Undiagnosed Club Support Group

[quirkysoul]

There are actually a lot of people on here with IBD who don't have diarrhea. I believe it depends on the location of the disease in your GI tract.

Thank you!!!!!!!!!

I am so nervous trying to figure this all out. I guess it isn't really for me to figure out. But, in talking with a dear friend last night, Crohn's really does seem to be the only thing that fits. I'm nervous that nothing will show on the scope and I won't get a diagnosis. Sure I don't want to be diagnosed with Crohns, but it would mean I had something tangible to treat and I could move on. The last few months have been nerve wracking. I have been super duper sick 3 times in about 6 months, no energy (exhausted), had to cut back on activities, daily diarrhea, bad cramping...and all the other host of minor symptoms.

Sorry, I'm just rambling.

 

[happyballerina]

Oh, Mayflower, that's actually really good to know, because I haven't had a lot of D lately just loose stools and sometimes it's not even loose and I was beginning to think either I really don't have IBD or I'm in remission...which is encouraging in a way because I'm still seeing some bleeding. Anyway I just wanted to say that I really appreciate you clearing that up! (Why isn't there a "thanks" smiley??)

quirky -- that sounds not fun at all and I know we can all sympathize! Have you seen a doctor about all this yet? I assume you have, since it's been going on for so long.

I often feel like my food comes back up to my throat too, I don't think it's vomit but rather food I recently ate that has not even made it's way down to my stomach yet. But then again, what do I know? I don't have diagnosed GERD or anything.

When you get tingling and burning in extremities, does it feel like you have pins and needles on the skin? Or is it actually like in the foot, hand, etc.? Sometimes the skin of my toes feels like it's got pins and needles, like when your foot falls asleep only in your skin. Weird, huh?!

Good luck anyway, and welcome to the club.

 

[happyballerina]

Quirky, I was in a very similar position to you about one or two weeks ago. I was nervous they wouldn't find anything on my scope. I got it done a week ago yesterday, and they really didn't find anything.

However, CD can be anywhere in your GI tract, as all the lovely people here assured me. If they don't find anything on your scope, don't give up or think you're going crazy. There's so much other tests you need to do to rule our CD, and even then it won't be for sure.

I had a CT of my abdomen and pelvis w/ contrast done on Monday. That's just one example. I think my doctor still suspects CD. UC is ruled out unless they find microscopic inflammation from the colonoscopy biopsies.

My point is, there's definitely something going on in your body and if the scope can't figure it out, keep your spirits up that another test will figure out what it is. And, try your best to get a good doctor. It turns out it makes ALL the difference!

 

[quirkysoul]

Ugh. I am so sad that so many have to wait so long for a diagnosis. Can they not diagnosis just on symptoms alone? what do those of you waiting for the confirmation do to control the symptoms? I have "suffered" for so long and just thought, oh its IBS. I figured thats what it was until I found I had a nutrient absorption issue and my ana was on the high of normal. That was the a ok to finally accept that something is actually going on inside me. But I keep hearing it could be this. No wait, it isn't. They thought diabetes and rheumatoid. Nope on both.

The fingers and toes often feel asleep. I do get searing pain that will travel in my feet. It's like a lightning bolt going from one end to the other. It's on the top of my feet and travels to the toes. When my hands get cold and warm up (raynauds), it feels like hot pokers of a tiny gauge trying to get out through my skin. I hope that helps.

Oh, and my extremities "fall asleep" after just a few minutes. I can stand and talk to a coworker for a couple minutes, and my feet will fall asleep in that time.

 

[Cat-a-Tonic]

I'm a bit late to the party, but yes, I also fluctuate between diarrhea and constipation. Diarrhea is much more prevalent and I have that like 90% of the time, but I do sometimes get constipated either on my own or due to meds. If you read others' stories on the forum, there are even a few who have completely normal BMs but have other symptoms such as pain.

Star, good luck tomorrow and I hope you get some good news on the 25th! Keep us posted with how it goes tomorrow, I will keep you in my thoughts. As far as getting the results by the 25th, I know that for regular CT scans the results are ready in about an hour. So I would think your results should be back by the 25th if it's anything like that.

I'm not sure if the Omeprazole isn't working for me now either. Had some bad reflux last night after eating only plain rice for dinner. I was burping up acid all evening and my chest hurts now, although I have a cold so I'm not sure if my chest ache is from the cold (I feel like I do have some chest congestion going on) or from the reflux. If my cold goes away but the lung & chest pain don't, I will see my GP and figure out if I should try yet another reflux med.

Meg, as far as the itchy bottom, I get that sometimes too. You mentioned parasites - have you had your stool checked? When I first became ill, I had to give like 6 stool samples and they checked for various bacteria & parasites (all came back clear). So my itchiness is not super frequent, but it's also not a parasite, if that makes you feel any better. You should be able to get your stool checked by your GI or GP, my GP was the one who ordered my stool sample tests.

Oh, and Meg, your "extra-intestinal" symptoms sound about the same as mine! I got this GERD/reflux around December, had never had reflux before then. And when I first became ill in Oct '09 is when I first started getting migraines too. Also, I was just diagnosed with arthritis a couple of months ago. I feel like an old lady sometimes with all the weird stuff my health does! I'm 31, I'm not supposed to have arthritis!

Ballerina, that's how my reflux is - I don't really get heartburn, but I do feel what seems to be undigested food coming back up my throat. It frequently happens when I bend over forward, I can just feel it pouring up my throat. It's disconcerting. In talking with others on the forum about it, others have said that it sounds like a hiatus hernia, which is where the valve between the stomach & esophagus doesn't close completely for whatever reason, which allows food to go up the throat. Apparently that can be diagnosed with upper endoscopy, but since I just had one last year, my GI doesn't want to do another one right away (even though my endoscopy was in like August and my reflux symptoms didn't start until December). Next time you're at your doctor, whether it's GI or GP, mention those symptoms and they might want to do an upper endoscopy on you to see what's going on in your esophagus & stomach (upper endoscopy was one of the easiest tests I've had to do - no prep required, just fasting for a few hours beforehand and then they knock you out and give you great meds like during a colonoscopy).

 

[quirkysoul]

(((((((HB))))))))) I hope the doc can give you answers.

 

[Cat-a-Tonic]

Meg, I get that too with hands & feet falling asleep easily. I always thought it was due to my low blood pressure or poor circulation. My dog sat on my foot yesterday and after about 10 seconds my foot fell asleep. I put my purse over my shoulder as I was riding up the elevator to go to work today and during the elevator ride my shoulder/arm started to fall asleep! I also get the pins/needles during a flare - I always assumed it was because I tend to hyperventilate during the worst parts of a flare. I breathe so heavily through the pain that I hyperventilate and the only way to stop the pins & needles in my hands & feet is to take a nap, which regulates my breathing.

 

[quirkysoul]

Meg, I get that too with hands & feet falling asleep easily. I always thought it was due to my low blood pressure or poor circulation. My dog sat on my foot yesterday and after about 10 seconds my foot fell asleep. I put my purse over my shoulder as I was riding up the elevator to go to work today and during the elevator ride my shoulder/arm started to fall asleep! I also get the pins/needles during a flare - I always assumed it was because I tend to hyperventilate during the worst parts of a flare. I breathe so heavily through the pain that I hyperventilate and the only way to stop the pins & needles in my hands & feet is to take a nap, which regulates my breathing.

Wow!!!!!!!!!!!!! Cat, we are the same person. : ) I really do feel I fit in here. I thought I was crazy and had these little weird quirks about me this whole time. I have fainted from low blood pressure before (almost fell down my steps in the process). It's usually no higher than 115/70 and usually lower. Wow, this is freaky.

And yes, arthritis in the 20's and 30's is wrong. But, since we're at the ripe age for diagnosis, I guess it isn't wrong.

