Eosinophilic Esophagitis / Gastritis / GERD: my stories

A few years ago I started to experience pain and difficulty when swallowing.  It gradually got worse.  First it was just thick sorts of foods that I had to chew particularly well in order to swallow comfortably.  Then it was all solids that were uncomfortable if I took bites too large, didn't chew well enough, or ate too fast.  Finally even fluids were getting hard to choke down.  Some meals were okay, then I'd dig into something and end up gagging or feel like I'd just swallowed a whole egg in the shell.  I had an upper endoscopy (esophagogastroduodenoscopy -- EGD -- scope of the esophagus, stomach, and duodenum) which showed that my esophagus was narrowed and had some suspicious markings in it which show up in cases of eosinophilic esophagitis (EoE).  I also had Schatzki's rings -- a batch of rings of scar tissue where acid washing up my esophagus from the stomach damaged the lining of the esophagus.  My poor stomach also had a hiatal hernia poking above the stomach.  Biopsies were taken to determine my eosinophil count, which ended up being normal.

My swallowing became somewhat easier after the dilation and eating became more comfortable.  After the dilation I began to finally feel symptoms of reflux (GERD -- Gastro-esophageal reflux disease) and was grateful for the prescription of acid blockers which I have been on ever since, and will likely be on for my entire life.  Since things still were not wonderful a few more tests were ordered up.  I went through a monometry study (motility study to determine the efficacy of my swallowing action).  It is a very uncomfortable test in which a thin strip of metal is threaded through the nose and down into the stomach.  I had to sit very still for several minutes while the testing strip warmed to body temperature.  Finally there were two technicians in the room, one to give me directions and hold a cup of water with a straw in it, and another to keep an eye on the computers.  At determined intervals I was directed to take a small sip of water and the metal strip would gauge pressure as it was worked down my esophagus.  The test showed that some percentage of my swallows were not as orderly as they ought to be.

The next test, to see how my esophagus would work with thicker foods, was a modified barium swallow.  I got to eat a spoonful of a food such as pudding mixed with barium (not as tasty as you might think) and have an x-ray type machine keep a video type view of how the food progressed.  To top it off, I was sometimes standing, sometimes sitting, sometimes tipped backwards all the way to lying flat and even a little beyond so they could see me swallow while leaning toes over teakettle!  This test appeared to be normal.  It was determined that I just had to eat carefully.  Small bites, chew carefully, eat slowly.  I was never a fast eater, now I'm positively glacial sometimes!

Over the next few years I gradually returned to having food impactions.  As it became difficult to swallow again I returned for another EGD.  I have now had several EGDs (I've lost track of how many).  In most they have done at least a gentle dilation.  In many they have done biopsies to test for EoE (esophagus), H.pylori (stomach), and celiac sprue (duodenum).

Eventually the EoE biopsies showed up positive.
Every time the H.pylori biopsies have shown up negative.
Every time the celiac sprue biopsies have shown up negative.

EoE: I first went through a long round of topical steroids -- a swallowed medicine that would coat the esophagus with steroids to take down inflammation.  After several weeks I had no better relief of my symptoms, so we discontinued that course of treatment.  Next I went through allergy testing.  I discovered I'm allergic to cats, feathers, and a number of local trees and weeds.  I seem to be borderline allergic to wheat and allergic to soy.  The next move was an elimination diet.  I spent two months off of diary and the second month also off wheat.  It was a long two months!  Since that time I have had symptoms of intolerance to diary and now take a supplement daily to help my body digest lactose comfortably.  Other than that, there was no noticeable change.  In the end I started just keeping track of my diet and corresponding symptoms.  I avoid large amounts of soy, such as tofu or edamame, but don't generally have trouble with trace soy or seasoning such as soy sauce.  The only other food I've noticed is that if I eat too much potato then everything gets stuck.  The worst possible "food" is french fries from McDonalds.  They are a combination of potato, soy and dairy (plus who knows what other additives) and the combination, especially if eaten too quickly, will make the rest of the food I try to eat that day get stuck in my throat.
My current course of action is to avoid major soy, use caution around potatoes, and treat seasonal allergies as too many allergens at once seem to flare up my sensitivities.

