Trying to figure this all out...getting frustrated!!

Hi all,

I've read some posts here and everyone seems to be very supportive and knowledgeable.

I'm a mid-20's female who, up until the end of last year was quite healthy.

Starting last November I had a gradual onset of fatigue and GI symptoms (D, constant nausea, vomiting).

Although it started out fairly slow, it rapidly progressed at the start of the new year and within a month and a half I'd lost ~ 15% of my body weight (on an already small frame).

I had an EGD/colonoscopy done by a doctor whom I later found out focused primarily on GI surgeries, not GI disorders. He diagnosed me with lymphocytic microscopic colitis and gastritis, and I was treated with Lialda DRx 2 months and Prilosec x3 months.

My symptoms improved for awhile, but almost immediately after stopping the medications, the symptoms came back worse than before. Resuming both of them 2 weeks later (per my family doctor) didn't ease the symptoms off at all this time.

After losing all the weight again and being so fatigued/weak/dehydrated from the D and vomiting, my family doctor prescribed a 60 mg Prednisone pack to be decreased by 10 mg every 3 days...while I was waiting to get in to a GI specialist.

I saw the GI specialist yesterday, and he was very kind and seemed to want to be helpful, however seemed very frustrated that I was on prednisone because he said that would make everything much harder to diagnose now as it "masks" so many things.

He wants me to repeat the EGD/colonoscopy and due a Pill cam next week. He also ran blood work (ESR and CRP were normal- however how indicative are these after a week of prednisone, I wonder?) and celiac panel and IBD panel are still pending. Other than some expected electrolyte abnormalities due to dehydration, everything has looked good.

I looked at my old colonoscopy report and the terminal ileum biopsy showed "Prominent lymphoid aggreggates within the lamina propria composed of small immature lymphocytes. Some other lymphoid aggregates show reactive lymphoid hyperplasia composed of germinal centers surronded by cuff of mature lymphocytes."

R and L colon biopsies both showed "chronic inflammation with intact glandular architecture" and the one from the L side showed "focal lymphoid aggregates."

I am wondering if anyone is familiar with these terms? None of this was ever explained to me. I was just told "microscopic colitis and gastritis" and now I'm being told it needs to be repeated (only 4 and a half months later!)

I feel a bit like I'm going crazy. I'm told I don't "look sick...just way too thin." But I'm too tired to hardly function. I have to get up early to have time to let the symptoms pass in the morning (when they are most severe) and make it to work on time. I'm embarrased to be in my 20's and worried about leaving the house or having to plan my errands to make sure that there are restroom facilities when necessary.

I also feel like I'm beating my head against a wall to say "this isn't normal!" because I don't look "that sick."

However, I'm also not made of money, and don't want to keep repeating expensive tests if they're not necessary.

At a loss at the moment...

Anyone had similar experiences or insight?

Bella,

Thank you for your kind response. I am sorry you have struggled through so much with this.

I was also prescribed Lomotil at first (before any testing done) but told to stop it after a few days because it caused severe abdominal pain, where the pain had been hardly more than an aggravation prior.

It sounds like you understand how hard it is to just want an answer so you can 'get on with things.' It sounds like it is not always that simple.

about a month prior to this I completed my first half marathon trail run and was doing 60 mile bike rides routinely...this has completely knocked me off my feet.

I am now just struggling to work while I try to get it sorted out. I work long shifts (12+ hours, 3x week) and sometimes opt just not to even attempt to eat during the shift because I don't have time to deal with the symptoms, and eating, other than liquids, usually results in a good deal of pain lately.

The 3 shifts a week are completely wiping me out, and I'm not doing much of anything else. So to be told "you look healthy" was disheartening. I am glad I do not look sickly. I want to get back on track as soon as I can, but I wanted to just tell him "well, I don't feel healthy."

I also allot about an hour or a little more in the morning just to deal with the symptoms. Every time I think I can leave the door it gets worse. Doctors ask you "how many times a day" and my response is "I don't even know how to keep track counting" It can be 10+ times in the morning alone.

I've tried a Gluten Free diet since February, and due to not tolerating pretty much ANYTHING lately, was told to avoid lactose, fiber, caffeine and carbonation as well.

I can normally "tough it out." But my tolerance to even deal with anything is wearing thin lately.

