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Leebie3 said:
Hi FGHFYHT.. welcome to the forum.. I'm a little confused why you are laughing on a lot of posts? Or does it mean something else?
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They are a spammer and are trying to post a link but can't because they don't have enough posts to post links. I'm hoping a mod will come on soon and ban them but for now all I can do is delete their posts and limit the number of posts they have on the forum so they can't post links.
 
Got all the info and confirmation through today for the PET/CT scan, so excited, never got this far with the Pill Cam that was cancelled lol!

Scan will be in a mobile unit run by a private provider on behalf of the NHS so will be cool. They said on the phone I can read/listen to music while I rest for an hour after injection- but according to the leaflet no talking as this can affect the take-up of the contrast material. Knew it was sensitive but not that sensitive! I may just have a nap while i'm there ;)

*resists urge to insert more dancing banana's* :cool:

After reading up on this scan I can't help but feel it is perfect for my situation and have gotten my hopes high it will either dx me or lead to one!
 
He sounds like a forum troll to me.. Don't hold me to it but with a name of mashed keyboard letters I wouldn't think different..
Although, benefit of the doubt still exists until said otherwise I guess..
Not really a disease to laugh at if you are trolling. The diseases consists of a very painful journey. Please be considerate if you are mucking around on this site.
If you are a serious member, welcome
 
One week to go till my GI appointment and I'm still conflicted as to whether or not I want to stick with him or get a new GI. I'm not going to make any decisions for sure until I see how this appointment goes. But just so that I'm educated for this possible eventuality, I've been researching other GIs in the area that are covered by my insurance, and two of them sound promising. Both are female doctors, which is a plus. My current GI is male and he's SO cold and clinical, and I think a female GI might be a nice change of pace and would potentially be more sympathetic and understanding of the emotional side of this disease. Both of these female GIs are young doctors and haven't been practicing very long, so that's a downside (I think - who knows, maybe being young and eager will be a plus, they won't be burned out yet and will be excited to try to solve the puzzle that is my illness).

But I'm conflicted as to which one I'm leaning towards. One of them is actually someone I've seen in the past, she worked with my GI when she was an intern or resident or fellow or... whatever she was just before she became a "real" doctor! I only saw her a couple times awhile back, but I feel like we had a good rapport and that she showed genuine concern about my illness & symptoms. Since she was studying under my GI at the time and she wasn't a full doctor yet, she wasn't able to diagnose or prescribe or advise me in any way, but she did listen attentively and wrote down all my concerns and seemed like a caring and nice person and potentially is a good doctor now.

The other female GI I'm considering seems a bit more experienced and lists her specialty as IBD and particularly IBD in women, which really intrigues me. I don't know anything else about her though, have never met her and couldn't come up with much in a google search (couldn't get much on google for either of them). I think because they're both young and relatively new doctors that there just isn't much info on them out there. So basically, if I do decide to get a second opinion from one of these two, it'll be a crap shoot either way. So, very long story short, I'm interested in hearing which one you guys would go for. The one who has more expertise in IBD in women, or the one that you have previously met and have a good rapport with?

Okay, enough about me. Star, how odd that you won't be allowed to talk! Having a nap sounds nice though especially if they're going to make you just sit there anyway. And please, use all the dancing bananas you like! You deserve it, after everything you've been through lately with denied tests and the stupid complaint process and so on, you finally got something to go right and you deserve to be happy and enjoy some silly dancing bananas! (I never did understand why he's wearing a cape though! Ha ha)

Dazz, he was a troll, we get them from time to time. Some people are just horrible. Put it out of your mind, he's been banned and his posts were deleted. David and the other admins & mods are really great about taking care of trolls quickly. :) They look out for us.

How's everybody else today? I think I pulled a muscle in my leg, did too much with the weights yesterday. The weather is very gloomy and I'm depressed because I've been researching new doctors but I just hate change and it's driving my brain nuts. Sometimes I wonder if I have Aspergers, besides hating change and liking routine, I have a really hard time making eye contact and I'm fairly socially awkward, I tend to obsess over certain subjects, etc. Maybe I'm just weird. Sometimes I think I should go to my GP and get tested for Aspergers, but I always chicken out. For some reason I think that diagnosis would be even more scary than a Crohn's diagnosis, because then there really would be something wrong with my brain and the way I think, you know? I'm rambling. But anyway, I'm depressed and feeling blah today.
 
Hey Cat sorry your feeling blue today. i'm new to the site, and undiagnosed. If that were me I would go with the female GI that specializes in IBD. She would have a little more experience with IBD in women and thats what you need right now. And that troll hit one of my posts too. I got an email that he replyed to one of my posts. Went to the post and nothing, no reply. So now I understand why he wasn't there :lol2: Still getting use to this site and how to do things:wink:
 
Hmmm, Cat, that's a tough call. To me, though, it'd be hard to discount someone who specializes in women with IBD. That, to me, sounds promising. And honestly when I was reading your post, I thought to myself, "She should go to the IBD woman specialist." Anyway, while I'm typing this I'm starting to second guess myself, but there you have it - my first impulse, for whatever it's worth. LOL

Also you could also view it as an interview (albeit an expensive one so I don't know how practical this is), and base your choice off the first visit with the IBD woman lady. You already know how the other one is as a person, so worst case scenario, you hate the bedside manner of the IBD woman doctor and go back to the other. haha, see? I've already complicated things for you.
 
Madollimore, welcome to the club and thank you for the input. May, thanks for your thoughts too. I think I am leaning more towards the IBD in women specialist too. She's actually in the same clinic as my current GI (which is right near my work so the location is very convenient - the other female GI I was considering works out of a clinic downtown which would be less convenient so there's that too). May, I am kind of thinking, maybe I won't tell my current GI that I'm "breaking up" with him as a patient - I'll just keep him on the backburner and, as you said, have an appointment that's sort of an interview with the women IBD specialist GI and see how it goes. Worst case scenario, she's terrible and he finds out I saw another GI behind his back and won't let me come back to him - in that case, I guess I'd get a new referral to the other GI, the one downtown that I have a good rapport with. Ha ha! Now I'm confusing things! This is all starting to sound rather like a soap opera. :p Thank goodness I like my GP and can rely on him at any rate.

I guess I'm getting ahead of myself anyway, as I do want to see how my appointment with my current GI goes before I make any decisions to stay or go. I'll keep everyone posted on how it goes and what I decide to do! I think I've said this before, but if he takes me off Asacol (speficially if he takes me off and doesn't put me on anything else for maintenance of remission) then I'm pretty much done with him. Remission is the best and I don't want to jeopardize it if I don't have to - don't want to jeopardize my kidney function either of course, so I guess I'll just have to wait and see what my GI thinks of my recent blood work and whether something like Pentasa would be easier on my kidneys and still keep me in remission. We'll see!

