Very frustrated/more tummy troubles

[linda]

I saw a gastroeneterologist yesterday because my stomach pain has become unbearable and I've had dairhhea for 6 days (sorry for that visual). I'm scheduled for an upper endoscopy for this Tuesday, and based on the results of that, possibly an ultrasound of liver and gallbladder and a coloscopy. I've completely stopped the Mobic and reduced the pred to 10mg, meanwhile, the remicade and mtx are working very well.

As you know, I went on the remicade/mtx so that I could stop taking the pred and mobic and give my tummy a chance to heal-apparently I made that choice too late, and may have to stop the remicade/mtx, which leaves me with nothing and a stomach that can't handle abx, either.:headbang::headbang::headbang::headbang::headbang::headbang::headbang::headbang::headbang:

I have an appt tomorrow for a remicade infusion; the GI/Internal Med doc said go ahead and get the infusion. But I suspect that this may be an ulcer caused by H. pylori, since my AP doc let me take abx for 10 months before telling me that I needed to be taking probiotics, and that is when my stomach problems began. If that's the case, then remicade is just going to give the green light to the bacteria, and make me very sick. I was ready to go to the ER last weekend, but I was able to get a doctor appt quickly due to a cancellation.
(Let me give you a summary of health care in Tucson: It takes 4-6 weeks to get in to see any doc, even a PCP and even if you're already an established patient, and another 4-6 wks to get procedures scheduled. I lucked out and caught cancellations on my appt and the upper endoscopy.  Because of this, our ER's are swamped with wait times to be seen of 8-10 hrs. Last month a patient died from pneumonia while waiting to be seen; he had been in the waiting room for 10 hrs and had not been re-evaluated since he was triaged upon arrival.)

If the remicade does make me sick, I'm looking at having to go to the ER on a weekend. But I'm making good progress with it and postponing the infusion will set me back, which will mean upping the pred and going back on mobic, which I can't do because of my stomach. Yes, that dizziness you feel is from the circles I 've been running. I have a call in to my rheumy about this, but the usual wait time for a response is over a week because his nurse is very incompetent. (The other side of healthcare here is poor quality of care from staff.)

If anyone has any thoughts on how to proceed I'd appreciate it, but esp Joe M as his wife is on Humira. Thanks,

linda

[Joe M]

Hi Linda,

My ears perked up when you described your stomach issues.  Michelle is bothered every now and then with stomach/colon issues like you describe.  She had a colonoscopy a couple years ago that revealed diverticulitis.  The doctor who did the procedure said it was probably from RA inflammation.  Diverticulitis causes symptoms that are nearly identical to those of stomach ulcers and IBS. 

So I would not be so quick to say that the mobic and ABX caused the stomach/colon problems you are experiencing until you figure out just what the problem is. 

IMHO, I would take your doctor's advice and go ahead with the next infusion, espicially since you say they are working very well.  Michelle found that once her inflammation was under control,  her diverticulitis symptoms were significantly reduced. 

Whatever you decide, best of luck.

Joe

[linda]

Joe,  thanks for your quick reply. I feel like I was just starting to see daylight when this began to get worse. It doesn't help that the symptoms intensified in just the last 2-3 weeks-right when I started both the remicade and mtx. I'd be willing to go ahead with the infusion, but ultimately it's up to my doc. They won't start the infusion until they are sure I don't have an infection, and they'll call the doc to confirm that they can go ahead with the treatment.

I can't tell you how much I don't want this to be yet another chronic illness. I hadn't even thought of divirticulitis, altho at this point it's obvious something is wrong. I was hoping that it was just gastritis and that it would get better as I weaned off the meds, but I don't think it's that simple anymore. I appreciate the information, I'll keep it in mind as a question to ask when I see the doctor next week.

linda

Edit: As I suspected, my rheumy wants me to wait until after the scope on Tues. to get the infusion. Probably a good idea, I don't want to have remicade thruout my body before a procedure that carries a risk of infection or perforation. Guys, tell me there's a light at the end of this tunnel!

[Maz]

[user=11]linda[/user] wrote:

Edit: As I suspected, my rheumy wants me to wait until after the scope on Tues. to get the infusion. Probably a good idea, I don't want to have remicade thruout my body before a procedure that carries a risk of infection or perforation. Guys, tell me there's a light at the end of this tunnel!

