Undiagnosed Club Support Group

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

cat -- could be Reynaud's ... I've definitely wondered, but it's one of those things that I never think to ask the doctors about because there's always something more urgent I'm worried about, you know? I think you might be onto something with the migraine theory though ... I do get headaches that my primary care doctor says "sound like migraines". (I think we may have actually talked about migraines a while back, come to think of it.)

chickadee -- I had a blood test done last week at the GI's office to check for inflammation and CBC. I didn't get a call, so I think I'm probably okay? I don't think they did a metabolic panel though, so if there's a protein thing or something like that going on they wouldn't have caught it.

akiva -- hang in there! I find taking a (short, very close to home) walk can really help get things moving. If it's any consolation, I'll be doing prep tomorrow, so, uh, solidarity?
 
BN-- I'd suggest calling and checking on your blood test results. Sometimes things fall through the cracks.

Akiva-- Sometimes it does take a little while for things to get moving. I would NOT suggest walking outside of your house/flat though. Once you need to go, it will be an urgent situation. Try moving around near the bathroom. Also, drink other clear fluids.
 
Things are moving, Chickadee, you were right, it was an urgent matter, glad I didn't have3 flights of stairs to run up on the way back. Just had a gentle walk up and down my flats corridor/hallway from my lounge to my bedroom, soon got things moving. Im impressed and disgusted by this prep. it has me wanting to hurl, its foul, but when things are processed at the other end so far ive had no burning. although pretty bad tummy ache, but I think that's more related to the sheer quantity of liquid. ive been peeing for England too, but that's probably cos each mouthful of prep is being chased by another drink (currently lucozade energy which is apparently ok, checked with my mate who works in endoscopy, its a yellowy see through colour)
Tomorrow I will be chasing with something else, as I have run out of lucozade and lime cordial, so unless I can persuade my beloved to go to the shop at 6am (no way on earth, its 1am now and hes only just gone to bed) then im going to have to improvise and use 7up free or something, maybe black tea? not sure what time to start the mornings prep. its 1am now and im still taking tonights dose, I started HOURS ago, but I feel so sick Ive just been going as quick as I can.
Im really tired but got a feeling im not going to get much sleep, ill need to be up at least an hour before I start taking it again, its too sickly for straight away; id definitely hurl.
Love to you all, thank you so much for helping me through this, I think I may have given up if it weren't for the replies xxx
 
Akiva, just checking in to say I hope you're doing okay and hope the scope goes okay.

I'm in Bermuda :D ldn is working great, and long story short my GI has written to my doctor to say I have crohns. I've not spoken to a doctor about this though, so I'm not taking it as fact just yet. I might be graduating :S
 
Isgs-- Good news? Kinda? At any rate, you're in Bermuda, which may be my favorite place ever. Enjoy!

akiva-- Good luck tomorrow! Just think, all of this will be over in about 12 hours (not sure what time you have your scope).
 
Akiva, hope you're doing ok today. I remember when I did my test and prep. I didn't sleep much and I had watery spurts the next morning, even when I arrived at the doctor's office. It's no fun. :( But it's over pretty quick once you get there. The nurses were really nice to me before the test too. I appreciated that.

lsgs - Have fun in Bermuda! I've never been, it must be warm there now I assume? It's actually pretty warm here in Savannah. It's going to the upper 70's this week!

I'm on day two of the antibiotics. It's too early to say anything for sure about it. But my bm today was normal, small and formed! I had less gas last night at bedtime also, so good signs so far!
 
Chickadee, my GI won't give me a Crohn's med because he doesn't believe I have Crohn's. :( I thought it might be something worth trying but he wasn't having it. He's still convinced it's IBS. He thinks as long I as I can take stuff to go regularly and eat my super restricted diet and keep the pain level down everything will be fine. I asked about if I go into another flare like last summer and he says he doesn't think it was a flare, just IBS irritation and shouldn't happen again if I stick to the diet. Grr...
He also told me to drink some Ensure to add calories as he could see I was too thin and said, "Don't lose any more weight!" Duh. Like I'm trying.
 
So... brand new and first post. October 29, 2013, diagnosed with peri-rectal abscess, which was drained. November 26, 2013, had fistula surgery with insertion of a Seton. This week, December 3, 2013, had a follow up visit where the colorectal sx told me that I had polyps, which were removed and non-cancerous, as well as multiple fistulae, all of which necessitates IBD work up. I had Prometheus blood test on 12/3, and will be going for colonoscopy in about 3-4 weeks. What a great Christmas! I guess I'm putting this history out there for advice. I have a Seton, which is just miserable at this point in time. I'm having a hard time sitting and wearing anything but sweat pants. I'm an attorney, so sweat pants in Court are a bit of a problem. Anyone out there with a similar history that can give me some hope that this gets better would be great.
 
Hi ey218, welcome to the forum. I don't have any experience with setons nor abscesses/fistulas myself. I'm going to copy what you wrote and post it in the Fistulas, Fissures, and Abscesses section of the forum, as I'd imagine you will get better answers in that section.
 
Thanks. I just saw that there is a group for that. However, as I'm undiagnosed, I thought maybe I'd start here. I'll take a look at the other forum.
 
Hello and welcome, ey218. Sounds like you have a lot going on! Hopefully with your upcoming tests you will get a diagnosis soon. It seems with all your symptoms and manifestations they'd have to have some idea of what's going on. I just looked up the Seton and I must say that sounds so uncomfortable. How long do you have to have that?
 
Less than three hours until it's time for round one of Colyte. Anyone know if it's okay to mix this stuff with something other than water? Mine didn't come with any flavoring packet and I still have time for a run to the store to get something with flavor strong enough to kill the taste, which I've heard is pretty terrible. (I used SuPrep last time and in addition to not requiring as much liquid, the taste was only moderately awful. Then again, I *am* an alcoholic in recovery, so I've spent a lot of time drinking things that taste awful. Might be a matter of perspective.)

I joked about making "Team Colonoscopy" shirts for my bf and I for the last scope 3 months ago and never did do it...maybe this is a sign I really should have made them. Muahaha.

I probably won't have the time/energy/inclination to make shirts between dashes to the toilet tonight though, so I've devised an alternative plan: I'm going to grab a Sharpie and write a note to my doctor on my butt. Or maybe just draw a smiley face.

Colonoscopy? More like COLONOSCO-PARTY.

UGH.

I swear, every time I have a procedure or heck, just an appointment, I start second-guessing everything and wondering if there's really anything wrong at all. Maybe I haven't seen blood and it's just food coloring. And maybe the dizziness thing happened all my life, I just started noticing. Maybe I've always been in pain in my stomach in one way or another every day.

Then again, when I actually see the whatever-the-heck-turns-the-toilet-water-pink, when I take my temperature and see it's over 99.5 for the third day in a row for no apparent reason, when I wake up with my clothes and sheets damp from sweating, when I can't go to the bathroom for four days straight, when my lung pops, when whatever gives me the mottled veiny skin/livedo reticularis kicks into overdrive and I look like my skin's practically polka-dotted, when I notice how cuts never actually heal and just turn into permanent welts/skin lesions, when I get these spider veins erupting on my legs so quickly you can actually see them getting worse by the day, when my chest starts buzzing, when I almost pass out and stop comprehending speech ... well, yeah. Something's up. I don't know if another camera up my butt will help elucidate it, but hell if I won't try.

chickadee -- I asked about my labs when I called to verify my scope this morning. All normal.

akiva -- glad chickadee thought to mention not taking the walk outdoors, haha. It's amazing how fast I forgot that there's an ocean of difference between "getting things moving" for, say, a dose of miralax, and a liter or two of colonoscopy prep. Hope the procedure went well and that you're feeling better.



Oh, here's a picture of the weird stripes in my fingernails. Easiest to see on the index finger .... it's hard to see but there's definitely some color banding going on.

ogm98j.jpg


Anyone know what that is? I'll have plenty of quality Google time tonight .... sigh. Hahaha.
 
Bureaucratic, I *think* I've heard that you can add something like Crystal Lite lemonade mix (not pink lemonade obviously) to most preps. I'm not sure if you can add it to all preps - might be best to call the colonoscopy clinic and see what they have to say about it.

As for your nails, they actually look very similar to my nails - I get weird bands of color like that too. Sometimes it's not very noticeable and other times (like right now) it's pretty significant. I'll try to take a photo of my nails tonight and will post it for comparison.

You mentioned weird vein stuff too - does your skin seem almost translucent in places, like you can see all the veins fairly easily? I have that going on and I've heard others on the forum mention it too.

Oh, and I also experience that same thing with wounds taking forever to heal or not healing properly! Anything more than a papercut and it seems to take months or even years to completely fade. I swear I squeezed a zit on my chin about 2 years ago and you can still see it.

Anyway, good luck with the prep tonight. Your t-shirts/drawing on your booty idea is hilarious, too! I think the drawing idea will likely work better - at my last scope, I was only allowed to wear my own socks & slippers, I had to take off all my other clothes and wear an ugly hospital robe. Now, you said you make your own clothes, so if you could whip up a homemade hospital gown on the quick, you could maybe fabric-paint a funny message to the front. :p But I don't think a t-shirt would be allowed, they'd probably make you take it off as it's a gown-only type of affair. So if it were me, I'd come up with something clever to draw. Anyway, good luck and keep us posted!
 
Interesting comparisons here - I also have the dark purple banding across my fingernails. Mine is a bit lower on the nail, just above the white half-moon shape at the bottom.
I also have the pale, translucent skin that shows vein tracery through, and cuts and injuries that heal slowly and show traces years later even if they are small injuries.
Strange that we all have similar things like this and we can't all get one diagnosis!

I think you should write "Colonosco-PARTY!" on your butt with the Sharpie! IMagine the doc's face.... :D
 
Well today was interesting...
only managed 2 -2.5 sachets of the 4 but luckily it was enough.
The report on the piece of paper I was give on discharge doesn't sound too promising though :(
Bowel Preparation with Klean-Prep was satisfactory
The colonoscope was inserted via the anus to the caecum, which was identified positively by the ileocecal vave
the examination to the point of insertion was normal.

Follow up - Awaiting pathology

Advice/comments - normal colon but random biopsies taken to exclude microscopic colitis

Writing/drawing on your bottom would be hilarious :)
 
cat/mccindy ... spooky. I've got the translucent skin thing going on too, on top -- or more literally underneath -- the purple mottled livedo business. Maybe all three of us have the same bizarre thing going on and no one's come up with a name for it yet? I've started wondering if maybe it's a circulation/blood vein-related thing with me and the GI aspect is just part of the picture. My migraines only happen when I've been lying down for too long -- like oversleeping or lying in a hospital cot.

akiva -- as far as scope results go, it ain't over 'til the fat lady .. uh, biopsy report? ... sings. Microscopic colitis is still quite possible. Sometimes the biopsies show other stuff that can help make sense of things too -- cells in the colon you don't find there typically or in numbers you don't usually see, stuff like that.


I'm about half an hour into prep now and have downed three 8 ounce glasses of the colyte prep. Starting to get pretty gnarly cramping, so I think it's off to the races soon. Lucky me!
 
I also have very translucent skin.

akiva-- On the one hand, I'm glad the colonoscopy went well, but I know how frustrating it is to go through that and not get any answers. :/

Good luck, BN! I had Colyte for my last prep.
 
It was really painful at times. Apparently my heart rate went above 200 at one point. I got them to stop at that point for a minute just to get my breath back
 
Thank god mine (I think) involves twilight sedation again. I'm pretty sensitive to that stuff so it tends to knock me out pretty good.

Let's just say I could use a little sedation. This prep actually wasn't bad at all -- got all four liters down without much fuss and managed a lot of liquid on top of it. The downside? Despite avoiding wiping more often than necessary *and* mostly using baby wipes, my bum burns SO BADLY RIGHT NOW. SWEET MOTHER OF MIRALAX IT'S ON FIRE.
 
Sweet mother of Miralax!:rof:

Sorry, bureaucratic, and also Akiva! You poor people. I hate to hear what you're going through.

My day is starting off rough too.... woke up with some RLQ pain and now I'm so nauseated. My staff is making toast and the smell making me feel really sick. I had to stop drinking my tea for fear I'd thow up. Last night when I was eating dinner I felt sick too and I had to force myself to finish most of it. It's getting kind of old to have to force myself to eat, and makes it pretty tough to not lose weight. :frown:
 
McCindy,

I am told the Seton has to be in place for about 3 months or until the abscess heals. My wife and I have a vacation to Hawaii planned for February. After all that I've been through over the last two months, I'm going on this vacation! Hopefully, I'll have an answer by that time as to what is causing all of this, as I will have had the full IBD workup at that point. However, reading many of the posts here, I'm less then optimistic about that prospect.
 
oh, goodness. That is a long time. Hopefully it's out and fully healed by the time you go to Hawaii! I've never been but I'd love to go sometime. I have a cousin who lives there, and she just loves it.
Yeah, it is a bummer to hope for diagnosis and not get one. There are quite a few who do, however, so you could be one of the lucky ones! A good positive colonoscopy could be the key. I'll keep my fingers crossed for you!
 
Bureaucratic, I realize I'm late to the game, but for "ring sting"/anal pain from going and going and going, did you try any creams? (You mentioned wet wipes but not creams.) When I first joined the forum, others were raving about this booty cream called Calmoseptine, so I decided to try it. It's a little hard to find - you can get it on Amazon and they also carry it at some Walgreens (they usually keep it behind the pharmacy counter so you'll have to ask the pharmacist for it). It's wonderful! It's mentholated or something, it feels minty and cooling and soothing. I've been using Calmoseptine ever since, I make sure to always have a tube in my purse and a tube at home. Anyway, you're probably done with the prep & scope by now, but for future referrence, or if things are still feeling sore back there, you may want to invest in a tube of soothing cream such as that, because it's been a lifesaver for me.