Edited to add: I just did a quick google search of "Pentasa and kidney failure" and I got a bunch of links indicating that yes, Pentasa can be just as hard on the kidneys as Asacol can. Must be a mesalamine thing in general (meaning Lialda would also not be an option). That sucks because I doubt my GI would put me on anything stronger like Imuran to maintain remission and he won't put me back on steroids unless I flare, so if I get taken off of Asacol I doubt I'll be put on anything else to maintain remission at this point. Crap!
 
i 2nd the ibd chick chick. lol.

i got the results from my cortisol test.

i was high (beyond range) in the morning
normal at noon
at the very bottom of normal range in afternoon
and low (beyond range) in evening

and that was actually a decent day for me.

now to a GP (i don't currently have one) to see if i can get someone to listen to my symptoms and get to the bottom of this! i'm currently dx with crohn's, but it's not based on biopsies, so i do wonder because a lot of my symptoms seem to go with adrenal insufficiency more than crohn's. the only reason i really have a crohn's dx at all is because of the fistula, which i honestly think was a combination of inflammation that was already there, but i really think the GI dr either nicked me or dug too deep with a biopsy because my symptoms were pretty mild and the fistula showed up directly after the biopsy.
 
YAY Star!! :thumleft: Congratulations!! I'm so happy to hear you're getting the scan! I hope all goes well for you.

Cat...I'm sitting on the outside & looking in. First I agree that i'd also opt for the GI who specializes in female IBD. The grouping of those two words alone would draw me towards her instead of the other one.
Second, I think that deep down you already know what you will be doing about your current GI, because you've already considered what your alternate options are. Yes, you may have a good rapport with him, but it has been years for you, and still no clear diagnoses (can't say results, b/c you are in remission now). Not to say it's for lack of trying, but maybe it's now time for a fresh approach. Maybe a 'newbie' to the field will come at the puzzle that is you with an open mind and different way of looking at things! And because of the specialty, maybe she would lock onto something your current GI did not think was notable or significant.
But whatever your decision, I do wish you the very best of luck.

I've been down & out all week. Some kind of cold/virus knocked me on my butt! I've literally been in bed sleeping all week. My immune system is so weak fighting my own body that when a REAL intruder shows up there's absolutely nothing left to counter it! My hubby caught the cold from me too, and his is gone in 2 days. I'm STILL in bed on day 5, with not alot of energy.
I've begun juicing again in the hopes that my body will be able to immediately use the nutrients i'm feeding it that way.

Saw my dr yesterday & he asks me if anyone has done a CT scan on my abdomen yet. (no) He was thinking aloud, saying why not, and my response was 'that's what i'm wondering!' So maybe now i'm getting a CT scan...he was typing at his computer & asked me if i'm allergic to the dye they use, so i'll be waiting to hear about another upcoming appointment. Maybe something will show on it. He was quite taken aback when I mentioned it's been almost a year now since this 'whatever' has started acting up.
Oh yeah, he also ran the gamut of tests again..took 3 vials of blood. I glanced over the lab order; red & white blood cells, ferratin, b12, some tests for urine (as i mentioned my kidneys have been hurting me a while now), yada, yada. We'll see.

All I know is that i'm doing EVERYTHING I possibly can to try & get healthy again & i'm STILL not improving much. Something's causing this...:ymad::sign0085:
 
owwwwwwwwwwwwwww :-( my gums are SO sore! no idea why.. even the mouth ulcers I had have cleared up.. they're all swollen and it's hard to eat and I want to eat my picnic bar! *stamps feet*
 
Hello all. Long time no post. I am sorry I haven't been on here supporting everyone. I took on a new responsibility at work and I don't remember much since last July.

I was told last year that I have severe (Crohn's like) IBS. I accepted that and moved on. At least I thought I had accepted it. I am in a flare again. Really, I never got out of it. I am discovering food allergies left and right. My days are spent in the ladies room. I am so sick of this. I have felt sick, and been sick, since January 2011. I don't know if my doctor would be receptive to this. He mad eit clear since he didn't see anything on the scopes or other tests that I definitely DON'T have Crohn's. I still think it's a possibility. I have all the symptoms but weight loss, which is possible. I have been very lethargic, like my b-12 is low again. I took a shot and felt a quick jolt, but it didn't last long.

I don't know what to do. I can't eat anything anymore. I'm allergic to eggs, onion, peppers. Possibly others. I react within minutes, sometimes while still eating.

I am feeling lost and confused right now.
 
Quirkysoul! Oh, how I feel for you! Are you sorting all your food allergies out on your own by trial & error? Wow! I just had food allergy testing done - it was a blood test that my naturopath sent away to place in Seattle. They have a set group of foods that they test for...maybe they're the most predominant ones that ppl react to...
Anyways, it was much worthwhile for me, b/c I found out to my surprise I am allergic to 37 of the 95 foods they tested! Which means I am not supposed to be eating those items as my body thinks they're toxins & attacks.
So could it be a possibility that you may have a few more food allergies as well? I wouldn't doubt it if these run hand in hand with crohn's! Your intestines are not able to digest alot...makes sense to me.

Anyhow, I hope you can figure out more of your irritants. Take good care! :grr1d::grr1d:
 
Hi Meg! So sorry to hear that you're still having the same issues and aren't doing any better, and I think you're right to question the IBS diagnosis. I recall you talking awhile back about how you were doing the Paleo diet and were having some success with that - are you still on that diet or did you stop? I know you've been having some other pain issues too with your foot, not fair that your body is being so mean to you. :( I agree with Ever that food allergy testing sounds like a good idea, especially since you already know you have some food allergies, I would wager a guess that you've probably got other food allergies too that you don't yet know about.

The long and short of it with me is that I'm probably going to seek out a second opinion from a new GI soon. If your GI is sticking to IBS then it might not be a bad idea for you to look for a new doc and get a second opinion too. It sucks to start all over with a new doc, but in the end it might be worth it. I'm hoping so anyway as I'm still undiagnosed too (although at least I'm in remission, but I suspect that when I see my current GI next week that he's going to take me off my meds as they may be messing with my kidneys - and since he's said in writing that he thinks it's IBS in spite of the fact that I respond to IBD meds, I'm thinking it's time to leave him behind and get a new GI!).

Flower, I went through Addison's disease (adrenal insufficiency) testing myself. Once you get a GP, ask them about the ACTH stimulation test. That's considered the "gold standard" for diagnosing (or ruling out) Addison's. I had that test, it's a blood test that takes a few hours. They check your baseline cortisol and then inject you with ACTH, which in normal people makes cortisol rise, but in people with Addison's, cortisol doesn't rise or only barely rises. After injecting you with ACTH, they check your blood every so often (for me it was once an hour for about 3 hours) to see where your cortisol is at. Here's a link with more info about that test:
http://en.wikipedia.org/wiki/ACTH_stimulation_test
(My cortisol did rise although not a lot during this test, but both my GP and GI agreed that it rose enough to rule out Addison's so I apparently do not have adrenal insufficiency.)

