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Thanks Nathan. As far as I can tell, none of my meds make me more prone to ear infections. I input my symptoms into WebMD, and that site suggested I either have an ear infection or a wax buildup/blockage in my ear. Upon further reading, apparently if you use q-tips every day to clean your ears (I do), you can actually push wax back further into your ear and over time create a blockage - and even though the blockage forms over time, the hearing loss/dizziness/etc can come on rather quickly over just a day or two, like my symptoms did. So, since I am a regular q-tip user, I'm thinking this might be the case for me (or at least I'm hoping it's this rather than an infection), so I'm going to go get an earwax cleaning kit and try that first. I found one that gets good reviews so I'll be off to the store tonight to pick one up. From what the reviews say, I should know pretty quickly after using the kit if it's a wax buildup or not, because large gross amounts of wax should come out of my ear when I flush it. Ick! But hopefully that happens, if not I'll be at the doctor tomorrow to check for an infection. Wish me luck! And hey, on the bright side - whatever this is, infection or blockage, I'd rather have it happen in my ear than in my guts. ;) So I guess I can't complain too much!

So Nathan, have you tried the popcorn experiment yet? You say the joint pain has subsided, which is good, hopefully that means you're coming out of a flare. You mentioned nausea though and I recall you saying in the past that nausea isn't a regular symptom for you. It nausea happening more frequently for you now? Do you take anything for it? I take Zofran (actually I take the generic, which is Ondansetron, but same thing) and it works wonders for my nausea. If I take too much then it can sometimes constipate me, but otherwise I get no side effects from it, and it works really well. I wish it worked more quickly, as it usually takes 20 or 30 mins to kick in, but otherwise I love the stuff. I took some this morning in fact because the dizziness from my ear was making me nauseous, and it made me feel a lot better. Anyway, I'm rambling again. I hope you feel better soon (and avoid popcorn!).
 
Cat - sorry you are having such a tough week. We've had years where my hubby has been out of work and it is so hard to get through.

Being totally selfish - I'm hungry!!! I hate clear liquid diet almost as much as doing prep.
 
Thank you Scrapnteacher. :) My hubby just applied for a job that sounds promising - he submitted an application and a sample of his work to a company that makes cell phone games/apps (that seems to be the hot field right now for video games, nobody's playing console or computer games anymore, everybody's playing games on their phones and ipads) so fingers crossed that he gets a call back on that.

Ohh, and I feel for you, clear liquid diets are soooo boring. Last time I did one (while prepping for the pill cam), hubby made me chicken broth from scratch - he stewed chicken thighs in the crock pot all day, then he ate the chicken and I drank the broth. But even that wasn't enough and I was still starving - I think the worst part is watching other people eat real food while you can't have any! :( It's one thing to feel ill and not want to eat anything, but when you're told that you can't eat anything solid, that's when you suddenly become ravenous for real food. I can't remember, are you having a scope soon, is that why you're doing a clear liquid diet? At any rate, I hope you're able to stop this soon and have some good yummy food again. Hang in there!
 
Cat- for future reference instead of Q-tipping your ears every day, put a couple of drops of olive oil in (followed by a plug of cotton wool) a couple of times a week. It softens any wax and allows it to drain naturally, then the cotton wool soaks it up.
 
Thanks Rebecca, in my googling it sounds like there are various oils that can help break up ear wax. Tea tree oil was mentioned a few times but I don't have any of that - I didn't know olive oil would work too or I would have tried it last night. I tried a few other things I read online, chewing gum (didn't work) and tilting my head from side to side (felt like it worked a tiny bit for a short time). I even read one account of a person saying that they heated their ear wax with a hair dryer! I actually tried that one too this morning while drying my hair, but it was just too hot and I couldn't keep the hair dryer on my ear long enough to have any effect. I'm going to go to the store shortly and get that ear wax cleaning kit (it contains carbamide peroxide which seems to be very good for breaking up wax), and if it doesn't work then I will try olive oil too. Something's got to work! Or if nothing works then I will call my GP first thing tomorrow and try to get an appointment. And I will try the olive oil thing in the future instead of just using q-tips daily. Thanks!
 
Cat - my sister-in-law was talking this weekend about 'candling' your ear to soften the wax so it comes out on it's own. Not sure how that works, and as much as I am a klutz, I would surely set my head on fire!

I'm having the pill cam tomorrow morning. I love you guys, but I'm hoping to leave the undiagnosed club!

Good luck with your ear, I hate it when I get that. I think because we live in the midwest and the weather changes so often and in extremes that we get more of that funky air pressure. I know it wreaks havoc on my sinuses!
 
Scrapn, I actually tried ear candles once about 6 or 8 years ago. It didn't work, and when I googled, there seemed to be contradicting reports but the general consensus appeared to be that candling actually tends to add more wax to your ears rather than remove it. Which is fine because I didn't like putting something lit that close to my head, like you said I was afraid my hair was going to catch on fire or something! It was a weird sensation too, the ear candles I got were hollow so they kind of acted like sound amplifiers, and all I could hear was the sound of the candle burning which was freaky, like a weird sizzle sound but really loud, and it was hot too. But apparently there's wax in ear candles and although the burning funnels heat down to your ear, it melts your ear wax but it's got nowhere to go AND the wax from the candle funnels down into your ear so you end up with more wax than you started with, I believe that's the gist of it anyway from when I had googled it years ago.

And yes, the changes in air pressure drive my sinuses nuts too! Usually my ears are fine but I get barometric pressure headaches when the weather changes, and that makes my sinuses very unhappy. I go through a lot of generic Claritin and Tylenol sinus trying to make my sinuses feel somewhat normal. I broke my nose when I was a kid and it was never set right and as a result it didn't heal right, and I've had sinus issues ever since - not sure if it's related or just coincidence.

Good luck with the pill cam! I had that one done myself a couple years ago but unfortunately I still find myself officially in this club as my pill cam didn't find anything (unofficially I've been told by both GP and GI that it's IBD, and I'm being treated as such and I respond very well to IBD meds, but no official diagnosis yet as no solid evidence of IBD has been found on any of my tests). I'll never kick anyone out of this club, you're welcome to stay and chat with us even if you do get diagnosed (people like Allie stick around the club even though she's got Lupus, and some other people have stuck around the club even if they get diagnosed with IBD or if they accept an IBS diagnosis). So, I hope you get diagnosed, and you're certainly welcome to "graduate" out of the club if you do get diagnosed, but you're also welcome to come back here and chat with us anytime. :) Lots of luck tomorrow and keep us posted on how it all goes!
 
Cata-

Hopefully it's not an infection, but usually ear infections aren't too bad, and self limiting. Probably since you haven't got so much pain it isn't an infection, but can't be too careful.

Heh, nausea wasn't a normal symptom of mine. Whatever it is, it's spreading and involving more locations. Basically my progression has been, needle pain in lower right 2.5 years ago for a monthish, remission, hedgehog pain in lower right 2 years ago for a few weeks, remission, moderate burning pain and pressure/discomfort + burning hedgehog last year for about eight months and a needle in my mid-left, remission, then this flare, constant lower right pain, hedgehog pain in mid left, and, at the worst of it, near constant nausea.

I mentioned the appearance of nausea to my doctor last time I visited. She prescribed me something for it, but I never bothered to get it filled yet. Mostly because it's just a bandaid solution for possible reflux, so whatever, I'll fill it eventually, but I doubt it'll do anything.

Plus, I've got a freaking great track record for stomach medicine, every single one I've tried (once in high school when I had nausea, and once at the start of my first major flare, as a shot in the dark) has triggered headaches and done nothing for my issues.

Heh, whatever, live and deal, that's life. October is the day that matters, and that doc will be dealing with a determined Nathan.

Finally, some good news, I've got paid for my summer job, and I'm free to say now that I am debt free! Paid down my visa, put a bit in the bank, and I'm going to take my girl out for dinner. Also got a decent check coming from tips from my last job that I quit a few weeks ago. So for the first time in a year, I've got my head well above water. Not really rich, but great not to be living on my credit card, not working on the balance at all. It's a good feeling, even though I knew it was coming, had my budget done squeaky. Basically, my parents had helped me pay down my visa twice the school year, thinking I was not in control of my finances, but after all is said and done, I will be ahead almost exactly the amount they helped me by.

It's these times I'd love to be cocky enough to say 'told ya so'. :p

Enjoy
Nathan
 
So I got the earwax cleaning kit yesterday and used it on both ears (I figure if one ear got plugged, the other might not be far behind). And I think that worked pretty well, the ear that was plugged feels much better although not 100% yet, but definitely a solid 90% better. I'm going to clean my ears out with the kit again soon so hopefully that'll get out any remaining gunk that's still in there. But yeah, I'm doing a lot better now - headache is mostly gone, I'm not dizzy anymore, so the nausea is gone too (guts are still a bit crampy, but I am due for my period any minute now so I'm going to attribute the cramping to that).

Nathan, congrats on being debt-free! I probably won't ever be debt-free, ha ha. We have a mortgage, hubby's student loan, credit card debt and of course the never-ending doctor bills. Good for you for being debt-free, now the really hard part is keeping it that way!

What nausea meds did you try in the past? When I first got sick, they prescribed me Compazine. That stuff is so awful! It didn't work for my nausea, it made me really dizzy (even more dizzy than I already was) and then after I tried taking it a few times, it constricted my breathing which was scary. I felt like my chest wouldn't expand and I couldn't take a full breath, and that lasted for about 24 hours. After that experience, I will never take Compazine again and I had my GP write in my chart that I'm allergic to it. But, not all nausea meds are the same, as Zofran works great for me and I can still breathe when I take it. ;) So try to find out what you had taken in the past, and see if you can get something else for the nausea. My #2 least favorite symptom is nausea (vomiting is #1) and I just cannot function when I'm nauseous, so at times I practically live on Zofran.

Scrapn, how'd the pill cam go? Now's the long wait for results - when I had my pill cam, they initially told me I'd have the results within a week. When a week passed and I hadn't heard anything, I called to see what was going on. And the nurse I spoke to said, "Who told you a week? These results take about a month!" So don't expect the results back super quickly. Apparently your doctor needs to look over all the images, which can take hours, before you get the results back. I think it ended up taking a little less than a month, probably about 3 weeks or so, for me to get my pill cam results back. Anyway, I hope they don't make you wait too terribly long, I hope the results are worth the wait, and I hope everything went okay with doing the pill cam itself. Hope you were able to eat some yummy food today too after you got the cam down! :)

I hope everyone has a good weekend. I probably won't be on the forum much if at all for the next week as I've got a training class I have to go to for work which is going to take up most of my time. So I hope everyone is doing okay! Big hugs to all and I'll "talk" to you later!
 
That is an inflamation of the lung. They don't know what causes it, but my friends husband has it right now and they put him on a steroid pack. I had never heard of that before. I have pain under my left rib and it goes around to my mid shoulder blades and is very painful. I was diagnosed last year with crohn's in ileum and an ulcer in colon. But, the nausea and diarrhea went away after 6 weeks on entocort. I did great until a month ago and diarrhea came back. My gastro put me on cholestyramine. It forms bulk and really works. But, that pain under my left rib is killing me. Anyone else get it? By the way, I was diagnosed with IBS for years and just by luck the last colonoscopy found the ulcers when I had a flare. I had had a stomachache and headache everyday for a year. I have also been diagnosed with fibromyalgis and myosis and arthritis now too. My hair is half what it used to be. Started taking biotin everyday to stop hair loss and it helped. I hope this helps someone who is not diagnosed as yet, Eventually it will show up.:medal1: Teresa
 
Teresa again-corssroads,
I am on the cholestyramine once daily, you mix it in with a drink and it forms bulk. I take vit.d3 three and fish oil everyday. Plus antidepressant effexor for fibromyalgia. Vicodin for pain when needed. Lorazepam 1 mg. to sleep and for when I get anxious. Blood pressure meds. Inderal for essential tremor. I think that's it.
 
I wrote this up a few days ago, but then I lost it and got frustrated, so that's why this seems late lol.

Cat, wasn't that test interesting? I retook it to see if I got similar scores from when I took it two years ago. And I absolutely did, I'm very likely an Aspie. Did you happen to download the breakdown of your scores. In the social section I got a low score which is indicative of social phobia, I got a 0.4 out of 10! That's pretty low! It's all pretty interesting, also I got the dyslexia one too, which I already knew I would.