H.Pylori: I have had moderate to severe pain in my stomach from time to time.  Discovering my lactose intolerance was a big step toward calming the stomach pain, as was diagnosing and treating GERD.  H.pylori is a bacteria that is present in certain stomach infections that cause most cases of gastritis and is easily treated.  Unfortunately my gastritis is not the easily cured variety.  I have evidence of chronic inflammation.  My flares have become less frequent, but sometimes for several days in a row I'll go through a great deal of Maalox or Tums.  I have never determined the exact trigger for my gastritis, but I wouldn't be surprised if anxiety also lends a hand.

Celiac Sprue: This really leads more into my story of IBS, which I'll address on another day.  I have managed to have many symptoms of celiac disease but each time they try to verify the diagnosis they come up empty.  I have since discovered that fibromyalgia can lead to many of the same symptoms of Celiac disease, except that avoiding gluten will not fix the problem (*sigh*).

It has been just over a year since my last scope.  The last one was another test to check my stomach out.  I had several cases of severe stomach / chest pain which were so bad they landed me in the emergency room.  They ran EKGs to rule out heart problems and did CT scans with swallowed and injected contrast to discover any anomalies.  Every test came back normal.  In considering my symptoms and all things related I am quite sure that these are actually episodes of esophageal spasms.  I have not addressed this issue with a doctor since that epiphany.  I have had to ride out a couple of these episodes at home since then, but if they continue I may someday try to track down how to best manage them.

Interstitial Cystitis: My Story

Thanks to the miracle of facebook, I have been able to join various groups and have learned a lot about how my symptoms of various illnesses are the same and different from others.  Every body reacts differently to health problems, and some health issues vary even more widely.  Interstitial Cystitis (IC) can vary from occasional discomfort, to pain severe enough that the patient will opt to have their bladder removed!

The hallmarks of IC are urinary frequency and urgency, and bladder pain.  It is often associated with other health issues such as IBS, vulvodinia, and fibromyangia.  By "associated" I mean that a lot of people with one of those issues have one or more of the others also.  There is no connection yet found between them, but it seems more than coincidental.  Pain with IC often spreads into the whole pelvic region, shoots down the legs or into the back.  Having such severe pain at the center point of your body quickly overwhelms you.  

A few years ago I had a great deal of pain in my back.  It seemed to be associated with my kidneys, especially the right side.  I went to my doctor and he ran a urinalysis and diagnosed a severe urinary tract infection (UTI).  (Please note: I always take antibiotics exactly as prescribed and finish them all.)  The infection persisted so I returned and tried another antibiotic.  The doctor wanted to see me back after a couple of days to retest and make sure the infection was all the way gone.  At that point the infection was cleared except for blood in my urine.  A while later I was tested again and still had blood in my urine.  I was referred to a urologist and by the time I got in there I had another UTI!  The urologist also did a kub (kidney-ureter-bladder x-ray) and discovered 5 kidney stones.  No wonder it hurt!  I was treated for the uti and as the kidney stones persisted I was scheduled for a lithotripsy.

Lithotripsy is a procedure in which ultrasonic shocks are sent into the specific area where the stones have been discovered.  The waves break the stone/s into tiny fragments which then pass easily.  It is somewhere around 97% successful.  Well, I'm just special.  A few weeks after the procedure I continued to have pain and blood in my urine.  Another kub showed that only about 1/3 of the stone fragments in my kidney were dissolved.  When these stone fragments persisted (and I believe there was another infection or so around this point too) they scheduled another lithotripsy.  The second procedure was done and in "only" 6 months I was finally rid of all the kidney stones!  Since then I have had several more UTIs and a few other stones, but ones that cleared out on their own.

I continued to return to my urologist when UTI symptoms presented.  A few times I came in and despite severe pain was told that my urinalysis was clear.  So finally a cystoscopy was scheduled.  Cystoscopy is a procedure where a catheter in inserted and the bladder filled with saline, then a tiny video camera inserted to view the inside of the bladder.  Rather than being a smooth pinkish color the inside of my bladder was spiderwebbed with tiny red lines.  At intersections there were pinpoint red pricks.  With my symptoms these signs (known as glomerulations) are indicative of IC.

Treating IC is tricky.  There are a few options but none will work for everyone.  It's a lot of trial and error to  hopefully find something that will work.  Most end up working with a pain management doctor.  Treatments range from pills to catheterization with a "cocktail" of topically applied medications.  Diet often plays a role in managing IC symptoms, and all acidic foods may have to be removed from the patient's diet.