Ever, good luck with the CT! I had an abdominal CT awhile back too, although it didn't find anything (it did have an incidental finding of benign nodule/tumor thingies on my liver, but my guts appeared normal). You'll probably have to drink contrast, but fortunately it's easy to get and keep down. Mine was contrast mixed with lemonade and it just tasted like slightly chemical-tasting lemonade. It wasn't too bad to drink. However, it did go right through me, so make sure you either get home ASAP after the CT, or be very near a bathroom after the CT and plan on being there awhile! (Possibly wear depends too or a pad just in case.) I had the pee-out-your-butt type of d as soon as I got home from my CT and I almost didn't make it, very nearly had an accident in the car, all thanks to the oral contrast. They'll likely give you IV contrast for the CT as well, which will most likely make you feel very warm and will give you an odd feeling as though you peed your pants! You didn't though, but you feel very warm "down there" in particular and that gives you a pee-pants feeling. It doesn't last long though, maybe a minute at most. So, anyway, good luck, and as always, the stuff they make you drink is the worst part. :p

Leebie, one of the special things about Crohn's is that it can affect literally any part of the digestive tract, meaning anywhere from mouth to anus. So if you do have Crohn's, it could be causing inflammation in your mouth & gums. Definitely let your doctor know about this. Unfortunately though it may not clear up until your flare gets under control.

How's everybody else today? I am feeling okay, I was pretty emotional yesterday at the thought of getting a new GI and all the unknowns (possibly being taken off Asacol, maybe being forced to flare, being put through tests all over again, being told it's IBS, and so on). I'm feeling a little bit better about things today although I still hate that there are so many unknowns. I really like to have a plan and to know what's going to happen or at least to be as prepared as possible for what may happen. And I feel like I'm not prepared at all as there are so many variables and that does depress me! It shouldn't, I know. Life is all about surprises and I should be used to that by now. I hit the gym hard today and that makes me feel a lot better and less depressed. I guess I just need to exercise 24/7 and then I'll feel great all the time and won't worry about a thing! Ha ha. :p
 
Cat-a-Tonic said:
Leebie, one of the special things about Crohn's is that it can affect literally any part of the digestive tract, meaning anywhere from mouth to anus. So if you do have Crohn's, it could be causing inflammation in your mouth & gums. Definitely let your doctor know about this. Unfortunately though it may not clear up until your flare gets under control.
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really!? I thought it was just ulcers :-( I'm actually starting to get a little scared that it truly is an IBD :-s I guess I've been able to convince myself that it's probably just severe IBS and although the GI said bleeding isn't an IBS thing when i mentioned that to him I guessed it could just be a hemorrhoid and that I was just here because it was a far fetched maybe.. WOW. *breathes* my gums are starting to get bleeding under them and the surface is breaking down almost as though my gums are ulcerating.. is that possible!? it's sure blimmin painful! at least it's taking my mind off my belly atm LOL

How's your leg Cat?

@ever.. how are you feeling now ??
 
Hi peeps, i went to see my "womens" physiotherapist today. and she knows the urologist im going to see in a couple of weeks.. and says he's really good! She also thinks its worthwhile me. being tested for MS. I dont know how they test for that though?
I keep getting tingling in my right hand. Plus flashing my left eye, urine incontinence, periods of feeling confused and weak.. plus i get hot flushes amd struggle with heat.

geez louise.... :-(
 
Oh Bozzie! ...hang in there! :ghug: I sure hope the dr's can get to the bottom of your symptoms.

I'm doing significantly better than mid-week. Still working on it. My dr's office called me yesterday to schedule a follow up, so SOMETHiNG must have shown up in my blood work. That's positive. I'm quite curious as to what it may be though. Likely something that's not news to me...like i'm anemic or low on a few of my vitamin levels or something. We'll see.

I hope the rest of you have a nice, slower day today. Maybe a calmer tummy day too...all the best you guys. Take good care. :heart:
 
Star, sending you tons of well wishes today! Good luck with the PET scan!!

Bozzy, I think Rebecca went through MS testing recently, and I think the testing involves doing an MRI of your brain. I don't know if there's other tests but I think that's the big one. MRIs aren't bad, I had one of my liver last year. Sometimes they tell you to stop breathing for a little while (like 30 seconds) although I don't know if they'd do that with a brain scan or if that's more for abdominal scans. They will probably inject you with contrast. Mostly though you just lie still in this tunnel thing and you can listen to music on headphones. If they do want to do an MRI of you, dress warm! You can't wear any metal so no rivets, zippers, etc. But bundle up as best you can, I remember being freezing cold even with a blanket on during my MRI. I just wore sweatpants and a sweater. I would have dressed warmer had I known. Anyway, good luck with the testing, I hope it leads you to some answers!

Ever, good luck with the follow-up, I hope your instinct is right and that they found something noteworthy in your lab results. Glad to hear you're doing better and I hope that continues.

I am preparing my questions and myself for my GI appointment on Thursday. I looked over my own notes from awhile ago and the letter that my GI had written, and I realized that it was written literally on the same day that he said I have IBD. I thought he had written it some time before then, but no. So, at my appointment that day I asked him point blank, "Do you think I have some type of IBD or not?" He looked me in the eye and said yes, I do. Then later that same day he wrote the letter to my GP, saying he thinks I have IBS and that he's upset that I've got some silly notion in my head that I've got IBD. Grrrr! I know I said I won't make any decisions until after my appointment in a couple days, but I am seriously 95% leaning towards getting a new GI and this IBD in women specialist is looking more and more promising (if only because my current GI is looking less and less promising!). I think when I have time a little later on today, I'm going to show you guys everything that letter said, I'll type it all out on here (I only have a printout so I can't copy/paste so it'll be time-consuming and I don't have time right now). Then you guys can let me know if I'm being crazy or if the letter really is as insulting and lazy and jerky as I think it is. The more I think about it, the angrier I get, so maybe I'm just too angry and it's not all that bad. So I'll put it on here and see what you guys think.
 
Okay, here's the letter my GI wrote. Anything that's in blue is my own annotation and isn't part of the original letter.

Dear Dr. _______: (My GP)

I saw _________ (My name) in followup today on September 22, 2011.

She is 31 years old (I am 32 now) and I have seen her in the past for abdominal pain, gastroesophageal reflux disease and diarrhea. Her GI workup in the past includes an upper endoscopy in August of 2010, which was normal, a video capsule study last year, which was negative, and a colonoscopy with random biopsies last year, which was negative as well. She was given oral prednisone briefly last year by her PCP (Note - it wasn't given to me by my usual GP, I saw a very bad doctor and demanded to try it), which resulted in improvement/complete resolution of her GI symptoms. She experienced a subsequent recurence of symptoms upon withdrawal of prednisone. Somewhat reluctantly, after a rather detailed discussion in the clinic, I briefly (Briefly = 7 months) treated her with oral budesonide (not with prednisone) and again she had a good clinical response with resolution of symptoms. Fortunately I was able to take her off oral budesonide and transition her to oral amitriptyline along with omeprazole.