How is everyone else, I didn't read through the recent posts, I hope everyone is okay. My appointment is monday! I'm nervous but so happy to be under the care of a doctor again. My honey has work so I'll have to take myself. I hope the heat isn't too much, it's early in the morning, but that doesn't mean anything to the desert, it's almost too hot for me when the sun is down! I think I'll take my cold compress with me, just to be safe. I don't want to faint or freak out while driving. And I haven't driven since my tremors started, so we'll see how they work when driving a standard.

Weird thing happening to me while on the toilet. I don't know if its a symptom or not. When I got to the toilet, especially if I'm having a bm, I forget if I peed or not. Just plum forget. I'll try to pee, because I can't remember if I did or not, and nothing happens, but I honestly can't "feel" if I've urinated already, like I have an empty bladder, I just can't tell. So I have to get up and look. And yep, I did pee... but have no memory of it, even though it just happened.

It has happened to me twice in the past couple of days. I'm not sure what to make of it. My memory has been bad lately, which is unusual for me because I have photographic memory. I don't know what to make of it.
 
Cat - pill cam went well. I woke up yesterday with a headache probably from lack of sleep and food. I picked up a diet coke on my way to work after so at the stroke of 10 I could chug it! :) Lunch was heaven after going without so long, but the headache made me nauseous. I had my hubbie drive me to take it back. She told me 1-2 weeks for results. With school starting on Monday, I'll be too busy anyway. But...I was so tired and had the headache that I never ate dinner, zonked out at 6:30 and slept for 14 hours!! Today was pretty good, went to our family reunion (lots are from your area actually) but now I'm hurting a bit. Tomorrow is a new day and I have lesson plans to write!
 
Dear Chell,
Do not feel guilty about taking pain meds. That is why they exist. People just don't understand until they've been there. My sister made a comment that she doesn't think I have crohn's because I haven't lost much weight. My diarrhea is under control with the cholestyramine my gastro put me on. But I still have pain and eye pain and headaches and joint pain.Pain under my left breast alot. Take care of yourself and don't worry what the boyfriend says. He doesn't sound very sympathetic. Are you sure he is the right one to be with right now? I am thinking of you and hope you will feel better soon. Teresa Ps. I'm new here.:rosette2:
 
Dear Gculk,
Don't eat the popcorn! That is the worse thing to do. Take magnesium and you will go. That always works for me. Or drink juice, grape usually works. Teresa
 
cat-

Good that your ear's a bit better! Hopefully it doesn't give more trouble.

I have no idea what they had me on, as I remember though it was just to reduce the acid in the stomach. Not specifically for nausea.

Yeah, it's pretty slick having actual money to spend, instead of credit, can afford to relax for a bit, rather than running it so close to the edge, especially with how I was working so few hours during the school year.

I've gotta disagree with you, my #1 disliked symptom is no appetite. :p Couldn't be bothered about pain, nausea sucks, but I don't puke so I ignore that too. Don't even mind having shitty symptoms, but the whole looking at food and wanting to throw it in the garbage gets on my nerves.

723- It's not a cure for constipation, it's meant to be a fibre challenge. Once I get my current symptoms reduced significantly, I'll possibly do a fibre challenge to see if it induces a relapse.

Not even sure if I'll do it, just an option I'm considering to help rule out IBS, or if I'm feeling better before my GI appt, to make sure I feel like shit then. I'll go nuts if new GI tries to shoo me away.
 
Hi peeps! Im on my mobile (so just a quick msg)
Had my colonoscopy today. bowel prep went well (had picolax)

the procedure went well with just entinox
took just 3 biopsies - particularly around the site where my appendix was removed... as they found a tiny patch of inflammation of the mucosal lining. The doctor thinks this is just a small infection around the scar tissue from the appendectomy

will update soon.. and get to my laptop so i can catch up on everyone's updates! Xx
 
Hi, everyone. I haven't been here in awhile and so I'm sure that I've missed a lot. Not even going to try to catch up. Probably 20 pages I haven't read.

I think my GI issues are getting going again. I have had a few acute episodes in recent weeks and even a couple with simultaneous vomiting/d, which hasn't happened in years. The stomach pain seems to induce the nausea and vomiting, but I'm not completely sure. That's always been my theory. I had an episode that woke me up last night and kept me up a good 45 minutes retching into a trashcan until everything in my colon decided to finally come out. I still feel a little bit weird (maybe dehydration?) this morning and still have watery D. Ugh ugh ugh. I don't want to call my GI again, but if this keeps up I surely will.
 
I have received diagnoses. Chronic pancreatitis, venous insufficiency and Diabetes. From what I know, the pancreatitis is causing my diarrhea as I can't digest fats. I am newly diagnosed with the diabetes, so I do not know how the pancreatitis will affect the control of the diabetes. I caught it early. The chronic pancreatitis won't go away which means I will always have the possibility of digestive issues. I feel like this is a Chrohn's diagnosis. The symptoms are so similar, it is just the pancreas and surrounding orgnas that can get damaged, not the bowels. I can take pancreatic enzymes, which do help, but they cost over $600/month. I have no known cause for this, except I started having digestive problems very early on in life. My mom go thepatitis when I was an infant, and she was breast feeding. I think my immune system went crazy then.

I am 35. This is too young. But, I won't focus on the negative. I have answers and I can move on from here.
 
Quirkysoul - im so sorry for you diagnosis. but like you said.. you've got some answers now. and fingers crossed your doctors can make a good treatment plan with you to relieve symptoms. all the best! :hugs:

@nathan - i hope i get some answers too! How are you doing today?
 
Quirky

Ouch, sounds tough. Can/are they treat the pancreatitis? Best of luck!

Bozzy-

I'm goodish. Pain, but not too bad, was not really good the last few days, mostly nausea with moderate pain until yesterday.

Yesterday was kind of funny. I had pizza, with hot peppers for lunch, then went out for dinner with my girlfriend, lots of spicy stuff there too. I love it.

Lets just say that my constipation problems came to a rapid and dramatic pause after dinner. :lol:

Nathan
 
And I apologize if my comment that this feels like a Chrohn's diagnosis was offensive. It isn't Crohn's and Crohn's can be so much worse. And I am functioning, whereas many Crohn's patients are not. I only said that because the symptoms are so similar. I hope I didn't offend anyone.

I am so relieved to finally have the diagnosis. I still wish I knew why this has happened, but that doesn't matter so much. To be chronically told you're fine when you are dealing with chronic pain and symptoms is so challenging. I know all of us fit this. I was about to go back into therapy, just to help deal with the stress of no one able to figure out what was wrong. I feel vindicated.

I think the pancreatitis I just have to deal with. The body doesn't release the right enzymes, so that's what the script is for. I have free scripts the rest of the year, so I will stock up and take only when I anticipate a problem.

I checked my sugar this morning as I was having severe right lower quad pain. I was 205. I wonder if this pain the last 19 months has been from diabetes. I am not going on insulin. I do not even want to go on pills. I will control this with food.

A low residue diet has gotten my bowels in check after my flare. Yes, I am still getting flares. I am able to eat some veggies now! : )
 
Good! I'm glad you got a diagnosis. I know how you feel! Anything other than 'it's all in your head' is a huge relief. I wish I could get that relief! Haha

Fair enough on the enzymes, hopefully you won't need em too much.

I don't want to tell someone what to do, but with regards to insulin, it's no failure of yours if you want to use insulin until you have got your blood sugars under control normally. Honestly, it would probably make it easier, as high and low blood sugar tends to cause hunger as a primary symptoms. It's up to you, just saying.

Hopefully with your other issues getting dealt with your flares will go away!

Good luck
Nathan
 
I'm here! Sorry for being away for most of this week, I was in a training class for work. Now I have to catch up on all my work that I wasn't able to do while I was in class! Eek! I'm taking a breather from that right now, so this will have to be a short message (but knowing me, I will probably ramble on anyway and write a 10,000 word essay, ha ha).

Meg, so happy to hear you have a diagnosis and a plan in mind for how to treat it! I hope you're able to treat the diabetes with diet alone, but don't write off the pills completely. My grandfather has had diabetes for many years, as long as I can remember, and he successfully treated it for most of that time with just pills alone (after he had a cardiac arrest, his kidneys failed and his diabetes got worse too, and now he takes insulin shots, but to be fair he only took pills up until he was 75 - he turns 81 this year). Anyway, so happy to hear you have some answers! I hope you can juggle these illnesses successfully and with a minimum of trouble.

May, so sorry to hear that your symptoms have come back again, I was really hoping you were one of the ones who truly had "just IBS" but it sounds like maybe not, especially if you were woken up by symptoms. :( You know the drill already, call your doctor! I know you don't want to, but at least call or email your doc and get his opinion, even if you don't set an appointment right away. (As my GI says, an appointment costs money but a phone call is free.)

Speaking of my GI, I had an appointment with him this morning. It went really well! I never know what to expect from him and he always surprises me, sometimes that's good and sometimes that's bad. We talked in-depth about my GERD issues, as I feel like Nexium may be losing effectiveness. It worked so great when I was first on it, but slowly the GERD issues are starting to come back and I'm getting the vurps more often, refluxing more particularly when exercising, etc. My GI said it could be a hiatal hernia, which is my suspicion, or he said that some people don't have a hiatal hernia but for whatever unknown reason will just have a more relaxed valve between stomach & esophagus, so it could be that too. And when I told him about how I rarely get actual heartburn - instead I experience the feeling of water/stomach contents coming up my throat and the feeling like vomiting is imminent, and vomity burps and so on - he said in that case it may be a gastric emptying issue as it doesn't sound like an acid issue. He started me on a new prescription (metoclopramide, which appears to be the generic of reglan - anybody know about this med?). He says it should help my stomach empty better and I shouldn't bloat out as much after eating (another big issue for me, which I didn't realize could be related to my GERD) and I shouldn't reflux as much. He started me on a small dose, 5 mg a couple times a day, and I'm to keep a close eye on any side effects. If no side effects, then the plan is to increase the dose of reglan and slowly reduce the reflux meds - I'm on 40 mg of Nexium, and it only comes in that one dose - if all goes well, I'd ideally go back down to 20 mg of Prilosec/omeprazole. That would be good, so I'm hopeful that this plan works. Wish me luck!

Yep, that was longer than I anticipated, ha ha. Back to work for me, no rest for the wicked! :p I hope everyone else is doing okay, big hugs to all.

Edited to add: I forgot to say, if the reglan doesn't work or if I get adverse side effects from it, then my GI's plan is to do gastric emptying and stomach acid ph testing to get a better idea of what's causing my GERD and what's going on in my stomach. So either way, there's a plan, so that's a good thing.
 
hi cat! glad your doctor is trying different meds. hopefully they'll help :)

may - have you got in touch with your doc about the night time episode? like cat said - that is a BAD sign (if the vomiting and big D isnt enough on its own!)
 
Hi May - thanks for the update and I hope the enzymes help. How did they diagnose the pancreatic insufficiency? My son had this tested when they thought he had Cystic Fibrosis. His stool test was not low enough for the PI range, but was not as high as normal people. He tried Creon for one month (I could not believe how expensive it was!!!!) It did not solve his problems, but helped reduce the severe cramps he would sometimes get. I hope it helps you a lot!!
 
May, let us know what the doctor says. How are you feeling today, any better?

I'm on day 2 of this new medicine (reglan) and I think it's working. My GI said I should note any and all side effects I experience. When I took my first dose yesterday, I noticed that about 15 minutes later, it felt like my heart was beating more quickly (it was like I had been exercising, but I had just been sitting at a desk). That went away after a few minutes though and I haven't felt that today, so maybe it was just a fluke? On the up side, I do feel less bloated and I'm belching less. The big test will be to see how I do in the gym, as my reflux is always worse when I exercise. I'm going to the gym this afternoon so wish me luck!

How's everyone else doing? Anyone have fun plans for the weekend? I'm hoping to go kayaking again as it was so fun to go paddling last weekend, but it's up to hubby too (we have a two person kayak so I can't go out alone, the boat is too big for me to paddle/steer by myself!). If he's not interested then I think I'll go on a bike ride. Anyway, big hugs to all, I hope your tummies are behaving themselves.
 
Dear Cat,
Hope you get to go kayaking, that sounds like alot of fun! Good exercise as well. It's supposed to be in the 90's here tomorrow in western PA. so we probably won't be outside. I burn and can't take the heat. I am very fair. Hopefully we can have some good alone quality time, teehee, been awhile with hurting so much. Have a great weekend!!! Teresa
 
I'm okay today, Cat, thanks. Yeah, I'll call him here in a bit. :/ I feel like it's going to be a waste of time, but we'll see...
 