I am pretty fortunate in my case of IC.  I can go for weeks at a time with  no symptoms at all.  Diet does not seem to affect my symptoms.  I have not yet tried any medications besides an occasional dose of prescription Urelle which works as an antiseptic and anelgesic on the bladder.  It also turns your urine neon blue, which is entertaining ;)  My case of IC is very much stress related.  Almost any time I feeling a lot of stress I get a flare in my bladder.  I can go from fine to curled in a chair nearly in tears in a matter of just a few minutes.  Sometimes these flares last only a couple of hours, but usually a few days.  

My usual treatment for my IC is to manage my anxiety and take Urelle and a good hot bath.  Heat is relaxing to spasms that can occur in the bladder.  I now keep a bottle of urinalysis test strips.  When I feel symptoms of an infection I test myself.  If the strip shows signs of an active infection or if the symptoms continue longer than a usual flare, I'll go to the doctor (as the doctor's office is much more accurate), but usually it just reassures me that it's an IC flare, not an infection.  

My worst flare was a little over a year ago.  I was too cold (being cold tenses my body up and can lead to spasms in the bladder) and under a great deal of stress as I'd gotten lost walking in the dark with one of my young daughters.  The ground was icy and I was wearing high heels.  All of these things contributed, but I could not "give in" to the flare!  We were in a hurry to get to a safe, comfortable place.  I had to walk in baby-steps as all my muscles froze up in spasms.  After we finally got the evening resolved and got home and warm my pain started to relax.  It took a few days to finally resolve, and I was having to urinate a dozen or more times every day instead of just a few times.  

IC is one of many 'invisible' diseases.  This means that if you walked past me in the grocery store or even lived next door to me you may never know or suspect that I have to organize my life and anxiety around this disease.  So please excuse me if I have to run quickly to the restroom or if I prefer to sit under my heated blanket rather than go for a hike in the cold.  

Fibromyalgia: my story

Fibromyalgia is my most recent diagnosis.  Technically I was diagnosed with fibro about 12 years ago.  I had severe joint pain in my neck, shoulders, wrists, and stiffness in my lower back.  I had testing done, including some genetic testing, and was tried out on a variety of anti-inflammatories and sent to physical therapy.   The physical therapist was incredibly helpful.  The rest didn't do much.  The physical therapist said from his experience with what I was experiencing it appeared that I had an impingement in my neck.  This made a lot of sense.  The way pain started and was treated all made sense with an impingement.  I still am cautious of certain activities which can cause dizziness and pain.  But the fibromyalgia diagnosis was a joke.

Fast forward to a few months ago:  I had been on Cymbalta for a few years to manage depression.  Either my depression changed or my response to the medicine changed and it was not doing all that I needed.  So I was changed to a different antidepressant.  Over the next few weeks I developed intense, deep pain throughout my body.  I though I had a virus, or perhaps had hurt myself somehow.  I thought maybe I was just overtired or needed more exercise.  Well, some of these may have been true, but I finally called my doctor and asked what might be going on, as the pain has escalated to a point where I couldn't sleep and was getting out of bed feeling run over by a steamroller.  He gave me the number for a few rheumatologists he recommended and said he'd like me to be evaluated for fibromyalgia.  It took two weeks to even get ahold of a rheumatology office (due to office vacations, holidays, strange hours, nobody answering the phone, nobody calling back...).  When I finally got through I discovered it was MONTHS before I would make it onto their short waiting list.  I checked with every rheumatologist I could get to that is covered by my insurance.  Nobody would even talk about seeing me in less than several months.  Frustrated, I called my doctor back.

When I saw my general practitioner again he said that there is a shortage of rheumatologists and since I coudlnt' get through, he would just work with me.  He tested the classic trigger points and I nearly leaped off the exam table.  I hadn't been sure I would react at all... but wow.

Cymbalta, which I had been on before my symptoms became so marked, is one of the medications used to treat fibromyalgia.  The new antidepressant I was changed to, though, is not compatible with Cymbalta and we didn't want to change me off something that was working for my depression.  So the great medicine trial began.  I was started on Savella.  Within a couple of weeks the top 20% of my pain was managed.  I was able to sleep most nights.  I wasn't in such severe pain, but still in constant pain.  So I returned to my doctor and he increased my dosage to the maximum amount.  Within a couple of weeks my pain reduced further.  My pain was manageable most days without a lot of effort!!!  That worked great for several weeks.