I have all along been reluctant to label her as having inflammatory bowel disease in the absence of any clear endoscopic evidence to support the diagnosis (video capsule study was negative as well). Inflammatory markers have also been negative in the past apart from very mildly increased C-reactive protein once. Stool studies have been negative and stool for leukocytes was negative also. (These next two sentences are the ones that really get my blood boiling.) My overall impression is that her symptoms essentially represent diarrhea-predominant irritable bowel syndrome along with gastroesophageal reflux disease and postprandial abdominal pain syndrome. I cannot explain the clinical response first to oral prednisone and subsequently to budesonide. (Really, maybe that's because it isn't IBS, jerk!!) Unfortunately, due to this response, she is convinced that she has inflammatory bowel disease and experiences occasional flare-ups. Additionally she now also reports having hip pain and tells me that she has been diagnosed with arthritis (GP says arthritis, orthopedic surgeon says bursitis) there again that is in association with inflammatory bowel disease (I never said that, I said I know that often times arthritis and IBD go hand in hand so it seemed suspicious to me).

I had a detailed discussion with her in the clinic today. With the mild upswing in her symptoms (diarrhea and abdominal pain) we might consider a trial of treatment with mesalamine that we sometimes use in treating microscopic colitis, et cetera, that would be safer than going down the prednisone/budesonide route again. (He did put me on Asacol about a month after this was written.)

Sincerely,

Dr. _______ (GI's name)

What do you guys think? Am I making too big of a deal out of this? Remember that he said to my face that he thought I have IBD earlier in the same day just before this letter was written. And as I've said in the past, he changes his mind a lot (takes me off my meds, puts me back on them when I complain, sporadically changes dosages for no real reason, etc). I'm really upset though about the "I don't know why she responded to pred but I think it's IBS" part, like maybe he thinks I responded to pred because I'm crazy or it was a placebo effect or something? So I'm crazy and have IBS, is that what he seems to be saying? Or am I reading way too much between the lines here? I just feel like the tone of this letter is really condescending towards me, she "feels" she has IBD and she "thinks" she has flare-ups and how "unfortunate" that is because she's a stupid silly person, etc. Ugh, I just don't know what to think. What impression did you guys get from the letter? Am I correct to feel so insulted?
 
it sounds like he is saying you're telling him how to do his job. you'd think he'd leave that BS out.. especially as you get to read it!
whilst you may appreciate that he cant give a complete diagnosis of an IBD without concrete evidence.. so his hand are kind of tied on this one. HOWEVER, he should also know that this type of disease can take many years to get diagnosed. and should therefore treat you with more respect.

ultimately it comes down to how you feel he's handling your road to a diagnosis and treatment - and your feelings!! he's not the one who is ill and doesnt know whats wrong with him.

i think you should seek a second opinion - it cant really hurt to do that?? (i hope not anyway.. dont really understand how it works in the USA vs UK)
you need somebody who is pro-active and willing to try new things to help you. even if more and more results come back negative, your doctor needs to be SYMPATHETIC to your feelings and illness - even if the illness doesnt have a name yet.
 
my urology appointment has been moved back to the 9th of may now.. i think the consultant is unwell. because when i made my appt initially - the secretary said he'd cancelled all of his clinics for 2 weeks. (i have this appt booked on my private insurance, not on the NHS by the way)

im dreading the thought of having an MRI - im really claustrophobic :(
but its not definite yet that i'll even get tested for MS. its was just my women's physio (who tested my pelvic floor) said that i should ask to be tested for it. because my pelvic floor is fine, and when i experience the urine incontinence - i cant physically stop myself!!... :(
 
@Cat: He makes it sound like you have convinced yourself that you have IBD b/c of response to steroids, the occurrence of flare-ups and arthritis. I would dump him. He clearly is going to lean towards treating you for IBS, in the absence of clear endoscopic findings, or whatever he said. Definitely dump him if the letter was written in the same day as when he told you he thought you had IBD. I mean, it's one thing to change your mind, but then to basically put all the blame on you as far as this IBD dx is concerned. Yeah, I don't like him.
 
Bozzy, that may be that I've been a bit bossy with him (demanding to try IBD meds, demanding to be put back on meds when he takes me off of them, etc) but if I don't do that stuff then I'd just get sicker and sicker again. If he interprets that as me telling him how to do his job, well then, he should try on his own to be better at his job! Ha ha

And no, it can't really hurt to get a second opinion. My insurance will cover it and everything and my GP should be fine with writing me a new referral. My only concern is, the new GI I'm thinking of seeing is in the same clinic as my current GI, so he will find out that I'm seeing a new doc. If she doesn't work out, he may not take me back as a patient so in that case I'd have to seek out yet another new GI. Worse-case scenario, I'd go from GI to GI for awhile until I either find a good one or exhaust every GI in my area that is accepted by my insurance.

May, thank you. He is very much "by the book" hence the "lack of endoscopic findings" and phrases like that. I guess by his logic, even though I "fit" IBD in terms of symptoms and what meds I respond to, because there's been no evidence of IBD then there is no IBD. And therefore, if there is no IBD then it must be IBS. I think I need a doctor who has a less rigid "by the book" way of doing things, so hopefully this IBD-in-women doctor has a less uptight attitude. I'm going to give her a try I think. We'll see how Thursday goes for sure. Still not sure if I'm going to confront him with the letter or not.
 
Sick of being sick

Hi. I'm new to this whole forum thing. I never expected my first forum post to be on Crohn's Forum. Anyway, I'm only sixteen years old and I am already so tired of being told "It's nothing"
A couple of years ago, I had pretty severe headaches. They continuously got written off as nothing, so I let it go. About eight months ago, I started dealing with abdominal pain, especially after eating. It would happen for a couple weeks, then go away, so I didn't worry too much about it. I figured I was just growing. But the times that I could eat without pain became less and less frequent. Along with the abdominal pain, I found I had both constipation and diarrhea and bite-like sores around my legs. I feel fatigued and unusually week. My mom took me to the doctor where they took blood tests. But guess what, those blood tests all came in "fine". The pain is worsening, and I know this isn't normal. I've done a bunch of research about Crohn's and I've found that more and more symptoms are arising in myself. Through research, I've also found that blood tests often don't detect Crohn's. Here's the problem: My mom doesn't want to hear it. She took the negative blood results as a finality. I'm almost certain it's not simply a little virus, but I have no idea how to get my mom to think the same way, and she pays the hospital bills. What do I do?:sign0085:
 
Unanswered: My heart goes out to you. I can't imagine why your mother is not listening to you :ghug: I am sorry I did not reply sooner but I took a little while to come up with some suggestions.

Firstly, is there a friend or other family member that you can go to for help, and who your mother would take seriously and realise you have problems that need further looking into? Perhaps an aunt, uncle, grandparent, dad or a family friend? An older sibling who will fight for you? Maybe a teacher or perhaps your school Nurse?

What did your Dr say/suggest when they gave you the normal blood results? Is there a way to consult your Dr without your Mom present/know you are going, see if they will take you seriously and then speak to your Mom on your behalf.