Hey everyone. I have again gotten completely behind. I feel terrible about it. :( I am going to try really hard to keep up with you guys. I haven't been on my computer much lately, way too much has been going on.

My appointment last week was a nightmare. Literally, it went a way I never thought it could go, not even in a worst case kind of scenario. First, all my blood tests came back completely normal, including ANA. Well, that makes sense a bit, I'm on meds to make those blood tests come back normal. Well, my new Rhuemy doesn't see it that way. He thinks it isn't autoimmune at all. >.< He took me off my prednisone and plaquenil, and he wants to see me in 4 to 8 weeks to do the tests all over again. I burst into tears when he said this...I told him I don't have the strength to shower any more, to sing, to even walk long distances, how am I suppose to keep going on no meds? He was sympathetic but didn't change his mind.

The next part is what REALLLY blew my mind. I haven't told anyone but my husband and parents about this, because I do not want to scare anyone. They found a tumor on my liver on the CT scan. The radiologist suspects it is a benign tumor, called a hemangioma, but I have my doubts because I don't see how that kind of tumor could have just popped up in the last 8 months. Remember, I had a CT Scan last October. I have actually had 4 in the past two years, and this is the first time they have found this mass on my liver. The radiologist has said I need more tests to confirm that it is benign. I have done some research on hemangiomas, and they aren't suppose to cause symptoms, but if they do the symptoms are decreasing appetite and severe abdominal pain. I have both of these symptoms as you guys already know. So I am going to be asking, more like begging, to have surgery to get this mass out. I have heard they rarely do anything about hemangiomas but if there is any chance this thing is causing some of my symptoms I want it gone. My husband and I just hope it isn't cancer.

My Rhuemy also talked about doing exploritory surgery to finally see if there is anything causing my abdominal pain that ey advent found through another test. I will be urging this as well. Maybe I can get them to take out the tumor and do the exploritory survey in the same go, that would save me some recovery time.

The worst part about all of this is my weight. I'm about 100 pounds now, when I should be about 120. The weight started dropping off of me a couple months ago and it won't stop, and it got faster around a month ago. My husband has been forcing me to eat all these high calorie foods and it isn't helping. Plus when I eat I can only eat a few bites, and I only eat a couple times a day. I rarely eat lunch or dinner anymore, and I never eat both in one day.

Anyway, that's it. They also had me come into the clinic all week this week for a 5 day blood pressure test, because they think I now also have high blood pressure. My father has high blood pressure, so I'm not surprised. But I know it's only high because I'm in so much pain, but they just see the numbers on the machine.

Cat, my social anxiety is a lot like yours. I have trouble calling people on the phone (even my friends), running errands, etc. it has gotten much worse since I am in a country that has a different culture and language. And it doesn't help me with keeping up with my friends back home (thank goodness for Facebook!). But with my new anxiety meds, I am able to do these kinds of social activities and I am not as nervous about it. I call people to make appointments easier, I run errands, etc. I'm not doing much more social activity yet (how can I being so sick), but I am able to do it with a lot more ease now. I even went into a German grocery store and bakery yesterday and got myself a few German drinks and a German pastry, something I have wanted to do for weeks but haven't had the courage to do it. :) plus my panic attacks are few and far between now. The med I'm on is suppose to be one of the strongest antidepressants out there (one website said it was a last resort med) and it is suppose to make you gain a bunch of weight, but I'm obviously not seeing that. I'm on a tiny amount of it though. I always shyed away from getting on a med for my social anxiety, but I not highly suggest it if it is interrupting your life as much as mine does.
 
Allie, are you on hormonal birth control? I have 5 hemangiomas on my liver, and they cause me no problems to my knowledge. I was told by my doctor to get off the pill b/c the estrogen in the pill can cause them to grow, which makes them a bleeding risk. I hope it's not causing you any problems, but if it is maybe they'll take it out. Just thought I'd throw that out there. It's funny, mine was found on an abdominal ultrasound and confirmed by abdominal CT. What other tests have they said you need to confirm that it's benign?
 
Allie, so no meds for a couple months!!?? Are we talking pred and plaquenil here, or tramadol too? You poor thing, how horrible. :( I don't suppose you can get another doctor for a second opinion? Just the weight loss alone should be enough for most (good) doctors to sit up and take notice. My GI has always been very concerned with my weight loss when I was really ill, and he even complimented me yesterday on the fact that I've maintained my healthy weight for awhile now. But anyway, 100 lbs is wayyy low - can you talk to your GP and let them know the situation and ask for a new referral?

As for the stuff on your liver, I'm in that club too. I have "focal nodular hyperplasias", 4 of them, and I was told that basically they're benign tumors on my liver, so hopefully that's what you have. If it's any consolation, I had similar symptoms too including weight loss/no appetite and abdo pain - and my liver stuff turned out to be benign, so hopefully yours isn't cancer either. They found mine on a CT too and all they told me was that they found "nodules" on my liver and that they'd have to get a better look with an MRI, but "it probably isn't cancer." That was little consolation, as I'm sure you can understand, and it was a stressful 6 months before I had the MRI. The MRI fortunately got a good picture of what was going on and confirmed that everything was benign, and the nodules aren't causing my symptoms and are totally unrelated to my IBD or whatever it is, and that it's the IBD causing the symptoms (or at least it isn't the nodules causing any symptoms). So, I would recommend you ask for an MRI as soon as possible to get a really clear view of what exactly it is on your liver. Ultrasounds can see so-so but I also had an ultrasound of my liver (after the MRI) and they couldn't tell me much, and my understanding is that MRI gets a much better picture than any other test when it comes to stuff like this.

Hang in there, poor thing. Big hugs to you and I hope you can somehow get one of your doctors to actually help you before you waste away to nothing. And please go to the ER if things keep going downhill, it sounds like you have no quality of life and no relief right now and that's just so wrong. Don't doctors take an oath where they're supposed to "do no harm"? It really sounds like your doctor is doing harm by taking you off your meds! Urgh, I'm so upset for you! I wish I could do something to help, but at any rate I'm here listening anytime you need to talk or vent. Hugs!!
 
Phewwww - I am so happy this group exists. I'm starting to think I'm not crazy and there is actually something wrong. I was reading back on some of the older posts and they sound exactly like me. I guess my first "attack" happened when I was about 18 or 19, one of the two - I remember being at work and was crippled with stomach pain - went to the doctors had tests done and everything seemed normal. Next attack was a week before my 21, I was so sick, pain in the lower right hand side of my abdomen, diarrhea, loss of appetite and dropped 3 kgs in a week. I was taken to the hospital assuming I had appendicitis all tests came back negative, stayed over night was given extremely strong painkillers sent home and was told to monitor the pain. I went out for my 21st drinking as you do and was back in hospital the next day - Same old shit, no one knew what was going on.
At that point I felt like I was going crazy, so for the past 3 years I have kept my mouth shut about the constant dull ache which flares up every so often, because I feel the docs think I make it up. My bowel movements have been screwed since I was a little one, diarrhea, constipation same vicious cycle over and over again. I was diagnosed with IBS which later we found out to be wrong because I was tested for food intolerance's and to no surprise I'm pretty much allergic to everything, fructose, wheat and lactose - so you can imagine my diet is pretty bland and clean. In I guess the last month or 2 the pain is becoming unbearable, I'm losing so much weight and don't want to eat because I am again crippled with pain, I feel weak and tired all the time and lacking concentration, I'm becoming slightly depressed because I am so over being in pain and so over having tests done to come back as "normal". Now every time I eat the nausea kicks in sometimes leading to vomiting, chronic lower back pain is really bad as well, all this pain is reducing my hours of sleep and the only painkiller that seems to work is endone a slow release morphine tablet - I don't want to have to be on them forever.
This monday coming I am being tested again for my food intolerance's? No idea why but its a start. Monday arvo I have a doc's appointment and I am demanding I see a GI.
As like all of you I need to get this sorted! :(

Lots of Love and Light
B xo
 
Thanks MayFlower and Cat.

They just took me off the prednisone and the plaquenil, because my rheumy has no say on my pain meds because my GP is my sole provider on my narcotics. I'm on both tramadol and Tylenol 3's to try and manage my pain...three tramadol a day and 1 to 2 tylenol 3's a night. She went from not wanting me on pain meds to making sure I have plenty after she saw me a couple weeks ago and I couldn't walk.

Yes I am on birth control, have been for over two years (since January 2010). If that is why it came up, well, I'm screwed, because on on the birth control because my ovaries were producing cysts month after month that were building up over my left ovary, and I ended up in the hospital because the larger one burst and leaked fluid into my abdominal cavity. It was soooo painful. So if I have to choose between something growing on my liver and something growing on my ovary..great ~.~ I had heard that BC could cause it, but I was shocked that it just came up so fast when I had another CT not too long ago.

As far as the test they want to run, I'm not quite sure. He didn't talk about it too long because it is out of his field, but it sounded like another kind of CT scan. Either way I don't think it is a coincidence that this showed up and my appetite has been dwindling down to nothing the past few months...I have been very good about keeping my weight up despite the D in the past. :(

Cat, what did they do for your small tumors on your liver? Did they get taken out since you had those symptoms? I have done some of my own research on different forums about hemengiomas, and I found a ton of threads of people that have constant abdominal pain and their doctors told them that the tumor had nothing to do with it and basically did nothing for them.

Either way I am getting some sort of surgery soon, and I'm not stopping until I do. Either the rheumy sets me up with a surgeon to do exploratory surgery or my GP sets me up with a surgeon to get this tumor removed. I am not playing nice with this anymore. I knew I was starting to hit rock bottom when I couldn't even sing without draining all of my energy within minutes. I told my husband the other night I am very close to just driving the 3.5 hour drive to landstuhl and begging them to admit me and keep me until they fix this. I'm sure this is not a very big problem, but it is becoming one with years of neglect. I would really hate to really hit rock bottom and end up hospitilized just due to low weight...one of my friends with diabetes ended up in the hospital for over a week o a feeding tube because of that last month. :( Very scary!

Bisoverit, your story sounds a lot like mine. PLEASE do not give up in trying to find the issue. Keep going to different doctors until you find one that is 1)on your side and 2)has insight on what might be wrong with your body. IBS should NOT cause extreme weight loss like that. I have been told IBS can cause crippling pain, and that people with IBS could be on pain meds like me for it, but weight loss is a different story. Just keep trying! I can't help you with insight on food intolerances, but you could always keep a food diary logging what you eat and how you feel that day and see if there is a pattern. Hang in there!

Have a great weekend everyone! I'm going to be crocheting all weekend...I have 4 blanket orders to get done. :) That and two ready to ship afghans to ship out, things are starting to get pretty successful! One thing to be happy about right now. :)
 
bisoverit said:
Phewwww - I am so happy this group exists. I'm starting to think I'm not crazy and there is actually something wrong. I was reading back on some of the older posts and they sound exactly like me. I guess my first "attack" happened when I was about 18 or 19, one of the two - I remember being at work and was crippled with stomach pain - went to the doctors had tests done and everything seemed normal. Next attack was a week before my 21, I was so sick, pain in the lower right hand side of my abdomen, diarrhea, loss of appetite and dropped 3 kgs in a week. I was taken to the hospital assuming I had appendicitis all tests came back negative, stayed over night was given extremely strong painkillers sent home and was told to monitor the pain. I went out for my 21st drinking as you do and was back in hospital the next day - Same old shit, no one knew what was going on.
At that point I felt like I was going crazy, so for the past 3 years I have kept my mouth shut about the constant dull ache which flares up every so often, because I feel the docs think I make it up. My bowel movements have been screwed since I was a little one, diarrhea, constipation same vicious cycle over and over again. I was diagnosed with IBS which later we found out to be wrong because I was tested for food intolerance's and to no surprise I'm pretty much allergic to everything, fructose, wheat and lactose - so you can imagine my diet is pretty bland and clean. In I guess the last month or 2 the pain is becoming unbearable, I'm losing so much weight and don't want to eat because I am again crippled with pain, I feel weak and tired all the time and lacking concentration, I'm becoming slightly depressed because I am so over being in pain and so over having tests done to come back as "normal". Now every time I eat the nausea kicks in sometimes leading to vomiting, chronic lower back pain is really bad as well, all this pain is reducing my hours of sleep and the only painkiller that seems to work is endone a slow release morphine tablet - I don't want to have to be on them forever.
This monday coming I am being tested again for my food intolerance's? No idea why but its a start. Monday arvo I have a doc's appointment and I am demanding I see a GI.
As like all of you I need to get this sorted! :(

Lots of Love and Light
B xo
Click to expand...
Until you get a diagnosis, try drinking Fruit of the Earth brand Aloe vera juice. 100% organic/inner gel only. Read the label. One is not inner gel only. It soothes and helps heal the digestive tract and helps the bowel movements become more normal.You can mix it with some other juice or add stevia to make it taste better. Also, buy Spring Valley Probiotic, multi enzyme formula too. They are all in the pharmacy section at Walmart and they work!!! Try them and see if you don't see a huge improvement! Teresa God bless!
P.S. Also cut out all sugar and as much carbs as possible, they feed the bacteria (yeast). I know they tell you eat white bread and pasta, but it doesn't help in the long run.
 