 

[Cat-a-Tonic]

Meg, when I first got my bloodwork done when I first became ill, it showed low sodium levels (the doctor told me it was probably due to the diarrhea and to "eat a bag of chips and you'll be fine"). Not long after that, I had an episode of low blood pressure so bad that I was dizzy and miserable for about 4 days. It was so bad that I had to elevate my feet so that the blood would go to my head so that I would remain conscicous! (And then of course I lost feeling in my feet.) After doing some internet research, I read something about low sodium causing low BP, so on a whim I drank (this is gross) a big mouthful of soy sauce - and almost instantly, I felt so much better and wasn't dizzy anymore! So if your BP gets really low to the point where you feel faint or dizzy, try eating something with a high sodium content. It works great for me even if it tastes disgusting! (I'm sure something else high in sodium like canned soup would work well too, I just went for the highest-sodium content thing I could think of which was soy sauce.)

 

[quirkysoul]

Sounds like a plan. I am amazed my BP is low. I love salt. I consume way too much of it. Seriously, I believe it should be a food group. Yummmmmmm! Further evidence though that my body is off and something is there.

Thanks Cat. Oh, your kitty is adorable too.

 

[happyballerina]

Arthritis in the 20s and 30s...I'm 18!! And my hips are killing me lol. Although tbh they've been feeling pretty good since Friday for some reason.

Count me in with the low blood pressure (at the doctor's last week it was 114/50!)/poor circulation and extremities falling asleep, too. The worst time was at ballet I was holding a position for a couple minutes while my teacher corrected me and my arm was over my head in 3rd position and my hand started hurting and then going numb but I had to stay there because you don't just stop what your doing because something is uncomfortable. So when my teacher told was done molding my body into the correct position and I was allowed to go back down, I saw my hand was WHITE and it was numb and i had to shake it to get some blood back in and boy did it hurt! Lol! My teacher and friend were both shocked that my hand lost all that blood just from holding a simple position!

Cat, I'm keeping a food and symptom diary, which both my PCP and my dietitian told me to do, so I am also tracking any heartburn/GERD symptoms on there and I will bring it up when I next see my doctor. I think I do actually get heartburn sometimes and not just the food coming back up thing. It's never bothered me too much or frightened me, I just kind of push it to the back of my mind. But I will mention it at my next appointment and see what she says (or he, if I tell my GI first).

Meg, thanks and i hope you get your answers soon too! I hope EVERYONE in this club does! Haha.

 

[Cat-a-Tonic]

Ha ha, thanks Meg. My cat is kind of amazing - I think she knows that I've been ill. When I first got sick and was dropping weight, she put on weight, I think my sickness was stressing her out. Whenever I'm flaring, she sits at my feet on the couch and just hangs out with me. She entertains me too by watching TV - she likes to watch stuff like Family Guy and South Park! She's hilarious.

My BP is always low and I eat potato chips like they're going out of style, so I'm also amazed that I don't have high BP with the amount of sodium I ingest. I think I must not absorb sodium well or something like that. The last time I had my bloods done, my sodium was just barely in the "normal" range so I guess I have to maintain that now and must continue eating chips! Ha ha. When the doctor first told me to "eat a bag of chips" I told my hubby to keep his hands off my chips because they're prescription chips!

 

[happyballerina]

Damn, you guys post replies too quick for me, I can't keep up

Cat, you are spot on with the sodium! It is exactly for that reason that people with HBP are told to eat a low-sodium diet. But i am the opposite. In fact, at my CT on Monday the tech told me to always drink a lot of water and eat a lot of sodium before I need to get an IV or draw blood or any needle really.

I like it because, unlike the majority of the population, I don't have to be careful not to eat too much sodium, quite the opposite! But I don't like fainting and getting dizzy, that is the worst. Then again I never know if when I do faint it's because of low blood pressure or because of low blood sugar (thanks to having an eating disorder on top of it all...but I just started recovery yippee! Actually seeing my psych today for the first time.)

I don't know if my blood sodium levels are low but I know that a few months ago they saw that my blood potassium levels were low -- another very important electrolyte.

 

[Cat-a-Tonic]

Ballerina, as far as I know my potassium levels have always been normal, probably because I also eat bananas like they're going out of style and I know those are high in potassium (I am not good at baking but the one thing I can reliably bake from scratch is banana bread so I have that a lot too). Bananas also supposedly help firm up stool so I try to eat a lot of bananas when I'm having bad d.

I didn't know you had an eating disorder, and congrats for starting recovery! I went through an eating disorder when I was around your age too. I don't like thinking about that time in my life, I was really unhappy back then. I'm glad you're starting recovery and I hope things get a lot better for you. Good luck with it - it took me a long time to accept that it's okay to gain a little weight but I'm definitely there now - before Entocort I was at about 115 lbs and now I'm at about 135 and nowadays it depresses me if I lose weight because that means the illness is winning, you know? But back in the day it would've shattered me to gain 1 lb let alone 20!

 

[happyballerina]

Yeah, it is so difficult, Cat. I'm in a strange position now, because I do need to lose weight and not just for ballet. I'm technically overweight now (although admittedly I've got plenty of muscle from ballet, so I look much less than I weigh); it's because I used to have anorexia, and then it turned into a cycle of restrict-binge-restrict, etc. So I gained a lot of weight.

I'm hoping to audition for the Bolshoi Academy next year, but I have to lose lots of weight for that. I need to be no more than 110 lbs give or take a few (I'm 5'2"). I am currently 160! Yes I know it's very heavy

Anyway the ED is the reason I keep swinging from highs and lows of weights and I'm so glad I'm in recovery now because I can't keep going like that! I need to get to a good weight and maintain it and enjoy my life and focus on ballet, not on food and my weight.

I have a proper treatment team now, a psychologist and a dietitian who are communicating with each other so that I get the best possible care. The plan is to get down to my good weight and recovery at the same time will I know will be a challenge but I'm also very confident I can do it because I want it so badly and I've always been one to get where I want to be no matter what stands in my way...so I've been put on all these restrictions, like no weighing myself (I have to do blind weigh-ins at my dietitian's office), no counting calories, etc.

But enough about that!! Sorry to hijack the thread I'm curious how many people here have or had EDs. I wonder if there is a connection between EDs and IBDs.

 

[quirkysoul]

Good luck HB! I am impressed by your drive and talents.

My arm would go to sleep and become white too if I held that position. OKay, if I knew how to dance it would. : )

I am an overeater. I figure some of what I am going through now is my doing. I did Overeater's Anonymous for a while. It was a cluster you know what of addicts. I couldn't stay. I felt like I focused too much on my disorder and thus I always felt in the disease. I was 246.4 at 5'10" last Friday. I was 159.8 back in 2007. I was a Weight Watchers leader then. I had lost 85 pounds then. Back up on the scale I have gone. I know I haven't eaten all those calories. Even when I did go back to WW, I just couldn't lose like before and would even gain some weeks, despite having followed the plan.

 

[Cat-a-Tonic]

Ballerina, no worries about hijacking - the original intention of this thread was for us undiagnosed people to be able to talk about any and all issues we've got that relate in any way to our undiagnosed illnesses. I think EDs could play a role so it's definitely a valid subject to talk about and not hijacking.

I have like zero muscles so I don't weigh all that much even though I'm 5' 8". One of my best friends is a crohnie who used to be obese before she became ill - then, a combination of diet and illness helped her drop a lot of weight and now she's the exact same weight as I am (we went garage sale shopping last weekend and saw a scale for sale, so we both stepped on and literally we weigh exactly the same! I'm taller though so I think she has more muscle tone than me, as I'm a size 6 and she's a 4). I don't think she has an ED per se but she does restrict food somewhat. Portion control is her thing - she said that she now only allows herself half the amount of food that she used to eat when she was obese. She still eats the same kinds of foods (although less fast food), just half the amount. I don't know if that's healthy or not, I have mixed feelings about portion control. Personally I need to control my portions somewhat, if I overeat at all my guts go crazy and I have awful symptoms for days or weeks. So I try to snack more and eat smaller meals more often.