And on the subject of your prep & scope, I hope the rest of prep and the scope went well and that you're home resting now. I also hope you get some worthwhile results from this - at the very least, I would hope they find the source of your bleeding! Presumably they took lots of biopsies too? Give us an update when you're able to. Oh, and let us know what you did, if you drew on your backside or what! And what your doctor's reaction was if you can remember it! :p

Oh, Cindy, food smells at work are the worst when you're feeling nauseous, I know that feeling so well and it's awful! A couple days ago at work, somebody apparently purchased and brought back to the office some take-out food that was heavily deep-fried, and the whole building smelled like disgusting fried food. Fried food of any type is one of my triggers both for GERD and for my IBD or whatever it is, and the smell of it just makes me feel sick even if I felt okay before smelling it. It was so hideous and the smell permeated a large area of the floor I work on, ugh! Sometimes I admittedly eat at my desk, especially if I've spent my lunch hour in the gym then I'll eat at my desk afterwards. But I try to not eat things that smell too strongly - for one thing strong smells make me feel ill, and I don't want to inflict that on my co-workers either as it's just common courtesy. That fried food smell though, it was just the worst.

Akiva, oh my goodness, that's awful that your colonoscopy was painful and that you remember parts of it! :( What kind of sedation did they give you? I've heard that they give different sedation in the UK than in the US but I'm not sure what they typically give in the UK. I've had 4 scopes now (2 colonoscopies and 2 upper endoscopies), and each time I got a combo of Versed (sedative) and Fentanyl )(pain med) - at least once they gave me Benadryl along with those 2. The Versed & Fentanyl combo has always worked great for me. Sometimes it works too well - after my first upper endoscopy, my GI supposedly came out and talked to me and hubby afterwards, and I supposedly seemed lucid, but I have absolutely no memory of talking to my GI! I have vague snippets of memory of getting dressed and being driven home, and once I got home I complained to hubby that my GI didn't talk to me after the procedure. Hubby was like, are you kidding? He talked to you for awhile and you seemed coherent, how can you not remember that?
 
I also usually eat at my desk. Since I usually have rice or chicken I'm not too worried about strong smells. Ugh I know what you mean about the fried smell.. one of the techs today brought in some frozen fried egg roll something and heated it in the microwave.... made me feel sick right after I ate my rice. Still having the unsettled feeling. Fried food almost always makes me sick, even smelling it is nauseating. Oil is icky when combined with breading of some kind! :p
 
Fried food makes me feel ill too
I had 5mg of midazolam and 50mg of pethidine
ive realised I must have been out of it at some point, ive got a bruise on my arm that I didn't have before the procedure (its the kind you get from the bp cuff if it pinches your skin) which is slightly worrying lol
 
Well I'm trying to be patient with the Xifaxan. It's a 2 week course of antibiotics. Last night I had the worst reflux I can remember. It burned my throat. My stomach feels irritated all day. I'm trying regular strength Zantac, not much help. I may double up and take 150 mg tonight if I need to. I'm also eating very low fat to see it that helps.
 
Well wouldn't ya know? Turns out getting a second camera shoved up your bum three months after the first one wasn't a ridiculous idea.

Doc took a bunch of biopsies, but long story short, I have colitis of some sort right now. Whether it's infectious (unlikely given the time frame), IBD or something else depends on what they see under the microscope. Anyway, he found inflammation (I think the terms used were either inflammation and edema or erythema and edema) in the sigmoid colon ... which would explain a *lot* of the problems I've had of late for sure, most especially the blood.

So the one question that's been giving me trouble for about a year -- the one issue that's freaked me out and made me stress out about all the other little things that I'd otherwise ignore or not even notice -- finally has an answer!

:poop: :mario2: :poop:
Someone finally figured out why my bum's been bleeding!!
:poop: :mario2: :poop:

I was still pretty loopy when I talked to my doctor, but I do remember he said he didn't see any other inflamed areas so if it's IBD, it's probably UC and not Crohn's (he didn't mention how likely IBD was though). He did say the biopsies will be important but not something to stress about -- whatever's there, it's benign. (It took me a while to realize he met benign in the literal, medical sense, as in non-malignant. At first I thought he meant benign like it's sometimes used in casual conversation to imply "totally harmless" and I was like ... um, totally harmless things don't make you bleed, do they? Lesson learned: I need to stop misusing medical terms in normal conversations, lol.)

Sadly, I totally bailed on the message on the butt. Prep got kind of gnarly toward the end and I ran out of time -- but my prep was "excellent" according to the doc, so that's a positive. The overachieving student in me ALWAYS likes praise ... even from the guy who just spent way too much time way too close to my anus.
 
BN-- Really glad to hear that you may be getting a diagnosis and helpful treatment! I'm sure that's very validating!

Mccindy-- Have you thought about seeing a different GI and asking about Crohn's meds? Is there any chance that your anti-seizure meds are causing or contributing to your GI troubles?
 
Unfortunately taking the xifaxan is making me worse. I've had D last night and this morning. I called the on call doctor and she put me on flagyl in case i have c. diff. I'm off xifaxan now and on flagyl for the next 10 days. I'm hoping the side effects aren't going to be too bad.
 
Moogle-- Sorry to hear that! Xifaxan (two rounds) didn't help me, but I didn't have negative effects. I'd suggest also taking saccharomyces boulardii (probiotic) as this specific one has research studies proving its helpfulness in relation to C Diff.
 
Chickadee, that's what my mom asked me on Saturday. She thinks I should see a different GI as well. I'm torn because I know it's important, but I'm also trying to get in touch with my neuro oncologist about some head stuff I've had going on. I'm running out of time because our insurance is changing and to see a new GI I won't be able to get in until after the 1st of the year and our new deductible is $5,000. So I might try to keep plugging along until after April when I have my MRI and EEG and see my NO, all of that will eat the deductible and then anything else I do will be covered.

As far as the Keppra, I don't think it has much to do with the GI - it's not supposed to have any GI side effects. I had a lot of the troubles I'm having now before I started taking it. It does cause decreased appetite. However, brain tumors and brain cancer CAN have GI effects. So I don't know how much could be coming from my head in addition to all my normal GI stuff.

Cat - I found some pysllium husks, and started taking them this weekend. So far, not much has changed, except at least I know I'm not taking the fillers and additives in the fiber tablets I was taking. :) I had D on Saturday morning, and now haven't gone since. :(
 
Has anyone had oral thrush? I have some white stuff on my mouth and I think that's what it is. I just picked up florastor probiotic but it says not to use with anti-fungal medicine. Ugh, that's so frustrating. I may drink Kefir until the thrush is gone, then take the Florastor.
 
Moogle -- I do know more than I'd care to about thrush, I'm afraid. (About four or five years ago, I had lady issue that took an entire year to clear up even with treatment. It finally subsided, but only after I managed to get vaginosis AND a UTI on top of it. They basically bombed me with meds. Fun fun fun.)

Are the meds you're taking right now antibiotics, antifungals or a combination of both?

Antibiotics always up the risk of thrush, which I bet you know since you're looking into probiotics. If there are antifungals in the mix already, thrush (oral or elsewhere) is less likely but still a possibility if the med doesn't cover the candida part of the fungal spectrum.

I have no basis but my own anecdote for this, so take it with a huge grain of salt, but at least for my body, yeast issues seem to be more of a red flag than a self-contained problem. If I've got a yeast infection that doesn't go away and not come back with a dose or two of Diflucan, something else is probably going on. In my case, my immune system was probably just generally out of whack (because it's pretty odd I think to get a bacterial and yeast overgrowth at the same time, let alone a UTI.)
 
I haven't had oral thrush but I've had a number of yeast infections. And the only time I've had yeast infections is when I was on antibiotics! Sadly, I am prone to recurrent UTIs, and fairly often the antibiotics to cure the UTI will in turn cause me a yeast infection. So yeah, I go from discomfort in the lady parts to a different kind of discomfort in the lady parts. :p It's not fun!

Cindy, give the psyllium a couple weeks to work. I seem to recall that it took me a couple weeks to notice a difference. I'm glad you found some psyllium and can at least avoid all that filler stuff, and I hope it helps!

Bureaucratic, wow, congrats and condolences on being so close to diagnosis! Sounds like you're just waiting on biopsy results to confirm - have your doctors come up with a treatment plan as of yet? As for the likelihood of it being UC vs Crohn's - I've read that UC tends to be the most severe at the rectum, and the inflammation lessens fairly uniformly as you go up the colon towards the small intestine. And of course UC doesn't have a skip pattern whereas Crohn's does, so if UC was mentioned then it seems fairly likely to me that that's what it probably is. And in a way that's good news - UC responds to certain treatments like the mesalamine (5-ASA) drugs much better. Crohn's can affect the entire thickness of the bowel, but UC only affects the innermost lining, so topical medications like mesalamine drugs work much better on UC than on Crohn's. Plus, there is a "cure" for UC - if you can call it that. Since UC is relegated to the colon only, if you remove the colon (and create either a j-pouch or an ostomy) then you remove the illness and are, in a way, "cured." Not ideal obviously! Anyway, I'm rambling - keep us posted on what those biopsy results say and what treatment you and your docs decide on!

Chickadee, have you started on the Gastrocrom yet? If so, how's it working? I asked my GI to look at my biopsies for mast cells, and he hasn't said anything, so I presume I'm negative for ME (I'm going to ask him about it again at my next appt in February just to be sure).

Akiva, how are you doing, did you get your biopsy results back yet? Is there any plan for you to have further tests - have you had anything like the pill cam or MRE (MRI-enterography) done yet?

How's everybody doing today? I'm okay, my joints aren't loving this frigid cold snowy weather, and the impending holidays are stressing me out, but otherwise I'm okay. Guts have thankfully been pretty quiet the past few days.
 
Bureaucratic, my sister has colitis and they put her on Azacol. She's gotten so much relief from it, she can eat fairly normally and doesn't have nearly as much pain as she used to. She thinks that stuff is a miracle drug.
 
Cindy, I'm guessing your sister is on Asacol HD? I was on regular Asacol for 2 years, and it was a miracle for me too - kept me in remission that whole time. Then they stopped making regular Asacol (they still make Asacol HD though), and that's when I fell out of remission. I tried several other meds in the mesalamine family but none have been as good for me as Asacol was. I miss that stuff! HD didn't work for me because I couldn't break down the pills. Regular Asacol, I was taking 6 pills a day and would pass 1 to 2 of them undigested every day, but I was still getting enough of my medication that I was able to stay in remission. HD, I tried it for a short time - I was only taking 2 big pills a day, and I was still passing 1 to 2 pills undigested every day! So obviously that didn't work out. I tried Delzicol too which is basically an Asacol tablet inside of a capsule, which made it even harder for my body to break it down. Now I'm on Pentasa, which is a capsule and seems to break down much better, but it works more on the small intestine and I think I must need more medicine in my colon or something like that, as I still feel just so-so on Pentasa and am not back in remission yet. Anyway, yes, Asacol worked great and I wish they still made the regular non-HD type of Asacol!
 
hey,
Not heard anything about biopsies yet, I think they said 10-14 days. Once Ive had that I think ill get a clinic appointment (it was supposed to be 3 months from the last one) which is January. When im at clinic we will discuss more testing options.
 
Akiva, I hope the biopsy results and the appointment get you somewhere useful. How is your work/school going? You're training to be a nurse, correct? I am always pleased to hear when people on the forum go into or are in the medical field - I am sure, that having so much experience with being ill yourself, that you'll be a wonderful and compassionate nurse. :)

I meant to talk about this in an earlier post - Bureaucratic, about the whole "benign" thing. I agree, it really is a tricky word! I have benign tumors on my liver, four of them - focal nodular hyperplasias, to be exact. I was told that they may cause me symptoms (they currently don't as far as I can tell), that they are growing and will likely need to be removed. My medical file says "chronic liver disease" which sounds terribly frightening to me, more frightening than "benign tumors" (although that one is scary too). The only thing that makes them not malignant is, they won't spread and they won't kill me. But they're growing and my liver is diseased and they may cause me symptoms - yeah, that doesn't exactly sound "benign" - something "benign" should be truly trouble-free, but medically it just means it's not cancer, it's something other than "terminal." Someday I'm going to need surgery on my liver which scares the crap out of me because livers have a reputation of bleeding out quickly when nicked wrong. And someday they may start hurting or causing who knows what kind of symptoms. There should be another word other than "benign" to describe that! Because I agree with you, "benign" is so misleading and doesn't tell the whole story - it could mean anything from, you're totally fine and nothing is wrong, to, there's something awful going on but it isn't cancer and won't kill you but it will cause you all sorts of horribleness. Ugh.

Speaking of my liver tumors - my GP doesn't even know what they are or how to treat them. My GI had ordered an abdominal CT scan early on in my IBD/illness, to look not only at my guts but all my organs to see if anything in my abdomen stood out as being the cause of my symptoms. My guts looked fine on the scan, but my liver didn't. My GI later ordered an MRI of my liver to get a better look, and based on those results, the radiologist made the diagnosis of focal nodular hyperplasia. My GP hadn't even heard of FNH though! The next time I saw my GP after getting that diagnosis, he asked me what it was. I told him what the radiologist told me, but he was still like, "Okay, but what is it?" My GP is usually great but I'm going to see a different doctor when I need my liver looked at again! Yikes! I think rule #1 of being a doctor should be, don't ask the patient what something medical is - you're the doctor!!
 
mccindy-- I can certainly understand about prioritizing medical issues. I'm sorry that you have such a high deductible. :(

Cat-- Yes, I started the Gastrocrom about a month ago, but I'm going up on the dose very slowly. I'm supposed to take up to two ampules in water four times per day. Right now, I'm up to take one ampule two times per day. I tend to be very sensitive to meds so that's why I'm going so slow. So far, I haven't noticed an improvement, but I've read it can take awhile, even at the full dose. Rather than assuming that no news means that your biopsies were negative, I'd suggest calling to check.

Moogle-- I'm sorry you're having all of these problems. I always find it so discouraging when what I try to do to help myself get better ends up making me feel worse. :( I have never had oral thrush, but it might be something to have a doctor check out. I think certain (maybe Rx?) mouthwashes can help.
 
Woke up today feeling run down with a massive coldsore :( lip feels like its gonna fall off. Got placement a lot these next 2 weeks, doing 5 days on 1 off 5 days on then xmas. Just hope I can grt through it all
 
Cat - yep, she is on Azacol HD. She started on Azacol but was switched to HD when Azacol was discontinued. Fortunately, she didn't have the problems you did with the switch!