A couple of weeks ago my pain started to increase again.  I initially thought it was just a flare related to a sinus infection I was fighting.  I finally asked my doctor for a couple of pain pills so I could sleep.  If I do not get at least 9 to 9 1/2 hours of sleep each night my pain increases dramatically.  Pain keeps me from sleeping... so it creates a terrible downward spiral.  The pain persisted.

After spending two days at level 7-8 pain I called my doctor again.  This afternoon I saw him and we made another medication change.  I have now added a muscle relaxant up to 3x daily to my medicine cabinet.  I'm 32 years old and take 7 pills a day.  Well, 10 now I guess.  If this doesn't help within 2 weeks I'll go back and we'll try something more.  I am praying to avoid constant pain medication.  I don't like the extra layer of fog and other side effects of pain medications.  I guess we'll just have to wait and see.

On a happy note: Last night I made it to the basketball with DD!  I got a padded folding stadium seat to go on the hard seat there and it made a world of a difference.  Since I'm not riveted by basketball I also brought my crochet project along :)  It is distracting to me and helps block some of the attention to pain.  We made it through the entire game and DD was VERY grateful.  It was a great mommy-daughter date and I'm glad I did it.

Fibro Pain Scale

Fibromyalgia Pain ScaleBy Carol J.Johnson Level 1: You experience very minor pain in parts of your body. You don't have to take any pain medications and you can do your work with no problems.
Level 2: The minor pain has increased to dull aches in some parts of your body. You don't have to take medication and you still can work as usual but you don't want people 'in your face'!
Level 3: Your minor pain is strong enough to get your attention. You resort to Over the Counter medications. You are getting grouchy now.
Level 4: Now you can only ignore the pain if you are involved in activities at work or home. You are taking more Over the Counter medications but they don't last long. You begin to cut back on your activities in favor of just sitting down.
Level 5: You can't ignore this pain for more than an hour, even with Over the Counter Medications. You cut back of all activities except the most important ones. Work is possible, just barely.
Level 6: You simply can not. Ignore your pain for even a few minutes. But with prescription pain medications you have limited functioning abilities.
Level 7: This level of pain is the kind that keeps you awake at night, makes it hard to think and act. Your prescription medication only dulls the pain for a short time,. You limit your activities in order of importance. You really can't work well.
Level 8: This is serious pain. You don't want to do anything or be bothered by anyone. You have taken so much pain medication you are unable to fully concentrate on anything, Work is out of the question.
Level 9: Very serious pain here. You can not concentrate on anything but pain. You should not do business transactions or make any important decisions because of your limited mental state. You might want to give some one Power of Attorney. You can not go to work and you shouldn't drive a car. At this point you begin withdrawing from the world around you.
Level 10: Pain has made you totally unable to function. You don't want to deal with or talk to anyone. Even with narcotic pain medications you are still in horrible pain. You go to bed or go to the emergency room for any help you can get.

I don't remember the last time I was below a level 4.  I have tried every over the counter pain medication but it doesn't seem to make a difference.  Mostly it makes my stomach hurt, which isn't worth it.
Today I'm at a level 8 and trying with all my might to get something done.  I'm supposed to be chaperoning my 4th grader on a choir trip to sing the national anthem tonight.  I have a few pain pills, but if I take one I will not be able to drive, so I cannot take one.  She has been looking forward to this for over a month and I will not let her down!  The fibromyalgia pain seems to be also irritating my IC pain.  Or perhaps it's the anxiety from the pain that's kicking my bladder into major pain.  Whatever, I cannot move any way.

I was diagnosed with fibromyalgia back in October of last year (4 months ago).  I was started on Savella and it helped.  At first it took probably the top 20% of pain off, and I was grateful.  I talked to my doctor and he increased my dose to the max allowed dosage (doubled).  At that point it cut my pain by 70%.  It was wonderful.  Not pain free, but manageable.  For some reason the pain has been ratcheting up lately.  I don't understand why, and I'm very frustrated.

I have been pushing myself to put on a "healthy face".  I don't want to sound like a whiner either.  I am frustrated that when I apparently look or sound "good" people assume I also feel good.  That's not true!  I have tried to not shove my pain in other people's faces, but then I get frustrated when they don't take it into account.  I realize that is illogical.  And I don't want it to be my defining feature, so I should be grateful they are able to forget about it.  But what can I say, I'm full of contradictions.

This certainly isn't well written.  It is not well thought through.  This is simply what is on my mind today while I'm in such pain.  I need somewhere to vent these thoughts and feelings without adding the guilt of whining.  Balance is my goal, but it's hard to get there.