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08-21-2012, 10:42 AM   #1
Mayflower537
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Latest round of testing

Well, I had my MRE this morning. It wasn't a terrible experience, by any means. I had to drink three cup-fulls of the contrast, which was not barium, but still gave me the runs like crazy. After I sat for awhile waiting for that to infiltrate my guts, the tech, who was super nice, took me back and had me change into scrubs. I guess that's their way of avoiding metal in clothing issues. Then she hooked up an IV and had me flip over onto my stomach for the test. I think being on my stomach eased any claustrophobia I might have felt, as I couldn't really see how enclosed I was. So I think that was actually a good thing. About half-way through the test, I felt like I needed to go to the loo, but managed not to soil myself. And at some point, the need to pee outweighed the other need, lol. I had to hold my breath a bunch of times. It wasn't too bad, and the test wasn't nearly as long as my doc's office said it would be. I was done by 9:30 (started drinking contrast about 8:10) and I was estimating 10:00 at the earliest based on what they had said. If it had been much longer, I'd have had to take a bathroom break. She said the oral contrast affects people in all possible ways: it gives some D, constipates others, and doesn't bother a lucky few at all.

Now I just feel kind of gross. Like a quarter of the way to nausea, and then there's the nice watery diarrhea. Although as strange as it sounds, I'm not that annoyed seeing as I have a scope on Thursday and probably this is helping jump-start the cleaning-out process. I had planned on taking it easy with food today anyway and eating low-res to make tomorrow's prepping as easy as possible.

I had night sweats the past two nights. The night before last, I thought it was fever-related b/c I had had a fever all that day and figured I sweated it out in the night. But last night, I can't account for as I didn't run a fever yesterday to my knowledge. At least I never felt feverish. It's really gross to wake up and be all damp. Yuck.

Alright well, my doc should have the MRI results today and I assume I'll hear about that on Thursday when I go in for my scope. They gave me a disc with pics on it, and I tried to look at but I think you need a special program to look at them. I have to give it to my GI, and I didn't want to mess around with it too much, b/c I'd probably end up screwing it up or something.

One down, one to go.
08-21-2012, 11:35 AM   #2
Cat-a-Tonic
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May, glad to hear it went okay (except for the d, yuck). I get night sweats when I flare too, and I never seem to have an actual fever. I check my temp repeatedly throughout the day in a flare and it's always normal or a little below normal (in the 97s) - but the second I fall asleep the sweat just starts pouring out of me! Once in a bad flare I kept running to the bathroom about every 15 minutes during the night, but I'd nod off for a few minutes in between potty trips, and I'd wake up with a layer of sweat just starting to form - even after only 5 or 10 minutes! So yeah, for me it's definitely a flare thing and apparently not related to having a fever.

I hope the prep and scope go well too! Good luck and keep us posted!
08-22-2012, 05:49 AM   #3
Mayflower537
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Yeah, normal for me is usually 97 something also.

Well let the liquid diet begin!
08-22-2012, 08:47 AM   #4
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Poor thing, I always loathe prep day. Clear liquid diets are a special kind of torture and it's no treat being stuck in the bathroom for hours either. I hope today goes by quickly and that tomorrow is a piece of cake! Hopefully with you being in a flare, or whatever it is, that they can find the cause of your issues and get you some lasting relief. I hope it's not IBD, but if it is, I hope it's mild and responds well to treatment and that you can join me in the remission club.
08-22-2012, 11:25 AM   #5
Mayflower537
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Yeah, I think it's actually tomorrow I'm dreading the most. Don't get me wrong, this day is no fun (esp when I get to feed kids all day), but tomorrow I have to sit around dehydrated and starving until 2:30 PM. At least last time it was first thing in the morning. So there was only one day of torture vs a day and a half.

And wednesday is a day from hell for us anyway - At 2:30 the kids have piano which lasts an hour, then I have to rush home for a few minutes, get my daughter to ballet at 5 which also lasts an hour and then rush home and feed them. I'm hoping that being so busy will distract from the gnawing hunger that is starting already.

I'm supposed to start drinking at 6 PM, but I can't start til we get home from ballet, which will be around 6:30. I'm guessing since I don't start drinking the prep until this evening, I'll be up all night pretty much anyway. Then I get to drink dose #2 at 6 in the morning. Woohoo! I better get some stuff up on my streaming Netflix queue that I feel like watching in between breaks. The good news is that the kids are both spending tonight out so I won't have to worry about messing with them in the morning or tonight. I have a feeling I'm going to be in a low-blood-sugar/dehydration terrible mood in the morning. Haha.