 

[Cat-a-Tonic]

Meg, there was a thread I think in the "General IBD Discussion" forum about being overweight with IBD, and last I saw there were quite a few posts in there, so you might want to check that thread out too. I've never been overweight myself, but I know that there are a lot of Crohnies who deal with overweight issues. I wonder if it has something to do with where the disease is located - if there's active disease in the area of intestine where most of the calories are absorbed, I'd imagine weight loss is more common, although I don't know for sure. I do know that when I flare, the weight just falls off of me. I lost 11 lbs in my first flare, I remember weighing myself and then panicking and calling my mom. I hate losing too much, because then my constant worry is what'll happen during the next flare - will I lose so much that I need a tube down my nose or a feeding tube inserted into my stomach just to gain weight again? Thoughts like that keep me up at night! For me right now it's all about maintaining my weight and not losing or gaining too much.

 

[quirkysoul]

Ugh. I walked to the farmer's market at lunch. It's only 83 but it feels like 90. I had to stop on the way back to the office from exhaustion (and talk with a squirrel that happened by). By the time I got into my building, I was heaving. I was so out of breath and every muscle in my legs ached. I had a fresh juice (my favorite juice bar was there) and a gyro. I am feeling an attack coming on. I am so dizzy and lightheaded, and I feel like I could pass out. Obviously if I can type I'm not going to do so. But, my vision is even a little askew. I am tempted to ask my boss if I can go home. I would rather have an attack in my bathroom. And I don't have much work.

I just feel disconnected. Horribly connected to my gut that my brain is just shut off. weird feeling.

 

[Cat-a-Tonic]

Meg, sorry to hear you're starting to flare again! I hate that feeling, knowing that a flare is coming on and feeling powerless to do much of anything. Go to the doctor if you are able to, if you're in a flare then hopefully there's a better chance that they can find evidence of the illness and get you diagnosed! Good luck, I hope you're able to get out of this flare quickly. Keep us posted on how you're doing. And if you're feeling dizzy, for goodness sake go home from work! I've made the mistake too many times of letting myself get too ill while trying to finish out a work day, it's not worth it. Your body needs rest now, not work and stress. I'm sure I prolonged my last major flare because I stubbornly tried to finish out a work day even though I was super nauseous and my face had gone completely pale and I felt awful - it wasn't worth it to stay at work those extra few hours, it probably translated into a whole extra day or two of feeling ill because I didn't let myself rest when the flare started to hit, I stressed my body out instead by working. Go home, feel better, watch some movies, take a hot bath, SLEEP!

 

[quirkysoul]

Thanks Cat. Sadly, I think I'll be in the john soon. I knew what I ate was going to upset me. I figured the juice would be good for the nutrients, but its too fibrous. I got a pretty notebook last night to track food and symptoms. I have entries for 2:29, 2:37 and 2:41. I may have missed my window. Thank you again Cat.

 

[quirkysoul]

I'm going home.

 

[Cat-a-Tonic]

Feel better soon Meg! Glad to hear you're going home, get some rest and I hope this passes quickly.

 

[allieinwonder]

Wow I missed so much!

Quirky, I have fainted before too, I'm not sure if it was BP issues though. My BP is always high when I am checked at the doctor, but I do get nervous. When I faint I am nauseous right before hand. The worst time was in a gas station trying to buy a soda!

Star, good luck tomorrow! I know you won't be told the results but I hope the procedure goes well, which I'm sure it will!

I'm similar to you guys, bad d is rare, but I have loose stools all day long. They are formed, but loose and small. That's another reason I'm sure it's crohns of the small bowel!

 

[happyballerina]

allie, why would formed yet loose stools indicate small bowel disease? I'm asking because I'm in a similar position -- not any real D now but a lot of my BM are loose yet still formed and sometimes small, sometimes not. And then sometimes they seem normal!
So I'm just curious since I still wonder if I have IBD or not. I'm still waiting for CT and blood lab results.

 

[supercellbaebe]

Happyballerina I get that too! Not always, but quite often. Either that or constipation, which is an absolute nightmare.

I really hope you can feel better soon Meg xxx

 

[StarGirrrrl]

Thanks for the good wishes! I am kind of nervous that i'm not having a bowel specific CT but looking at the whole body is good and something that hasn't been done for me before. Always a small chance I have a mass or something pressing on bowels but higher up so hasn't been found before. Maybe from what they see tonight they will have me do a bowel specific CT, I don't know. Certainly having a word with them beforehand about concentrating on bowels.

 

[happyballerina]

Good luck tonight Star

 

[quirkysoul]

Good luck today Star. I know this sounds weird, but I hope they find something. I hope its nothing serious, but that you can get on a treatment plan. Good luck.

I stayed home today. I am nearly out of time off but I am tired and in pain. I am feeling severe pain to the touch on my right pelvic bone. It's lingering too. I can't wait for Thursday. Well, I can but I don't wanna.

I hope everyone is feeling ok today.

 

[allieinwonder]

I believe it's because when the disease is in your large bowel, you get the d bc your colon is trying to get rid of everything or it can't properly absorb the water. When your colon is not deseased the colon can still absorb the water, but it is flushed out of the small intestine. So you have malabsorption issues. I hope that makes sense lol.

 

[Cat-a-Tonic]

Good luck Star! I hope the scan goes well!

Allie, that makes sense about watery d vs not so watery. Sometimes my d is watery and sometimes not. I usually get pain in my LRQ which seems to be in the area of the terminal ileum. But sometimes I get LLQ pain too, not often but sometimes. So I wonder if that means I have both small intestine and colon involvement? When I was on Entocort, I know that just works on the terminal ileum area, and that period of time was when I noticed the ocassional LLQ pains. I never fully got into remission on Entocort either. I think it helped my terminal ileum area but my colon was possibly still diseased/inflamed. My CRP was 17 during the last month I was on Entocort so I still had some inflammation going on. It makes sense to me that I've got ileo-colitis or something like that. But, if I've got illness in both ileum and colon, shouldn't one or the other or both have shown some sign of illness on one of the tests I've had??

Meg, I know the feeling of using up all your sick time, I did that in 2009 and 2010 and I will probably do it again this year. If you haven't already, you might want to apply for FMLA (Family Medical Leave). It's protection for your job, meaning you can't be fired for being out sick too many days. It doesn't give you any more paid sick days, you would have to use unpaid time once you run out, but at least your job would be protected. I just re-applied for FMLA, I had it in 2010 but for some reason my GI put on the form that my condition may or may not be permanent. So I had my GP fill it out this year and he put that my condition is definitely permanent. You don't need a diagnosis to get FMLA, I was told that all they really need to see on the form is that you have an ongoing serious medical condition. I think all of us here qualify for that!

Ballerina, you might want to call and ask about the CT results. When I had mine done, I was told the results are ready in about an hour although it usually takes a day or two for the doctor to actually review them (the radiology techs aren't allowed to say what the results are). Give your doctor a call, they should be able to tell you the results.

 

[quirkysoul]

Thank you Cat. I will talk to HR and the doc. How are you?

 

[Cat-a-Tonic]

Meg, I'm doing okay all things considered. I have a cold but Dayquil is keeping things mostly under control. My guts are not too bad today. But I'm a little stressed because I might have to fight my insurance company over a charge. Something got screwed up somewhere along the line and they are being iffy about paying for my husband's ER visit a couple months ago (he has kidney stones - side note, we cannot afford for both of us to be sick!). If the insurance doesn't pay for it, then I'm going to be stuck with a very large bill and the thought of that is getting me stressed! I did as much as I could, so I just have to wait and see what happens with the ins company. Everything's still "pending". I hate waiting, it's so stressful! And I hate medical bills too! At times I've considered filing for bankruptcy just to make the bills go away, although I know it's not quite as simple as that.