I'm not keen on repeating the scopes, especially due to the cost, but at this point...I just want to know I'm at least headed the right direction!!

kazbern-

I appreciate your input. I question the GI specialist if the scopes were realy necessary this soon afterwards. The response he gave, gave me the impression that he had not read the reports thoroughly (at all?), as he said they needed to go "higher up" into the terminal ileum...however, what I can tell from the report they visualized it fairly well and no mention of even trying to advance the scope further, and they took the biopsy...so I wonder, too, what the benefit is of repeating it.

His office is supposed to be calling back to confirm if they can do the pill cam at the same time (so only have to do one prep) and I think I will clarify to make sure he has had time to review the full report!!

The prednisone made the vomiting significantly worse the first couple days. I ended up going to an urgent care center to get fluids because I was so dehydrated that even after a liter of fluids given IV I still didn't need to urinate (hadn't in about a day and a half). They gave me Zofran to take before taking the prednisone to try to help with that, and since then I have seen some improvement. GI doc also told me I could take Imodium once or twice a day to slow the D as right now my major concern, as far as just functioning, is staying hydrated.

So, long story short, I would much prefer to get off this prednisone, which he said I could taper a little faster. It has improved the symptoms some...but I can only keep it down with the Zofran taken 45 minutes or so beforehand, and then even after that I am nauseous all day and only taking in a limited variety of bland foods (I am surprised there are any bananas left in the region ;) ). I am continuing to lose weight.

Think I will try to get ahold of his office tomorrow to clarify about the scopes. Despite being blessed with good insurance, that is a good chunk of money to pay if it is just due to him not examining the old report yet, or if there is very little likelihood of it showing anything now :(

Hi Gumby,

Thank you for replying. It's helpful to hear from people who have been living with this for awhile what is considered reasonable and what is not. My initial reaction was also that it was way too soon to repeat, but I really had no idea.

I did have all the stool tests done before the first colonoscopy, and all of those (blood, cultures, cdiff, O/P) were all normal.

I'm also curious about how he ordered an "IBD panel" on my bloodwork. How diagnostic are these? Would that, with the previous biopsies be enough to rule in or out IBD?

Sounds like I just really need to get ahold of his office before next Thursday and clarify that he has all the reports available to him (and if not, let them know I'd be more than happy to assist in getting them! It took me 2 minutes to get them from Med Records!)

I live in a small area, and so I DO have other options as far as requesting to see another GI specialist...but I'd be looking at waiting another 2-3 weeks for an appointment. Being that I have to return to work tomorrow...it may sound whiny or pathetic...but I just don't have it in me to wait another 2 weeks just to get an APPT...and then wait for what the plan is. The "referral process" to get in with this doc was started May 15th :(

Thank you all, again, for your continued support and information...

I've never had any other tests done. I had regular x-rays done (no barium) that they said were to make sure there were no perforations, obstructions or "loops." All it said was "nonspecific appearance of the abdominal structures." I don't know how much more vague you can get than that!

I wish so much I knew more about all these tests. I don't know why the prednisone made me vomit so much either. I've never been on a steroid before. I just know as soon as I took it I would start vomiting. I am still on Prilosec. Since I'm up early anyways I've tried taking the Prilosec, waiting an hour, take Zofran, waith 45 minutes than take prednisone. Don't know if that's the best way to do it but...

Not working is not much of an option right now. It's just me, and to cover these bills and normal bills I need to be working. I have some PTO left, but am worried about using it all up right away. Also I called off two days this week, and after 3 in a row you have to go through a whole doctor-approval process. This is all just a headache.

It's frustrating living in a small town. They have great hospitals here for a certain specialty or two---needless to say, GI is not one of their specialties!

I don't even know I'm on the right track at this point. Reading here, some things fit, some don't (and I know everyone can be very individual with symptoms).

My heart breaks for those of you suffering with such severe pain. My pain has never been all that severe...it has had it's moments, but not over long periods of time. I also have pure liquid black stools, but have never had a positive occult blood, nor has my blood work ever showed anemia (which I was warned could possibly be false due to being so dehydrated?....but still no actual positive test for blood in stool)

Yet some of the other symptoms...sores in mouth that dentist says is not gum disease related, always reddened throat, D 10-15+ times a day and constant N/V. Swelling in legs (long before started prednisone). Extreme fatigue.