Secondly, these suggestions are unlikely but I thought I would put them out there. Do you by any chance work and does your employer offer health insurance? Is there a friend/family member who was sick, but their blood tests were fine and it turned out the had something bad, that you can use as an example? If your Dad is in the picture can you go onto his health insurance?

My scan went fine yesterday, was a much longer day than I anticipated though. They were running behind and usual problems getting contrast in to my veins (only 2 tries- his face when he asked what my record was and I said 13! :ylol: ). Then I got lost coming out of the Hospital- it's so confusing there, I exited ground floor west at the back, but I needed to go out first floor (I know!) east at the front. Then I just missed a train and had to wait 30 mins for next one (although that allowed me to shop for snacks which was good), and we had an unscheduled stop for 10 mins due to a tree on overhead cables- I thought we were going to be there for hours so was pleased it wasn't long!

The tech was great, no idea what Rheumy put on referral form, but he said there was obviously something wrong with me, and knew we were looking for something subtle, so he spent time getting me into the best position on the bed. He was disgusted I got refused the test last year. They scanned "eyes to thighs" as the nurse said.

Forgot to ask when the results would be sent through. But it says 48 hours on leaflet and I see Rheumy 28th May, so it's anyones guess.
 
Oh Star! I'm so glad you had your scan and that they were extra careful to get EVERYTHING. I hope you get some results this time. My fingers are crossed for you!

Just got back from my dr's for a follow up to my last blood tests. There were a few abnormalities, but nothing that was news to me. Markers for inflammation (really?! no kidding...:yrolleyes:), my white blood cell count was low and I have crystals in my urine. Yep, I already knew I had inflammation, but now they have proof on paper, and considering i've had kidney stones & one within the last month, that's not news to me either.
My CAT scan with contrast is on May 8. He said that he wants to make sure there are no masses in there. And he's anxious for me to have my colonoscopy & endoscopy in June. He did mention that it's possible that EVERYTHING could be caused by adhesions throughout my intestines, caused from previous surgeries when they still used the rubber gloves with talc on them. He says that the talc inadvertently gets inside the abdominal cavity & can adhere different parts together. It certainly is an interesting theory. Who knows!

I hope everyone is having a decent week. I'm still exhausted, but on the mend, so that's positive. You take care all. Smiles & sunshine to you all!
 
Hi Bozzy, as Cat says I have recently undergone testing for MS. First I had a brain and spine MRI. The MRI room is indeed cold- that was the worst part for me. It doesn't feel too claustrophobic in there, it's well lit and ventilated. they do put a cage thing around your head to hold you steady, but it wasn't tight like a helmet- more like a birdcage! And they talk to you, play music, and give you a panic button so if you do need to they will have you out in a jiffy.

I think you are allowed to take an anti anxiety medication beforehand if your GP will prescribe you one.

The next step would have been a lumbar puncture (spinal tap). But as a) my MRI was abnormal and b) I'm pregnant, they decided not to do that.

They did however take bloods to rule out any other possible causes for my symptoms and the MRI abnormalities. I had already had nerve conduction studies done, to rule out a peripheral nervous problem.

For the moment I have a diagnosis of CIS, which essentially means a single attack of MS. I might be lucky and never have another attack, but if I do then it will confirm full MS.
 
@unanswered- im so sorry that your mum doesnt want to investigate things further. because even if u just had IBS.. the stress of not knowing makes your symptoms worse! So its definitely worth while ruling out serious conditions.

@star - fingers crossed you get your results soon!

@rebecca - i must admit im getting a bit anxious about all this. i didnt even think about MS at all until she mentioned it to me. can i ask what ur MS symptoms were? (Apart from your bowel/abdominal issues)
 
Thank you! I am due 26th October, I'm almost exactly 3 months gone. It's too early to tell what we're having, but my sister in law is absolutely convinced I'm having a boy. My next scan is 14th June and we might be able to find out then.
 
so exciting! i was convinced i was having a boy.. then along came my 20wk scan and was told i was having a girl.
and from then on she seemed to have her own personality whilst in my belly! she was such a monkey.. kept kicking my ribs so hard i swear i felt them vibrate! haha!

good with everything! hope your pregnancy/birth runs smoothly :)
 
StarGirrrl: Thank you so much for replying! Just knowing that there is somebody willing to take the time to hear me out and reply means a lot. I have not seen any specialists yet, but I do work, and my job does offer health insurance. My regular doctor put me on Prevacid, so I decided to take that until it's out and see how my symptoms are then. My mom thinks all of my symptoms are due to stress. I'm skeptical, but I really would like her on my side for all of this, so I didn't write that off. I am glad your scan went fine, and I hope your results are as well. :ghug:

bozzylozzy: Thank you, also! Wow, this forum really help. It's so nice to not feel alone in this. I wish you the best of luck with your urology appt. I'm sure having it pushed back isn't wonderful, but I hope that all goes well :ysmile:
 
Unanswered, you are more than welcome, and thank you for your kind words. After 5 1/2years of being sick, a diagnosis, even something bad, would be wonderful!!

I am glad you have another route open to you if things don't go well, but hopefully they will :)
 
Hi there

Hi there
Think that possibly i fit the criterea for membership of this club,your all great on here hope that im not in the club forever though :D
 
Hi all, I'm here! This training class I've been in for work has been exhausting. Plus, they brought in lunch for us yesterday - my choice was pizza or salad. Well, being lactose intolerant, pizza is never a good idea, and I can sometimes do salad, so that's what I chose. It turns out that yesterday was NOT one of the times I could do salad though, and I've had awful LRQ pain, trapped gas pain, crampy pain, and d ever since. Miserable! I'm hoping to recover soon, usually food doesn't hit me quite this hard so I really hope this isn't the start of a flare. I had a couple dizzy spells yesterday afternoon which was scary because I usually only get dizzy in a flare. I'm feeling better today but still not great. Ugh.

My GI appointment was interesting and I'm not sure how to proceed from here. First of all, he was happy to keep me on Asacol! I guess I had read my blood work results wrong, it's not affecting my kidneys at all (if anything, I am leaning towards malnutrition, which is interesting considering I've been feeling so well and having such normal poos lately - up until the salad incident at least). So my kidneys are good and I get to stay on Asacol. And, he apologized for the letter. I didn't even bring up the subject - he did! I don't know if he sensed I was upset or if my GP talked to him about it or what (or if he's been reading the forum and knows who I am??? Eek!). But yeah, he said he didn't mean to convey that he thinks I only have IBS - he said he knows I have a real, legitimate illness, and he thinks that I might have both IBD and IBS. I still don't buy into the whole IBS thing but at least I know where he's at (right now anyway).