How are you feeling today? Better I hope? Eating bland low-fiber foods or just doing a liquid diet for a day or two? Hopefully you're resting and relaxing and doing better. Good luck with the FMLA too, I found it's a pretty easy process (the first time I applied it was difficult because I tried to have my GI fill out the forms, but apparently specialist doctors "don't do paperwork" or that's what I was told, so this time I had my GP fill it out and he was great about it, so if you do apply just go right to your GP and not your GI!).

 

[Cat-a-Tonic]

Star, I think with the time difference you must be having your scan right about now or maybe got done with it a little while ago - thinking of you, hope all went well! Hope the wait to get the results flies by quickly too!

(Sorry if I got the time difference thing wrong, I think the cold medication I'm on is hindering my ability to do simple math in my head!)

 

[StarGirrrrl]

Don't worry you were right first time! It went fine although I had a standard CT with contrast die and not an FDG-PET. Took longer to get the cannula in than the actual scan lol, she managed to tap a vein in the arm which hasn't happened in years, I was very impressed. Going to have a lovely bruise. Only freaked out a little when they connected the dye machine but only because I was expecting an injection.

Something did seem weird though afterwards. She did seem serious and was sorting out the cannula (just came out of scanner and still on bed), and the Radioligist came in and spoke to the radiographer, something about had she called for a check, which she replies yes but either of us (the other radiographer) will be happy to do it. Just very strange he came right into the room like that, never had that happen in all my various scans, they always stay in the background supervising!

Been a bit sneaky too, haven't told Rheumy i'm seeing GI in the hopes he calls me in himself or sends report to GP like I asked as really don't want results from GI.

 

[TheMrs]

Star, will you have the results soon? i hope so!

I saw the Rheum TWICE yesterday (once was my appt, once was for my son) at the first appt, she confirmed that the prometheus test showed i'm not metabolizing the Imuran properly, so I wasn't getting enough. She increased my dose to 250 and then said if that doesn't work in like a month, they would try Humira or another anti-tnf. when I went back with my son later she had consulted with the GI and they decided to up my pred back to 20mg because of the vasculitis, and that if the increased Imuran doesn't work, they are sending me to Hopkins for evaluation.

She said that since I have features that are similar to Lupus, as well as to IBD, that anti-tnf can cause a flare in someone with Lupus, so they didn't wanna make things inadvertently worse.

It makes me feel very anxious, I'm afraid to go to Hopkins and have THEM say they have no idea what is wrong with me, or set me back to square one or be dismissive as previous docs have been.. She (the rheum) told me again that ALL my docs at their practice (I have four- rheum, pulm., gi and GP) agree that this is something autoimmune, it just doesn't fit in a neat box. That reassures me a lot, but i had a lot of years of docs acting like i was nuts or hysterical or something, and I'm gun-shy I guess.


forgot to add: I will stay at 20mg for two weeks and start SLOWWWWWWLY tapering, and I will NOT taper when we'e in Israel. I will go with extra prednisone,cough/pain meds, to have just in case.

oh yeah, and i've LOST seven pounds in the last couple weeks. :O I am THRILLED, but I know it's cause I was so sick and now that they bumped up my pred im gonna have to try super extremely hard to not gain it back.

 

[Cat-a-Tonic]

Star, glad to hear you made it through and I hope your rheumy or GP can give you the results. From what you've said, your GI sounds like he likes to ignore/re-interpret abnormal results, so if the GP or rheumy get to the results first they could hopefully give you a more accurate report! Keep us posted on what you find out from the results of the scan.

The Mrs, it's good that at least you have access to treatments like Imuran and Humira, the most I was able to get put on was Entocort, my GI won't put me on anything stronger than that until I get diagnosed. He won't even put me back on pred (although I suspect he might if I were REALLY bad, he said that for someone undiagnosed the most he'd do is 10 or 20 mg a day for a couple of weeks).

Have fun in Israel! I am kind of a chicken about travelling and I don't know if I'd be brave enough to travel out of the country like that, but I did go on vacation within the US a couple months ago and I was so proud of myself for being brave enough to go. I had one or two rough days out of the whole week, but for the most part my health surprisingly behaved itself. I hope yours behaves too!

 

[TheMrs]

Cat it took a lot of years before I got ANY treatment at all. I'm really happy with my current team, if I'd quit relapsing I'd never even consider going elsewhere. My d is typically very responsive to steroids, I just hate the side effects!

For the trip I'm most nervous about the long flight. I hate going in public bathrooms!!

 

[StarGirrrrl]

TheMrs I have a GI appointment (and Cat you are so right about him) on the 25th May. But before I got that I emailed Rheumy and said in the past i've been kept waiting for results and this time call me in sooner than my next appointment (July 20th), or send the report to my GP and let me know. So hopefully I will get the results from whoever within a few weeks.

By the way, I came up with a pretty perfect comeback when a CD diagnosis is confirmed. I will say to GI "Are you diagnosing or do you want me to do a Pill Cam after all to confirm"- haha!

 

[Cat-a-Tonic]

The Mrs, I don't know if I should tell you this as it's kind of horrible, but coming home from my recent vacation, as we were getting back into Wisconsin our flight hit a TON of turbulence and some bad thunderstorms. I ran to use the bathroom one last time because I knew they were going to turn on the "fasten seat belts" sign and I wouldn't have another chance to go before we landed. I had to hold on to the toilet for dear life, the plane was going up and down and up and down! Then I had to pop several Zofrans just so that I wouldn't barf because the turbulence made me so nauseous. I had gone on vacation with my parents (apparently I'm a masochist), and when I returned to my seat looking very pale, they both handed me their barf bags in case I needed them (I must have been so pale that they thought I needed both bags). The flight was so horrifying, I'd never been in turbulence that bad before. As scary as the flight was, I was more nervous about needing the bathroom again and/or needing to vomit than I was about the fact that we could crash, get hit by lightning, etc. I'm not afraid of death as much as I'm afraid of embarassing myself in front of everyone with my awful symptoms! Ha ha. Seriously though, it was a really miserable experience. I'm not afraid of flying but after that experience, I'm not keen on flying anywhere again anytime soon! So I hope your flight is far less eventful than my flight was! Even though public bathrooms are awful, at the first sign of turbulence get your butt in the bathroom because you don't know how long that "fasten seat belt" sign is going to be on for!

 

[Cat-a-Tonic]

Star, ha ha, that's a good comeback! I personally envision myself crying, laughing, and hugging everybody when I finally get a diagnosis. Like how people act on TV when they win a big cash prize, I expect that's how I'll be! Jumping up and down and screaming and just an outpouring of emotions. Then I'd probably call everyone I know and tell them the good news, starting with hubby of course and then my good friend who has Crohn's (she waited a long time for a diagnosis too but not as long as I've waited), and then my mom and my grandma. And then I'd probably go shopping for party supplies so I could have a big bash celebrating my diagnosis, ha ha! Yes, I've had way too much time to think about how I'm going to react when I finally get diagnosed.

 

[StarGirrrrl]

Also unsurprisingly 6 weeks in not responding to IBS meds still. Really going to push to come off them, I will take for another month if he insists but that is my absolute limit. My Grandad recently nearly died from being prescribed too much medication that he didn't need!

I was reluctant but I agreed to try and not working so now I get to call the shots. I've shown willing and enough is enough.

EDIT: Cat, here in the UK The Queen gets a state birthday and her actual birthday. Henceforth I will have two birthdays, diagnosis day and actual birthday!

 

[Cat-a-Tonic]

Star, I was given IBS meds at one point too and I was told to try them for 3 days, and if they did nothing then I was allowed to try pred for 5 days. Well, of course the IBS meds did nothing (it was an anti-spasmodic, so actually I kept the prescription because it works okay on my menstrual cramps, but other than that it doesn't do a thing for me). 3 days was enough for me to tell that it did nothing, I can't believe they're making you try those meds for 6 weeks!