Akiva, hang in there, my dear. Things are rough right now, but they'll get better. Remember to take some down time on your day off, don't work TOO hard!

The benign thing is always a tricky one. I had seven benign fibroid tumors in my uterus and had to have a hysterectomy because of it - even though they were benign, they caused me serious pain when I had my period (apparently uterine cramps against the tumor is like the muscle trying to squeeze around a rock) and VERY heavy bleeding (I would go through 2-3 boxes of 40 Super Plus Tampax plus a package of Ultra pads in 5 days). Although they were benign, they were certainly serious problem for me. Just because a growth is benign and not malignant doesn't mean it's not problematic! That being said, I personally now would prefer benign over malignant, especially since the tumor in my head turned out to be malignant.
 
Missed a call from my doc about an hour ago. He left a message saying he'd called to go over results but that everything looks fine and to call back. Called back and got the answering machine ... womp womp.

Glad he thought to mention the "everything's fine" part or I'd be pretty jumpy right about now. I'm so used to having to call on my own about things rather than have the doc's office call, let alone get a call from the doctor.
 
Oh Cindy, that sounds horrific! I know I'm very lucky that my liver tumors don't cause me any symptoms (yet). I did just a teeny bit of reading when I first got diagnosed with focal nodular hyperplasia, to see what other people's experiences were. And it seems to me like many if not most doctors will just spout off to their patients that FNP doesn't/shouldn't cause symptoms - but a lot of the people said they were experiencing symptoms anyway (pain etc) and getting nowhere because their doctors refused to believe/acknowledge that FNP was the cause. So I may have an uphill battle if/when I do get symptoms from these stupid tumor thingies. Although, to be fair, when I had a hideous attack of gastritis a couple years ago, and didn't know what it was - my main symptom was pain in the mid-abdomen above the belly button, near where the liver is. My GI and GP both worked together and got me rushed into ultrasound to check my gallbladder and my liver. Fortunately neither was causing the pain, but I was really glad that my doctors did take me seriously and got me checked out fast.

Chickadee, is Gastrocrom one of those medications that needs to build up in your system to a certain extent before you can feel it working? I know things like Imuran and 6MP are like that but I don't know much of anything about Gastrocrom. How long do you think it'll take you to get up to the full dose? I'll be interested to hear how it goes for you - if it does work, does that essentially mean that you do definitely have ME? I seem to recall your mast cells were right on the border of what's considered necessary for a diagnosis - so if this med works, would that be more evidence in favor of a diagnosis of ME? Like I said, I know next to nothing about Gastrocrom. Is that medication used for any other illnesses or is it pretty much only for ME?

Akiva, hang in there with your schedule! Like Cindy said, try to have a restful & relaxing day off. Are you able to take breaks when you're working? Hopefully the next couple weeks fly by and then you can have a lovely and relaxing xmas.

How's everybody doing? I wonder if I might be coming down with a cold. I've been more sniffly than usual (my sinuses are messed up due to a childhood injury so they're always acting up to some extent) and my throat has been a bit sore and my voice sounds just a tad bit hoarse. There have been some sick people at work lately. I've been trying to wash & sanitize my hands as much as possible, but unless I go live in a bubble, I can't avoid germs altogether. Oh well, I always seem to get sick around xmas time anyway so I guess I'm just slightly ahead of the game this year! ;)
 
Akiva, sounds familiar - like my days of working the patient care rounds as staff RT. Especially during the winter, we were lucky to get a potty break during a 12-hour shift, much less any type of sitting down to eat break. Sometimes we'd just whip back through the deparment to take a bite off a granola bar. The good thing about the holiday season was that usually every deparment had goodies in their break room so we could at least grab cookie and chew it up wihle peeing! (back when I could eat cookies).
I loved patient care a lot, but those 12-15 hour shifts were killer and I could never do them now.
 
Good gravy, are they not legally obligated to let you take breaks every so often? That sounds awful, I need to take a pee break every hour or so just because I drink so much water & tea while at work, and if my guts are acting up then sometimes I'm in the bathroom even more than that. I would have to wear an adult diaper every day if I only got one potty break the whole day! Yikes!

I definitely have a cold and it suckssssss. I'm having a pity party for myself today. I have to go to the dentist in a little while too so this day is just the pits! My guts are mad, I'm exhausted, my throat hurts, I can't stop blowing my stupid nose, I'm coughing, I have no appetite, I feel a bit nauseous, and now I have to go to the dentist and deal with that fun, I'm just totally blah today. I'm going to go to bed early tonight just so this stupid day can end.
 
That's the downside to working patient care - the patients always come first, and if there are a lot of patients to see, you don't always get a break. It always seemed like when we finally did get some time to sit down to eat, a Code Blue would get called and we'd have to run to that and miss out on the food. Or if I had the Critical Care Unit, I'd get paged as soon as I sat down for a critical patient. Nurses and respiratory therapists are usually on their feet all the time and have to skip breaks and try to find time to pee!
 
Well, I am now joining the ranks of the diagnosed. My CRS told me last night that the Prometheus blood work came back positive for Crohn's and, combined with his findings during the fistula surgery, he is sure I have Crohn's. I saw the GI doctor this morning, and it looks like I will be starting Humira once we get back the further blood work I underwent today, and I have a colonoscopy on 1/9. Thank you all for your support earlier. I'm actually somewhat relieved to know what's going on so that it can be treated.
 
Well, I am now joining the ranks of the diagnosed. My CRS told me last night that the Prometheus blood work came back positive for Crohn's and, combined with his findings during the fistula surgery, he is sure I have Crohn's. I saw the GI doctor this morning, and it looks like I will be starting Humira once we get back the further blood work I underwent today, and I have a colonoscopy on 1/9. Thank you all for your support earlier. I'm actually somewhat relieved to know what's going on so that it can be treated.

Congrats on getting a diagnosis; while it's not what everyone wants to hear, it can be a relief to put a name to the problem and have a definitive route of treatment. Best of luck with the Humira, and I hope you are able to experience a remssion soon!
 
Biopsies came back -- they were completely, totally normal. Nothing unusual, not even an indication of acute inflammation.

So the inflammation and swelling seen during the scope weren't "real" -- caused by the prep itself, probably, my GI said. The blood I've been seeing has been from hemorrhoids ... except, of course, for the stuff over the last week, which was probably from all the biopsies.

So, after two cameras up my butt and one down my throat, three trips to the ER, a million blood tests, three gastroenterologists and a rheumatologist, two CAT scans and two ruined vacations, all in six months, I'm back to square one.

Stomach aches, stabbing cramps and perpetual gurgling noises from the tummy, bloody diarrhea, constipation so bad I pop a lung trying to poo, waves of aching in the lymph nodes in my neck, and most fun of all, week-or-more periods of my temp hitting 99.5 to 100 for no reason.

This is not my life.
 
Aww Bureaucratic, I'm so sorry! To get your hopes up and then have them dashed like this, that's just awful. Not that I want you to have UC, but I want you to have some real answers so you can get proper treatment and feel better and move on with your life. This is so upsetting, I'm sorry.

If it's any consolation, that's about how my test results have gone, too. 2 colonoscopies, 2 upper endoscopies, pill cam, CT, numerous blood tests, poo tests, etc - all totally normal. My colon looks pristine and beautiful and my bleeding is also due to hemorrhoids, my symptoms are due to ?????. I basically had to demand to try IBD meds, and when they worked, coupled with the fact that we've ruled out most other things, my GI decided I probably have some type of IBD. But what is it, where is it, how is it able to hide so well, etc, all those are still unanswered. It's frustrating to be so close and yet so far, and to have only "normal" test results is such a kick to the gut each time.

I don't have answers for you, but I am sending you happy thoughts and I'm here anytime you need to vent, and I definitely empathize with being in the same boat. Big hugs!
 
Well that sucks! Sorry to hear, Bureaucratic. What a bunch of hooey! I feel your pain, except that I had a diagnosis once and then had it taken away. Now I'm lost in undiagnosed land. My only verified issue is a precancerous polyp that was removed so I get to have colonoscopies every 5 years, guaranteed. But then I get to have MRIs every 3-6 months too, so I kinda feel lost in test land some days.
 
Thanks guys :). You're great ... it's nice to not feel alone, even though I really don't wish any of this kind of trouble on anyone.

mccindy--quick respiratory question, *totally* unrelated, but since I don't know what's going on in my gut, I feel some kind of need to figure out what's going on elsewhere. My CT scan report mentioned something about the lung apices having septal thickening, minimal but consistent with pulmonary congestion. At first I ignored that bit, assuming it was just part of the spontaneous pneumomediastinum thing, but now I'm wondering if that's the case. Any chance you can translate? :-D

Today was tough. It's like my body declared the coast clear to really screw with me, now that all the cameras and stuff are gone. Sometimes, when I'm really lucky (ha), I'll get all the stuff that comes with a typical bout of D -- waves of progressively intensifying crampy pain, urgent need to find a bathroom, general desire to yell up at the sky in frustration -- but it'll start a solid three or four hours before anything actually happens. It invariably means I spend a good chunk of my day waiting to stop feeling awful so that I can feel worse for a few minutes and get back to feeling slightly less awful. The worst part is, when I get this kind of pain several hours before actual issues, the issues take longer to clear up and I keep feeling gross for hours after, sometimes days ... the pain's better but still there, and I feel generally ill.

I'm still bleeding from the biopsies, too, and I swear to god something that came out of me looked like a worm.

I kind of hope it turns out I have a tapeworm. A tapeworm seems like good fodder for comedy.
 
Bureaucratic, just a thought and I'm guessing you probably don't have this - but I had heard recently that cystic fibrosis can cause gut symptoms as well as lung issues. Since youhave both respiratory & bowel symptoms, I thought I'd at least mention it.
http://www.mayoclinic.com/health/cystic-fibrosis/DS00287/DSECTION=symptoms

I had a hideous day yesterday too, my guts went nuts on me and I had "hot lava" d (where it feels like it's burning as it comes out). Guts were so rumbly and upset and aren't much better today. I don't usually have symptoms like you described, though, I usually don't have to wait for the party to get started. Once I feel the crampiness start, I need to get to a bathroom and then I'm in there for awhile. But like you said, I don't really feel much better afterwards. If I have a bad episode of d, and then afterwards I get chills and/or my face goes pale, then I know I'm in for a lot more horribleness - that's how my body signals to me that things are far from over and that I'll probably be up all night. I did have an episode of chills after yesterday's fun lava explosion, but fortunately I was able to sleep. I actually tried going to the bathroom again and could only produce mucus, so maybe I just got mostly empty from the lava incident and was then able to sleep. I don't know, I've almost given up trying to predict what my body is going to do. The lava d came out of nowhere, I had gone to the gym and eaten a tummy-safe lunch and then everything went downhill fast. I have a cold and I'm feeling holiday-related stress so maybe it's that, I don't know. Anyway, I'm in a similar boat as you, had a rough day yesterday and today is shaping up to be rough too (I'm SO fatigued and exhausted!).

As for the worm/tapeworm thing - if you look up stuff like hookworms, they're actually beneficial for a lot of people with IBD. Apparently, if you have something like a hookworm infestation in your guts, the immune system will attack the worms - and will leave your actual intestines alone. It doesn't work for everyone and not a lot of research has been done, but it seems promising. I don't know if the immune system would attack a tapeworm in a similar way - but if you had something like hookworms, you shouldn't be experiencing so many symptoms and may even go into remission. So unfortunately (?), I'm betting you don't have a worm - it may have been undigested food or mucus or something like that (though if it happens again, you could always fish it out of the toilet, save it in a little container and give it to your GI to analyze!).
 
Hi bureaucratic. What they're saying is really a lot of big words to say that there is some slight thickening in the airway walls between the passages in the upper lobes of your lungs. Sounds like they think there might be some congestion, which simply means there could be some mucus collecting there, or excess fluid. Given that you've had frequent fevers, it might not be a bad idea to pursue it further. There's always a possiblity it could be a pneumonia, or a minor infection. It's also possible that it is inflammation, since you have an inflammatory response going on in your bowels, and the immune system does like to attack the more delicate tissues in your body. Hope this all makes sense! It's kind of hard to be specific without the visual of the CT, or assessing you physically. :)
 
I'd say that CF is unlikely given that BN is 26 and asymptomatic. It can affect the bowels, but that's not usually the primary target of the disease process. CF patients primarily have issues with their lungs, and cough up excessive amounts of mucus on a daily basis. It's usually diagnosed when people are quite young, and patients with it have to take a lot of medications and have daily respiratory care with chest clearance treatments and nebulized medications.

Not that it's not a possiblity, as Cat says, just highly unlikely in this case.
 
Biopsies came back -- they were completely, totally normal. Nothing unusual, not even an indication of acute inflammation.

So the inflammation and swelling seen during the scope weren't "real" -- caused by the prep itself, probably, my GI said. The blood I've been seeing has been from hemorrhoids ... except, of course, for the stuff over the last week, which was probably from all the biopsies.

So, after two cameras up my butt and one down my throat, three trips to the ER, a million blood tests, three gastroenterologists and a rheumatologist, two CAT scans and two ruined vacations, all in six months, I'm back to square one.

Stomach aches, stabbing cramps and perpetual gurgling noises from the tummy, bloody diarrhea, constipation so bad I pop a lung trying to poo, waves of aching in the lymph nodes in my neck, and most fun of all, week-or-more periods of my temp hitting 99.5 to 100 for no reason.

This is not my life.

This is my story exactly...Since August two colonoscopies both with biopsies, one hospitalization, an endoscopy, ct endography, abdominal CTs, three ER visits (copay totaling $750), about 5 visits with my "special"ist ($40 copay each) and the same symptoms you have with no definite diagnosis.

Guess my point is you are not alone. Keep on truckin.

This is not my life either.
 
BN-- I had a similar thing happen with one of my endoscopies (upper). In the endoscopy report, the GI noted that an area of my stomach was red and mildly inflamed and took a biopsy. But...everything came back normal from the biopsy, and the pathologist said no inflammation! Huh? I don't understand that at all. With an upper endoscopy, they couldn't even blame it on the prep. Have you asked your doctor about staining for Mastocytic Enterocolitis?