So, since he's still saying IBD and is keeping me on my IBD meds, I don't know that switching GIs would be a good idea right now. Ugh, I just don't know what to do. I don't anticipate getting a diagnosis anytime soon anyway - my aunt (who had symptoms for 30+ years and just recently got diagnosed with Crohn's) told me on facebook the other day that, since I haven't been ill long enough for stuff like scar tissue to develop, in her experience they can do a million tests on me and won't find anything for years to come. I know her experience isn't typical although I do know the average time from onset to diagnosis for autoimmune illnesses is about 10 years, and I've only been ill for 2 and a half. And I'm (hopefully) still in remission so I'm sure nothing would be found if I switched GIs and the new doc wanted to run a whole lot of tests on me. As my aunt said, what I really need a GI for right now is to be my "drug pusher" and keep me on Asacol and give me steroids when I need them (my current GI has said a few times that he'd put me back on Entocort again if I need it). So, again, I just don't know what to do. What do you guys think?

Sorry for not being around much lately. I have one more day of my training class (Monday) and then hopefully things will be back to normal! No more salad for me either! I hope everyone else is doing okay, big hugs to all.
 
hey Cat, that is great news about the GI! stick with him.. for him to apologise shows that he really did think about what he'd said and it takes HUGE guts for a 'professional' to admit they were wrong so I think that shows he has compassion. From what you say it sounds as though he HAS given you the diagnosis?? you have IBD and IBS (same as me :-D) the IBS makes the pain seem so much worse because of the nerve endings in ibs being hypersensitive to stimulation from pain/inflammation/stretching// whatever.. they are uber sensitive. at least that's my theory why my mild ibd has caused SOOOO much pain for me :) My gp or gi won't medicate until I have confirmation from colonoscopy and I'm looking at 9 months before I get that :-( a little scared that in the meantime my inflammation is doing damage.. so really it's a great thing that yours will give you the meds! :)
 
Leebie, it's an unofficial diagnosis at best (which is essentially what I had before this appointment anyway). My official file still says that I've got "chronic non-specific enteritis" which is just a placeholder that doesn't really mean anything. He won't officially diagnose me with IBD until one of my tests shows something, and so far everything has been normal. And that's fine, I'm still a bit annoyed that he thinks I've got IBS too (I don't think I have IBS, nobody even really knows for sure whether IBS actually exists or if it's just something they say you have when they don't know what's really wrong with your guts). Yes, he kept me on my meds, yes, he apologized, no, he didn't back down completely from the IBS thing and obviously no he didn't diagnose me yet. So I'm still torn! I guess my meds are the most important thing, they're what's keeping me in remission. I still don't know what to do really though.
 
Hi cat! Im so glad ur doc apologised. i think he probably is stuck between a rock and a hard place. its just annoying when theyre pretty sure of whats wrong but the tests dont match up!
Anyway.. hope the meds continue to work :) xx
 
Well, that's good that he apologized, Cat, and weird that he brought it up, but whatever, right? At least he kept you on your meds, which is the most important thing. It still seems to me that in your case, he is constantly second-guessing himself. So it probably wouldn't hurt to have alternatives in the back of your mind should the need ever arise. I'm glad your appointment went well, though. Have a great weekend, everyone!
 
I got a response over my MRA failure complaint. Apparently it was all my fault as I was "very anxious" (news to me) and I "moved too much during the scan/ had problems holding breath" :ymad:

They really do find new ways to insult me! Never mind the fact that in years this is the only test needing to be repeated/failed, and the tech never told me I was moving too much, it's still all my fault!

Going to write back and dispute these, but since i've had a far superior test no point in it going any further after that.
 
I really hate it when the emails stop coming telling me there are more posts on this thread! :( I feel awful for not checking it sooner!

I hope everyone is doing well!

Rebecca, congrats on your pregnancy, that is so exciting!!

Quirky, I'm sorry you are still not doing well. I was diagnosed with severe IBS at first too, I almost tried to accept it, and I'm really glad I DIDN'T. Because yes, I do have IBS, but it is being caused by an autoimmune disease!

I went and saw my GP this past week to get more pain meds and to make sure my refferal to my rhuemy was ready to go, and it didn't go as well as I had hoped. She hates that I'm taking tramadol every day, and she wanted to bargain with me on how many tramadol I should get...it really sucked! I am now given two a day, not three. She made me feel two inches tall when she kept telling me I was in the wrong with taking tramadol as regularly as I do. ~.~ If they helped me more, got me a better treatment and a more solid diagnosis, this wouldn't be happening!

I have been taking a natural sleep aid this past week, trying to get better sleep so that I can heal better and my pain be better without pain meds, and it has 2.5 mg of melatonin in it. It says on the back of the box that it should not be used by patients with autoimmune diseases, because melatonin and boost the immune system. I did a ton of research about it, and most said it was just a caution-type warning because the research has not been done to absolutely say it isn't good for AI diseases.

Well, I feel like an idiot taking that supplement. My lower back has been bothering me this week, which is really not normal, but I passed it off as withdrawal symptoms because I am having to take less tramadol. Well, yesterday the pain moved to a specific spot where my left kidney is. It really hurts. :( My hubby is really afraid that the melatonin kicked my MCTD into high gear where it was damaging my kidneys (MCTD is known to damage the heart and the kidneys the most). My kidney hurts more than my stomach! I've obviously stopped taking the melatonin, but I am so worried that I am going to end up in the clinic, or worse the klinikum (German hospital), this week. Germans don't play around when it comes to health...even when they didn't know what was wrong and barely had a treatment for me they wanted me to be in the hospital for over a week. :( I'm hoping if I rest and drink lots of fluids this can just fix itself....
 
Crohn's in a toddler??

Hi! I am totally new to this type of thing! I have read some of your stories and they are heart wrenching - I hope you all get answers or at least useful medications soon!
My little boy (youngest of 3 - so I know what normal childhood illnesses are like) has had vomiting and Diarrhoea since he started on solid food (nearly a year and a half ago). The diarrhoea is nearly constant (he will do the occasional normal motion) and the vomiting comes in bouts (roughly every 10-14 days lasting 4-5 days), he seems to be in discomfort and sometimes severe pain (rolling around on the floor screaming, won't let me touch him). He gets lots of mouth ulcers, and seems have extreame teething episodes (dribbling like he cant swallow etc), He has had a couple of bouts of bleeding around his anus (has small erosions - like the top layer of skin has come away in patches), and gets odd rashes (legs, face, tummy). He has a persistent iron deficiency anaemia despite supplementation, and a few other abnormal blood results. We have been to GP's, health visitors, paediatricians, Paediatric gastroenerologist - and have had every comment from 'well he's just going to be small', 'he has a virus', to 'Mrs x - you have a 100% healthy baby boy'. I have been made to feel like I am making a massive fuss - to the point where I actually question myself. He is due to have a barium swallow on Thursday and endoscopy and biopsies in a couple of weeks - I am terrified that they will find something and just as terrified that they will find nouthing!!
We have no crohn's disease in the family (that I know of) although I suffer from 'IBS' caused by stress (sickness, constant diarrhoea, abdominal pain, weight loss - no IBS medication has ever helped, recently I have had mouth pain - like the skin on the roof of my mouth and gums has come away and extreame fatigue - put down to having 3 children under 5) - I had just accepted the Drs Dx of IBS but after reading everyone's stories I'm wondering if they are wrong!!
But I'm really on here for my son - I know its very rare in a child so young (22 months now), but has anyone else been through anything similar?? I feel a bit like I'm just some crazy person!!
 