By the way, the IBS meds I was given to try were forced on me by a doctor who was 100% sure I have IBS. I repeatedly told him no, I don't have IBS and here's why, but he insisted anyway. I had to basically beg to try pred and he only agreed because I finally said yes, I'd try the IBS meds first. If IBS meds aren't doing a thing for you, you should think about asking for a trial of pred. I did 10 mg per day for 5 days, not long enough to do any damage or cause side effects, but certainly long enough for me to know that pred definitely works. I kid you not, within the first hour of taking my first pred pill I noticed more energy, and by the end of the first day my symptoms had nearly vanished. I felt like a million bucks, and more importantly, I learned from that experience that I've got something that responds to pred. So at the very least I narrowed down the list of possible illnesses (and definitely ruled out IBS!). Just something for you to think about, I know that steroids are not for everyone but a short trial might give you some valuable insight like it gave me.

 

[Cat-a-Tonic]

I missed your edit about the state birthday and actual birthday, I love the idea of birthday and diagnosis day! I still remember the first day that my acute symptoms hit, October 9th 2009. That's like a day of mourning for me, ha ha.

 

[quirkysoul]

Have fun themrs. I hope the new course of treatment works for you.

Star, I'm glad it went ok and I hope you get the results soon.

Cat, I have to go back and read your post. But, I do hope you feel better!

I am glad I stayed home. I had to get my prep script filled and had a coupon at target. Got ten dollar giftcard and ten dollars off the script. I bought a pair of pants. I needed something to make me feel special. Haircut Tuesday. My right pelvic area is so sore and swollen. I have no ovary or uterus so I know its not that. I have been doing a sort of BRAT diet. Mainly been in bed. Ran errands early and baked cupcakes late. Oh, thats my catering bizness. Have 5 dozen to deliver tomorrow night. Every time I bent over, I hurt. Just a little loose d. I don't feel constipated. No fever. If this doesn't get better I'll call my pcp as the gi is out til Monday.

Thank you again for welcoming me here. It feels good to be able to talk about this.

 

[StarGirrrrl]

I am not keen on steroids but would give them a try.... my GI however is very unlikely to offer!!

 

[quirkysoul]

I am still in pain. My right side of my lower abdomen is swollen. I'm at work but do not feel good. I broke down this morning. I lost it. I just couldn't take it. Thursday cannot get here soon enough.

 

[TheMrs]

I'm sorry I hope you find some relief soon.

 

[allieinwonder]

Yeah, it does make sense. I would imagine your disease would be in the terminal ileum, but I really have no clue lol. I am with you, I don't understand why the tests haven't shown anything. my pain is the upper left, which at first they though was the top portion of my colon and now they think it's my small intestine. What really bugs me is that my docs say my CRP levels are perfect... The hospital said they were slightly raised but not enough to count anything. I don't know of anyone else with pain up there, but it's not IBS pain... It gets worse after going to the bathroom, and its Not a Camping pain- it feels like there is a gaping hole in my stomach.

I Hope the results for your CT come in Star and Happyballerina!

My Test is in 3 days! I am praying that it finally shows the issue. If not my GI will definetly not refill my tramadol, and i only have 16 left. i don't Know what i will do when i have severe pain where i cannot move!

 

[Cat-a-Tonic]

Meg, whenever I have to pick up a prescription I usually tend to buy myself a little gift to make myself feel better too. I tend to buy nail polish because it's cheap and pretty and I can paint my nails even when I'm stuck on the toilet. But now I have sooo much nail polish that I can't buy any more as I've run out of room! I keep my nail polish in a box and the box is full, so now I've got to figure out a new little gift to get myself when I'm at the pharmacy.

Oh, and Meg, part of me wants to say that I hope you feel better soon, but since you have an appointment on Thursday, the other part of me wants to say that I hope you stay unwell so that your doctor can see evidence of your illness and get you diagnosed! So either way, I hope one of those things happens. In all seriousness, if you get any worse, especially if you get a fever or start vomiting or anything like that, please go to the ER. The swollen abdomen sounds pretty serious, definitely don't wait until Thursday if this continues or worsens.

Star, like I said, I had to pretty much beg to try pred. And, the doctor who prescribed it for me was a GP, not my GI. So your Rheumy or GP might be willing to try pred on you just to see if it works. If it works, not IBS - and then you could go back to your GI and say, hey guess what, pred works! He shouldn't be able to argue with that one, every doctor I've talked to, even the bad ones who thought I have IBS, have agreed that pred only works if there's something autoimmune such as Crohn's/colitis for it to work on. So, my two cents is that if I were you, I'd ask my GP or rheumy about the possibility of trying a short run of a low dose of pred. 10 mg made a huge difference for me and that's a really low dose.

 

[Cat-a-Tonic]

Allie, there was another thread about CRP and someone there said that about 10% of IBD sufferers don't have any change in CRP when they flare - it stays in the normal range. Personally when I've had my CRP tested twice, once when I first got sick and was flaring, and it was normal. And again, a few months ago when I was on Entocort and feeling okay, and my CRP was elevated! So it's raised when I'm good and it's normal when I'm flaring? I intend to get it checked more often as that might have been a weird fluke, but at any rate CRP is not a very reliable test to go by.

Best of luck on your SBFT in 3 days! Keep us posted on how it goes and what results you get! Fingers crossed that it either shows signs of IBD or that it says you can have the pill cam!

 

[quirkysoul]

Thanks Cat, I have been thinking the same thing. I want to ensure they see something tangible that can answer what the heck is going on inside me. In fact, I want that for all of us here. You gals are really nice and I want us to all get our diagnoses.

I spoke with a nurse at the new doc's office. I feel like this is happening so fast, yet not fast enough. I am on a clear liquid diet today. Hmmmm......She is getting the list of symptoms to another doc in the practice as mine is out still. I wonder if I will be going in today. I hope it isn't anything terrible. I have commitments I have to make tonight and tomorrow. But, my health is most important.

Tee hee, that must be some nail polish collection. You're cute Cat. Maybe you could buy earrings or some cute stickers. Lip gloss. Just some ideas.

 

[quirkysoul]

I thanked the wrong thread. Oops! Refresh hadn't shown up on my end.

 

[quirkysoul]

Doc's office says I should go to ER. Urgh! I don't want toooooooooooooo!!!!!!!!!!!!!!!!!

 

[happyballerina]

I haven't been on here in half a day and I miss a whirlwind of new posts!! Lol!

I just really wanted to say,

TheMrs -- You're going to Israel?? I'm from there!! That's awesome, are you just going for a vacation? Have you been there before?

 

[Cat-a-Tonic]

Meg: Yeah, I noticed there isn't an "un-thank" option if you accidentally click the wrong message to thank. No worries though, I don't mind collecting an extra "thanks".

I have pretty much every shade of nail polish available at this point, ha ha. Sometimes my friend will come over and we'll ooh and ahh over all the nail polishes and we'll each pick out a bunch of colors we want to try out. And we'll paint every nail a different color so that we have these weird rainbowy nails. In fact, when I had my CT scan my nails were each a different color, and the (male) radiology tech complimented my crazy childish looking nails. I felt like a dork! Ha ha. As for your suggestions, I also have several dozen lip gloss, although I don't have many stickers or earrings. I'm not sure if they even sell earrings at Walgreens though, and I'd probably just give stickers away to my nieces. Hmmm. Oh who am I kidding, I'll probably just buy more nail polish anyway. Gotta replace the ones that are a couple of years old and starting to get icky, right?

I hope you're able to get in to the doctor today and that whoever you end up seeing can help you out. I always dread going to other doctors while my doctor is busy or away. It's always a crapshoot, I've ended up with terrible docs and also with really good ones. I hope you get a good one and that they can help you out and tide you over until Thursday! Good luck, let us know how it goes and how you're doing!

 

[Cat-a-Tonic]

Meg, that sucks, I wouldn't want to go either. Are you able to go to something like an urgent care clinic? I always like going to those much better than the ER, the waits are usually shorter and the bill is usually smaller. They can do IV fluids and prescribe meds and all that stuff at urgent care - the one I go to, I was once told they handle pretty much everything but heart attacks and births. At any rate, I hope wherever you go that you get some relief! Feel better soon!