Cat-- The Gastrocrom has to be in my system for 4-6 weeks (at full dose) before I can expect to see results. There are not any FDA-approved treatments for Mastocytic Enterocolitis, as it is a newly described disorder. Right now, doctors just try various things to see what works. The main study of ME indicated that no treatment is effective for about 30-40% of people with ME. (Well, no treatment so far....) Gastrocrom is FDA approved for Systemic Mastocytosis. Other treatments for ME include a combination of H1 and H2 receptor blockers (such as Zantac and Zyrtec), Ketotifen (a medication that's not approved in the US but that some people are able to get from other countries) and Entocort. I'm sure there are more, but those are ones that I know about. So...if the Gastrocrom doesn't work, it won't "prove" that I don't have ME. If it DOES work, it will certainly be a strong indication that mast cells are playing a big role in my symptoms.

As far as my diagnosis, this is the main paper that lays out ME as a diagnostic entity: http://www.ncbi.nlm.nih.gov/pubmed/16519565. Accordingly, ME is diagnosed if there are more than 20 mast cells per high powered field. My pathology report said that my colonic biopsy had "about 20 mast cells per hpf." Appropriately, my GI recognized that as meeting the criteria for a ME diagnosis.
 
Oh, and BN, I can completely related to the long period of cramps and awfulness before actual D and just wanting the D to start to get it over with. :(
 
Still bleeding. Every single bm. Still hurting too. No more D though, so that's nice.

How's this for insanity? I stuck some gloves on to figure out if the doc was right about the blood coming from hemorrhoids. Wherever the blood's coming from, it's not somewhere you can, uh ... reach.

But try explaining that to a doctor -- even a really good one. "Doc, I swear I'm not insane or a hypochondriac, but since I was bleeding I decided to stick a finger up ...."

Yeah. LOL.

By now the biospies should be healed up I'd think, but maybe they're the culprit.

In any event, I feel like whatever's going on can't stay in hiding much longer. Stuff's starting to present more and more as overt signs and not just subjective, self-reported symptoms. It's not just pain, it's blood. My nails are seriously messed up. The high temperatures are more or less constant now so they're more likely to be around when I get my temp taken at the doc's office. It can't be long before some big "duh" flag starts waving, I don't think.

Cat -- I think I might adopt your approach and see if my GI will go along with it -- ask for a brief trial of IBD meds to see if they work. I don't know much about the meds though, but I'm wondering if I'd have an easier time convincing the doc to try something that targets inflammation in general? Between the recurring fevers and the high white counts when I wind up in the hospital, plus the night sweats and the totally random episodes of hives, I think there's a pretty strong chance something's inflamed, even if it's not my gut. Oh, and re: the hot lava .... ahahahaha. I mean, there's nothing funny about it when you're right in the middle of a nasty bout -- but but have you seen Bridesmaids? That scene with Melissa McCarthy -- oh, god.

mccindy -- Thanks for the lung info! And yeah, CF seems pretty unlikely, thank goodness. My boyfriend's best friend as a teen passed away from CF-related problems, as did one of my favorite teacher's kids. Really sad. Fortunately I'm pretty much asymptomatic as far as breathing goes. Sometimes I notice I haven't exhaled in a while, like I've been holding my breath without meaning to, but I think that's an anxious thing. The only other weird thing besides the whole "oops, your lung popped" episode was that the last time I had to jog for a couple minutes straight, I felt like my lungs were on fire, couldn't really catch my breath and noticed my mouth tasted like blood for a while -- just taste though, no actual bleeding. It was weird, but I figured it's because I haven't been getting really vigorous aerobic activity in lately. I'm going to talk to my primary care doc about the lung stuff anyway... she seems even more weirded out about the ongoing high temps than I am so I'm sure she'll be willing to look into anything pulmonary that might help explain what's up.

Laurabelle -- UGH! Really sorry to hear someone else has had a year like mine. My primary care doctor put things really well -- we need to stop figuring out what isn't wrong and start getting some answers. I mean, in the grand scheme of things, I'd rather be in the dark than know what's wrong and know it's something awful, but the cluelessness is really frustrating. And expensive. Ugh. Hang in there!

lsgs -- I'll ask my GI about both, as I've had neither. I've had two CTs that included the abdominal area and the small bowel was "unremarkable" in both, but at this point I'll try anything.

chickadee -- Right?!? How something can look one was macroscopically and totally different on biopsy is beyond me. It's like looking at the Grand Canyon and then looking at a 1 foot by 1 foot photo of some rocks from it and concluding "nope, not that deep." Okay, that's over the top and a totally inaccurate analogy, but whatever, haha. I'll look into ME ... might be worth reading up on and asking the doc about.
 
you are welcome. I do remember in the past when I used ot not work out regularly I would sometimes taste blood when I did work out strenuously, but I don't notice it anymore unless I work out when I'm sick.
I do think it's a good idea to talk to the doctor, keep me posted as to what she thinks, if you feel like it. :)
 
Bureaucratic, from my personal experience - Prednisone may be the one to ask for. It's a systemic anti-inflammatory steroid - it'll work on inflammation no matter where in the body it is. It works on IBD but not on IBS. Most doctors won't prescribe it, though, particularly for an undiagnosed person. When I got to the end of my rope, that was the one I asked for. And I got it!

This was about 3.5 years ago - I was in a terrible flare, I had about 35 episodes of d in a 24 hour period (I got a bit delirious around episode #30 and lost count, but I think it was about 35). I slept for about 15 whole minutes that night in between bathroom trips, and even then I woke up coated in night sweat - it was truly a miserable night. My GI and GP were both unavailable the next day so I went to a different GP, who was just awful. He glanced at me and my chart for about 2 seconds each, and declared, "You have IBS and you look depressed - would you like some Zoloft?" Seriously, that was when I lost it. I told him, I'm only depressed because I feel so horrible physically (and seriously, "you look depressed"??? - what kind of a quack doctor says that?). I said I think I have IBD, and I want to try prednisone. I put my foot down and basically demanded pred. I'm normally a meek & shy person, but I stood up for myself then and I'm so glad I did. The terrible doctor said that he'd let me try it, but he wanted me to try some IBS meds first. I agreed and tried the IBS meds. They did nothing. Then I tried the trial of pred - I was on 10 mg a day for 5 days, which is a very low dose and a very short amount of time. But even so, it was like a miracle drug for me. Within the first hour of taking it, I felt different - peppy and happy! Within the first 24 hours, my symptoms disappeared and I felt fantastic. Those 5 days were among the most wonderful days of my life, seriously. And as soon as I ran out of pred, my symptoms came roaring back with a vengeance.

When I saw my GI after that experience, at first he yelled at me, saying it was reckless for an undiagnosed person to take a medication like that, and that he'd never prescribe prednisone for an undiagnosed person! But when I told him how great it worked for me, he changed his tune. After a few months, he conceded to try me on Entocort, which is another corticosteroid, but not systemic like pred is (so less harsh, and fewer side effects, therefore safer to take longer-term) - Entocort pretty much only works on IBD, it's got a special coating that released into the terminal ileum & colon, so if it works for you then you can more or less assume that you've got IBD in the TI and/or colon. Entocort worked great for me and put me into a 2-year remission. :) (I fell out of remission and into a mild flare this past spring when they stopped making Asacol, which was my maintenance medication.)

So yeah, that was my experience with asking for IBD meds. Entocort is fairly mild and may only work for IBD that's on the milder end of the spectrum - given your symptoms, things may be a bit too severe for Entocort to have a lot of impact. The benefit of Entocort is that it only works on IBD in certain parts of the digestive tract - so if it does work for you, you can really narrow down what you likely have. Prednisone is stronger and works on inflammation anywhere - but the downside of that is, it works on multiple types of autoimmune illnesses, like Lupus and Addison's too, so if Pred works on you then you can presume you have something inflammatory, but you can't narrow it down much from there - if it does work you can at least rule out IBS though, as IBS doesn't cause inflammation and pred only works on inflammation. And like I said, many doctors will be very hesitant to prescribe either pred or Entocort, so be prepared to lay out your case for doing a trial of one of those meds. Write down everything that indicates inflammation - the bleeding, the inflammation that was seen on scope - do you get symptoms like waking up with pain and/or the need to run to the bathroom, or night sweats? Remind me, have you had weight loss? All of that stuff can be indicative of IBD but not IBS - so argue your case and say that you're willing to do a short, low-dose trial of something like pred, and you may just get it. I did, and it really changed things for me. I'm still not fully diagnosed, but because those meds worked well for me, we've narrowed down the list of suspects considerably and my GI is more comfortable with treating me with those meds now.

Oh, and one other thing I should mention - Entocort is name-brand only, meaning it can be really expensive if your insurance won't cover it or will only cover part of the cost. I recall that when I was on it, it was over $1000 per month without insurance (my insurance covered most of it so I had a $75 copay each month - still pricey but within the realm of reality at least). Pred is cheap, it's available as a generic. I don't recall how much I paid for it but it wasn't much, probably less than $10. I don't know what your insurance situation is, but you may want to contact them to see if they'd cover Entocort before going to your doctor - it would suck to get your doctor on board with the idea but then not be able to afford it!
 
Today was a great day!

Doc to start me on REMICADE once my insurance co approves it!

No symptoms this week yet thanks to Prednisone!

Sigh, first time I've smiled in about five months but there it is on my face ear-to-ear.

Keep fighting fellow undiagnosiees!

Laura :smile:
 
Wow, Laurabelle, congrats on getting Remicade! You're still undiagnosed, correct? If so, you must be pretty close to diagnosis, Remicade is one of the top-tier drugs for IBD and very few doctors will prescribe it to undiagnosed patients unless they're like 99% certain that the patient has IBD. Do you have fistulas or anything like that? I have heard of a couple people who were put on Remicade because of fistulas before they had a full diagnosis. At any rate, best of luck with it! I hope it's a miracle drug for you! Enjoy the prednisone too, that's my favorite medication ever. Made me feel so great! I'm pretty sure it gave me super powers, I become Wonder Woman when I'm on pred! :p

How's everybody today? I'm stressed and busy and did I mention stressed? The holidays continue to stress me out to no end. Someone at work today mentioned wrapping xmas gifts - I have my gifts mostly bought, but I haven't started wrapping at all. I hate wrapping gifts, but I can't defer that task to hubby because he's, well, kind of terrible at it. You'd think he'd be good at it, as he's an artist and has an eye for detail, but he does the guy thing where he sort of haphazardly smooshes some newspaper around the gift and puts a piece of tape on there for good luck. :p It looks terrible, I can't spend money on a nice gift and then present it to someone when it is wrapped so poorly. So I'm stuck with wrapping duty, there's SO much to wrap and I have a lot of wrapping paper and not a lot of gift bags/boxes and can't really justify going out and buying more bags when I have so much wrapping paper to use up. Sigh! Someday when I can afford it, I'm just going to buy a ton of gift bags and be done with wrapping.
 
(Sorry for intruding on the undiagnosed thread - I spent years undiagnosed, so I know how it feels!)

When I saw my GI after that experience, at first he yelled at me, saying it was reckless for an undiagnosed person to take a medication like that, and that he'd never prescribe prednisone for an undiagnosed person! But when I told him how great it worked for me, he changed his tune.

I do think your GI has a point. It could so easily have gone the other way - Prednisone is a very scary drug. I know how when you're undiagnosed (or when you're being told you "just" have IBS or whatever), doctors tend to be dismissive and assume no treatment is needed because the symptoms can't possibly be that bad, and clearly that's an extremely problematic way to view undiagnosed patients, but if you had ended up permanently damaged by prednisone, or you had a psychotic episode from it, or any of the other not-so-lovely things it can cause, the doctor who prescribed it may have to justify his decision and be able to say it was worth the risks. With no diagnosis, it's hard to do that. A low dose, short term course of pred is unlikely to do much harm, but it's unlikely to do much good also, and wouldn't usually bring about a long-term remission - so using it as a trial to see if undiagnosed symptoms improve isn't likely to be worthwhile as further treatment would be needed. Whereas a stronger dose, longer course, or following up with other meds would help with IBD but that's when the side effects get scary also - and consequently when there needs to be a concrete diagnosis to justify the risks.
 
(Sorry for intruding on the undiagnosed thread - I spent years undiagnosed, so I know how it feels!)

I do think your GI has a point. It could so easily have gone the other way - Prednisone is a very scary drug. I know how when you're undiagnosed (or when you're being told you "just" have IBS or whatever), doctors tend to be dismissive and assume no treatment is needed because the symptoms can't possibly be that bad, and clearly that's an extremely problematic way to view undiagnosed patients, but if you had ended up permanently damaged by prednisone, or you had a psychotic episode from it, or any of the other not-so-lovely things it can cause, the doctor who prescribed it may have to justify his decision and be able to say it was worth the risks. With no diagnosis, it's hard to do that. A low dose, short term course of pred is unlikely to do much harm, but it's unlikely to do much good also, and wouldn't usually bring about a long-term remission - so using it as a trial to see if undiagnosed symptoms improve isn't likely to be worthwhile as further treatment would be needed. Whereas a stronger dose, longer course, or following up with other meds would help with IBD but that's when the side effects get scary also - and consequently when there needs to be a concrete diagnosis to justify the risks.

I dunno, what was my alternative? GI said I would die if I continued to lose weight and be unwell.

I see both sides of the story but when you're in the situation (especially in my situation with high FCP and high ESR etc) it seems reasonable. I get why you shouldn't do it, but often there is no other option. For a case with suspicion there could be something inflammatory, not even crohns/colitis just something inflammatory or autoimmune then why not? For mild cases or where there is absolutely no evidence it could be inflammatory then I totally agree. My rheumatologist believed in it enough to keep me on pred a year (but he had 'proof' it was working in my blood results and FCP results). If I hadn't had it, my story would be very different. If my guts hadn't killed me, I probably would!

Mind you, even though the pred worked and blood results looked great they still said... It's psychological, placebo. How can you win?