Allie, oh dear, that's a pickle! Hopefully you tolerate coming off medicine as best as possible, and that mass is nothing serious! Not good!

I've got a NASTY stomach bug. Woke up yesterday morning, wasn't feeling great so I decided to stay in bed a bit longer. A few minutes later I had to get up and run to the bathroom with the runs.

As I went back to the bedroom I started getting queasy, lay down and hoped it'd go away. Nope, a minute or two later, ran to the bathroom and hurled my guts up. By the afternoon I'd had the runs 10 times, thrown up twice, and gave myself a back spasm from throwing up so hard. I stayed in bed all day, constantly trying to move around to relieve the back spasm. Couldn't even stomach liquids.

Still got diarreah this morning, but doing marginally better. Could get enough water down to get rid of the dehydration so that I can stand up without the room spinning.

Can't imagine how the folks that have that diarreah constantly manage. I'm lucky that my main issue is constipation! :p

Nathan
 
Hope you are doing better now :)

Been a bit of a nightmare time for me healthwise. First, it was so hard being up all day supervising the decorating/diy. Then, the schedule changed from Thurs, Fri, Mon-Wed to Friday, Monday, Wednesday and then tomorrow (often notified the same day ie up and waiting Tuesday only to be told it will be next day).

Had a 3 day joint pain flare which was really bad, that ended and then had a stomach flare which really took it out of me.

Then our porch door (we have a porch, which leads into front door) is falling to bits and they can't fit a new one for a week, so I had to be up for the repairman, only to be told nothing they can do. Mum is taking the day off to be here so I can relax!

Saw my grandparents yesterday which was lovely, think I am on the road to my usual level now which is good, but who knows what else will go wrong.

Also been getting bad/constant abdo pain, I go for months without a twinge then I have nothing but that pain for weeks. Haven't found anything that eases it so I have to put up with it really, even my codiene for shoulder does nothing.

I am one who "suffers in silence" and gets on with life- but I have been doing alot of moaning and groaning lately! :D

I have a pile of books to read and loads of online tv to watch. I was too tired even to form a though let alone concentrate for those.

If I ever wonder, from time to time, if I really need so much sleep or if it's just habit, weeks like the last few have shown me it's not a habit but need!

On the plus side, we now have a newly decorated living room with new curtains, and lots of little jobs that have been needing doing are done. Tomorrow should be the end of it, we're having the stupid sliding doors re-hung into proper open& shut which we have wanted done ever since we moved in over 6 years ago.
 
Youch. Perfect timing for it all right? Nothing that can be done for the door at all? Or is it just a whole project rather than a quick fix?

I'm doing betterish. No more throwing up, still have the runs and feel sick, but not unbearably so. More crampy than usual, probably for all the runs and maybe still a bit dehydrated. On the road to recovery though.

Funny, even when I was feeling my worst (or my best) the last few days, my stomach complaint that I'm here for has been completely unchanged.

Hopefully you can get that door fixed without too much trouble/cost.

Nathan
 
I understand how you feel star, I wonder all the time about my my large amount of sleep and wonder if it is habit or need. I usually sleep 8-10 hours at night (once my body finally falls asleep) and then another 2 hours during the day. I think mine is a need as well....the other day I got up and was so tired I left the house without shoes on...thats when I knew the chronic fatigue was not me being lazy!

Glad you are feeling better Nathan. I know how you feel about the dehydration...I have much more D than solid or constipation, so I get dehydrated very fast. Make sure you drink lots until you feel much better!
 
Nathan, dehydration can be awful. Fortunately in remission my stools are mostly normal, but back when I was really ill, I had constant d and would dehydrate very easily. I could chug water or gatorade or pedialyte all day and still end up dehydrated. My theory is that my bowels were too inflamed to absorb liquids properly, so although I was drinking and peeing frequently, I was still getting too dehydrated. I would up getting IV fluids a number of times which is no fun either. Hang in there and I hope you don't end up needing IV fluids - but please do go get some if need be. Signs of bad dehydration are twitching/tingling in the hands/feet/arms/legs. I got that one a few times. Also, if you pull the skin on the back of your hand and it snaps right back, you should be okay, but if it takes a second or longer to go back, then you're really dehydrated and need fluids. Or if your urine is dark, that's another sign of bad dehydration. I hope you don't have any of that going on - like you said, dizziness is one of the first signs for me too, and headache is another.

Allie, they didn't do anything as far as my benign liver tumors. At my MRI, they told me that the largest one is currently between 2 and 3 cm, and if any of them grow larger than 8 cm that they'd probably surgically remove them - but nothing is needed to be done until or if that happens. They're not causing symptoms, although from what I've read online, they could potentially cause symptoms down the road, so I'm just keeping an eye on things and will have periodic tests (MRIs or possibly ultrasounds) to see if they're growing. But for now, I'm just living with them and not having any ill effects from them. They're the scariest-sounding illness I've got - tumors on my liver, eek! But they're by far the easiest chronic condition to live with - a cakewalk compared to IBD, GERD, or arthritis!

Bisoverit, welcome to the forum and the club. Good luck with your appointments today - I have no idea what the time change is between the US and Australia, so it might already be tomorrow there? As I type this it's Monday 11:35 AM here. I have a friend who lives in Tokyo and it's usually the next day or it's evening there when it's morning here so I'm going to guess you've already had your appointment. Anyway, long story short, I hope it went well and that you were able to get a GI referral. Keep us posted, and again, welcome! :)

Star, it must be frustrating but validating to know that you really do need that amount of sleep. I think I need more sleep too, I had been doing okay on 8 to 9 hours of sleep, but with the Olympics lately I've been staying up later to watch and as a result have been getting more like 7 to 8 hours of sleep a night, and I've been noticeably more groggy and fatigued as a result. I love the Olympics but I need them to be over so that I can get to sleep at a decent hour! :p My new medication for GERD says it can cause drowsiness too and I've just started on that as of last week Thursday, so that might also be contributing. I thought I got about 8 hours of sleep last night but I'm exhausted today! So with the new meds I might just need a bit more sleep, and hopefully I'll adjust to them better soon. I hope the house repairs can be all over with soon for you, I know how exhausting that stuff can be too!

How's everyone else doing today? I'm okay, I'm tired as I said, but the guts are happy and I think the GERD medicine is still working fairly well. Hubby and I went kayaking again yesterday and I feel less sore today than I did after the first time we kayaked, so that's an improvement. Work is still stressful so I'm taking a bit of a breather to write this post. I'm in kind of a foul mood today and not really sure why, just woke up on the wrong side of the bed I guess. I'm hoping to hit the gym hard later today as that always makes me feel better, so hopefully the GERD stays quiet then. I'm not really feeling bad per se, health-wise I feel fine, but I'm just grumpy and tired and blah with a short fuse today. Just one of those days! I hope everyone else is doing okay, as always big hugs to all.
 
Hello everyone, I've got so behind recently.

I finally managed to see my GI today. Deffinately worth it. He still wants to do pill cam, but that isn't gone at my hospital, so I'm off to another for this one. I know both hospitals very well, so they're both very good. I don't know when that will be though, hopefully soon!
Has anyone had one here? Any idea of what I can expect? I can get anxiety sometimes and knowing every outcome helps.

Because of my symptoms and other tests, he's suspecting small intestine. He said it could be just inflamation, or could be strictures, which is a little scary.
He felt my stomach, and I was very surprised at how tender the areas that hurt actually were. I don't know what that means though.

Also, he was very very shocked at me being prescribed peppermint capsules. Rightly so! He also wants to hold off on any more meds until this test. Gave me a bit of a lecture on paracetamol as well. Oops.

Any advice on loss of appetite? I have kind of just stopped eating these days. My dietician is going to yell at me on Wednesday. oops. I'm just not hungry! And I think the thouhght of eating and getting pain is scarier than I want to admit.
I'm just feeling weak and tired at the moment. I guess it's good that I'm overweight and losing weight is probably a good idea in itself. Trying to think of plus points at the mo :(
 
Cat- Had really dark, really concentrated pee when I was dehydrated yesterday. Like I said, got myself back on my feet yesterday afternoon. Still on the uptick, but the unusual nausea and cramps are not gone yet. Stool is getting solid again. I expect I'll be constipated again by this time tomorrow :lol:.
 
Chell, a few of us here have had the pill cam...myself, Cat, and Sunshine to name a few. You will probably have to prep for it, and it is the same prep as a colonoscopy. Its actually a very easy test! Just swallow a giant pill and wear a pack that receives the images for awhile. Then a doctor has to go through all the images to find any abnormalities, so it takes awhile to get the results back.

I know what you mean about the not eating. I've been the same way lately, just not hungry anymore. I've lost a lot of weight because of it. :( I really don't know what to tell you, because I don't know how to fix it for myself!
 
Chell, as Allie said, I've had the pill cam (unfortunately mine didn't find anything) and it is a pretty easy test. Prep is the worst part, although you may luck out. Some people are just asked to fast overnight before their pill cam - those are the lucky ones! I had to do 1/2 prep and some have to do full prep. Apparently it's all up to your doctor/hospital's preference whether to do prep or no prep.

As for loss of appetite, this goes for both you and Allie - can you drink any kind of supplement drink (Ensure, Boost, etc - I'm not sure if they have something like that in the UK or in Germany?). Or even something like a milkshake, just to get you some calories. Personally, when I'm flaring and have no appetite, potato chips are my go-to. I can always eat them, and I tend to lose sodium easily when I have d, so my body accepts them as a good source of sodium. There was a thread in diet & fitness a little while ago about how fried potato products are horrible for IBD, but they're literally one of the only things I can eat when things are really bad. In fact I had some last night after this d started as I didn't want to lose too much sodium. Anyway, that's my two cents. Is there something, even if it's awful junk food, that sounds appealing and that your body wouldn't hate, just so you can get some calories?

Having said that, Allie, when I was losing weight like what you describe, I just couldn't find any way to put it back on. It was scary. I sometimes ate 2 or 3 big "family size" bags of chips in a week and would still lose weight because I just wasn't able to absorb enough calories or nutrients - it'd go my mouth in and out my butt in minutes without benefitting my body. It wasn't until I was on steroids that I started regaining my weight and it wasn't until remission that I've been able to successfully maintain my weight (I'm currently at 136 which was exactly my weight just before I got sick, so I'm back at my healthy weight! Woo hoo!). I had dropped down to 115 lbs when I was at my sickest (I'm 5 foot 8 so I wasn't skeletal yet but I was noticeably too thin - my thighs were starting to look like toothpicks) and got up to 145 because of the steroids and thanks to exercise and eating as healthfully as my body will allow, I am now at pretty much a perfect healthy weight. I say pretty much because after steroid weight gain, the weight didn't go back to the same areas and I now have a flabby tummy where I had a flat tummy before! But I'm not complaining at all, remission is good and I'm in my 30s so shouldn't be wearing anything belly-baring anyway. :p Ha ha. Anyway, that was a ramble and a half. My long-winded point is that sometimes it's just impossible to keep weight on when you're so sick and not on the meds you need to get better. I have been there and I feel for you - hopefully your doctor gets his head out of the sand soon and puts you back on those meds! Maybe weigh yourself every few days and email your doc how many pounds you've lost since stopping your meds? If he's a good doc, rapid unintentional weight loss should make him take you seriously. My GI is not the greatest but he always gets concerned when I lose weight (even if it's just a few lbs).