 

[littlemissh]

Not caught up here for a while...
Quirky soul - good luck with your er trip, lets hope you feel better soon.
Cat, where are you now with your plan of action..I've become befuddled over it, whats next with your plan now you are off entocort etc. Have you a GI appt.
Starr, lets hope your results show something
Alienwonder I hope your tests also show something,not long now.
not forgetting The mrs and happyballerina.

 

[Cat-a-Tonic]

Little Miss H, don't worry I'm a bit confused too! Yes, I have a GI appointment for mid June, and at that appointment I plan to ask him to schedule more tests. I haven't yet had SBFT or MR-Enterography, so I will ask for him to order one or both of those. In the meantime, I have a couple of physical therapy appointments coming up at the end of May and beginning of June so that I can learn how to exercise my arthritic hip. And that's really all I've got as far as a plan of action.

 

[quirkysoul]

Thanks everyone. I am going to bite the financial bullet and go to the ER. Luckily, I am almost to the point where things will be covered. Ick, egads I am.

 

[Cat-a-Tonic]

Good luck Meg, give us an update later and let us know how it went at the ER. Thinking of you and hoping you get some relief!

One thing I learned from when I took my hubby to the ER recently - bring a book, an ipod, a portable DVD player, whatever you've got because the wait might be long. Hubby got a bed right away but then it took the staff several hours to be bothered to start an IV and try to figure out what was wrong with him. He was having a kidney stone attack and it took hours for them to even give him pain meds or IV fluids! So, long story short, bring stuff to distract & entertain you in the event that there's a wait.

 

[littlemissh]

I agree with cat, take something to do. Also phone/mp3 charger . The mp3 is great for blocking out noise at night. I made a playlist for nights when I am in - it's a godsend and turns off when it finishes. After just getting out after a few days my ears are a bit sore though - take soft in ear headphones.

 

[TheMrs]

good luck Meg!

HappyBallerina, we are going for vacation, the kids and I have never been, my hubby's been twice but the last time he was 14. My parents (also first time), in laws, SIL and hubby's cousin are also going. it's not til the end of June, but it's my timeline for feeling BETTER.

 

[happyballerina]

That's awesome! Where will you be doing and what? You will love it -- but a fair warning, it will be HOT and HUMID

 

[littlemissh]

Themrs, here's to hoping you are feeling a lot better with your increased meds by the end of June. Fingers crossed....and legs, though a lot of people on here have those crossed most of the time anyway!

 

[StarGirrrrl]

I am wondering if the meds may be working slightly- I think sometimes in the morning I am slightly constipated, it is much more of an effort and painful to go. No improved pain, appetite, energy, nausea (although I do feel the benefit of stopping the Spasmonal, was the right choice). I did also realise Pringles were causing my daily D. So back to where I was really before latest meds, whereby I can go a few weeks without an attack or have several in one! But always with the pain, nausea, poor appetite 24/7.

But not enough to tell GI or want to continue with the pills. When I had the Amitriptyline 4 weeks and boom- I was feeling great! Hungry, more energy, better bm's, the works. Kind of supports my theory I have CD and the meds worked before because the inflammation was smaller so it relaxed things in there for a year or two, but now am too far gone. The SSRI i'm on now is supposed to start working after 2 weeks and i've been on for 6 so will push GI to come off end of the month.

Feeling rough after my CT, the most activity i've done in ages and it was at a time i'm normally asleep. Obviously my ME/Chronic Fatigue is shot to pieces now. Went to bed with pain and woke up a couple times with it but managed to breathe, relax through it and not run to the loo, going back to sleep. That came this morning!

 

[quirkysoul]

Feel better star.

They didn't find anything yesterday. I got done around 8:30. I got some good pain meds. They gave me bentyl and vicodin.

I meant to tell everyone. There was this comedian Chris on the last comic standing. One of his jokes was about how you can pee and not poop but not the other way around.

 

[allieinwonder]

Thanks Cat. The reason I mentioned it was the continuous tests that are normal: the blood, biopsies, and endoscopy/colonoscopy. Its just interesting that there are percentages of people with IBD that get normal results, but then people like us somehow fit in those small percentages in every test! Just insane! lol

Quirkysoul, I'm sorry the trip didn't seem to help much other than the pain meds. I'm going to have to try and find that joke! lol

 

[allieinwonder]

So a few hours after I replied I had a very eventful an awful night. I had a salad with poppy seed dressing and dried cranberries for dinner, just a small one, since my SBFT is two days away and I want to make sure there is something to see (since IBS wouldn't make that salad cause any damage!). Well, for a good three hours I felt nothing: no pain, no D. I was confused, thinking maybe I didn't eat enough or maybe my flare was subsiding. Well, at about 9pm the pain hit so bad I couldn't see straight. All I remember was my husband giving me a tramadol, with me being hesitant since I really don't like taking it...and then I blacked out. My husband says I was conscious, scratching my eyes, then I passed out, and he thought I had just fallen asleep. He says I woke up, he got me a little more comfortable but then I passed out again. I remember waking up after that, feeling very drugged and messed up, freaking out since my husband had gone into the bedroom and two hours had passed with me having no memory of it. I can't sleep on tramadol because it lowers my seratonin levels too low, so I've been up since. At about 3am my time the pain went high again, on top of already having tramadol, and again I couldn't see straight. Hubby, again, gave me tramadol in my daze and I am now feeling better. We are both wondering if I either have a really narrow area thats causing this or maybe even a partial blockage...either way, I'm really hoping the SBFT shows why this happened tonight. I cannot believe I blacked out, twice. IBS wouldn't cause this, right? Your body wouldn't shut down from untreated IBS...I just don't see how that is possible.

Anyway, I'm now not going anywhere today...I'm staying right here on this couch and sleeping/resting for my big day tomorrow at the hospital. And drinking lots of water because I didn't drink much yesterday and had LOTS of watery D. yuck. I was suppose to help out at the theater on base (I'm doing sound effects for a play that opens on Thursday) but they know I am ill and will understand. I hate letting them down though.

On top of this my friends dad was hospitalized for a blockage last night. They are in Atlanta and I felt so bad for him! Of course my friend is texting me telling me I need to get better too. He thinks if I took stress out of my life (like being an army wife) that I would just magically get better. I don't think it works that way unfortunately!

I hope everyone has a good Sunday, or for those in the states has a restful Saturday night.

 

[quirkysoul]

Feel better Allie. And I agree, ibs wouldn't do that. Rest and take it easy on yourself.

Still in pain. Spasms are more severe, even on bentyl. Taking the vicodins but worried they'll back me up. I seem to be getting them every 10-15 minutes.

 

[allieinwonder]

Thanks quirkysoul. I try not to be hard on myself, the biggest question on my mind during times like these is whether its crohn's or IBS (since IBS has no treatment...please be crohn's so I can get this to stop!)

Tramadol can back me up, and the way I help is I either take stool softeners along with it (docusate) to counteract the side effects or I don't take the tramadol for a long time in a row. For example, I took one Friday during the day, and was able to recover the backing up part yesterday before the blacking out pain hit. I only take it when absolutely necessary, because its either be in a ball in pain or be comfortable. One pill shouldn't back you up too bad though! You also have to drink lots of fluids! I hope you feel better soon too!

 

[supercellbaebe]

Allie, that sounds absolutely horrendous. I really feel for you having to deal with that. Good luck at the hospital I really hope they can find out what is causing this.

One thing I would say, Cranberries which you had on the Salad would have caused tremendous problems for me, they contain Quinine. I can't seem to handle anything with this in at all. But that's because I have major Liver problems and the quinine and other sour foods causes too much blood to surge through the liver at one time, causing a huge amount of pain and swelling.

If you don't ,ind me asking, where about's is your pain? What type of pain is it?