I think the problem with GI's is that if there is no concrete diagnosis, they'll just leave you and say there's nothing wrong while, in my case, your career, marriage, and life falls apart and not care about that. They treat you like a machine rather than a person and medicine is not that straightforward. My mother in laws car for example, constantly lost power and the engine kept cutting out. This nearly caused an accident on the motorway when her car suddenly lost power. She took the car back to Audi, they plugged it into their little computer, and told her there was nothing wrong with it, it registered no fault. Does that mean there is nothing wrong with the car? That's what I feel like. Doctors read scans and if nothing meaningful to them flags up, then it's not a problem and you are exaggerating, crazy, attention seeking. Then when one doctor gives you that label you can never come back from that. You are always the pain-in-the-ass patient. It's not my fault I'm sick, and it's not my fault modern medicine can't put the pieces of my complicated puzzle together into something meaningful - but unfortunately I am the one who has to deal with the consequences of a doctors damaged ego.

It's a damn disgrace. And I'm sorry, but I am particularly angry at the moment as a gastroenterologist has written a letter with a particularly aggressive tone to my GP. My GP was quite shocked. The underlying message is that I'm lying, that I'm attention seeking, that there's bugger all wrong with me. All because he has a personal spat with the doctor who has prescribed me LDN. He tried to get him struck off because he was making the GI's patients better, and this did not sit well with the GI's ego. Let's get him to the GMC, that'll show him for... making my patients better?! What?! Where is the respect for the patient in that?

When my patients come to see me and I can't find anything wrong, and the x-rays are clear, I would never ever assume someone is making it up. And if someone comes in to me in pain, I make sure they leave with something. It may not be an exact solution, but at the very least pain relief. My job is to help. I would never let someone walk out the door and say pfft nothing I can do, get out my surgery. I had to be hospitalised after four years of constant agony, losing sleep, to even be prescribed painkillers. Why should a doctor get away with treating someone like that? They are in a position of power and treating vulnerable people who are unwell and in pain.

Sorry for the rant. I am just so done with all this. Even though I'm feeling better on LDN my life's a mess. I don't even know how to begin picking up the pieces, then you get people writing shit like that about you?
 
Last edited:
lsgs, I know you've been through a lot and I agree with what you said. I know pred can cause some very serious side effects, but taking 10 mg a day for 5 days wasn't going to cause my bones to crumble and it wasn't going to cause secondary Addison's disease or anything like that. It gave me some insomnia, but I felt so great on it that I didn't even care. The pros FAR outweighed the cons. And yes, as UnXmas said, further treatment was necessary - but the fact that pred worked was the thing that made my GI comfortable enough to prescribe Entocort for me. He wouldn't have put me on Entocort if he didn't know how I'd react to corticosteroids, it took a great reaction to pred to get that ball in motion. And it confirmed to me and my doctors that I do indeed have inflammation, even though it hasn't shown up on tests - that caused my doctors to take me more seriously, and as lsgs said, treating me like I'm crazy/exaggerating was no longer an option (not that my GP or GI ever did that, but other doctors certainly did).

And honestly, maybe it was a bit more risky for me to try pred because I *am* one of those odd cases where no inflammation showed up on any of my tests. My bloodwork is always normal, no inflammation was seen on any scopes nor on the pill cam nor on the CT, etc. Trying pred was a shot in the dark and driven by desperation - I wanted to know I wasn't crazy in addition to desperately needing relief from my symptoms. I have an aunt with Crohn's and it took her over 30 years to get properly diagnosed - in her case, it took 30+ years for the intestinal damage to cause scar tissue that was visible on scope, and that finally got her a diagnosis. I wanted to be proactive and not let things rage out of control forever like what happened with my aunt! (Not that she wasn't proactive, she had multiple scopes & many other tests over the years - like with me, her results were all normal too.) Very fortunately, pred worked so fantastically for me that we now know there IS inflammation, it hides really well but it's there somewhere, I'm not crazy, I'm not making it up, it's real - I'm legitimately physically ill, it's more than IBS. That validation was as important to me as getting relief from my symptoms was, so pred was a miracle for me in more ways than one.

UnXmas, you said that a short trial of pred is unlikely to do much good, and I have to strongly disagree with that. My pred trial turned my whole life around. Because it worked so well, my GI put me on Entocort and that got me into remission. I spent 2 amazing, lovely years in remission (I only fell out of remission earlier this year because they stopped making Asacol and I've been struggling to find a maintenance medication that works as well as it did). If I hadn't tried pred, and had just been compliant with whatever my doctors said and allowed myself to be treated like a crazy fool, then I'd probably still be feeling hideous all the time, and as lsgs said, I may have even ended my life - I certainly had those thoughts up until I got into remission. Pred changed my life, maybe even saved my life. It was a small risk with a huge reward. I'm forever in the pred fanclub!
 
Just found out my FCP is still high, 208 on minimum dose LDN, which is lower than it ever was on steroids. I was 227 on 50mg pred! Pretty powerful stuff as far as I'm concerned. Anti-LDN GI must be raging, cause it kind of proves it's working!

My GI just never bothered to write to my GP, so I never got the results. When I called the secretary spoke to GI, GI said he's happy and I don't need to see him for 6 months.

As far as he knows I'm still a night sweating, rectal bleeding mess. But it's chill, 6 months is a fine time to wait. God bless the Dr who prescribed me LDN. Seriously.

Sorry I know I'm coming across as incredibly bitter right now, but that's because I really am :p

On a serious note, and I know I'm totally hijacking this thread, but what do I do now? My GI clearly has beef with me about this LDN thing, enough to write a pretty vicious letter to my GP. How can I go back and see this guy? And if I don't... Well he accused me in the letter of doctor hopping. So if I see another doctor, I'm gonna be doctor hopping again?
 
There is such a huge gap in care in the world of GI. It kind of reminds me of the docs I've seen in relation to my back. If they have a patient who has pain but there is nothing visible on Xrays, MRIs or CTs, they are disregarded. (I was blown off for years before an MRI finally revealed I had degenerative disks, and then I was the favorite patient bc they knew I would need surgery). GIs tend to only go by the visual as well, it seems, and it is intensely frustrating to go the doctor and say, hey, I can't eat enough food because every food causes me pain. And hey, I also can't go to the bathroom for like 3-4 days and then I have two days where I am in the bathroom with D like 5 times a day. And hey, I have night sweats and strange rashes and joint pain. Then they do a scope and a scan and sey, well, we didn't see anything so we don't think there's anything wrong with you. So, we'll just say you have IBS. IN the meantime, try not to lose any more weight! :(
The funny thing is, when I was originally diagnosed with Crohn's in 1995, I was put on Prednisone for four months and it put me into remission. For a really long time. Now, they've taken that diagnosis away and tried to put me medication for IBS, which failed. If I have IBS, wouldn't the medication have worked?
So now I'm stuck with managing my meager diet and probably adding supplement shakes.
At least my brain tumor showed up on a scan and I have a pathology report to confirm the cancer so I know there's no way for any doctor to deny that diagnosis!
 
How's everybody today? I'm stressed and busy and did I mention stressed? The holidays continue to stress me out to no end. Someone at work today mentioned wrapping xmas gifts - I have my gifts mostly bought, but I haven't started wrapping at all. I hate wrapping gifts, but I can't defer that task to hubby because he's, well, kind of terrible at it. You'd think he'd be good at it, as he's an artist and has an eye for detail, but he does the guy thing where he sort of haphazardly smooshes some newspaper around the gift and puts a piece of tape on there for good luck. :p It looks terrible, I can't spend money on a nice gift and then present it to someone when it is wrapped so poorly. So I'm stuck with wrapping duty, there's SO much to wrap and I have a lot of wrapping paper and not a lot of gift bags/boxes and can't really justify going out and buying more bags when I have so much wrapping paper to use up. Sigh! Someday when I can afford it, I'm just going to buy a ton of gift bags and be done with wrapping.

What a bummer... I'd wrap them for you, if I could. I love wrapping prezzies! My hubs can do a passable job, but it's not really up to MY ;) standards. So I do the wrapping. I usually wrap 'em as I get 'em so I don't have a huge pile to wrap all at once.
I'm feeling much less stressed, myself, since we're heading to AZ tomorrow to see my oldest son and his wife. A few nice, calm, warm, stress-free days!
 
There is such a huge gap in care in the world of GI. It kind of reminds me of the docs I've seen in relation to my back. If they have a patient who has pain but there is nothing visible on Xrays, MRIs or CTs, they are disregarded. (I was blown off for years before an MRI finally revealed I had degenerative disks, and then I was the favorite patient bc they knew I would need surgery). GIs tend to only go by the visual as well, it seems, and it is intensely frustrating to go the doctor and say, hey, I can't eat enough food because every food causes me pain. And hey, I also can't go to the bathroom for like 3-4 days and then I have two days where I am in the bathroom with D like 5 times a day. And hey, I have night sweats and strange rashes and joint pain. Then they do a scope and a scan and sey, well, we didn't see anything so we don't think there's anything wrong with you. So, we'll just say you have IBS. IN the meantime, try not to lose any more weight! :(
The funny thing is, when I was originally diagnosed with Crohn's in 1995, I was put on Prednisone for four months and it put me into remission. For a really long time. Now, they've taken that diagnosis away and tried to put me medication for IBS, which failed. If I have IBS, wouldn't the medication have worked?
So now I'm stuck with managing my meager diet and probably adding supplement shakes.
At least my brain tumor showed up on a scan and I have a pathology report to confirm the cancer so I know there's no way for any doctor to deny that diagnosis!

Too true, if the meds for IBD don't work (which they don't for a lot of people, which is why we have anti-TNFs and all sorts) then you don't have IBD.

If you have IBS and the drugs don't work, then you still have IBS.

?
 
I dunno, what was my alternative? GI said I would die if I continued to lose weight and be unwell.

I see both sides of the story but when you're in the situation (especially in my situation with high FCP and high ESR etc) it seems reasonable. I get why you shouldn't do it, but often there is no other option. For a case with suspicion there could be something inflammatory, not even crohns/colitis just something inflammatory or autoimmune then why not? For mild cases or where there is absolutely no evidence it could be inflammatory then I totally agree. My rheumatologist believed in it enough to keep me on pred a year (but he had 'proof' it was working in my blood results and FCP results). If I hadn't had it, my story would be very different. If my guts hadn't killed me, I probably would!

Mind you, even though the pred worked and blood results looked great they still said... It's psychological, placebo. How can you win?

I think the problem with GI's is that if there is no concrete diagnosis, they'll just leave you and say there's nothing wrong while, in my case, your career, marriage, and life falls apart and not care about that. They treat you like a machine rather than a person and medicine is not that straightforward. My mother in laws car for example, constantly lost power and the engine kept cutting out. This nearly caused an accident on the motorway when her car suddenly lost power. She took the car back to Audi, they plugged it into their little computer, and told her there was nothing wrong with it, it registered no fault. Does that mean there is nothing wrong with the car? That's what I feel like. Doctors read scans and if nothing meaningful to them flags up, then it's not a problem and you are exaggerating, crazy, attention seeking. Then when one doctor gives you that label you can never come back from that. You are always the pain-in-the-ass patient. It's not my fault I'm sick, and it's not my fault modern medicine can't put the pieces of my complicated puzzle together into something meaningful - but unfortunately I am the one who has to deal with the consequences of a doctors damaged ego.

It's a damn disgrace. And I'm sorry, but I am particularly angry at the moment as a gastroenterologist has written a letter with a particularly aggressive tone to my GP. My GP was quite shocked. The underlying message is that I'm lying, that I'm attention seeking, that there's bugger all wrong with me. All because he has a personal spat with the doctor who has prescribed me LDN. He tried to get him struck off because he was making the GI's patients better, and this did not sit well with the GI's ego. Let's get him to the GMC, that'll show him for... making my patients better?! What?! Where is the respect for the patient in that?

When my patients come to see me and I can't find anything wrong, and the x-rays are clear, I would never ever assume someone is making it up. And if someone comes in to me in pain, I make sure they leave with something. It may not be an exact solution, but at the very least pain relief. My job is to help. I would never let someone walk out the door and say pfft nothing I can do, get out my surgery. I had to be hospitalised after four years of constant agony, losing sleep, to even be prescribed painkillers. Why should a doctor get away with treating someone like that? They are in a position of power and treating vulnerable people who are unwell and in pain.

Sorry for the rant. I am just so done with all this. Even though I'm feeling better on LDN my life's a mess. I don't even know how to begin picking up the pieces, then you get people writing shit like that about you?

No need to apologise for ranting. I think we're actually more in agreement than not - I think there's a major problem with how many doctors view undiagnosed patients who don't have concrete test results. But I also think it puts an individual doctor in a very difficult position if he/she does want to help an undiagnosed patient by prescribing a risky med, but knows he'll have to answer for it if it doesn't work out. And if more patients were being treated on unclear or negative test results, it's quite possible that a higher rate of complications with a much lower rate of successful treatments could occur. I know what it's like when an illness is destroying your life, but inappropriate medications (and surgeries) can destroy your life too. I've read more than one story on this forum where someone is suffering as a result of prednisone and wishes they'd never taken it (I say this as someone who prednisone greatly helped). If you're going to be trying a risky drug, you want to know that you can assess the risks as accurately as possible - or be able to trust that a doctor has assessed them for you, which is difficult without a diagnosis or objective test results.

Clearly patients with severe symptoms but negative tests need to be treated better in terms of how doctors view the legitimacy of their suffering. This is so important. There's a big problem with prescribing psychological help inappropriately too. When we have physical symptoms, it's extremely harmful to be given antidepressants or referred to a psychiatrist.

And of course each case should be assessed individually. But it is much harder to know what medication will help an undiagnosed patient than it is to know what will help someone with a known disease. An undiagnosed patient could have to go through trials of one dangerous med after another in order to find one that helps, whereas a diagnosis allows the doctor to limit the potential treatments to those proven worthwhile in treating that particular disease. The undiagnosed patient may end up being exposed to many more risks before finding something that helps. Holding back on treatment will mean the undiagnosed get less access to potentially beneficial meds, but that might be the price to pay for keeping them safe.
 