So, how's everyone else doing today? As for me, I have officially failed Reglan and am back to square one with my GERD (well, still on Nexium and Zantac, but GERD is not super well controlled on those meds - Nexium worked great at first but is slowly losing effectiveness). Remember yesterday how I was saying I was really tired and grumpy for no reason? My GI had mentioned that tremor was a potential side effect of this med, so yesterday when some new issues cropped up, I re-read the other potential side effects, I realized I have like 6 of them. Not tremor, but a bunch of other annoying side effects. For the past 24 hours or so I've had increased nausea and a few episodes of d, which is unusual for me being in remission. Yep, those are side effects of this med, nausea and diarrhea are listed as "common" side effects (this is a med that's also used to quell nausea - but it commonly causes nausea!!??). Grr. And I've had a few times in the past few days where I feel like my heart is racing - that's one of the "serious" side effects (the mood thing is considered serious too) so I'm stopping Reglan. Left a message with my GI. Already feeling a bit better although tummy is still pretty riled up, so I'm sticking with low-res and taking things easy today. No heart racing or mood issues today though and I feel less drowsy so hopefully this med will be completely out of my system soon. Blah, how annoying to get 6 side effects in 5 days! :(
 
hey cat.. that does sound ridiculous that the med is supposed to reduce nausea, but can cause it too? lol! uh oh!
when can you next see your GI to discuss different meds?

@may - did you manage to see your doc? i hope he/she managed to help you better than expected.

@allie - i really really hope this tumour is benign, i really dont blame you about the surgery thing. you've had enough to deal with already! stand your ground. exploratory surgery is what i had and that found my appendix in a complete mess (although my scans said appendix was fine) they can get in there and have a proper look. I hope you and your husband are feeling ok about it all xxx

@star - im really sorry that the abdo pains are getting pretty bad :( have you had any further tests yet? or got any booked?

@nathan - has your stomach bug eased up? unfortunately im one who suffers with the big D and urgency (i always feels like im going to pass out) but i did have constipation after my c section and that was so painful lol!

@chell - when is your pill cam? if they want you to do prep - ask for Picolax. i had Klean prep for my colonoscopy and i couldnt stand it! but i requested picolax from my GP and it tastes fine and only have to drink two cups of 150ml. and if you have loose stools normally anyway, this should work just fine. all the best! xx

meanwhile, my stomach feels sore on the LRQ since my colonoscopy where they found the inflammation and took a biopsy.
it was only a small patch of inflammation - and said its likely to be an infection. dont know when ill hear back about that though.
I see my neurosurgeon next week for a follow up. ive decided against surgery for the time being.. as i know for a fact i couldnt cope with the recovery right now..

anywho - loving the olympics right now, i keep getting emotional every time we win a medal! lol.. hope everyone is doing a bit better xxx
 
@Bozzy - Thanks for asking. I feel fine now. I still have loose bowels almost every morning, but I usually don't feel bad when I have that. I have an appointment next Tuesday. They could have worked me in this week, but I had scheduling conflicts. I just have this feeling he'll prescribe more Rifamaxin and send me on my merry way. But maybe that'll work. Who knows? I'll try to be positive.

Hi, everyone. Sorry about that med, Cat. Ugh side effects.
 
Hi I am new here and I think I have crohns. I have had undiagnosed stomach problems for over a year, usually on right side that go to small of back. When I get flair ups I can not tolerate food and have to go on a liquid diet. The first severe attack lasted for 3 mths

The flair ups start with me feeling completely exhausted and drained, then the pain starts and I am unable to function and undertake my normal life. I have had tests and my blood work came out normal and did not show inflammation just slight anaemia.

Docs initially thought gallstones but had a couple of scans and all clear. Had a ct scan and this has only picked up leisons on liver which I am having follow up MRI's for - but they said not to worry as CT scans often pick these up and this would not be causing pain. Had a upper endo which was clear. I have asked for a colonoscopy but they will not do this as I have no blood in stool.

I constantly take tramedol for the pain and struggle to function when I am taking these particularly whilst working.

I have to watch everything I eat and can only stomach very small portions, the pain usually starts a hour or two after eating.

I am under a GI doc now and have asked him for a MRI of the small bowel -I do not feel as though he believes me or my regular doc and they keep saying IBS
I do not suffer from diarrhoea but have to ensure I have a bm daily, if not I am in severe pain.

I have had to cut my working hours to 3days and struggle to manage that at times and have just had another flair up. I have lost over a stone and a half in weight and have been unable to put it back on since the initial flair up over a year ago.


I get very down with it all and am not sure how I will cope if the small bowel MRI scan does not show anything up. My friends are worried about me because physically I do not look like the girl I used to a year ago with the weight loss.

How do you all cope with not having your pain diagnosed. I go through periods of trying to normalise that I can not eat much or enjoy going out for meals and never having energy to have fun!! and then I think that I am 42 and should not feel like this at my age arghhhh

I wish I could find the answers
 
hi Jmr welcome to the club (though im sorry you are in the club lol!)

unfortunately this isnt the first time i've heard this about not offering colonoscopies because you dont have blood/diarrhoea. im surpised that they did an upper endoscopy though and then dismiss a colonoscopy?? strange..

i think generally GP's will only refer for a scope if you have blood/diarrhoea/pain/abnormal blood results.

has your gastro agreed to the mri?
please keep us posted with how you get on.
i dont really suffer much pain, its mainly sickness and diarrheoa for me with a manageable soreness in the LRQ. so i cant offer much help there im afraid :(

good luck x
 
Hi bozzy, thanks for your kind words. Have to admit the pains were better today.

I am being tested for genetic amyloidosis at the end of the month, that's as much as I know at the moment. I see Rheumy next week so will see what else comes next. Back-up plan has always been long-term steroids without dx. Pred was a miserable failure for me so I think my safety net is gone which is scary! Haven't had pre&post Pred blood results but from the lack of improvement in symptoms i'm not expecting a dramatic change in my inflammatory markers. So I guess we will plug away at tests and see what happens.
 
Bozzy, I am just waiting for my GI to call or email me back, I sent him a message on the online medical chart interactive thingy this morning. His nurse sent me a message back saying they received my message and that she'll ask my GI to respond to me, so now I'm just waiting for that. I had an appointment with him last week (that's when he put me on this bad medicine) and he said then that if I don't do well on this med, then he'd likely do more testing on my stomach & esophagus to learn more about my GERD. He thinks maybe either my stomach isn't emptying correctly or my esophagus isn't letting food down into my stomach properly, so something like that might be causing or contributing to my GERD. So we'll see, probably more tests on the horizon for me. Just as well, I need to get this GERD figured out already as it's being tricky to treat!

And Bozzy, I hope you get those test results back soon. And if it were me, I'd say no to the surgery too. It sounds like surgery was all this doctor was capable of offering you but that doesn't mean it's the right choice, especially with what a jerk your neurosurgeon was! How are you doing besides the abdo pain? Job situation any better?

May, glad to hear you got an appointment and I hope it goes well. I don't suppose a pred trial has ever been on the table for you? It changed my life as you know. If you don't want to try Rifamaxin again (that is the one that's really expensive, right?), it might not hurt to at least ask about pred. If it works for you, you know it's not IBS. It's really cheap too, surely much cheaper than Rifamaxin. And a short run/low dosage wouldn't risk many side effects - euphoria and a bit of a hard time falling asleep were the only side effects I noted from it. Just a thought, you know I am a pred fangirl and I may be a bit biased because it worked so well for me. Anyway, I'll shut up now. Good luck with your appointment, keep us posted!

JMR, welcome to the club and the forum. I'm not sure how things work in the UK as far as getting a colonoscopy, but you should keep pushing for one - particularly if the MRI ends up being a dead end. Hopefully it shows something and you won't have to worry about more tests, good luck with it. And for what it's worth, it doesn't sound like IBS to me. You don't lose weight like that with IBS, but you do with IBD (Crohn's or colitis). So keep pushing for tests and answers, and seek out second opinions if your current docs act like they don't believe you. Hang in there, you've found us now and we're here to support you - we're all in the same boat here!

Urgh, I'm still not feeling so hot. I've taken 2 Zofrans today just to try to quiet my stomach down but it's still grumbly. And how dumb is that, I had to take anti-nausea medication to stop the nausea that was caused by a different anti-nausea medication! Hah. :p I have a co-worker who has UC, and sometimes he and I joke about symptoms and meds and stuff, and I always tell him "I've got to laugh about this because otherwise I'll cry!" That's about how I'm feeling now, yucky but still able to see the humor in this situation. And kind of glad I got the side effects early on so that I didn't waste too much time being on a worthless med. Also glad the side effects weren't worse - of the bad meds I've been on, this one has been the least troublesome. Hyoscyamine made me barf and gave me much worse nausea than this, Compazine made me not able to breathe properly, and Sumatriptan caused a rebound migraine that was much worse than the initial migraine. So all in all, I can't complain too much. This is annoying but not awful.
 
Hi to both of you and thank you for your replies

i am glad that i have found this site and there are others out there that understand

The doctor has ordered the MRI but it was instigated from me he is going to , he tells me not to worry about these as they are very common and are usually found on a ct scan?? I have had one mri with cntrast for them and they have called me back for another one. .

They did a upper endo last year because I was in hospital due to the pain and they were trying to find answers??


I do not want to have crohns but the way it flairs and the attacks that I have had over the years point to it.

This last flair up is because I thought I was better and had a few glasses of alcohol and I have paid a price, it always starts with fatigue and exhaustion, I go a grey colour and colleagues in work usually notice it first, then I can not stomach any food, keeps me awake at night, my ribs get sore and I struggle to function normally. It seems to be calming down a bit so now I go into the phase of being scared what to eat.

Does anyone else have problems with alcohol??


These flairs have gone on for years where I have been hospitalised for the pain - had my appendix out a few years ago to be told it was normal. I only used to get a flair once a year so did not think too much of it but they have been constant for over a year now.
I am just fearful to have another test and for it to be a negative result - am not sure how much longer I an go on appearing strong to family and friends when inside I am crying in pain and frustration.
 
I meant to write that he has ordered a MRI of the small bowel at the same time as liver MRI with contrast as they have found spots on my liver in a CT scan, I have had one MRI for this and they have called me back for another to check the liver again- he tells me not to worry as spots on the liver are very common and usually found in a CT scan
 
I still find that strange that you have all this pain.. so bad you had to be hospitalised.. and they wpnt do a colonoscopy?!?
Especially as it seems your appendix wasnt the culprit. most people who have been diagnosed ave been done so by biopsies

loke i said before.. my last scope showed small patch of inflammation. ive had diarrhoea and bleeding.. they said its likely to be an infection. So wont know anything until biopsy results are back

good luck though an let us know how your mri goes x
 
Gosh that must be hard for you - knowing that you are presenting with the symptons. I hope you get your answers from your biopsy, please keep me informed. Hopefully my MRI will come through soon - my GI doc is a bit slow. I phoned the hospital to see if it had been booked as i saw him over 2 weeks go and they have not received a referral yet- so I have been onto his secretary, this is the 2nd time it has happened with him
 
jmr said:
Hi to both of you and thank you for your replies

i am glad that i have found this site and there are others out there that understand

The doctor has ordered the MRI but it was instigated from me he is going to , he tells me not to worry about these as they are very common and are usually found on a ct scan?? I have had one mri with cntrast for them and they have called me back for another one. .

They did a upper endo last year because I was in hospital due to the pain and they were trying to find answers??


I do not want to have crohns but the way it flairs and the attacks that I have had over the years point to it.

This last flair up is because I thought I was better and had a few glasses of alcohol and I have paid a price, it always starts with fatigue and exhaustion, I go a grey colour and colleagues in work usually notice it first, then I can not stomach any food, keeps me awake at night, my ribs get sore and I struggle to function normally. It seems to be calming down a bit so now I go into the phase of being scared what to eat.

Does anyone else have problems with alcohol??


These flairs have gone on for years where I have been hospitalised for the pain - had my appendix out a few years ago to be told it was normal. I only used to get a flair once a year so did not think too much of it but they have been constant for over a year now.
I am just fearful to have another test and for it to be a negative result - am not sure how much longer I an go on appearing strong to family and friends when inside I am crying in pain and frustration.
Click to expand...