I really hope you eel better soon chick,

xxx

 

[allieinwonder]

I'll make note of that, thanks! My pain is always in the same place, upper left quadrant right under my ribs. I know that is an odd place for crohn's, which is why I'm hoping the SBFT shows why I'm in pain there. I have eaten dried cranberries as a snack before, and have been fine. There was spinach in the salad and also seeds from the poppy dressing. Both have been known to hurt me...so I believe that was what did it.

To be honest, I kind of did it on purpose. I want that SBFT to show something, and if it does, last night will be worth it. I have three mouth ulcers at the moment, and one of the best rheumys in Atlanta told one of my best friends that if you have ulcers there you have them somewhere else. I just wanted to ensure they will stick around. I need treatment and I need my GI to realize I am physically very ill!

 

[StarGirrrrl]

Sorry you had a bad night too allie I see exactly where you are coming from re tests and hoping things won't improve, I did have some pain Thursday but not as much as i'd have liked!

I had something for lunch that obviously didn't go down well since at 7pm I was in the toilet, lost count of how many times, 2:30am was my last trip. Very painful and horrid cramps, was very watery too, and had to finish my meds during attack with just a sip of water and that set it off all over again. I hate when I get so bad water sets it off.

 

[Cat-a-Tonic]

Allie, sorry to hear you're feeling bad again. I hope you feel better soon. I'm the same way today unfortunately, feeling crappy. I don't get it, I didn't eat anything yesterday that would have caused this and I didn't overdo it, I spent a lot of the day just resting on the couch watching TV. I felt okay yesterday but today the d, cramping, weakness and nausea have hit me kind of hard. I took some Lomotil and Zofran to try to get things under control. I don't think I'm flaring because I get night sweats and joint pains in a flare, and I don't have those symptoms yet. So I don't know why I'm feeling this way, if I'm not flaring and did everything right yesterday! My stupid body is so confusing sometimes.

Meg, I hope you're feeling better soon too. I concur with the others who have suggested taking stool softeners with the vicodin. I have to take stool softeners when I take Lomotil or it backs me up for like a week. So I just popped one Lomotil and two stool softeners. I take Colace and that seems to work pretty well. It doesn't cause d like dulcolax would, but it does seem to prevent constipation pretty well.

And Star, you're feeling poorly too! This must be one of those things, like you know when you have a close female friend and sometimes your periods sync up? I think all our guts are syncing up, ha ha. We're all having a bad day today.

Heidi mentioned the cranberries on Allie's salad - Allie, were they fresh or dried cranberries? I read on the forum that dried fruits are super hard to digest and can sometimes cause blockages, so if they were dried that might be the source of your pain and passing out. I've never had a partial blockage as far as I know, but I think I did pass out once during my first (which was also my worst) flare. I was so so dehydrated that I laid down in bed, and I was so light-headed, and the next thing I knew I woke up in a panic and it was 2 hours later. It didn't felt like I fell asleep, I seriously think I passed out and came to a couple hours later. It was awful! I can't imagine doing that twice due to pain. Allie, I really hope this SBFT shows something! If you're this bad, it can't not find something, right? Keep us posted on how it goes, will be thinking of you and hoping for some results for you! Fingers crossed, best of luck! And I hope you start feeling better - don't eat any more salads!

 

[allieinwonder]

Wow, we are all bad today. That is kinda weird, lol. I hope you both feel better soon!

And yeah, they were dried...hmmm, I didn't realize they could be hard to digest! It was probably everything just combining I guess to do that..I learned my lesson. I have passed out before, while at a gas station..I started to feel nauseous, and was trying to check out as fast as I could, and next thing I knew I was on the floor looking up at my husband! Scary...everyone at the check out freaked out, and my husband acted like it was nothing to keep them calm and took me to the car.

Yup, prep (which is just no water/food) starts in about 3.5 hours, then I start my drive in about 9! It will still be Sunday in the states lol. Just ready to get this over with!

 

[StarGirrrrl]

I hate nil-by-mouth prep but when it's an early morning test is much easier, just a case of not eating/drinking when getting up! Good Luck!!

I am officially freaked out today. I passed blood for the first time. It was a tiny speck on TP but it was there, not on the surface but in the poop Knew it would happen one day. Guess I will email GI tomorrow ahead of appointment on the 25th and ought to mention just had the CT I suppose. *sigh* I really hope results get sent to GP/ called in to Rheumy beforehand as I do not want results from GI. Finding the wait hard going. Seems to get harder after every test.

 

[afman]

egd/colonoscopy results egd found gastrits again and several biopies normal , found nodules but how is it normal when they find something? same thing with the colon found nodules and multipile bioposy came back clean, found internal; and external hemmies. they are really hurting latley. had small bowel follow through so far normal pill cam to be schedule next week. being put in my scope since last 2 wouldnt leave my stomach.

 

[littlemissh]

Blimey, you lot are having a rough time. It's bad enough feeling like that when being treated but it was somehow worse having to have to put up with it with no diagnosis and therefore no treatment. I really hope you all get sorted asap.

 

[littlemissh]

Interesting article on the general board about ct enterography/pill cam and the undiagnosed.

 

[StarGirrrrl]

Yes I saw that, a very interesting read.

Well finally dawned on me earlier that I am in an actual flare, which is why things so bad yesterday/today. I have symptoms on a daily basis but this is something else, had one or two before so once I realised the signs were obvious! If no better tomorrow will start on the lopermide which is how I usually bring myself out. Not ideal but I need food inside me.

 

[Cat-a-Tonic]

Allie, good luck with the prep and test! It's about 3:40 PM here right now so I assume you'll be leaving on your drive soon? I've still got a cold so again not quite able to do the math in my head in regards to the time differences!

Star, I've had bits of blood on the TP here and there too. For me it was always because of anal fissures, and mine are always small and have always healed on their own. But since it's a new symptoms, definitely do mention it to your doctor, just in case it isn't a fissure.

Little Miss H, I haven't seen that article yet but I'll check it out. And I'm doing a bit better now. I loaded up on lomotil and Zofran and decided I wasn't going to let my guts ruin my weekend, so I took my crohnie pal to a movie. She was having some issues too so she also loaded up on Zofran. It was really fun to get out and I'm glad we both went even though we were both not very well. Now I'm back at home and trying to rest although that's not going very well, my brother is in a mood and he's lecturing me that I need to exercise and clean more (???) and that he doesn't understand why I am on this forum all the time. He's talking out his ass and it's bugging me! Think I might have to take the dog for a walk or something, he's driving me nuts. They say you can't choose your family and "they" got it right! Urgh.

 

[StarGirrrrl]

Thanks Cat I will be emailing GI tomorrow. I don't feel like I have a fissure (although things are sore down there), and when I have had them in the past, the blood streaks on the TP, outside the poop. This was more of a spot inside

 

[Cat-a-Tonic]

I hope you get it figured out, Star! And at any rate, it's more ammunition for your argument that it's not IBS, as you do not get any blood with IBS!

 

[StarGirrrrl]

I hope you get it figured out, Star! And at any rate, it's more ammunition for your argument that it's not IBS, as you do not get any blood with IBS!

Yes I sure hope so. Although raised CRP, pain all the while, positive WBC scan, night attacks etc, have not convinced GI to shift his attitude yet though lol! Hoping my bloods will be done again since I stopped my iron supplement awhile back to see if levels would still be normal without it (I wondered if a supplement might mask a bleed). If he won't then I am sure my GP will, I want my CRP monitored in any case since GI has stopped.

 

[quirkysoul]

Holey moley guacamole. Yesterday was a bad day for a lot of us. I hope everyone is feeling better today. If not, hugs and take it easy.

I spent yesterday in bed, save doing a load of dishes in the dishwasher. I ran some books back to the library and had to speed home to make it to the potty in time. It hit me like a ton of bricks. The pain is still there in the LRQ and is persistent. Spasms aren't as bad, but its there. I have been journaling and keeping track of food and symptoms. I'm starting to feel alone in this. In my physical world. I am struggling with needing to talk about it, needing to release the thoughts, but who to talk to and will anyone understand and/or know how to handle it.