Thanks for the encouraging words.
08-22-2012, 06:46 PM   #6
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Okay, well, started drinking suprep at 6:25. Diluted to 16 oz with orange Gatorade and chugged it. It was not very pleasant tasting, but that wasn't really an expectation I had. Chased it with 32 oz water over an hour. Yuck. The grumbles started almost immediately, but bms started slightly over an hour after when I started drinking. There's some definite cramping going on. It doesn't seem too bad yet...I guess I'll try to stay as hydrated as possible at this point.
08-23-2012, 09:04 AM   #7
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How'd the second round of prep go this morning? Only 4ish hours now to go until your scope, hopefully you're still doing okay and not too dehydrated or anything. Did you find anything good on Netflix to keep your mind occupied while prepping? Hubby and I watched "Super 8" last night on Netflix, we liked it. Anyway, I hope all goes well today and that you're still doing okay. Best of luck!
08-23-2012, 01:01 PM   #8
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Actually I'm finished with everything, and it was all clear - the MRE and the scope. So unless the biopsies show something microscopic, it's going to be IBS and "eat fiber" for me and possibly more rifamaxin. LOL. They took me two hours early b/c there was a cancellation, so that worked out.

It crossed my mind at the time, and now I am thinking I should have insisted on waiting on the scope until after the MRI came back. I think that's the downside to having a doctor with an endoscopy suite attached to the office: They are probably scope-happy. Not that I'm not glad he was trying to be thorough, if that's what he was doing, but still makes me wonder...No polyps this time, so I guess that's good, even though they weren't the bad kind anyway.

I remember Super 8 being somewhat amusing. We ended up watching Arrested Development. That's been our summertime show, while the few shows we watch are on hiatus until fall.

The prep was more disgusting this morning. I mixed it with water, and felt a bit nauseous for awhile - thankfully that passed and I didn't hurl. But as far as the pooping part, it didn't seem anywhere near as violent as the pill prep. I had to go a lot, don't get me wrong, but it would seem to significantly slow down and almost stop after about 3-4 hours. I slept from 11 to 6 this morning and didn't have to wake up once. I was shocked about that. And by the time of the scope, it was water clear. Like hardly yellow at all. So I'm guessing it did a good job. I have internal hemmies (still), and that's basically the only thing abnormal they saw I guess.

So now I get to wait on biopsies.
08-24-2012, 04:05 PM   #9
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If they do tell you to "eat fiber", honestly you might want to give psyllium a try. I do apparently have IBD and psyllium has worked wonderfully for me - and I only take 1 teaspoon a day. Insoluble fiber is still problematic for me, but soluble fiber such as psyllium and oatmeal have done good stuff for my bowels.

I hope you don't get stuck with more Rifamaxin/Xifaxan though, isn't that stuff quite expensive and may or may not have worked for you? (Sorry, my memory is crap lately!)

Good luck with the biopsies, and keep us posted on what they find, if anything. I hope the scope wasn't a total waste of time, but I don't want you to have IBD either!
08-24-2012, 10:23 PM   #10
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Yes, "high fiber diet" is one of my three recommendations. Ha. And I totally bought psyllium husks today. I perused through that thread but never saw the amount. Bc I took a tablespoon earlier in water and it was nasty. I think I'll try 1 tsp in juice and see how that goes.

Xifaxan is expensive. It worked for almost a year, though. I guess I shouldn't assume anything until my follow-up.
08-27-2012, 05:08 PM   #11
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What kind of psyllium did you get? I just buy the Whole Foods store brand (I think it's called 365 everyday) organic 100% psyllium husks, and the taste is fine. It doesn't really taste like anything, certainly not nasty like you described. Did you get a flavored kind? I haven't tried the flavored psyllium myself but I would imagine it can't be very good. I just mix my unflavored psyllium with plain water and it's fine, no real taste at all. You can mix it into food too - it bulks things up so some people add it to watery foods. Personally I don't add it to food, as I take Asacol 3x per day with meals, and you're not supposed to take psyllium at the same time you take meds. So I just drink it mixed into a glass of water in between meals.

When is your follow-up? How long until you get the biopsy results back?
08-27-2012, 09:57 PM   #12
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I guess it wasn't the taste so much as the texture. Sometimes funky textures trigger my gag reflex. It doesn't have any flavor. It's the organic one from the Vitamin Shoppe.