I totally gave up alcohol. Imagine pouring it on a raw piece of meat. That is basically the same concept. It would irritate it badly. The yeast in beer would be really bad too. The night i had a diverticulitis attack, I had two beers and bam. Up all night and the pain was excruitiating. I was in the hospital five days. Your body tells you what to eat and drink, so listen to it and you will be much happier and healthier. Love, Teresa
 
I don't think alcohol does me any good either. Now that I'm in remission, I can have one small glass of white wine every so often (like one glass every month or so) without ill effects, but I dare not try to drink more than that. I'm prone to UTIs too and too much alcohol can sometimes set off a UTI for me, so I have really never been a big drinker. Before remission I didn't drink alcohol at all, it did awful things to me and just wasn't worth it. I don't drink any soda nor coffee either as those also cause ill effects. I drink lots of water, supplement drinks, fresh juice (made from my juicer only - store bought juice does bad things to me too), herbal caffeine-free tea, and sometimes sports drinks like gatorade if I need electrolytes. I'm having juice from my juicer right now - it's got carrots, green peppers, pears, cucumber and cherries in it. It's lovely and is easy on my tummy (juicing removes all the fiber, making it easy to digest). Yum!

I'm feeling quite a bit better today. Not 100% but better than I was. I'm still getting crampy pains and waves of nausea sporadically, but the d has stopped so that's good anyway. Still waiting to hear back from my GI as well (sometimes he takes awhile to return messages).
 
Alcohol hates me too. With my meds I get drunk really fast, and then my pain hates it too. My husband tried using alcohol for pain relief once or twice, and one time I just chugged it, and as soon as it hit my stomach I was in tears. I avoid alcohol now.

I'm trying my best to keep my weight up. Last night my husband didn't want to cook, and all of our leftovers werent safe foods, so my husband had me eat ice cream for dinner. He was so excited I actually did it, and when I asked him why he was so excited, he said it was full of calories but would be liquid so it wouldn't cause pain. So I'm trying!
 
Hi, I dont know how to do a new post as I am new to all this! I've been having mega problem with diareah, stomach pain, blood in my stools and an urgent need to go the toilet straight after I eat, I saw my GP and he did blood tests I had the results back yesterday and it shows my inflammatory levels are really high and that my white blood cell count is abnormally high. He's referred me to see a stomach specialist. I'm a nervous wreck he said it could be IBD but does not know which type. Does this sound like it could be crohns? I'd be so greatful if someone could help me as I'm a state so worried. Thankyou Lynds x
 
Hello Lynds,

Yes, that does sound like you could have Crohn's. :( Have you been referred a to GI? The next step is going to be more tests, like a colonoscopy to see what is going on inside your intestines. I know all of this is really scary, but Crohn's symptoms can be treated and the disease can go into remission. Just take everything one step at a time, and talk to us!
 
Hi thanks for replying! Yes I have been referred to a GI as an urgent referal so really am scared!! Just hope they can help with the pain. Just waiting for the appointment now. Thankyou for your help u have made me feel more at ease about things x
 
Hi lynds88 - whereabouts in the uk are you?

Just like allie said.. take it a step at a time. its good that theyre sending you to a gastroenterologist.. whatever happens hopefully its a step towards you getting better.

good luck and make sure you keep us updated xx
 
Hi Bozzylozzy, I'm from Wales, you? I just can't wait for them to help me get better as its effecting my every day life at the moment as I constantly have to rush to the toilet plus the pain in my stomach some days is unbearable. Thankyou for your lovely comment, I will keep you updated. Just the anxious waiting about now for my appointment, even though the doc has sent for an urgent referral so fingers crossed it shouldn't be to long a wait
Xx
 
Im from sheffield in south yorkshire. its so good to hear that they have done an urgent referral for you.. the quicker you can get sorted the better.

i got told they were 99% sure i had crohns.. then later discovered it was actually my appendix!! Haha. (But these guys just cant get rid of me) ;) so i know its scary when they say its likely to be IBD. butfingers crossed x
 
I know sheffield haven't been there but my friend lived there for some time, can't believe it turned out to be your appendix! Ive got my fingers crossed that it will be something that's going to be straight forward to diagnose but it's me and I'm never straight forward lol, have got some history of bowel problems in the family my gran had to have a colostomy bag 5 years ago. So when I was told I had high inflammatory levels and a high white blood cell count I went to pieces. Just dreading the fact I might have to have a
Colonoscopy and I've heard some unpleasant stories so a bit scared of that but Aslong as they knock me out I should be fine. X
 
honestly do not worry about the colonoscopy - make sure you request picolax as the bowel prep (as its much better easier to handle than klean prep/movi prep)
i had both of my colonoscopies with just gas and air and had no issues - i think you just have to really relax. the only problem i had was during my sigmoidoscopy they had to laser the lining of my bowel to stop the bleeding.. and THAT was painful :(

to get to the diagnosis bit i think is the hardest part. because once you have the diagnosis you can know how to treat it (hopefully)

well, all tests said my appendix was normal (so they decided on exploratory surgery) - and my symptoms didnt present in the normal way. even my surgeon said to me afterwards that he couldnt believe i was still walking around before the surgery considering how much of a mess it was when they went in there!
 
Thanks for that hun, I feel more at ease now I will make a note off the name so I can make sure I have that, your right getting a diagnosis is the hardest part having to have all the tests ect. I will get there eventually! It's just the last 2 months my stomach has seemed to have gotten a lot more painful, end up waking most the night dashing back and for the loo and I feel as if someone is stabbing me in the stomach. Seems like I'm having to live off painkillers at the moment. Plus I've got 2 children so
It's hard as I'm up and down most the night going the loo and throughout the day it's awkward to go on days out, unless I know where the toilet is!!! Xx
 
Thanks lovelies for your help! I feel a bit better about it now. I don't know when I'll be having the cam, could be months! But at least now, I don't have to worry for the next however long.

On top of everything else, I've really been sufering with my eyes! I don't know if it's related to my possible IBD, but they;re all red, sore, inflamed and swolen, and it hurts to blink and stuff.
I'll post a picture , might it be worth cross posting in the extra intestinal forum?
If links aren't okay, please let me know!
http://i26.photobucket.com/albums/c107/Sevothtarte/eye2.jpg
 
Chell, posting links is fine (as long as you're not selling anything or stuff like that). It's hard to tell from your photo but do definitely mention it to your doctor. I would think it could be something like iritis (google it - it sometimes happens with Crohn's). I haven't had iritis myself so I don't know much about it. If you haven't already, do post in the extra-intestinal manifestations part of the forum too, hopefully they can tell you more than I can. And good luck, I hope you can get it figured out and treated soon!

Lynds, welcome to the forum and the club. As Bozzy said, don't worry too much about the colonoscopy. It's a good test to have and really the prep is the worst part, the test itself is pretty easy. I don't know if it's different in the UK, but here in the US they give you good drugs beforehand so I don't remember any of my c-scope at all! The prep is kind of yucky - make sure you're near a toilet and don't make any plans that will take you out of the house while you're prepping, and have a good book or laptop or something to keep you occupied. Good luck and keep us posted on how it goes, and I hope it gives you some answers.

How's everyone else today? My guts are back to normal and I had a good first half of the day yesterday. I had gone to the gym on Monday, when I was still feeling the side effects, and it was so tough. The weights all seemed so heavy and I felt so slow and weak and sluggish. Yesterday I went to the gym again and I felt great, what a contrast from Monday! The weights all felt lighter, I had much more energy and was faster and it was just better all around, so I think I'm over the side effects from that med I was on. But, yesterday afternoon it started raining and has been raining pretty steadily ever since, and my arthritis has been active and painful due to the weather. Tylenol has only been doing a little and my heating pad didn't do much for it either. The pain was quite bad last night at bedtime, it was like being stabbed in the hip with a sharp needle! I had to take a sleep aid (on top of the amitriptyline) just to get some sleep. In the morning I felt okay but then the pain started creeping in again and it's pretty sore again now. Yuck! I swear, if it's not one thing, it's another. I got over some bad side effects only to get an arthritis attack. What's next? (Don't answer that...)
 
Cat a tonic Thankyou for your kind message! I will keep u a updated as soon as I have my appointment through to see the GI. I feel so much more at ease since meeting great people like yourself and others on here. It's great to be able to come on and discuss these things with people who actually know what u r going through xx
 
Chell said:
Thanks lovelies for your help! I feel a bit better about it now. I don't know when I'll be having the cam, could be months! But at least now, I don't have to worry for the next however long.

On top of everything else, I've really been sufering with my eyes! I don't know if it's related to my possible IBD, but they;re all red, sore, inflamed and swolen, and it hurts to blink and stuff.
I'll post a picture , might it be worth cross posting in the extra intestinal forum?
If links aren't okay, please let me know!
http://i26.photobucket.com/albums/c107/Sevothtarte/eye2.jpg
Click to expand...

Dear Chell,
I have crohn's and get severe eye irritation too from time to time. Also like a stabbing pain in my eyes. They tear too. It is common with crohn's if you look it up. Actually any immune disorder can mean you have another one.
Hope your eyes get better soon. Teresa:rosette2:
 
WOOT!

Life is good!

Feeling better, finished summer courses, so I've got a month of just working full time with the Chem department here and enjoying the weather.

Stomach bug is gone with just some slight persisting gut irritation. Normal stomach problems are pretty much down to a simmer, not gone, but ignorable. I'm feeling good!

I do think I need to get my knee checked out again though, I think fencing might have aggravated an injury from a few years ago, had it give out two or three times this week, if it was aggravated again from fencing tonight I'll get a referal to get a proper full evaluation of it.

Chell:
Yeah, Iritis/Uvitis is a common effect of Crohn's. However, even though it's common, my understanding is that you should go to see your doctor to keep an eye on it (so to say :p). They've got steroidal eye drops so that you can take care of it and don't have to convince everyone you're not smoking dope in the back. :ybiggrin:

Nathan
 
Lynds, I hope the wait isn't too long to see the GI. You mentioned that you got an urgent referral, so I hope that goes through quickly. When I initially scheduled my colonoscopy, there was something like a 3 or 4 month wait! I tried waiting, and made it about a month, then ended up calling the nurse and just started crying on the phone because I was so sick and upset and just didn't think I could wait much longer. She took pity on me and booked me an appointment for the following week. So if they don't seem like they're in a rush to get you booked, sometimes crying on the phone works - worked for me anyway. Good luck with it and I hope you can get that appointment soon!

Nathan, glad to hear things are looking up! I hope the knee is okay. I have hip arthritis and my hip has been painful lately too as it's been raining a lot the past couple of days. Does your knee get affected by the weather or anything like that? Are you sure the pain is from an old injury - have you ever had it checked for arthritis? They can usually diagnose arthritis from an x-ray, that's how they found mine (there was some confusion as my arthritis is apparently very mild, that one doctor thought it was bursitis, and for awhile I wasn't sure what to think, but now I'm pretty sure it's arthritis and my GP agrees with me). Anyway, whatever the case, I hope you can get it figured out and get it feeling better.

I'm doing okay today but am a bit confused. I've been eating tomatoes all along even though I can't digest them. I always see them later in my poo. Recently I decided I should stop eating tomatoes for awhile and see if I notice a difference in how I feel - I don't notice any pain when I eat them in spite of the fact that they don't digest, but maybe they're affecting me in more subtle ways, so I'm cutting them out. It's been over a week now, close to 2 weeks - and I'm *still* seeing tomato bits in my poo. I just saw a bit of tomato in my poo this morning. Just how long does it take a particular food to leave my system??? I even had d a couple days earlier this week due to the reglan side effects, and I felt pretty cleared out then (I saw tomato in my d then also but had hoped that was the last of it). So I'm thinking that cutting tomato out is a good thing, if it stays in me that long and doesn't digest then surely I was being pretty risky, could have gotten a blockage or something. I'm going to keep eating things like tomato salsa and marinara sauce to see if I see that in my poo, but no more fresh/raw tomatoes for now.
 
Lol cat.. i hate tomatoes! You're a "crazy cat" for eating so many.. ;)
Are u sure its tomato in your poo?