Oh well......it'll all work itself out.

Oh, I had the weirdest thing yesterday. I had some peas on Saturday, well one came out yesterday. But it wasn't green. It was white. It was like it was coated in something. I could see a little green in the center. It was so weird.

 

[quirkysoul]

What movie did you see Cat?

 

[quirkysoul]

Pearl Jam's lead guitarist has Crohn's.

http://multivu.prnewswire.com/mnr/ccfa/48998/

 

[Cat-a-Tonic]

Allie, best of luck today! Thinking of you, hoping the SBFT finds something!

Star, I stopped taking my iron supplement awhile ago too. It always seemed to upset my stomach even when I took the "slow release" kind that is supposedly easier on the tummy. As far as I know my iron levels were still on the low end of normal the last time they were tested. But then again, I don't bleed except when I have fissures, so I wouldn't expect my iron to be too low.

Speaking of fissures, I'm having another bad day. Already had d 3 or 4 times this morning, each time is getting worse. My first poo of the morning was like a hard plug of poo. It was so hard that I felt myself tear a little bit when I was passing the hard plug, and now I have a new painful fissure. After passing the plug, it's been d which has gotten more watery and less formed with each movement. The last time I went, it was like burning acid. Not fun! I'm having cramps, pain, nausea and weakness too. I don't think I'm in a flare, yet. I don't have joint pains, I haven't had night sweats, and my face hasn't gone completely pale yet. Those things are all signs that I'm flaring, so I don't know what I would call this. Not a flare but definitely not well.

I hope you guys are doing better today. I was hopeful that I was on the mend after I made myself get out of the house yesterday, but I think I'm worse today. I hope you all are better and not worse!

Meg, the movie we saw was "Bridesmaids." It was actually really funny - based on the previews, I was expecting it to be dumb. There were scenes that were kind of gross (one in particular where the characters got food poisoning was really gross) but overall it was pretty good. I liked it.

 

[quirkysoul]

Allie, how did it go?

(((((((Cat))))))))) I hope you feel better and fast. You poor thing.

I have heard good things about Bridesmaids. I love Kristen Wiig.

 

[StarGirrrrl]

Yep Allie we are all keen to see how things went today

More blood on TP for me today, similar to yesterday, must email GI.

Seems like we are all having a crappy time of it (pun intended!).

 

[quirkysoul]

(((((((Star))))))))))

 

[Cat-a-Tonic]

Star, I hope your GI can figure out the cause of your bleeding quickly (and takes it seriously). Maybe if he hears that you are bleeding he'll move up your appointment so that he can look into the cause of the bleeding and also give you the scan results quicker. Good luck, I hope you are able to get some answers on that soon!

Allie, hoping to hear from you soon! Thinking of you, hoping everything went well. I'm personally looking forward to an update because I haven't had SBFT yet and am curious to hear your experience with it.

Meg, I missed your earlier post about the pea covered in white stuff. Did it look like mucus? I get mucus frequently, it looks like somebody blew their nose into the toilet. If it happens again, especially if you think it was something other than mucus, you might want to take a photo of it. I know, gross, but that way you can show the doctor what you're describing. I've heard of others on the forum telling their doctors that they've pood blood or other weird things, and their doctors blew it off or didn't believe them until they were shown a photo. Star, if your blood is visible, you might want to take a photo for your GI as well. Your GI sounds like a piece of work who might not believe you if you say you've passed some blood, but it'd be harder for him to ignore photographic evidence.

 

[Cat-a-Tonic]

BTW Meg, I like the profile pic!

 

[quirkysoul]

I thought about that Cat. I really did. I just didn't get my camera phone. I took pills of my belly when it was swollen. It looked kinda slimy. I hear you describe our fissures and I wonder if I have had them. It hurt really bad yesterday, my whole body was heaving. And it was loose. I wonder if that was because I have a fissure. I just don't know. You're all so much more experienced at this. Aren't you happy about that? : )

That's a really cropped image of me baking. I had to crop it way down so it would be the right size. It kept telling me the upload failed. The control panel lies. All lies I tell ya! Thanks cat.

Oh, I meant to tell you Cat that I tried your pasta, tuna and mayo concoction. Its a new love! I added the thawed peas to that. Yum! Thanks for that.

 

[StarGirrrrl]

Thanks guys I have now emailed my GI, I am due to see him next Wednesday anyway. If he won't take it seriously then it'll be time to see another GI at local Hospital (even though with good cause I believe there is a conspiracy there to write it off as IBS, not wanting to contradict the previous diagnosis) until it becomes clear whether or not I need a fresh look at case in London.

Complaints service meeting is still in progress but when we do meet with them an independant review of my case is going to be one of the things we ask for, all assuming CT comes back normal.

I have been expecting blood for awhile now and in some ways although it's horrid it's rather a relief in some ways.

A photo is a great idea and usually have my camera phone close to hand. It is a very small spot I have seen twice though, not sure it would show up well but I shall try.

 

[Cat-a-Tonic]

Meg, I've never gotten my fissures diagnosed by a doctor but that's always what I presumed they were. It feels like a small cut or tear in my anus/rectum and it hurts and sometimes there's blood on the TP. The fissures I've gotten have always healed on their own. I've gotten the fissures for many years, wayyy before I was ill with any other symptoms. Since they always healed on their own and never caused other problems, I only mentioned them to my GI recently, and he acted like it was normal to have fissures with everything else I've got going on. So it's just another annoying symptom to deal with, that's how I view them.

And I'm glad you like the tuna/pasta/mayo concoction! That's a lunchtime staple for me and I can usually stomach it during a flare too. What were you baking in your profile pic? I got ambitious on Saturday (before I started feeling bad again) and I bought some new cookie sheets and baked a bunch of cookies and also banana bread. I'm not much of a baker but I can handle banana bread and cookies. It was so cold here on Saturday and it felt so nice to fill the house with warmth and the smells of delicious things baking.

Star, I know what you mean about expecting blood, I am the same way. I haven't bled yet apart from the fissures, but it's something that wouldn't surprise me if it did happen. I hope there isn't a conspiracy to diagnose everyone as IBS, but in a way that would make sense to me - it must be cheaper for the NHS to treat IBS than IBD, right? I hope that isn't the case but given the behavior you've described of your GI, I can see how that could be the case.

At any rate, I hope the complaint/review process goes well (I also hope that your scan results show something informative, although if I were you I'd still lodge a complaint anyway even if the scan did result in a diagnosis - you've gotten some shoddy treatment and that's not right!).

As for me, my symptoms are feeling similar to when I had gastritis - my pain is higher up today, just below the ribcage. I'm also having a weird new symptom, which is pain in my abdomen/stomach whenever I flex my abdominal muscles suddenly. I had to cough earlier today and a bad pain hit me as soon as I finished coughing! Awful! The same thing happened after a sneeze a little while ago. This is new for me. If it keeps up or gets worse I will put in a call to my GI. I'm not scheduled to see him until something like June 20th but maybe he could get me in earlier or give me advice over the phone.
Edit: I just blew my nose and the pain hit me again. I'm thinking it's not when I flex my muscles but when I exhale sharply that causes the pain. The pain isn't in my lungs though, it feels like it's in or near my stomach. Anybody else get anything like this?

 

[Mayflower537]

Sorry every

 

[Mayflower537]

Sorry everyone is having a bad Monday. I am too. I have had cramps and D for the first time in awhile and it was really fun b/c we are on vacation and were at the zoo all day. Probably too much fatty restaurant food, even tho I have tried to be careful b/c I do think excess fat sets my guts off. Plus I am on the rag and have a UTI. I have called my GP and my GYN to get one of them to call something in for me for the UTI but so far I've heard nothing from either. Anyway I hope all of us have a better Tuesday than Monday.

 

[Mayflower537]

Oops didn't mean to double post there. Stinkin iPhone...