No follow-up scheduled that I know of. They usually send me a letter which gives me a general idea of results from pathology, after which I promptly request a copy of my results. I'm assuming that any appointment info will also be in the letter. If not I can always call. I'm expecting to hear some thing by early next week at the latest. Not expecting anything to show up. This has been going on really since I was a teen. It just got significantly worse in adulthood. Shouldn't something have shown up by now?
08-28-2012, 04:19 PM   #13
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Logically it would seem like something should have shown up by now, but in my experience that isn't realistically always the case. I think I've mentioned my aunt before, she had symptoms for like 30 years before getting diagnosed with IBD and then it took another few years after that for her to get diagnosed with Crohn's. She underwent many tests over the years and nothing showed up for the longest time - she told me she thinks that sometimes you just have to wait for enough scar tissue to build that it shows up on a scope. I've only been actively ill for about 3 years now, although I've had a sensitive stomach and issues with certain foods, etc for pretty much my whole life, so in a sense I would think that something would have shown up on one of my tests by now too. I hope I don't take after my aunt - she is not related by blood, but by marriage, so hopefully it won't take me 30 years to get diagnosed! I hope that's not the case for you either. But I guess my long and rambly point is that sometimes it takes a long time, even when you've had symptoms for years. Modern medicine can still only do so much, it seems.

As for the psyllium thing, are you drinking it right away after adding it to water, or do you let it sit for a bit first? That will change the texture - drinking it right away means it hasn't soaked up much water yet so it'll still be kind of hard and can scratch your throat. If you let it sit in a glass of water for 10 minutes or so, it'll soak up some water and get mushier. I prefer that myself, it goes down much easier, but I'm not sure which one would be better for you texture-wise. Maybe you should try mixing it into food and see if that works better for you with regards to the texture. Add it to a watery sauce and it'll thicken it up nicely, that's what I'd try.

How are you doing today? Still feeling like you're in a flare, or are you doing better?
08-28-2012, 06:02 PM   #14
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I still have loose bowels and some cramps in the morning. I haven't had a severe bout since that night attack. So I dunno. I thought maybe the cleanout from the prep would give me a fresh start, but by the next day or so I was back to "normal."

I remember your telling me about your aunt. 30 years is crazy long! It's just so strange, this IBD thing, and how some people are symptom-less and have so much evidence of disease that it's a wonder they aren't hospitalized, and others have all the symptoms and no evidence that a doc feels comfortable diagnosing with. Oh well. I think if I would have known all the mental stress this dx process was going to give me (and all the invasive testing), I'd have never gone to the doc in the first place. It hasn't really gotten me anywhere, and I'm not really worse off. I just thought, "oh I have a dodgy gut," and life was not so bad.

I have been drinking it within a couple of minutes, so maybe I'll try waiting a little longer. I put it in my cream of wheat this morning. Maybe I'll start having oatmeal or something on a regular basis, and can add it to that. I didn't notice it at all in the food.

Thanks for the tips.
08-29-2012, 01:15 PM   #15
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Personally I'm kind of afraid to add psyllium to my oatmeal - they're both high in fiber and I don't want to overdo it in one go. Particularly after I learned how easy it is to overdo psyllium (I once took 2 teaspoons instead of my usual one teaspoon, and I ended up feeling horrible with massive amounts of bloating and crampy pain). I did add it to mac & cheese once and I could taste it then - it made everything too thick and gloppy, it was kind of gross. I haven't added it to many foods but there seem to be some things that work well with psyllium and some that definitely don't work.

And yes, my aunt's story seems to be the exception and not the rule (although I have read that 10 years is about the average time it takes for IBD to get diagnosed, so I guess for every few people who get diagnosed immediately, there's a person like my aunt to even out the average). It is really weird how some people have few symptoms but obvious IBD, whereas people like us in the club mainly seem to have a lot of symptoms but few diagnostic signs, if any, of illness. And so many doctors don't seem to "get it" that symptoms and inflammation don't necessarily match up - just because my colon looks fine, that doesn't mean I feel fine. Anyway, I'm getting off track now. I hope the added fiber helps - have you noticed any difference since starting the psyllium?
08-29-2012, 04:24 PM   #16
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It's possible that it is helping. I went once yesterday and twice today, and normal as of recently had been 3-5. So if that keeps up then I'll probably give the psyllium credit. Are u supposed to avoid taking supplements with psyllium also or just meds? I had been spacing them out and wasn't sure if that was necessary.

Oatmeal+psyllium this morning wasn't a problem, but I am definitely not as sensitive food-wise as a lot of ppl on CF. Another reason I've questioned IBD in my case...