Hi Linda,

You must be very concerned about which direction to take, but it sounds like you're making the wisest decision, to wait for your remicade infusion until after the scope procedure. If by some chance it turns out to be diverticulitis, it can be treated with…ta da…abx and flagyl (both treatments that Dr S in TN advocates for rheumatoid patients). So you may be back on AP before you know it.  😉 

Sometimes the bleaker-seeming times feel like scary turning points that we never expected, but they can also lead us in new directions that may actually benefit us in the long run.  I try to tell myself this all the time.

You're in my thoughts and I'm putting it out there that the scope is a breeze and provides you with helpful answers that will have you back on track in no time. Please let us know how you're doing after your procedure.

Peace, Maz

[linda]

Everything or nothing at all, that seems to be the pattern my body follows. The GI doc found no sign of inflammation, ulcers, etc in the upper endoscopy. I'm being scheduled for and ultrasoundof the liver, gallbladder and pancreas. I did a little digging on pancreatic disorders and found a dx called autoimmune pancreatitis (AIP); it was not a known illness until 1995-96. It used to be classified under idiopathic pancreatitis. It mimics pancreatic cancer and can only be discerned from that by a biopsy and presence of IgG-4 antibodies. It involves the gallbladder as well, and is seen in patients with other AI diseases. It can also cause diabetes; I've been told by an endocrinologist that I'm pre-diabetic, but assumed that is was from the prednisone. The other endocrine glands, thyroid and adrenals, may also have autoimmune disorders. My last set of labs showed that I was hypothyroid, and the symptoms of AIP fit me exactly. The only problem with that diagnosis is that AIP is supposed to respond to steroids, but I've been on pred for a long time.

My concern is that the GI doc will diagnose me with pancreatic cancer (if the ultrasound shows abnormalities) when it could be AIP. I don't know if the medical community accepts it as a true disease or if it is controversial like FMS. Anyone know anything about AIP?

linda

[Maz]

Hi Linda,

Sorry I don't know a thing about AIP and not any help with this, at all, but just wanted to thank you for letting us know you got through the scope procedure okay. I know it's hard not to think the worst at times like these, but I'm putting it out there for you that the ultrasound will offer some clues and that it's something very simple and easily rectified…or better yet, that they don't find anything and this is just as transitory inflammation of some kind.

Rooting for ya in CT!

Peace, Maz

[Joe M]

Hi Linda,
Are you still going to get a colonoscopy?  Here's hoping they can figure it out.

Joe

[linda]

If there are no answers from the ultrasound a colonoscopy is next on the list. I've been wondering about this AIP; what would a herx reaction look like with this? It's interesting that my so called tummy troubles have been around for about 10 yrs, but only began to be severe after I started on abx. Now I know that my stomach is fine, I wonder if this pain is from a herx reaction-an inflammation of the pancreas- now made even worse by mtx which is known to be hard on the liver, pancreas and gallbladder. Not to mention the suppression of the immune system that would allow any bacteria in the pancreas to grow. If that's the case, it seems to me to be dangerous to continue with mtx/biologics; but it also seems dangerous to go back on abx and create a herx that could cause permanent damage to the pancreas and surrounding organs, and even result in consequences such as diabetes.

At this point I would gladly accept a diagnosis of diverticulitis, it seems the easiest to treat. I'm still surprised that there is no damage to my stomach after being on steroids and NSAIDS for 10 yrs. I wonder how many people who take these meds and have abdominal pain are actually feeling pain from autoimmune pancreatitis?
I guess there's no point for me to guess until I find out what is going on, but I'm getting very impatient. 😉 Actually, patience is not one of my stronger virtues, so I suppose I should say I'm getting even more impatient than usual!

[Michele]

Hi Linda,

It's truly amazing how long it takes to get into these specialists. Especially when you get rebounded around not finding out the cause. I want you to know I'm thinking of you and hoping your tummy troubles get some resolution soon!!! I'm rootin' for you from VA!

Patience is not my virtue, either!

Michele

[John McDonald]

I've been wondering about this AIP; what would a herx reaction look like with this? It's interesting that my so called tummy troubles have been around for about 10 yrs, but only began to be severe after I started on abx.

Indeed.

[Author]

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