IBS. I started taking Enbrel in October 2013, and in November, when it became apparent Enbrel was working well, started a long taper off Prednisone (which I had been on for nearly 9 months just to stay remotely operational. Cue a couple of months later when the prednisone dropped to below 2mg per day, and all my tummy troubles returned - but with a vengeance. By March, things were not good, which is when the gastro recommended moving to Humira. The great news is that over 4 years on, Humira is still working a treat on both my stomach and joints in comparison to life before biologics (though the fatigue still really catches me at times).
There are also a number of other issues that either could be totally unrelated to PsA, and some that have a higher incidence in people with Ps and PsA. A couple I can think of to rule out are ulcers (since they are caused by a bacteria it could sit there relatively dormant until you start taking a strong immunosuppressant then fire up), coeliacs (seems to be a slightly higher rate of coeliacs with Ps), GERD (lucky me I’ve got that one too - though it rarely causes pain in my case), and nerve disorders at the gastro-esophageal sphincter causing spasms. It sounds like your medical team is well onto sorting through these though.
I also personally did find there were certain foods that would trigger my symptoms, and did an exclusion diet, though essentially I was so unable to eat anything much until the Humira kicked in that I waited until it was starting to work before trying that. It is probably the last thing on your mind now!
I do hope you get a resolution soon, and keep us posted
Thanks so much for responding Jen…where do I begin ?..
I’ll answer your questions first…
While taking plaquenil and methotrexate for a few months, the enthesitis in my elbows became so unbearable I took 10mg of Prednisone for 2 weeks while waiting for the Enbrel to be approved. It got me working again but only 10 mg makes me crazy and an insomniac. I tapered the steroid for 1 week, stopped the Plaquenil abruptly and continued with the methotrexate and Enbrel until my white counts were getting to low a few months into it and had to stop the MTX.
I’ve been able to eat what I want and when I want all my life with no digestive issues whatsoever. I’ve actually gone approximately 30 years with no health issues at all. I had to be threatened by my wife to get physicals …rarely saw a dr. for anything. I’m a year and a half into this nightmare that started at age 50.
I should have seen this coming though…my mother had Crohn’s and her feet would get very red and itch more often than not…
The tests done in the ER were basic and routine…not GI related. I’m seeing the GI dr. tomorrow for the first time and I assume he will order all the tests you mentioned.
I actually have a pending approval for Humira since lately (before the GI problems started) the Enbrel has not been able to keep up with the progression and invasiveness of the PsA. It has now moved into my pelvis and rib cage. You can press on almost anywhere of my body and it hurts. There are days that I reach for the Prednisone but don’t open the bottle.
Praying I get a good night sleep…I’ll keep you posted and thanks again for the advise.
Gosh @ThreadDesigns that’s so rough for you. Big cyber hugs.
Oh, my… I do hope you are able to get that sorted ASAP!!! There is enough to deal with without having those issues as well!!!
All the best for a good nights sleep and a quick diagnosis and rapid recovery!!!
I really do hope you are feeling better - that you’ve never had issues before, and are in your 50s, certainly indicates that IBD is not a forgone conclusion, despite your Mums diagnosis. Whilst it can be first experienced in the 40s (and occasionally early 50s), a very high proportion of peoole first encounter problems in their teens.
And it’s great to hear you are pre-approved for Humira - if IBD does eventuate (which it may not, particularly goven your symptoms are not characteristic), then having quick access to Humira may make all the difference.
For IBD, Humira is usually used in loading doses. Since I didn’t have access to those under our Medicare for arthritis, I forked out the whole cost for the loading doses, then the system paid for the maintenance afterwards.
It was worth it. I was losing around 10% of my weight every two months, from a “healthy” starting BMI of around 24.
Just stay on top of it and persist with getting treatment (diagnosis is a secondary goal), and remember that if you can’t eat much, then nutritious, high calorie foods (like avocado, olive oil, nice cheese, many carbs) are your friend. Nuts are good for me, but many people with frank IBD have major issues with them. With chronic uncontrolled pain and diarrhea, contrary to the mass media, it is unlikely fiber is your friend, and things like Paleo may not be terribly helpful either. Red meat can make me vomit for most of the next day…
Whilst I was waiting for the loading doses to work, I started my elimination diet - I spent a fair bit of time researching what could irritate the gut, and it seemed it was almost everything!
Two weeks later on only fish and white rice (yes, breakfast, lunch, and dinner), and with 4 loading doses of Humira, I was able to finally sort out what was a genuine problem for me!
With your lack of history, and atypical symptoms, I’d be very hopeful it turns out to be one of the simpler, curable issues that are on the table. But if not, with pre-approval for Humira, and already knowing how to manage a chronic disease, it’s a sh*t hand, but one that you DO have the resouces to deal with 
This is one of those areas where words matter. When it comes to the world of gastrointestinal diseases, you may hear a lot of acronyms such as IBD and IBS. Inflammatory bowel disease (IBD) is a broad term that refers to chronic swelling (inflammation) of the intestines. It’s often confused with the non-inflammatory condition irritable bowel syndrome (IBS). Although the two disorders share similar names and some of the same symptoms, they have distinct differences. Frankly what you are describing so far seems like IBS. People with IBS show no clinical signs of a disease and often have normal test results. Although both conditions (IBS & IBD can occur in anyone at any age. IBS seems to run in families and is very common effecting about 25% of the population at any given time. The good news is IBS comes and goes and is almost always exacerbated by stress. Stress reduction techniques may help. Consider trying:
- meditation
- regular exercise
- talk therapy
- yoga
Gosh knows stress at this point in your PsA journey is high. I know you want to get things sorted, but sometimes our desire to fix things leads to MORE problems than solutions. I would guess that for you getting your PsA under control will pay off huge. This may NOT be the best time for a big GI work up which frankly can aggravate your PsA. (thats a call you should make with a lot of input from your Rheumy)
Your gastro-esophageal sphincter pain is too high in your gut to think its IBD. Its possible its related more to residual effects of the Plaquinel and MTX. IF its IBD, the predi should help… gastro-esophageal sphincter pain is almost always related to some kind of reflux reaction.
BUT what ever you do stay out of the ER. 4 visits within a year for Abdominal pain without a found cause gets chart notes that you don’t want to have. (its enough to have them always consider a somatic pain disorder/drug seeking as the first possibility There is very little the ER can or will do anyway except eliminate any serious acute situation and send you on your way… Call the oncall doc for help.
I have PsA and IBS-D. I was in the hospital last fall for 6 days with horrible gastritis. I’ve had tons of blood and other labs. I’ve also had endoscopy and colonoscopy. Nothing except chronic gastritis in part if the stomach. I take Alosterone, Otezla, hyoscyamine, Welchol (for bile salt issue not high cholesterol), omeprazole, and 10 other prescriptions. I feel like a drug store. The IBS is still not under control. I’ve lost 50 pounds (I was too heavy, not anymore). So, I believe there is definitely a correlation between PsA and IBS because of the inflammation and I try think there are probably other pieces to the puzzle including stress.
Good luck with your journey through the investigation. I hope you find some answers soon. I can truly relate.
Thank heaven for insurance. This all gets v we ry expensive, even with good insurance.
I appreciate everyone’s insight and pray this additional problem resolves quickly…I met with the GI doctor and the Nexium samples he gave me have helped significantly. The endoscopy/colonoscopy is scheduled for the 9th. Thamks again for the well wishes… I’ll be sure to keep all you cyber friends posted.
Great to hear about the Nexium - that’s a really good sign 
Yes that’s a really good sign about the nexium.