You asked me before how its going with things at my work.. well currently - not good.
i was feeling so positive until i got negative feedback from some admin work i did (apparently i cant photocopy files.. the work i did was less than satisfactory!) And this took me 3hours to do. i have no idea how i could have done it wrong?!?
So this feedback has knocked the stuffing out of me. if i cant chuffing photocopy files, then what can i do? So ive caved in. saw the GP this morning.. and im starting on a low dose anti depressant :(
 
Yes, I'm probably weird but I love tomatoes. Hubby hates them so now I guess there won't be any need for me to buy them. And yes, I'm quite sure it's tomatoes in my poo. It's not blood - it's solid bits and not quite the right shade of red for blood - it's bright red but not bloody or liquidy, and it's solid chunks and sometimes I see the tomato skins too. And it appears when I haven't eaten anything else red - I avoid strawberries (though I do see those in my poo too if I dare eat them, but they hurt so I already avoid those). I used to think maybe I just wasn't digesting tomato skins, as I was definitely seeing the skins in my poo, so I started removing the skins before eating them, but I'd still see tomato chunks in my poo so it seems I can't digest any part of them. I just didn't realize that they stayed in my system for that long! I looked at my calendar and I think the last time I ate tomatoes was 10 days ago, and they still appear in my poo as of this morning. So even in remission I just can't digest certain things at all AND I'm risking obstruction, not good. No more tomatoes for me. :(

Bozzy, so sorry to hear that the job situation is that bad. And seriously, they said you didn't photocopy things right??? I would have asked what specifically was done wrong - I can't even think of a way to mess up photocopying things. It almost sounds to me like they're just looking for excuses to badmouth you? Are you still working for the mean boss, is she the one who said you didn't photocopy correctly? If so, she may just have it in for you. Watch your back and document everything so that there's a paper trail and evidence on your side, so if they try to fire you or demote you or something you'll at least have some proof of what's been going on.

What anti-depressant did you start? I've been on amitriptyline 25 mg (taken at bedtime as it makes me sleepy) for close to 2 years now. My GI thought it might help "calm" my guts but no help there, although I do feel happier (could just be a remission thing though, I was very depressed when I was flaring all the time and feel happier now!). It prevents my migraines most of the time too so I'm happy to stay on it. There's no shame in being on an anti-depressant. I just wish your job situation and health situation can improve as it sounds like that stuff is certainly contributing to your depression if not causing it. :( Poor thing, big hugs to you.

My job is still pretty stressful too - they keep piling new projects on me - but I'm fortunate that at least my new boss likes me and gave me a good review. I was really nervous going into my review with her because I had no idea what to expect, but she only said positive things about me. Phew! Oh, and I don't know if I told you guys this - I was expecting hubby to get fired from his part-time teaching job for missing that class. He actually didn't get fired, but he got demoted instead. I didn't know it was possible to get demoted when you're only working about 3 hours a week, but now they made him be the substitute teacher, so if any of the "real" teachers call in sick or need a day (well, hour) off then he fills in for them. So far only one person needed a day off so hubby's working one whole hour this month. Urgh. He's still applying for other jobs but no luck whatsoever so far. He has been helping out around the house more though so at least there's that. He actually vaccuumed the other day which he never does, and I recently bought a used exercise bike and he cleaned it and fixed some things and oiled the squeaks and made it like new for me. So yeah, job still stressful and hubby not really working so finances suck. At least I can save a few bucks here and there by not buying tomatoes. :p Ha ha.
 
Ive been given the same med - amitriptyline. but just 10mg
i dont think theres anything wrong with taking anti depressants.. its just i feel ive failed at trying to be positive and happy lol

im so glad your boss likes you :) i dont mind doing lots of work if my hard work is appreciated.
im sorry to hear your hubby is still having a tough time looking for work. does he have any interviews lined up?
 
Cat, that is so weird about the tomatoes. Are you sure its tomatoes? I just couldn't see it being in your system that long. I am the same way with gummy candy...love it, but it doesn't get digested. It causes pain at the same time though. But I have seen the same type of thing in my BM's before when I haven't eaten them. I figure my guesses on whats going on aren't always right. ;)

I'm doing ok I guess. Just taking it day by day. I do have good news though, I now have a job. I am now the computer technician at the high school on base. I am a little worried about how I am going to do at it with my illness, but I'm going to try anyway. I will be working from 7 to 4 monday through friday. Another thing I'm worried about is not having as much time for doctors, but I have already let them know that I have to be at the doctors kind of often, so we will see how I can do that.

Hope everyone is having a good weekend so far!
 
Hi bozzylozy me again,
following on form your discussion on anti depressants

I went to my doctors the other day and saw a different gp who was so horrible. He told me not to expect to find anything from the tests and that I should take amitrptaline as it is IBS. I have tried this in the past and a different one and it did not seem to make any difference to my gut or my flair ups, I do not suffer from loose bm's I have to make sure I go every day else I get more pain and this made me constipated.
I said it all feels inflamed in there and he replied that it obviously is not because inflamation is not showing up on the blood tests and that some people get headaches and it does not mean they have a brain tumour - why are some doctors so patronising!!!

I felt like I was coming out of this recent flair yesterday and had more energy, but woke up today as if someone had sucked the life out of me and my stomach started aching again. Most probably because I was a daredevil and eat some food yesterday ( half of a vegetarian burger and some mash and a boiled egg for breakfast- I lost 5 lb in weight last week from being unable to stomach any food ahhh. another thing I am worried about is trying to get my head around never finding out what is wrong with me?? but still having a illness that impacts on so much of my life?? I guess I will have to go on anti depressants as I do not think that I will be able deal with it.
Also remember that people in work can sometimes be building their own little empires and get off on the power-ask the person next time to identify what you are doing well and have they heard of the feedback sandwich. Try not to let them get you down, it is so hard to take negative feedback when your feeling unwell.
 
jmr, Hang in there. Any time you have a chronic illness that has a tremendous impact on your life, you will go through the stages of grief. The most important thing to remember is not to get stuck in one phase. You won't necessarily go through the stages in order and sometimes you may even go through one stage twice. If you get stuck in a stage, that's when you need to seek a counselor or some sort of help. Do what you need to do to take care of yourself.

Don't be afraid to "fire" a doc who is mean and nasty. You are paying for a service and you should be treated with respect.

As hard as it is, stay away from foods that hurt you.

Good luck with your new job.

Blessings, NL
 
Hi club!! Thought I'd check in and see how everyone was doing!!

I'm doing...ok. GI wise things had improved but I believe it's only because I've had to up my Norco and Iron which both cause things to slow down. Either way I'm enjoying the break from always running to the restroom and the severe pains after eating! Because that's improved I've also finally put on some weight! I'm currently 32 wks pregnant and have managed to gain 25 lbs :) BUT things can't be simple can they?? My kidney stones are
Causing problems again!! (which is why I've had to increase my norco) my white blood count is still high, along with my sed rate and I'm still anemic. Had a stat ultrasound Friday because of right flank pain and peeing blood which revealed several stones on my right side, the largest being 8mm. So they gave me a antibiotic shot and wrote a script for Cipro since I've showed signs a stone may be infected. Well they warned me the antibiotics could cause my C Diff to flare up again!! I swearing can't win!! Sooo I'm trying to control the pain of these stones outpatient otherwise they told me next step was to admit me which is exactly how I got c diff the first time :( sooo that's what's going on with me!! My baby is doing well tho! Still haven't decided 100% on a name yet tho! :-/
 
Cat:

Yeah, pretty sure it's the injury 'cause it's the same ligament giving trouble. It's not bothering me this week, so I probably just overextended and sprained it fencing the week before.

This weekend has been pretty awesome. Starting thursday last week I finally got my good fencing foil fixed and then beat everyone there. :p Friday was my birthday, got a new fishing rod, some books and a rock climbing gym membership.

Saturday we had our yearly pig roast, but woopsies, we did something a bit different this time, the skin split and the grease started pouring out, starting a grease fire! We got the usual squirt bottles we used to beat it down, but it kept going, within a minute, the extra heat from the fire got the grease really going, flames leapt up 5 feet in the air! Had to get the water hose on it and in the mean time my mom had called the fire department! They showed up after the fire was beaten down, had a nice chat and headed off.

Pig wasn't ruined though, just skin burnt up. The meat itself was better than ever! I feel like I got beat with a sledgehammer from all the volleyball though. xD

Then Sunday I finally got out fishing for the first time since the Spring! Didn't catch anything interesting, just a bunch of conners (ugly red fish that live in 'round the rocks) but had some fun.

Stomach is behaving itself, ironically ever since the stomach bug I had, I've had almost no real problems. So fingers crossed that it lasts. Last flare I got 8 months out of remission afterwards, so I'm happy.

Nathan
 
Hia all

everyone seems to be in bad way at the moment so I am sending out my love and hugs to you all:rosette2:

I telephoned the hospital today to see when my small bowel MRI and liver mri apt was going to be to be told that my GI has ordered a Abdominal CT scan with contrast instead of the MRI's - I am so gutted as I had a CT last year and this only showed liver lesions which I have had a followup Liver MRI for this - so frustrating. Has any one else had a false CT to then have a positve one fr diagnosing crohns?? I feel like I am going backwards.
 
I don't know whether to laugh or cry.

Less than an hour after my last post I had a rush to the bathroom and had a nice show of blood, and now I'm feeling flary again.

Now I just think my stomach is screwing with me.

Nathan
 
Aww, Nathan, that stinks. :( I hope it's just a fluke - something you ate maybe? Greek yogurt makes me bleed and I'm not usually a bleeder. At any rate, I hope you get back to feeling okay again soon. It sounds like you had a fun weekend anyway, it's always nice to have a few good days in a row! You mentioned fishing, do you catch and release or do you keep and eat the fish you catch? I've only been fishing a couple times in my life, but lately hubby and I have been taking the kayak out, and I see so many bluegill and sunfish and trout and things like that in our local creeks, and it makes me hungry! I keep thinking I need to get a fishing rod and catch myself some fresh yummy fish. I make myself hungry every time I'm in the kayak and I'm making myself hungry now too! :p

Bozzy, sadly no, hubby hasn't had any interviews yet. He did have one nibble of a job offering, this company that makes cell phone games asked him to draw a zombie as it would appear on a cell phone screen, and hubby made a really cool one. It was a zombie that was glowing blue and wearing doctor scrubs, it was pretty eerie! They liked his work and wanted to hire him... but then they lost funding and weren't able to hire him in the end. That was really, really disappointing as it sounded like a fun job. They said they'd "keep him in mind for the future" but I think all rejections say something like that so I'm not holding my breath. Other than that, he's had no call backs and no interviews whatsoever. It's getting depressing for both of us - I'm working all the time and still poor, and he's frustrated that he can't find any work. Not good! :(

Allie, I'm almost positive it's tomatoes - I looked over everything I've eaten, and there's nothing else that's red or that shade of red that I've eaten. I avoid strawberries - I can eat raspberries but haven't had those in like a month. I did have salsa the other day, which contains tomatoes - and I saw that in my poo this morning. Seriously, even salsa!? It's confusing and frustrating. I figured I could cut out fresh/raw tomatoes but still have salsa as the tomatoes have been processed/cooked, but even that seems to be a fail. I'm going to cut out ALL tomato products - no ketchup, spaghetti sauce, salsa, etc for a few weeks. If I still see tomatoes in my poo after that then I will just accept that I have officially gone crazy, ha ha.

Tx, sounds like you're doing better and that's great! Glad to hear baby is doing well too. As for names, maybe you could look down yours and your husband's family trees and see if there's any old family names you like? (My mother has traced our family tree for many generations back and it seems like there's only dumb names in ours so that may not be good advice - seriously, my ancestors include a guy named Booth, a guy named Cosmo and a woman named Desire - not good names! Ha ha.) I hope the kidney stones can resolve without another bout of c diff - you deserve a break from all these things! Thanks for updating and I hope things continue to get better - keep us posted.

Hi and big hugs to anyone I missed. How's everyone else doing? I'm okay but my arthritis is a bit angrier than usual and my reflux is still going kind of haywire. I finally heard back from my GI - he wants me to do a "pH impedance study", anybody know about this test? I believe he said it involves sticking an NG tube through my nose and down my throat to my stomach (lovely) to test what my stomach acid levels are doing through the day. There will probably be more tests after this one as I don't think the issue is my stomach acid. We'll see. I've never had an NG tube - are they as awful as I think they are? It sounds very uncomfortable. I'll let you guys know when I learn more. The test hasn't been scheduled yet so I'm not sure on any of the details yet. But I'm not looking forward to it.
 
Hello club! I am new here, so I thought I'd pop in.

I Started entocort on Saturday, the doctor says he's "treating me as if it's crohns". But I'm not diagnosed. Hmmmm.

I've been having frequent pain since may, but it had been almost 2 years before that (aside from the occasional pain). D for almost my entire adult life...lol.


bozzylozzy said:
Oh im the same with beer.. the minute i have a mouthfull my stomach hurts so bad
Click to expand...