Medication's a thorny subject no matter what angle you take on it. Ya'll have already mentioned most of the big issues -- placebo effect, risk of awful side effects, all that. And then there's the way a lot of these drugs themselves work, which can make selecting a class of drugs, let alone a specific one, a tricky thing: Even if there's good evidence you've got an inflammatory problem, if you aren't sure whether it's caused by an infection or by your own system acting out on itself, how do you treat it? Drugs that work in part by inhibiting the immune system, I'd imagine, are the last thing you'd want to give a patient if you're still not sure an infection isn't the root of the trouble.

It gets even worse, no doubt, when treating a patient might affect other ongoing health problems. For example, I'm bipolar. My medication cocktail -- a mix of an SSRI to battle depression and anxiety, a stimulant for impulse control, and an as-needed low-dose atypical antipsychotic to reduce the risk of mania when I've been feeling a little *too* good -- has kept me stable for two full years. That's two years with no highs or lows intense enough to require extra medication or anything like that. That level of stability is a VERY hard level to get to in the mental health world.

Prednisone and other steroids (but especially pred) can cause manic episodes in people who haven't even shown bipolar symptoms in the past. Needless to say, you don't give those to a bipolar patient without a really good reason. Even when they work, you have to consider whether the thing you're treating is worse than the underlying psychiatric condition that could be exacerbated.

Sigh.

Hope folks are feeling better. I was trapped in my office bathroom for two hours last night with another one of those episodes where the pain and cramping go on for hours before anything gets really bad. Feeling better today, but still wondering if I'll ever be normal again.

lsgs -- dude, you have my sympathy. If it's any consolation, frustration is totally understandable -- and you still come across as a reasonable person.

This is a horrible approach, but it's the one I've mulled over many, many times: Instead of "doctor hopping", perhaps I should stop doing the handful of things I've done because my own research and experience has taught me they help alleviate symptoms. Instead, I could go with my doctor's orders strictly. I have a good GI now, but before, that kind of behavior probably would've landed me in the ER on a monthly basis, maybe more. It's hard for a GI to accuse a patient of doctor hopping if the doctor they "hop" to is the one at the hospital -- the hospital the patient landed in because the GI couldn't figure things out.

Like I said. Going to the hospital instead of seeing a new doctor is NOT a great idea, but in a warped way, it kind of makes sense, doesn't it?
 
Add me to the list of frustrated people today. I just had something new happen - blood started dripping out my butt while I was peeing! I wasn't even trying to poo, didn't have to poo, but somehow blood started coming out. That's never happened to me before - I've had blood mixed in with a bowel movement, and I've had teeny bits of blood on the TP when I get a small fissure, but it's never just dripped out of its own accord like that before. I was never a bleeder up until this year - I've had this presumed IBD for 4 years now. I'm not sure what changed this year besides my maintenance medication, but this is getting ridiculous.

What would you guys do? The blood dripping only happened the one time so far - I'm not really in any pain or anything, I'm having loose stools but it's not even really d, just loose but still sorta solid stools. I'm stressed to the gills so I'm guessing that's at least part of the culprit. My guts are sort of upset but I think that's also due to stress. If it happens again, I will call or email my GI. I guess it's just freaky when a new symptom happens, and I hope it was a fluke/due to stress. Of course, now I'm worried about what's going on in my guts so I'm stressing more... :(
 
Bureaucratic, that does sound like an awful idea and I'd encourage you not to pursue it. There's a girl, allieinwonder, she used to be a regular on the forum. She was getting frustrated with her lack of diagnosis, so she decided to see what would happen if she followed her doctor's directions to eat healthy. She ate a salad with some dried fruit & nuts on it - all of those things can potentially cause a blockage. And sure enough, she said she was in hideous pain, vomiting, passing out - didn't get a diagnosis (she eventually turned out to have Behcet's, not IBD) and just caused herself tons of pain & symptoms. Believe me, your doctors are not gods, they don't know your body the way you do, and you're only going to cause yourself more trouble if you try to follow their instructions to the letter. I mentioned Allie's experience because I recall you apparently had a blockage or partial blockage too - do you really want to go through that or something similar again? Don't do it, don't do things that you know will just make it worse - it's possible you'd get a diagnosis, but more likely you'd just end up in tons of pain. And if you get blocked again, you could potentially perforate which is a life-threatening situation. I don't want you to do something like that to yourself just to prove a point or to try to get your doctors' attention! So don't do it, hun, I know it sounds like an intriguing idea, but it often doesn't end very well.
 
bureaucratic, I think Cat's on the right path with that one. We know our own bodies and what works for us. Docs are often just guessing for us when it comes to what's right to eat, since every person reacts differently to different foods.

I know what you mean about the different meds for different medical conditions. My Keppra for my seizures is my #1 most important medication, and I've had to either not take meds for other stuff or stop taking them because of the effect they have on me and it. Right now I'm trying to get an anti-depressant for the wild mood swings the Keppra gives me and I keep getting vollied back and forth between my local GP and my neuro-oncologist. He (GP) thinks she should do it since he's not familiar with or treating me for the cancer, and isn't the prescribing doc for the Keppra. She thinks he should do it. Someone just describe the damn medication already!
 
Wow, hello everyone - lots of conversation while I've been missing!

I was actually planning on asking who here was crafty - it's literally the only thing that's kept my sanity for the past year. I have a blog (therainbowrevolts.blogspot.com) and I'm really crafty-active on IG under the same, therainbowrevolts, if anyone also has a blog or IG and would like to follow each other!! I went to FIDM for fashion design, but this year has been all about quilts, bags, purses, crochet, knitting, cross stitch...when there's nothing much to be grateful for about your everyday life and the way that it's been changed, at least you can be grateful for hands that can create things - and then be able to appreciate a finished, completed item.

I was going to say something else...now I've forgotten. I might remember in a moment, let's find out.

Anyway. I got my biopsy results last week. I just don't know how to feel - I couldn't hear the woman on the phone too terribly well, so I got a printout of the results in the mail as well...I guess I'll give the gist? I'm really not sure how to interpret it, so if anyone can compare to their own, perhaps, that'd be helpful?

My endoscopy really didn't show anything, it says, "unremarkable duodenal mucosa" and "unremarkable antral and body-type mucosa". On my colonoscopy, however, it says: "Mild focal active ileitis, see comment", the comment is, "[terminal ileum biopsy] contains multiple fragments of small bowel mucosa with marked lymphoid hyperplasia. In addition, there is focal mild mixed inflammatory cell infiltrate within the lamina propria and at the surface epithelium. No granulomas are identified. These findings may represent mild/resolving infection, however drug-induced injury (NSAIDs) can produce similar changes. Correlation with endoscopic findings and appropriate follow up is suggested to exclude Crohns disease, since involvement by this disorder is frequently patchy". It goes on, I believe a quote from a medical source? To say, "Isolated asymptomatic ileitis does not progress to overt Crohn's disease on long-term follow-up despite features of chronicity in ileal biopsies". The other biopsy, from my colon proper, says "unremarkable colonic mucosa, no evidence of chronic or active colitis, including lymphocyctic/collagenous colitis".

Now, on the phone, she told me if my symptoms persisted, I could get a pill cam test. In the results here, it seems like what it's saying is, if they found inflammation in my ileum without my having any outward symptoms of Crohns, then it probably wouldn't be. However, I have to imagine, with my 18 months of disability and suffering, with just how horrendously terrible my joints have gotten, my eyes have even started feeling tender and swollen, my nails showing massive signs of malabsorbtion (oh!! I think that was what I was going to talk about before! I almost went into school for nail tech stuff, so it was actually when I was taking a bunch of supplements and noticed that my nails looked completely unhealthy that I thought there was more going on than just me not eating right or eating too much or whatever I thought was going on before things got undeniably terrible); I just have to think that if my symptoms that, after my months and months of hoping and searching for another answer, perfectly match Crohns symptoms in every way, and they're telling me I should get a follow up to "exclude" Crohns...It feels like an answer, I guess. But - I could be interpreting these results wrongly, or reading into things that aren't there. What did your biopsy results look like, especially if you were diagnosed/approaching diagnosis? I'm planning on calling to see how much the pill cam is, but we don't have insurance and I'm guessing it is outrageously expensive. Oh, forgot to say - I found it interesting that both during my follow-up after the colonoscopy and in my biopsy results, the doctor mentioned Crohns by name (after my scope he said he didn't see anything that looked like Crohns or colitis, and then obvs the results above). The thing is, after some really terrible ER visits, I've stopped telling medical professionals that I think I'm going through Crohns or anything like that, so I never even mentioned this to the nurse practitioner I met with (never met with the Dr). The fact that it was brought up without my mentioning it as a concern actually really concerns me!

Oh, the Dr prescribed me bentyl after my colonoscopy, but I wanted to wait until my biopsies to decide to start taking it or not - the nurse told me that he wanted me to keep taking it, so I tried to give it a shot - bad, bad idea. Made me hideously drowsy, I was in a terrible mood, and it seemed to cause cramps and D and pain rather than end it. He prescribed me like 20mg/3 times daily - I only took this thing for like 3, 4 days, and I don't even know that I actually took it 3 times daily all those days (have no idea, was so out of it), but when I realized it was awful and stopped, I got withdrawal symptoms!! Are you kidding me?! This is just the worst, I shouldn't have to deal with this on top of how terrible I feel regularly :( Hopefully by tonight it'll all be out of my system - my husband did some research and found that it has a fairly long half-life so I just have to wait it out. :(
 
This is a horrible approach, but it's the one I've mulled over many, many times: Instead of "doctor hopping", perhaps I should stop doing the handful of things I've done because my own research and experience has taught me they help alleviate symptoms. Instead, I could go with my doctor's orders strictly. I have a good GI now, but before, that kind of behavior probably would've landed me in the ER on a monthly basis, maybe more. It's hard for a GI to accuse a patient of doctor hopping if the doctor they "hop" to is the one at the hospital -- the hospital the patient landed in because the GI couldn't figure things out.

Like I said. Going to the hospital instead of seeing a new doctor is NOT a great idea, but in a warped way, it kind of makes sense, doesn't it?

Honestly - this is now my approach. I went into the ER and to my old Dr last year, and even to a GI last year, and I said, here's what my symptoms are. Here's how long they've lasted. Here's what's helped so far. All I got in response is, "you don't have Crohns, Crohns is rare, your tests show nothing, get out". It's been about a year since I saw any of them, and in between, I was just doing what I could. Now, I'm seeing a Dr again, and he seems to be really playing his cards close to the vest with what info he's giving me and how he's presenting it...like how after my scope he said "nothing looks like crohns" now after my biopsies, it's "take another test to exclude crohns"...like he doesn't want me fully informed on what the possibility of the results could be, with no extra information that could prove helpful - sort of how after my endoscopy he wanted to say, well, it's your MM usage causing all your gastroparesis, stop that. Well, that's the only thing keeping me living anything close to a life. The only way I am remotely functional. I felt super iffy on taking bentyl (it was first prescribed to me by a really clueless nurse practitioner I met with once who prescribed it alongside a TRICYCLIC ANTIDEPRESSANT which is very clearly stated in the med info as two things you should never mix - she thought I was anorexic and had IBS hahahahahahaha ok), but he said after all my biopsies he wanted me to, so I did. And it was miserable and a terrible idea. But, I can say I followed his orders and got a terrible result - he has to cross that off his list now. If he ordered me to stop using MM, I would. But I would bet you within a week I'd be in the ER for severe pain, and if not, I'd be laying in bed doing absolutely nothing, because that's what I was like before I realized it would help: I was driven out of my mind with hunger and pain and D that continued even when I was only having liquids. Going through that again, by choice, would be completely, completely miserable. But, having been in this situation for so long, here's my advice: do what you can for your diagnosis. If you have to do what your Dr says and have it fail miserably, I think sometimes that is all you can do - short of visiting a new Dr, which, if that is in any way an option, DO THAT INSTEAD, of course. I just don't know what else you could do, if the only way they'll look for new options is when all their ideas fail miserably.
 
Hi Rainbow, welcome back. I just had a glance over your blog, and wow, your quilting and sewing skills are impressive! I sew, mostly I try to tailor clothes or make little stuff (I'm making an xmas stocking for a friend's kid right now) and I've made a couple t-shirt quilts, but that's about the extent of my quilting abilities. I crochet too, currently working on a blanket for my grandpa for xmas. I love to crochet on really bad tummy days - I think the thing that really gets me down about having a chronic illness is when I feel worthless, like I can't do anything and I'm of no use to anyone. Even if I'm feeling horrid and can't do much of anything, if I can crochet something useful, I feel like then I have value and I am worthwhile. It makes such a difference in how I feel about myself if that makes sense - if I'm just sick all the time and can't do anything, I feel like a waste of space and a burden. But being able to make something, to do something, like you said - it keeps me sane. :)

Wow, sounds like you had a bad reaction to Bentyl! It's mainly an IBS drug, used to calm down cramps. I take it sometimes myself - honestly, it doesn't do much of anything for my guts, but it helps okay with my menstrual cramps! :p I take a tricyclic antidepressant - I take 25 mg of Amitriptyline as a migraine preventative (my GI feels it also should be "calming" my guts but I haven't experienced any such effect). My understanding about the contraindication of tricyclics and stuff like Bentyl is, they can both produce a mild constipating effect, so if you take them together then you're more likely to get a little too constipated and then you can run the risk of getting blocked, perforated, etc. It's not like they'll cause a hideous reaction if you take them together, it's just that they'll both back you up and moreso when they're used together, that's my understanding anyway. I tend to take stool softeners when I take something like Bentyl so that I don't get too backed up. But anyway, I'm getting off track. Sounds like a hideous reaction, and if it were me I wouldn't take Bentyl anymore. I had a similar bad reaction to a different IBS med - my GI prescribed Hyoscyamine to supposedly "calm" my guts. Well, it didn't calm a thing but it did give me horrendous nausea which lasted for several weeks after I stopped taking it! So I can relate - Bentyl's just an IBS med anyway like I said, so you likely wouldn't have gotten much relief out of it anyway even without the hideous reaction.