I've emailed this naturopath who wants me to do an elimination diet of the seven foods that are most likely irritants/allergens etc. I was complaining abt how I've never been able to pinpoint my triggers. Nothing ever consistently sets me off. She said that the gut environment is very dynamic and so an elimination diet really helps identify foods that are causing the issues. Of couse I read the list of the seven and it would mean sacrificing all joy in life as far as eating is concerned lol. She uses this cleanse to do it but I think I'd try it on my own bc it's pretty expensive, the cleanse, I mean. Anyway, I guess I'll see where I get with GI man and go from there. No bx results yet.
08-31-2012, 11:52 AM   #17
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Psyllium definitely helped me cut down on the # of BMs I have daily. I had been having anywhere from 4 to 10+ daily, and on psyllium it's more like 2 to 4 per day. A definite and wonderful improvement for sure! As for supplements, I think yes, you are supposed to avoid taking them around the same time as psyllium. I take my supplements with meals, at the same time I take my Asacol, and I take my psyllium in between meals. Psyllium can supposedly interfere with medication absorption, so I don't know for sure but it seems logical that it could interfere with supplement absorption too.

What foods do the naturopath want you to cut out? I'm going to guess dairy, wheat, red meat, eggs? Soy? Corn? Not sure what else? As I'm sure you know, I've been pressured by my family to give up gluten as they've all convinced themselves that they (and I) have celiac. I have given up a lot of the foods I love (I seriously miss coconut and peanut butter and spicy pad thai!) but I refuse to give up gluten. It doesn't trigger me, I don't have celiac, and gluten is in everything! I think I would starve to death if I didn't have my sandwiches and pasta, ha ha. My mother's argument is that there's gluten-free alternatives to most everything now - but my counter-argument there is that so many GF things contain stuff that does trigger me, like corn or coconut to replace the wheat. I'm rambling again but long story short, I don't blame you for not wanting to give up the foods you love. I am in the same boat and I refuse to give up any more than what I already have given up!
09-02-2012, 08:03 PM   #18
Mayflower537
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Here is her email:

"At some point you will have to do the cleanse (or a program like it) and rule out food sensitivities. The sensitive 7 usually take care of most digestive issues..sometimes need to follow-up with a food panel and/or digestive stool analysis. Most people with chronic digestive issues will never find anything "wrong" at their GI Dr. Very common for episodes to wax and wane and for people to have trouble identifying what foods are problematic--major part of food sensitivities is about the integrity/health of a person's gut lining, which can change from day to day, leaving people confused. Again, it is why you have to do a full elimination diet, like the cleanse, allowing lining to heal. The good news about all of this is food sensitivities can be healed over time--not a lifelong issue for most."

So that's the email. The sensitive 7 are: Eggs, Dairy, Gluten, Soy, Corn, Peanuts, Sugar.

Sounds horrible, right? Ugh. I remember going into a near panic when I thought milk or eggs was the culprit. The problem with corn and soy is that they are in EVERYTHING. I have a friend with really bad allergies who has been put on some sort of diet where she has to cut out all that stuff too, and she says it's so hard to find things that are "safe."

Yes, I remember your mom saying to get rid of the gluten. Surprised she hasn't given up on that. But I am knowing more and more people who are giving it up for unknown reasons (unknown to me, that is). I think it's being touted as a very healthy way to eat. I can't tell if it actually is, or if it's some sort of fad. Seems like every one has their own angle as to which is the healthiest way to eat.

And I've been taking the psyllium between meals so that's good. Unless I had it with oatmeal, that is. But that was once.

Okay, so I hope I get my bx results here in the next few days. So I can quit wondering what they showed or didn't show.
09-05-2012, 08:42 AM   #19
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So a research nurse from my doc's office called yesterday and left a message saying that I was eligible for a couple of studies. I knew that meant bx were normal. I talked to her this morning, and she confirmed my suspicions. He told her yesterday. Anyway, so he really thinks I have IBS now. I don't know what to think. Today and yesterday, I passed straight mucous, which has never really happened before.

Anyway, the studies...one is for this drug not yet on the market called MuDelta. It's an opioid-like medication that is supposed to be non-systemic, but since my pain is acute and not chronic and I have had issues with opioids in the past, I opted out of that one. I'm going to participate in the Rifaximin study and see if it helps again. I've taken it before and it worked, and it's expensive and this means I can get it for free (I'm assuming). She'll follow my progress and see when I relapse. So hopefully it'll work for a third time, and these weird bms will stop.
09-14-2012, 07:00 PM   #20
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So are you happy that it might be IBS or might be food sensitivities? (not that you will ever be happy being diagnosed with something)...but you know what I mean. It sounds like if you do have food sensitivities that the prognosis sounds a lot better then if it were something more severe.
09-16-2012, 09:18 PM   #21
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Yes, I'm relieved that Crohn's wasn't found. Whatever I have, I have, and have had for a long time. So whatever this is, be it IBS or food sensitivities or whatever, if it can be fixed then bring on the treatment. I think that's why people are relieved to have a dx: They're not "glad" they have a disease or whatever condition, they're glad to finally know what they're up against. Putting a name to the problem generally means treatment options.
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