Hey Suzysu,
Welcome to the forum. You might want to check out the 'Undiagnosed Kids Sub-forum' in the 'Parents of Kids with IBD' section of our forum. The parents there could help you with questions and tests to ask your child's doctor about.

It can be very frustrating trying to get answers when our children are ill.. Don't give up and don't question yourself--you are doing a good job advocating for help for your child. :hang:
 
Suzysu, welcome - have you found the "Parents of kids with IBD" section of the forum? We don't really deal with undiagnosed children in here, and I'm afraid I wouldn't know what to tell you. A few parents of teenagers post in here but for younger kids I would highly recommend you check out the Parents forum as they would be much more helpful to you. I would like to say though that you mentioned some worrisome symptoms in yourself - things like unintentional weight loss and mouth sores are not part of IBS and could be due to something like Crohn's. I would highly encourage you to get a second opinion for yourself as it doesn't sound like IBS to me! Good luck, it's got to be terrible to both be ill yourself and to have an ill child. :( Crohn's Mom, if you see this, are you able to give her any advice from your perspective? (CM is a parent of a teenage Crohnie, parent of two undiagnosed children, and is ill and undiagnosed herself so hopefully she can give you some advice and info!)

Allie, that's really scary about possibly damaging your kidneys! If you go to your GP, could you get them to test your BUN and creatinine to see how your kidneys are doing? (BUN and creatinine are the blood tests I had done by my GP to see if Asacol was damaging my kidneys, I'm not sure if there are other kidney-function blood tests besides those but at least they'd be a good place to start.) Good luck, I hope it was just a fluke and that your kidneys are fine! Worried about you, please keep us posted.

Star, how endlessly frustrating! Not only does their incompetence know no bounds, but then they put the blame on you! You had the PET scan at a different hospital, right? So presumably more competent techs performed that one? I hope so. Hey, I thought of you the other day, I remember that thread in Members Only awhile back about British TV shows and you and I were talking about Doc Martin. They're finally airing series 5 here in the US and I've watched the first 3 episodes so far (they just named the baby at the end of the episode I watched most recently). It's quite good so far, and in that most recent episode there was that guy who kept passing out. As soon as Doc Martin examined him and said his skin had dark discolorations, I said to my hubby, "Oh, I bet it's Addison's disease." And it was, ha ha! Anyway, I'm finally getting to watch series 5. Do you know if they're making a series 6?

May and Bozzy, thanks! I'm tentatively sticking with my GI for now but I'm still weighing my options. For now I'm still doing well and glad that I got to stay on Asacol (and I've fully recovered from the salad incident, ha ha). I saw my parents yesterday and my mom said that she's so glad that I got to stay on my medicine because it's clearly working for me. So yeah, I'm still a bit torn but staying on Asacol has to be priority #1 right now so that's where I'm at.

How's everyone else doing? Sunshine, are you doing any better? Hugs to all!
 
Hi SuzySu , and welcome :)

I have requested that your post possibly be moved to our Parents section..I hope you don't mind..I think you will get lots of much needed support there ! :)

As for your poor babies symptoms ~ you're not a crazy, or over reacting mom! It's unfortunate that nothing has been found to help yet, but I believe that with the upcoming barium X-ray and scopes that you are on the right track.
I don't think you're far off with thinking that they may have your diagnosis wrong either.
You poor thing, this must be so frustrating and overwhelming to you :(
Come on over and join us parents ~ they are wonderful and so compassionate and full of information ! :)
Hang in there
:ghug::ghug:
 
Thank you! - as I said I'm new to forums and this type of thing - and am just getting to grips with it!! - thanks for re-posting my post!!
If my little one does get diagnosed then I will definatly be going back to the Dr for myself!!
Good Luck to you all - the way you all give support to each other and even to people like me is amazing - I am in awe!!
 
Hi Cat, i'm not really surprised they blamed it on me. I expected them to say I was too fat for the dye dose or something lol. Yes it was another Hospital I went to for the PET/CT. I had a nice little dig in my response letter about "far superior test" and "another bigger Hospital". :p

Yes, there is going to be more Doc Martin! And although they usually only make a series (sorry, season) every two years, they are making season 6 and showing it next year :)
 
Star, if series 6 comes out in the UK next year then it'll probably be 2 years for me to get to see it, ha ha. I don't know when series 5 first aired in the UK but I know it was awhile ago that you and I chatted about it so it does take awhile for it to be aired over here. I don't know why that is. There are a lot of Brit shows I like and sometimes they're hard to find over here. But I'm happy to hear that season 6 is being made and my hubby will be happy too, we both really like that show (hubby calls it the Brit version of Dr. House, ha ha).

I'm glad the PET scan was at another (and far superior!) hospital. :) Any word on when you'll get the results? And, I'm guessing that this hospital that you had the PET scan at is the one you may end up going to permanently if your current hospital keeps being a dead-end? Would you still be able to see your rheumy but go to the better hospital for everything else? Would they do other rejected tests such as a pill cam for you at the better hospital?
 
We had Season 5 last fall :)
Results anytime between now and 28th May which is Rheumy appointment. No idea if I will be called in or will have to wait until theappointment.
The Hopsital I went to last week is one of just 3 regional locations they offer the PET/CT scans and it's luck of the draw where you get sent- of course the other two were closer to me! Rheumy wants me to go to Addenbrookes and I am happy to go with his recommendation. I wouldn't neccessarily see him as well since we are at the end of the road now and he would refer me on to elsewhere. Addenbrookes is 90 minutes by train (one an hour there and back) and 10 by bus though :( Last week was hard enough, and that was 50 minutes by train (2 an hour there and 3 back) and 25 by bus.
As current PCT fund my care, even at another Hospital, it's very unliklely I will get a Pill Cam since they would still have to ok the funding. They've refused in the past as you know and it's a sheer miracle they said yes this time to the scan!
 
Going a little OT, while some shows such as CSI& Desperate Housewives are very up to date- within a few episodes-, we are years behind on NCIS, Law&Order SVU and American Dad :( Even the pay tv channels are quite behind (I have "free" tv only)
It's very hard not to give into temptation and watch online (which I am doing for Glee since it's only on pay tv now).
 
my sky tv has a channel called sky atlantic. its awesome! Just watching game of thrones on it. (I love how any medieval programmes the actors are all northern english! I feel right at home!) Haha
have any of you watched homeland? i think we're a season behind over here?
 