All these symptoms are so vague and nonspecific...knowing that the biopsies showed microscopic colitis...is that why they are narrowing in on IBD? Or are they just getting too narrow focused? Atleast infection has been ruled out, so I suppose at that point, I don't know what else they might need to look at.

I hate being a "pain" and contacting doctor all the time (although, I finally did start calling daily after 2 weeks of not hearing back about referral).

I just wish I better understood this stuff.

Thanks for letting me vent here...and for all the input. It is helpful, as I am embarrassingly ignorant to the matter at this point. It's hard to ask for what you need when you don't even know!!

Crohns can be a very evasive disease--so difficult to diagnose. I'm no expert but I too think it's time for an upper GI with barium follow through or a CT scan with a barium swallow. Sorry--it's yucky--but that's how the docs get answers. Blood work too. Your CRP, sed rate, white and red counts--they can tell a lot. How about a complete metabolic panel to see where your electrolytes and minerals are? Liver panel? Has the doc kept track of the length of time and persistence of any of the other symptoms: mouth sores, leg boils, excema, finger nail indentations, abdominal pain/mass? What kind of pathology was done on the biopsy? Did you get clear results?

Vomiting--has a blockage, stricture, obstruction, tethering, fistulas--have they been ruled out?

I hope and pray you find some answers and relief soon. Keep us updated.

BFTW, you might want to consider getting some nutritional replacement drinks so you can get some fluids and calories in while you wait for the GI. I'm sorry you're feeling so rough. Hang in there, or get yourself to the ER again!

Do you know of any that are more gentle on the stomach than others? I am willing to try at this point.

I used to work out a lot (prior to this all starting again), and would drink chocolate Muscle Milk (lactose free despite name, and gluten free) during workouts. I've had one of those on occasion and seem to tolerate it ok, but it's not full nutrition supplement, just protein drink.

I've been told to stick to gluten free, lactose free and low residue diet til further notice...I'll have to look at what options are out there but thought I'd ask if anyone has found one easier on the stomach than others? Or just trial and error?

Is it unusual to tolerate liquids much better than anything solid? Just about anything solid right now is causing pain, but liquids seem ok as long as not carbonated or acidic. Actually, I tried rice milk for the first time today and it almost seemed "soothing" in a way...and the vanilla flavor doesn't taste too bad...that was a nice surprise...

Two more nights of work to get through then should hear from GI doc Tuesday, and unless plans change, have procedure(s) Thursday. Hoping so much for some answers...Nothing is providing a lot of relief yet, and the level of exhaustion and frustration is putting me near tears at times...I'm not normally whiny like that either (though that's probably hard to believe from my posts here!).

great post, gumby. What SHE said, BFTW!

The mucous squirts are really frustrating. BTDT. Makes me think that you have inflamation at the rectum, too, which can happen. That is best treated with rectal meds. Hang in there, it's almost Thursday.

Best wishes for you BFTW!

patchy inflammation is typical for Crohn's, while continuous inflamation is typical for UC. That's why the DR mentioned it to you. Glad you got through the scope alright and I hope you will post the pill cam results when you get them too!

Do you remember where the patchy inflammation was?

Huh...

So this is why we need doctors, I guess! Returned the Pill cam recorder today as instructed and asked if I could get a copy of the scope report, as I vaguely remember talking to the doctor after the procedure, but I was still quite a bit out of it.

So in response to kazbern's question, the report showed diffuse gastritis and duodenitis. Several biopsies were taken from both those areas as well as random biopsies from terminal ileum and the colon, however it appears the lower scope was "unremarkable" (this is also where the lymphocytic microscopic colitis showed up in the left and right colon on the old report). So I misunderstood and it sounds like the upper GI scope was what showed more areas of concern. Yet I do remember him saying he still thought there was fair possibility of Crohn's and wanted to get the Pill cam report and the biopsy results.

Anyone heard of it being more problematic in the stomach/duodenum?

Also when they printed off that report they printed off the Celiac and IBD panel (turns out it was the Prometheus ones someone mentioned above) Both said not consistent with either IBD or Celiac (yet again, were drawn while a week in to a prednisone pack, and having been following a gluten-free diet since February....I know I need a doctor to explain much of this but when I saw what it was they drew even I thought "duh..."

Anyways...

Patience is not my strong point. Can you tell? Especially when night was spent awake hurting because I tried a protein shake and smal amount of mashed potatoes. Seems liquids are still the only 'safe' thing at the moment....