As for your scope results - I know that granulomas pretty much confirm that it's Crohn's, so no granulomas found means they didn't find Crohn's. That doesn't necessarily mean you don't have Crohn's - it can manifest anywhere in the digestive tract, literally anywhere from mouth to anus, and the scopes only see the very beginning & very end of the small intestine - so it could be hiding out in your small intestine (that may be why they offered you the pill cam, as it can see the entirety of the small intestine). It sounds to me like they aren't thinking Crohn's nor microscopic colitis based on the biopsy results - I think they said they found inflammation but it wasn't indicative of any IBD. They mentioned possible inflammation due to NSAID use - have you taken anything like advil/ibuprofen lately? I'm not really sure what they mean by "focal mild mixed inflammatory cell infiltrate" - seems they found inflammation but aren't sure what it is? When do you see your doctor for a follow-up, or can you call him and ask about what all this means?

How's everybody else today? I think I have a nasty fissure, and that's what's been causing my anal bleeding. I was dripping blood yesterday and I've had blood on the TP last night and this morning. Fun times. :p I've had fissures in the past and this feels like a fissure, so I guess the good news is that it's not something worse like a fistula or whatever. Still, fissures aren't fun. It feels like there's a big papercut on my anus! Ow. Hopefully the stupid thing heals soon!
 
Awww, thank you! I would've been so bored this past year without goals/deadlines/etc, so joining swaps/doing things outside of my comfort zone/pushing myself to learn a lot have really been a huge saving grace! I've heard t-shirt quilts are kind of a PITA to make haha, I've got one I want to make from all my vintage shirts, but I'm waiting until I feel more comfortable! Do you have any pics of what you've made anywhere? I usually cross stitch when I don't feel like leaving my bed, but only because I have a ton of projects I'm working on. Crochet always sounds so fun but I never feel like I have "time" for it! I've a half finished blanket that really needs to be finished sometime soon....

Hm, okay, good to know about the meds! I didn't look into it much further, just that the tricyclics always showed up on the lists of meds to avoid, which seemed weird that she would try to give them to me. I always assume it'll be The Worst if you take them together, juuuust in case...but yeah, I wasn't sure an IBS med would really work, which it didn't seem to at all. But at least I gave it a shot.

Oh yeah, I mean, I am just so surprised they found anything in my ileum at all. All my pain has always been around my left hip, and I hadn't been losing weight at all, or going through the symptoms that specifically revolve around the ileum - until after I went into the ER for a suspected partial blockage (they never found anything, but some meds for nausea & pain plus the fluids and a few hours later I was okay until the next night, when it came back - they gave me the same things and then I was fine after that). After that, I started dropping weight very fast - up to 30lbs in a month or so. My joints have gotten exponentially worse recently, as well. They did find, mmm, granular mucosa on my ileum, but not very severe. I was almost thinking maybe it only just started showing there and maybe instead of resolving inflammation they're seeing developing inflammation? But I mean, I'm sure the fact they say resolving means that there would be indications if it was just starting out....ugh, let me go get my medical degree so I can understand what's going on with me >:c

Let's see, NSAIDS, I stopped taking for over a week before my tests. I did go through a time a few years ago (2009ish) where I was repeatedly (and accidentally, it's important to note) gave myself some mild tylenol overdoses. And I take 4 advil at a time for my migraines, which I might get once a week, once or twice every two weeks, something like that. That's the only time I take advil anymore, I really try not to use it normally (don't use tylenol at all anymore, it doesn't work as well on me anyway).

I'll be calling my Dr and see if I can talk to him a bit about the results (especially without having to pay for a new appt...) and see from there. Oh, I found the notes I took from when they called me, and they told me they found small bowel inflammation, which might be due to something I could not hear (helpful, but I assume it was the NSAIDS stuff...it almost sounded like she said separation or suppuration but neither of those make sense...), and they said to keep taking the bentyl and to come in for a small bowel capsule study if my symptoms persisted. For me, 18 months is more than enough, and I'm taking that as a recommendation to come in immediately for a capsule study. I should call today and try to get whatever info I can...it makes me so anxious dealing with Drs and medical professionals now, though. I don't know what to say to communicate how wrong everything is, apparently, because it feels like none of them has taken me really seriously during this. You know, when I say I can't leave the house very often (I mean, we're talking a few times a week, for maybe a couple hours, and I am purely exhausted afterwards), I can't work, I can't even sit at my sewing machine as long as I'd like, because of the cramping pain I get if I stay sitting up and engaged long enough...is that not enough to be taken seriously? Going to the bathroom every 45 minutes from 2:30 to 7:30 in the morning, and then getting sweaty, feverish in the 10 minute nap I might be lucky enough to get in between, is that because my BMI is too high? I just feel so powerless talking to these people who are deciding my future and who seem to just not even care, at least I could understand if they seemed like they cared and couldn't do anything else, you know? The most recent ER Dr I had was the only person who seemed sorry to see me like I was. He didn't tell me that Crohns was rare or that I was too young to be this sick, just work on through the pain...he told me that he felt terrible he couldn't do more for me then, and he told me to see a GI asap. I don't even know if I realized until then just how terribly every other Dr has treated me, when just that simple action made me sob because of how touched I was. Sorry, this is totally tangent, I'm just having a lot of Feelings today. I keep trying avoid looking at/thinking about my results because everytime I just get very upset, about pretty much everything that's happened in the past 18 months.

So, so sorry to hear about your fissure, though :c Oh man I am terrified of finding blood one day...I guess it's good you know what to expect from this??? Hang in there, that sounds like the worst! Papercut pain is the worst, too, that stinging...ever had a thread cut? Shudder :c Is there anything you can do for it, or is it just a wait it out situation?
 
Last edited:
Rainbow - I have to make this kind of quick as I'm heading to the gym shortly, but a few thoughts:

First of all, stop taking advil!! It's an NSAID and it can make bowel problems much, much worse. Have you mentioned your migraines to your primary care doc? Like I said, I take 25 mg of amitriptyline to prevent my migraines - I went from having 1 or 2 per month, to now only 1 or 2 per year. It's great stuff. Is amitriptyline the tricyclic that they wanted you to try? If so, if it were me, I'd give it a try. It's been great for me. It can supposedly help with pain and can help to calm the bowels in some people, although my understanding is that it works better in that regard for IBS than for IBD. But at any rate, it could help prevent your migraines so that you don't feel the need to take advil - could be a win-win! :)

Another thing, Tylenol isn't an NSAID so it is tummy-safe, it won't make IBD worse and won't cause ulcers etc the way that advil/ibuprofen can. However, if you take too much Tylenol (more than the recommended dosage), then you run the risk of damaging your liver. Speaking as someone with probable IBD and "chronic liver disease" (benign tumors on my liver), I don't take any NSAIDS and I take Tylenol very sparingly, and like you said, Tylenol doesn't do much anyway. But it is safer for us probable IBD'ers to take than something like advil, as long as you don't go over the recommended dosage.

Night sweats - no, it's not because your BMI is too high! Night sweats are indicative of inflammation or infection. I get them in a flare too and my BMI is in the normal range right now and was in the "underweight" category when I first got sick and was losing weight.

Yeah, finding blood in your stool is horrifying especially the first time it happens. I'm prone to fissures, which usually just leave a little blood on the TP, and I apparently also have internal hemorrhoids which can cause a bunch of blood to be mixed in with bowel movements. Other than those things, I'm fortunately not a bleeder. Having said that, I've had more blood come out of my butt this year than in the previous 3 years combined (I've been ill for 4 years now). It's not fun! Usually my fissures heal up on their own after a few days, so for now I'm just trying to be nice to my booty with wet wipes and creams to help keep the area clean and relatively pain-free.

With what you described, the joint pain and the feverishness/night sweats, it sure doesn't sound like IBS to me. You get those symptoms with IBD but not IBS. I'm glad it sounds like you'll have the pill cam done soon, and I hope it is worthwhile and gets you some answers.

Fun stuff - the t-shirt quilts I made turned out okay for the most part, the second one I made has a bit of a lumpy area that I'm not happy with, but I just made it for our guest bedroom and we rarely have overnight guests, so I tell myself it's not a huge deal and I'll do better on the next one. I have some photos of it on facebook - if you're on fb, I can send you the link to my page so you can add me and see my photos. :) My favorite sewing thing to do is to buy old, cheap clothes and tailor them. I got a couple dresses for $1 apiece at a garage sale and I took one and made it cute and wearable - it had these icky poofy sleeves which I removed, the collar was ugly so I cut a slit and like tucked it under and turned it into a v-neck, and I took up the hem a few inches, etc. It's quite cute now! And all for $1 and an hour or two worth of work. The other dress, I just need to take it in a couple inches and then I think it'll be super adorable. So yeah, stuff like that - and if I mess up and wreck a garment, it's not a huge loss since I try not to pay more than a buck or two for any piece of clothing that I alter. As for crocheting, I have a hard time just sitting idle. I cannot just watch TV without doing something else, I get too antsy. So I'm usually either on the computer or I'm crocheting while watching TV.

Eek, I said that was going to be a short post, sorry! :p I'm off to the gym now, and I'm taking off of work from xmas through new year's, so I may not be on the forum a lot during that time. I'll check in when I'm able to, and this goes for anybody - if you want to add me on facebook, send me a PM with your info. (I can do facebook on my kindle much easier than I can do the forum on my kindle, so I tend to check facebook more often even when I'm out and about, so during my time off I'll likely be on fb more than on here.)
 
Ha! I always think "this one will be a short one..." and it never is :|

Ahh, I know I should - I don't take it daily or anything though, I don't notice things get particularly worse after I take it, and I don't have a primary care Dr and have never been prescribed meds specifically for my migraines. After my time with tylenol, I just won't take it anymore. It just doesn't work well enough, it never worked well on my migraines and was even less effective on my cramps (which, back then, were the worst pain I'd ever felt, glad my IUD put a stop to it - that's why I kept overdosing, I had nothing else for pain and eventually just took too much in one day. It was the worst, do not ever do it, I listened to the same song on repeat all night, if that gives any indication of what my mind was like), so I just don't feel like it's worth it. Until I get something for my migraines, I probably won't stop taking Advil for them :( I don't remember what that Nurse Practitioner prescribed me, what she told me was that it was an anti-depressant that also helped bowel problems - when we looked it up later, it was an anti-depressant that apparently could help some with bowel stuff, but it was also given to people who have anorexia nervosa, and with how she treated me through that whole appt (can't go into it, but it was the most BS I've ever had to listen to), I just wrote it off. I could probably dig up the prescription if I looked...anyway, my solution for sure would be getting migraine meds so I don't even have to worry, but until then (next year?! insurance?!?!) I can only do what I know helps with the resources available to me.

Hm, the interesting thing is that I also stopped taking it around when I realized I was having a terrible time dealing with caffeine and alcohol - I know all three utilize your liver heavily, right? I was worried there was something going on in my liver and the tylenol was exacerbating it. Now, I just figure it's stomach, intestines stuff going on (I don't think I've ever had a super normal digestive tract, but I just never realized it wasn't normal), but I still feel tentative of tylenol. Especially that it just does not operate as effectively as I need it to. Sigh, I don't know. I really do need a primary care Dr, I haven't had one since I left high school. Just ER visits when I'm in terrible pain, and then finally going in to the low income clinics when my stomach started acting up.

Yeah, I know :) I need sarcasm though! And so many Drs, nurses, etc, told me to just lose some weight first! I'll be fine! Oh......is chronic diarrhea is caused by being overweight? I didn't know!!!! But actually, I didn't realize night sweats were an IBD thing until the past couple months - I thought I was just sleeping with too many blankets or something; there's usually a couple weeks here or there where it's really, really bad, nightly, soaked through and freezing. It happens randomly every so often also.

Ohhh :( I see. I've taken to keeping some wipes in the bathroom too (I CAN HEAR MY HUSBAND STEALING THEM SOMETIMES, OMG OUT OF MY FANCY STASH) but just for in the mornings when I have to go back in a bunch of times. Hope your bleeding gets better, my goodness!

Yup :( I still consider, with my list of symptoms, the way they present, the way I feel, and the duration of time it's been, combined with the fact that they actually found any inflammation in my ileum? For me, it really feels like...like I said before, an answer. I don't know why else I would be night sweating and bathrooming and joint pain and zero appetite and pain after I eat and fats in my toilet otherwise. Could they really all be unrelated? I just don't see how that could be likely. I'm going to get a pill cam because I need a diagnosis, but I feel like I know the outcome already. I'd rather it be anything else, but it feels kind of stupid to try to deny it anymore. I was convinced they'd see nothing in my scopes, and seeing there was something made me realize I should trust myself. I really spent 3 weeks thinking, okay, you know, maybe this gastroparesis is just causing a ton of malabsorption, and I can easily get some meds for that and get on my way. And it was incredibly stupid of me, because it just hurt more again with more proof to the contrary.

Oh, fun stuff, fun stuff! I will send you a message, I'll totally add you on FB! Haha, that was my favorite thing to do when I was sewing in high school, I'd make my mom take me to the thrift store and find things to cut apart and make new ♥ Oh, especially since you don't have to worry about wasting money, like you say! Your projects sound so cute, I wish I still did that, but it's so much work these days :( Making clothes is a lot of steps and a lot of work compared to quilting. Omg, I never sit idle either!! I almost always have the tv on, but I find it impossible to just sit and watch now, I'm always cross stitching or knitting or ...on Instagram looking more crafty stuff....haha. My laptop busted so I can't be on the computer too often since it's in the other room and really now, can you see me typing this novel on my phone? So I have to get up and make an effort for it, boooo. I'm hoping for a little tablet for Christmas just so I can function online without sitting at the computer! Oh man though, TV is so boring to just watch now, I don't know how I did it all my life...
 
I'm back from the gym now. :) Booty is still bleeding, but I made it through my workout anyway. (I keep a stash of incontinence pads in my gym bag and they've come in very handy the past couple of days!)