As for the alcohol, beer never seems to bother me (unless I'm in an episode) but anything with hard liquor or even wine sends me to bed doubled over. In fact, I had a couple piña coladas at a friends BBQ in may, and had to leave (almost made the hubs take me to the ER). Since then I've been dealing with frequent bouts of prolonged pain. Currently the pain I'm having has been since Thursday night. I'm hoping the entocort kicks in soon!

Hopefully everyone here is doing alright today?
 
Cat-

Usually I catch and release 'cause I am too lazy to clean fish. I do like fish, just not worth the trouble to clean them for me. Loads of fun!

I'd like to get a kayak, I might make a point of saving for one for next summer. Seems like it would be fun.

Nathan
 
Well, I just got back from my GI appointment. I am now scheduled for an MRE and another C-scope. YUCK!! I wasn't expecting the scope or any other tests. But I'm okay with it. He still says the Crohns thing is in the back of his mind, and he feels that if these come back negative, for the time being he can say okay, it's probably IBS, until the next "flare up" that is. Anyway, my MRE is next Tuesday morning and the scope is next Thursday afternoon. He said that the MRE is a great test b/c not only can you see all of the small intestines, but also outside the GI tract which sometimes has some Crohn's activity going on too. Not too happy about an afternoon scope, but that's better than nothing, and I might as well have it done while I'm having issues. Inside my head, I was screaming, "NO!! I'm not ready for this! I need another week." But whatever. I have to take something called Suprep. The nurse said it's pretty bad, so I'm assuming it's in the same family as the Golytely's and all that stuff. Yuck yuck yuck.

Cat, that test sounds unpleasant, but the unfortunate thing with GI issues is that so many of the tests are intrusive and involve drinking/eating something disgusting. I suppose that is our lot in life having chronic issues of this sort.
 
Nathan, I love kayaking, but honestly I had been too afraid the past few years to take it out. Too many "what ifs" - I usually pack a picnic lunch on the kayak, so what if my food didn't sit right? What if I had to have d but was in the middle of the creek? What if there were nowhere to go and there were people around? What if I crapped myself in the boat? What if I got too dizzy and couldn't paddle myself back to the car? Etc. We have a two person kayak and hubby & I went paddling a LOT during the summer of 2009. Then I got sick in Oct '09 and the kayak sat in storage for 3 years. We just brought it out and dusted it off a few weeks ago for the first time - it was great fun and I'm so glad we went, and fortunately I had no issues. Well, I did actually have to pee at one point - hopped out of the boat, walked into the woods, tried to go - and was so afraid somebody would see me peeing in the woods that I could barely squeeze out a drop! So maybe if I had to have d while on the kayak, I'd be so petrified to be seen that it'd just stay in my colon. Ha ha. Anyway, yes, kayaking is a lot of fun. If there's anywhere near you that rents kayaks, maybe rent one first and see how you like it. Or look for a cheap second-hand one online, that's how we got ours.

May, wow, your GI took some fast action! I hope this means he's able to spot whatever the issue is, and that the issue isn't anything terribly bad. I haven't even had an MRE myself - my GI had been discussing that one but that was when he instead decided to put me on Entocort and try for remission, rather than more tests. If/when I flare again, I think MRE and another scope would be likely for me too. Anyway, good luck with it all. And an afternoon scope, yuck. I hope the prep isn't super horrible, but how scary that the nurse even warned you that it's a bad one! Eek! I hope the MRE is an easy one at least, is there prep or contrast involved?

As for me, I had one cookie yesterday and am paying the price today. This seems to be a theme with me! Awhile back I had a cookie that was made with coconut flour, and my guts freaked out over the coconut and I paid for it for days, that was miserable - and it was just one cookie. This time, someone at work made cookies with what seemed like all safe ingredients. Oatmeal was the one possibly iffy one. I can eat cooked oatmeal so I thought this would be okay. I don't do hard oats though, I avoid things like granola. This cookie's texture was about halfway in between oatmeal and granola, kinda soft but kinda crunchy, so I figured I'd try it and see if my body could handle somewhat crunchy/hard oats. Nope! The answer is a resounding no. I've been nauseous and having d and crampy pains ever since. Blah! I'm just going to stop eating cookies altogether, this is getting ridiculous. I even chewed the cookie really well to try to soften up and break down the crunchy bits, I guess that didn't help much. And once again it was only one cookie that did me in! One stupid cookie is not worth the aftermath!
 
Urrrrgh. Depressed and confused now and not quite sure what to do, if anything. So you guys got me thinking on the whole tomato thing. I just kept racking my brain, trying to remember if I had eaten anything else that was red, and I kept coming up empty. So it had to be tomatoes, right? I was eating my lunch today, and I am having a bad day so I went to the sandwich shop and got my usual "safe" sandwich, and didn't even think about it. It has tomatoes in it, like it always does, so I just ate the damn thing anyway with tomatoes. But I kept thinking about the tomato thing the whole time I was eating. Then after I ate I went to take my pills and... total "duh" moment. I can't believe I didn't think of this sooner. My Asacol pills are a red color! They're not quite the right shade I was seeing, but maybe the color faded a bit as the pill passed through me or something. So I had like my 5th poo of the day and I saw "tomato" in my poo again and inspected it closely. Sure enough, it is a faded but still reddish Asacol tablet. #$&*! I'm seeing this regularly, so does this mean every time it's Asacol, or is it tomato sometimes and Asacol sometimes? I'm going to have to carefully inspect every poo now to see if it's tomato or Asacol. And does this mean I am just passing Asacol without absorbing it?? I saw a thread recently that talked about stomach ph with regards to Asacol releasing it's medicine in the right place, and it said that if ph is out of whack then Asacol would likely just pass right on through and out, so at least it's good that I'll be getting my stomach acid ph tested soon. If my acid is out of whack, and Asacol is therefore just passing through, then that's literally money I'm flushing down the toilet each month - not to mention, what exactly is keeping me in remission if Asacol isn't absorbing??? Ack! I'm so confused and upset now, and don't know what to do. What would you guys do? Call my GI, wait for the stomach ph test, something else?
 
The only prep for the MRE is to not eat, and then I have to drink some contrast, wait an hour, get in the machine and do the test. I don't know about IV contrast, yet. I don't think I have issues with claustrophobia, so I'm trying not to worry about that.

I think I've seen several people on here who have had their asacol or one of the other ones in that class of meds show up in their poo. Like the shells or something. I can't remember if it meant anything bad or not...interesting about the pH thing, and that you're getting that very thing tested. If it's a relatively new thing, then I'd at least let your GI know so he can be chewing that over. And if it's a new thing, then something must be different, right?
 
Cat- I know this sounds gross, but maybe you should dissect a pill or two out your poo! I'm not familiar with Asacol tablets, but basically you need to look and see if it's an entire tablet, or just the shell, or maybe the tablet's smaller than when it went in, meaning some got absorbed?

Also can you take them any differently? Like with Pentasa, I have powdery tablets that can't be crushed or chewed, but they CAN be dissolved in water so that's what I do. Or if you have capsules you might be allowed to empty out the capsules.
 
Asacol tablets go often come out looking whole though their active ingredient has been released. It is a common worry for rhose who take asacol when they seem what looks like whole tabs but it's fine
 
Thanks all. Little Miss H, I hope you're right and that it's just the outer coating or whatever of the tablet. Rebecca, the next time it happens I will check it to see if it's the full tablet or just the shell. It looked like a full tablet yesterday but admittedly I didn't actually stick my hand in the toilet to check. It was lighter in color and the words on the tablet had come off, so the outer part had somewhat dissolved, just not fully, and I'm not sure if there was still medicine inside or not.

Rebecca, It's different from Pentasa, it's a coated tablet (not powdery) and I'm not supposed to dissolve or crush it or break it or anything like that, just have to swallow it whole and let it (hopefully) do its thing. There's a thread in the Parents forum about this and there was discussion that you need to have a particular ph in your system in order for Asacol's coating to release the medicine inside. I have a lot of GERD issues and will be going through ph testing soon, so that's rather fortunate and maybe will shed some light onto what my ph is doing and whether it's at the right levels to break down Asacol properly.

But yeah, I'm going to have to make sure I'm seeing either Asacol or tomato in my stool each time now too. I *know* that I've seen undigested tomato in my stool before, as I've seen tomato skin (you know how tomato skin can kind of curl up? I have seen it look like that, definitely not a tablet there). Not looking forward to checking every stool, but it needs to be done at least for a little while so I can figure out what is going on.

May, I googled to find out more about the ph impedance test, and part of it sounds like the pill cam. It's a 24 hour test and you have to wear one of those monitoring belts where the data is collected. And from what I read, it sounds like the first part is unpleasant - it said they stick a thicker NG tube down into your stomach so that they can get an accurate read on exactly where your esophagus ends and where your stomach is, etc - that takes about 30 mins, then when they get that data they stick a smaller 24 hour tube down your nose which is supposed to be only somewhat uncomfortable as opposed to gag-worthy. So, yeah. I haven't gotten it scheduled yet but I think I'll take the day off of work again when I do have it as I don't want to be seen out and about with a crazy battery pack belt thing strapped to me.

Good luck with the MRE, May - if you don't think you're claustrophobic, then you'll do just fine. I had an MRI of my liver awhile back and it wasn't too bad. I had a bad reaction to the injected contrast but otherwise was fine (I didn't have to do oral contrast, just IV). I didn't feel any claustrophobia aside from when I was having the bad reaction (got super dizzy after receiving the IV contrast and needed to get OUT of the machine because I felt like I was going to pass out - fortunately the feeling passed quickly and they got me calmed down and I was able to finish the test without further incident). They did say that it's pretty rare to get a bad reaction to the IV contrast, so you probably don't need to worry about that. One more thing, dress warm (no metal of course so no zippers, rivets, etc) - I was freezing when I had my MRI! The room was really cold and they blow air through the machine, so even in sweats and and a blanket, I was cold particularly with the cold air blowing right over me. I would recommend things like warm socks, slippers, fleece pants, a warm sweater, whatever you've got that's metal-free and cozy warm. If I have an MRI again, I think I'll wear a scarf and mittens! Ha ha.

As for me, I'm doing better today, I've mostly recovered from the cookie incident (and I won't be eating cookies again anytime soon, sheesh!).
 
Thanks for the tips. I am glad you reminded me about the freezing cold room; I'll be sure to dress warmly. I'll look like a freak probably considering it's so HOT around here right now. I hope that the oral contrast ( I think it is some type of barium) doesn't affect me like the CT contrast did. I remember needing to get that stuff out fast at a certain point LOL.

Well we are, for the first time in 11 years, going out of town with my in-laws. I hope everyone comes back in one piece, LOL. There's a reason this doesn't happen ever. :) So I'll be around at some point next week to check in.
 
I had the same response to the CT oral contrast - almost didn't make it home and had to RUN to the bathroom the second I got in the door! It reminded me of prep because it hit me hard and fast, and what came out was very watery. Yuck! I'm not sure if the MRE contrast would be the same or not - I would guess not, since CTs use radiation and MRIs use magnets, so I would guess that the contrasts would be different since the machines are so different? I'm not really sure though. And as for dressing warm, you could always dress normally but bring warm stuff with and change when you get there - I had to go to work right after my MRI, so I wore regular work clothes to the hospital and changed into my sweats before the scan, then changed back into work duds afterwards. Have fun with the in-laws - I don't envy you, I wouldn't want to take that trip either! I hope you're going somewhere fun at least, and I hope your guts behave. If we don't hear from you before then, I wish you the best of luck with the scope and MRE! Break a leg! :)

So, I got my appointment set up for the ph impedance test, Sept 10th is the big day. I just talked to the GI nurse on the phone and fortunately all I have to do to prepare for the test is to not eat or drink anything for 4 hours beforehand (my appointment to get the tube put in is in the morning, so really I just can't eat or drink for a little while after I wake up, no big deal). But the nurse said that during the day of the test, they want me to do whatever triggers my reflux - so I am to eat trigger foods and exercise to get the acid going! Eek! On the plus side, this will give me an excuse to eat a bean burrito which usually will cause AWFUL reflux for me. Ha ha. I have a feeling I might vomit though if I eat a burrito and exercise in the same day, that just sounds like a recipe for disaster. I don't want to vomit up the NG tube so I will have to be careful of that! So yeah, that's my exciting news, I get to have a daylong GERD attack on purpose. :p
 

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