Rainbow, if you can find that prescription, particularly if it's amitritpyline or nortriptyline, I'd recommend you give it a shot. It should be inexpensive - amitriptyline is a generic and it's less than $5 a month for me. I believe nortriptyline is a generic too, it's a very similar medication, and should be inexpensive as well. If it's amitriptyline, take it at bedtime as it'll make you sleepy. It should hopefully prevent some/most of your migraines, and it may help your digestive issues or it may not. Nortriptyline shouldn't make you drowsy so you can take it whenever, and likewise it should help prevent the migraines and may help with the guts. If you still have that prescription & it's still valid, it's worth a shot. I adore amitriptyline, I haven't had a migraine in... gosh, I can't even remember how long it's been, maybe close to a year! And I sleep great most of the time thanks to it's mild sedative effect. It hasn't done a thing for my guts, but you can't win 'em all, right? ;)

Tablets are wonderful things, I have a 1st generation Kindle Fire myself. I will say, get a tablet with a proper keyboard, as typing on the screen on my Kindle is like typing on a phone - slow, with lots of errors/spell check changes a lot of things, and it's just generally very annoying to type on it (I don't have a smartphone but I understand it's very similar, typing on a phone screen or on a kindle screen). It is great, however, for taking into the bathroom with me. :p My kindle is my bathroom buddy, I can check my facebook and read and play Angry Birds and whatever else from that lovely little thing. :) The current generation of Kindle Fire isn't very expensive, either - my niece is getting a Fire for xmas, and I know it was $139, which is quite cheap compared to the price of a new laptop.

My hubby steals my wet wipes too! In fact, I had to tell him to stop, and I had to hide my refills! One day I went to grab a wet wipe from my dispenser, and they were all gone!! Oh, I was so mad. I told him, there are certain things I *need*, and wet wipes are one of them. I know he still sneaks one from time to time but he's not using them up blatantly like he used to since I yelled at him. :p

I really feel for you guys who are overweight, it is apparently such a convenient excuse for bad doctors to blame every single symptom/illness on the person being overweight. IBD can affect anyone, IBD'ers can be any weight, being overweight doesn't cause that type of symptom. I've always been thin myself - I'm 5'8" and my "healthy" weight is about 136 lbs. When I got sick, I dropped down to 115 and I was getting close to being scary-skinny, but some doctors (particularly at my local urgent care clinic) still insisted things were all in my head, I just have IBS and I need to deal with stress better, I'm depressed and I just need an antidepressant, etc. So the lame excuses don't end even when you're starting to look emaciated, sadly. But I imagine it must be even worse if you're overweight, as you don't "look" sick (who does with an invisible illness though?). What crappy treatment, no pun intended. I hope once you iron out insurance and all that fun stuff, that you can find a doctor who takes you really seriously and isn't quick to blame everything on your weight (or on IBS, depression, etc). It's insulting and untrue to blame such serious symptoms on stuff like that.

This reminds me, I had a roommate in college who was overweight and she had asthma. She also kept losing her inhaler, so I had to take her to the ER a couple of times so that she could be treated for acute asthma attacks. At one ER visit, she was sitting there wheezing and waiting for them to do the nebulizer thing on her, and the nurse was lecturing her, "You would feel better if you lose some weight!" And I was like, okay, but right now she'll feel better if you treat her so that she doesn't die. :p Sure, being overweight can cause some health issues, and maybe her asthma would improve if she lost weight, but come on - at that moment a lecture was not the thing she needed, she needed a nebulizer so that she could, you know, breathe!

Night sweats - yep, that sounds just like me, except I get hot sweats more than cold sweats. In a bad flare, I'll wake up absolutely soaked, my pajamas are soaked and so are my sheets. When it first happened, I was like, WTF, did I wet the bed? It took me awhile to realize it was sweat, there was so much of it, it didn't even seem possible that it could be sweat! Nowadays, if I suspect I'm going to have night sweats, I'll sleep on a towel and will set out a spare pair of pajamas so that I can change in the middle of the night without waking hubby.

The liver - yes, alcohol is for sure metabolized in the liver, I'm not sure about caffeine - I avoid caffeine at all costs because it triggers my migraines, even with the amitriptyline. That's the one big migraine trigger I've found, even "decaf" tea will set me off. I can only have herbal caffeine-free tea (I've learned that caffeine-free means caffeine-free, whereas "decaf" means there's still some caffeine in it, just less caffeine than regular). I don't have alcohol very often, maybe a small glass of wine once every few months or so, just because alcohol is so hard on my stomach. But yeah, Tylenol is metabolized in the liver, and since my liver is already screwy, I just try to avoid that stuff for the most part. Your OD on Tylenol sounds scary! Too much Tylenol and you can shut your liver down completely, it's scary stuff really. But still, from an IBD perspective, it is safer for us than NSAIDs. NSAIDs, even in normal recommended doses, can cause gut inflammation and bleeding ulcers and all kinds of awful stuff. I was taking a lot of ibuprofen right before I got sick - we were kayaking a lot and I took ibuprofen to counter the muscle soreness. Never again - now when I work out, I'm happy to deal with the soreness!
 
therainbowrevolts-- It really sounds like Crohn's to me. You obviously have something systemic going on. As far as night sweats, I have gotten them multiple times per night (sleeping on towels and changing soaked clothing 1-4 times per night) for 5 years (!!) which is when I became really ill. Recently, a doctor was telling me it's because my BMI is too LOW! So, really, you can't win! (Actually, another doctor suggested that the sweats are being caused by low estrogen levels-- and my estrogen levels are very low-- and my doctor said that my estrogen levels are too low because my BMI is so low...which is because of my intestinal problems.)

If your capsule endoscopy doesn't show anything remarkable, you might consider getting a second pathology opinion-- having another pathologist read your biopsy slides-- and another GI opinion.

I can really relate to what you're going through, and I know how miserable it is. :(

Cat--
At one ER visit, she was sitting there wheezing and waiting for them to do the nebulizer thing on her, and the nurse was lecturing her, "You would feel better if you lose some weight!" And I was like, okay, but right now she'll feel better if you treat her so that she doesn't die. Sure, being overweight can cause some health issues, and maybe her asthma would improve if she lost weight, but come on - at that moment a lecture was not the thing she needed, she needed a nebulizer so that she could, you know, breathe!

No kidding!!!
 
I really feel for you guys who are overweight, it is apparently such a convenient excuse for bad doctors to blame every single symptom/illness on the person being overweight. IBD can affect anyone, IBD'ers can be any weight, being overweight doesn't cause that type of symptom. I've always been thin myself - I'm 5'8" and my "healthy" weight is about 136 lbs. When I got sick, I dropped down to 115 and I was getting close to being scary-skinny, but some doctors (particularly at my local urgent care clinic) still insisted things were all in my head, I just have IBS and I need to deal with stress better, I'm depressed and I just need an antidepressant, etc. So the lame excuses don't end even when you're starting to look emaciated, sadly. But I imagine it must be even worse if you're overweight, as you don't "look" sick (who does with an invisible illness though?). What crappy treatment, no pun intended. I hope once you iron out insurance and all that fun stuff, that you can find a doctor who takes you really seriously and isn't quick to blame everything on your weight (or on IBS, depression, etc). It's insulting and untrue to blame such serious symptoms on stuff like that.

(Mini vent; one of my endless incidents of this nature) :

I'm very underweight and before I was diagnosed, doctors put everything down to me being "anorexic", underweight and not eating enough. We can't win. If they want to dismiss our physical symptoms and tell us we're mentally ill, they will find a way. The year I graduated from university, a doctor told me my symptoms must be due to the stress of final year - he didn't ask me if I thought they were, he didn't even ask me if I find exams stressful (I don't, I'm one of those weird people who gets a kick out of academic work and exams), he just told me that was the cause of my problems. By his logic, I guess I must have been graduating from university since I was thirteen years old, as that's when I started being sick. Otherwise he'd have to come up with an explanation for my illness that didn't revolve around me being in some way mentally defective - in this case, unable to cope with exam stress.

So don't anyone worry about their weight for the sake of trying to appear unhealthy for doctors. Doctors may say that since you're fat you can't have Crohn's, but they're just using that reasoning as it's one of the more obvious ways to dismiss the possibility of a Crohn's diagnosis.
 
hi everyone! I subscribed to this thread (without posting-and got removed.. boo!) So here I am introducing myself! My name is Taylor and I'm 22yr old! So here is my story, if you care to listen...

I have had acid reflux for as long as I can remember and was finally put on medication in 2005. Since then, I have been on a number of acid reflux medicine (nexium, omeprazole,protonix...to name a few). None have worked really. With having a lot of constipation in my life, my old doctor suggested a gluten free diet and suspected celiac without testing (he is sort of a quack) so I was GF for about 2 years. He also thought this could explain why I was extremely anemic a few years ago. However,i t wasn't until the past couple months where my BMs decided to go crazy. I went from diarrhea to constipation intermittently. Along with blood and mucus. It is frustrating! Also a lot of cramping and nausea. There are plenty of other symptoms, but frankly I don't feel like listing everything. FINALLY i got a colonoscopy and endoscopy on Tuesday. The doctor said my colonoscopy looked ok, but my endoscopy showed maybe Barretts. He did take some biposies, but will not know the results until next week. Right now I am pretty frustrated because I just want to know why I am in so much pain. I was prescribed, before having the colonoscopy, an antispasmodic-which helps the pain a little.Hoping to get some support from other undiagnosed people!
 
I know I started a separate thread but I thought I'd continue here as it's more supportive around more people. Although I wish none of us were going through it at all.

After the disastrous encounters with GPs, I eventually plucked up the courage to see another GP who I had to wait 2 1/2 weeks to see. I've been able to get appointments with other doctors within a couple of days so he's obviously in demand. He did some more blood tests. Magnesium, B12 and folate are normal. My ferritin is still low though. Despite a pack of ferrous fumarate, 2 boxes of spar tone water, multivitamins and lots of high iron meat, my ferritin has gone from 24 to 26. I tried to get a zinc check but they couldn't do it at the surgery.

Had the scopes today and everything was perfectly normal. I sat and cried in a druggy daze while the nurses brought me coffee. Waiting biopsy results. I should be seeing the GI in about 8 weeks to discuss. According to my GP, the GI is considering malabsorption so I don't know why he told me he wasn't. My GP also mentioned pancreatic insufficiency. My GP mentioned giving me an IV loading dose of iron if my iron was still low. It is still low but it looks like he's changed his mind because he's not mentioned it since.

My hair's still falling out. As my iron hasn't dropped and I've been supplementing zinc, I'm trying to work out what it could be. It happened after I came off multivitamins and started being more selective and targeting the ones I knew I was deficient in. Anyhoo, I've gone back on multivitamins and extra dosing the known deficiencies. I've crashed before after doing this and my dietician said I'm missing something. It's just what am I missing? I was wondering if it could be selenium as my deficiencies seem to be ones that are absorbed in the duodenum. (That page you've got on deficiencies is a great help). But I'm guessing. But my multivitamins seem to cover whatever it is.

I've got a question, if anyone knows. After my picolaxes yesterday, my stools were brown and I was wiping yellow away. Apparently yellow is normal on picolax? Well yellow is normal for me anyway, even if it looks brown in the bowl it's yellow on the paper, so it wasn't new. Am I right that this points to issues with the pancreas/fat absorption?

I'm going to push that they consider fat malabsorption. I've lost 4.5 kg in the last 5 months. I'm also going to see my dietician who I haven't seen since summer. She's the one voice of reason in this chaos.

I've also been started on amitriptyline which I'm willing to give a go. I'm going to be mainlining the stuff by the time this is done.

Hugs and empathy to Angrytumtum. There's not much else I can say! Same boat. Just waiting biopsies. It's a nightmare.
 
AnotherCatlady- thanks for your support, I too have the yellow wiping problem, just never thought to ask about it... maybe something to bring up in the appointment. which may be soon considering my BMs have been crazy since the colonoscopy and he may have to see me soon. Sending love and support your way!

ps. I love your username, I too am a cat lady!
 
ps. I love your username, I too am a cat lady!

We are cat ladies. We are legion. We are many. :smile:

Just thought, I remember the GP briefly saying something about yellow, frothy stools with pancreatic insufficiency. Mine aren't frothy but they're yellowy. I can't get an appointment with my GP for another 3 weeks and I've got 8 weeks to the GI. I'm going to ask. If you find out earlier, let me know.

I've got to dash off. Boyfriend is trying to cook and can't find anything .
 
Been preoccupied and haven't been keeping up with things here, but wanted to ask this while it was on my mind...anyone here heard of Ehlers Danlos syndrome? It came up several times when I was trying to find something online that could explain bloody stool, livedo reticularis, and lungs going *pop* for no particular reason. Kind of an odd combo, so when anything came up at all, it piqued my interest.

Anyway, I saw a lot of references to Ehlers Danlos being associated with particularly disabling presentation of functional bowel disorder ... aka the kind stomach issues that put the "BS" in an IBS diagnosis ... so I thought I'd mention it.
 
BN-- I am familiar with Ehlers-Danlos but not enough to be of help to you. I do know that there are several types of E-D. I'm not sure what type of doctor you would see about that. Maybe a rheumatologist?
 
Merry Christmas Eve! May Santa bring us all new digestive systems....and barring that, may we find strength and peace in this new year.

Wishing you as Merry a Christmas as is possible.
 
Merry Christmas everyone, I hope Santa brings you all a reprieve from your troubles so that you can enjoy the festive season in the truest sense, take care and take it easy, be kind to yourselves. :ghug::ghug:
 
Hello everyone, I hope Xmas was kind to and comfortable for you all! I made prime rib for dinner yesterday so I'm anticipating a couple of uncomfortable days... beef tends to give me some discomfort and some constipation (what doesn't? :D)
Cat - tablets - I got a Kindle Fire HDX from my son and his wife (with hubs' help) for Xmas! yay! :) It's pretty darn awesome. I have a smart phone and a laptop but I'm pretty much in love with the tablet . I've already downloaded a couple of movies onto and linked it to my Prime account so I can watch anywhere (they got me the one with the 4GLTE). Kind of cool playing Angry Birds on a good-sized screen. (It's the 7 inch screen). I already have a Kindle that I used for reading books so I am seriously teched out!

I had hoped that with travelling, eating out more and not exercising, I might gain a pound or two over the holidays... unfortunately, turns out I dropped two more pounds and now I'm down to 130. I picked up some Boost drinks and am hoping that adding them in will help me at least maintain where I'm at. I now weigh less than I did in high school, and I'm two inches taller than I was then!
 
Back
Top