Thanks Cat. My husband is more worried than I am, and today he was going to come home after PT (Army speak for group workout) and take me to the clinic himself, but this morning I sort of begged him to let me try resting and drinking lots of fluids for one more day. He actually has damage to his left kidney himself, from when he was a kid, and he does not want me to go through the same thing. I know why he is so worried...I really have not been myself since this got this bad on Saturday night. But I really do not want to face my GP again and this be nothing! :(
 
suzy -- you should have that baby checked for food allergies! especially since it started with solid foods. we didn't realize our kid had milk and egg allergy til solids. the rashes really made me think that. when our kid eats eggs anywhere he touches it he breaks out in a rash, he throws it up, and what little that got through irritates him all the way down and out through the anus.
 
Thanks flower girl! - I did think allergies especially as he often has runny nose, sores round his mouth and nose and itchy looking eyes, however I have done a milk free food trial, kept food diaries, and apparently he has had the allergy blood tests - all negative. He was also part of a study when he was really little (but had started solids) and had some intra dermal patch tests (all negative).
The rashes he has are not typical allergy like rashes - odd raised sort of scaly areas on his legs and then small raised red spots all over his tummy, dry flaky skin all over his back - It seems to come and go - looks good at the moment - the GP had no idea what it was, and gave me a steroid cream (which made little difference), The gastro guy commented on it but didn't say it may be connected to anything.

Bozzylozzy - I love homeland!!
 
Argh! I had written a lengthy response, hit "post", got an error and it didn't post and I lost it. I hate when that happens!

So, here's the short version.

Suzysu, google "erythema nodosum" and see if that might be what the rashes/bumps are on your baby.

Allie, I'm with your hubby on this one, get it checked out! My grandfather goes to dialysis 3x per week for kidney failure, it really sucks - get it checked out sooner rather than later, hopefully that'll avoid further damage (assuming there is kidney damage to begin with).

Star, I know there's a way to watch Hulu from other countries (google it) and Hulu has lots of current episodes of US TV shows. I'm almost positive they have American Dad and they likely have the other shows you mentioned too. Hulu is free here (there's a paid version too but the free version is fine with me) so it seems silly to me that they try to block other countries from having access to Hulu, but I know there's a way you can watch Hulu from outside the US.

Okay, I'm going to hit "post" now! Hopefully it works this time!
 
Thanks Cat. None of my symptoms have changed still, and I am getting tired of it, so it looks like I will be going to the clinic tomorrow. :( The only other reason I would be having pain in this spot is if I pulled a muscle...I have brought this option up with Stuart a ton, and he made me realize the pain started while I was on my laptop in my recliner...how could I have pulled a muscle just sitting there?

I think star already knows about Hulu, but Cat is right, the new episodes of American Dad are on there, as well as Glee. I know you can't access hulu outside the united states legally but I do it, and I also have a hulu plus account to be able to see the newer episodes faster and I am able to see a much wider amount of episodes. I use software to trick Hulu into thinking I'm in the united states so that I don't have to use a website that will slow down the speed of the streaming. Its called Hotspot Shield. The free one has ads, which you can get used to, esp if you watch the episode on full screen.

They have to block hulu from other countries because they do not have the rights or licensing to show them in other countries. :(
 
that hotspot shield is AWESOME to know about! Thanks Allie! I miss my New Zealand shows and haven't been able to watch them from Australia ;-( Hope it works!


Arohanui (much love) to everyone!
 
Hi!
Cat - it looks exactly like erythema nodosum! - it has faded now but I guess it can come and go?
Allie - good luck at the clinic today.
 
I request anyone who is in the undiagnosed club for a long time and has the following symptoms to get a PPD skin test and Quantiferon gold blood test to rule out abdominal/intestinal tuberculosis

1. Abnormal mass/thickening of terminal ileum
2. Inflammation in terminal ileum as well as cecum and ascending colon
3. Night sweats/chills
4. Weight loss
5. Lower right abdominal pain/bloating/loss of appetite
6. Occasional fever of unknown origin
 
Hi ABC, welcome to the club. I saw your "My story" thread as well and it looks like you were diagnosed with Crohn's but are now questioning that and are thinking maybe it's intestinal TB? I don't know much about intestinal TB, but your other thread made it sound like it's more common in India and you've travelled to India quite a bit? Any other info about intestinal TB that you can share with us? I'm assuming that it's not at all common in "first world" countries like the US, the UK, or Australia?

Allie, I hope all went well and that your kidneys are okay! Still worried about you, hoping to hear an update soon.

Sunshine, worried about you too! I've seen your recent facebook updates and they don't sound good. Has Humira helped at all yet or is it just messing with your joints?

Star, also worried about you, I also saw your fb update today! Poor dears, it sounds like arthritis/joint pain is hitting everyone hard lately. :(

Big hugs to all! I hope everyone feels a lot better very soon. HUGS!!
 
I still haven't been able to make it over to the clinic. Was really ready to call today and get an appointment but they have a half day today, so I knew getting a same day appt was pretty much impossible. I'm calling first thing in the morning! The pain is just getting worse and worse. It can't be a muscle strain....I did some research on it, and kidney disease caused by lupus does NOT cause pain, so it can't be that either. So I kept reading other forum threads and the lupus website and kidney pain is usually a sign of a kidney infection. So I'm hoping to go in tomorrow and get some answers!

Another crappy part of all this is I have had to be on a ton more tramadol because this pain is so much worse than my normal pain, and tramadol causes insomnia, so I have gotten pretty much no sleep the past two nights. I just sit there in bed next to my husband working on the business, crocheting blankets for the business, or watching streaming british TV (I found a really cool iPhone app where I can stream all the free british tv channels for free, they are all in english and HD, its freakin awesome!)......Whenever I try and go to sleep, I just lay there feeling the pain in my kidney and intestines. Today I ended up sleeping all day from the lack of sleep, and I'm still tired, so I'm hoping tonight wont be so crappy...
 
Allie, with awful kidney-area pain like that, if it isn't kidney failure (which is sounds like it isn't, thank goodness) - then my hunch would be kidney stones. My hubby had kidney stones last year, as I'm sure you know, and he went through some terrible pain and also nausea/vomiting. They diagnosed hubby's stones on CT scan and then did an x-ray to confirm. From what the ER doc told us, depending on what the stone is made out of, it may or may not show up on x-ray and/or CT. So unfortunately you may have to have a few tests to get everything looked at. Hubby's stones were made out of calcium and they showed up on both CT and x-ray. Apparently if you don't get enough calcium, your body takes what little calcium it has and turns it into stones (don't ask why, I have no idea and it makes no sense to me!). My hubby was eating a lot of peanut butter at the time which can apparently block calcium absorption or something like that. (All this info was told to us in the ER at like 3 AM when hubby got diagnosed with kidney stones, so I was very tired at the time and may not be remembering things quite right!) So if you already have digestion and absorption issues, which I know you do, then maybe you're not getting enough calcium and that caused stones. Just a thought, and something to look into! I hope it's not stones, as I saw the terrible pain my hubby went through and I wouldn't wish that on anybody. I seriously think his kidney stone pain was worse than what I went through with IBD, and certainly he vomited more than I have with my illness. Often times after vomiting, he'd tell me he only threw up because the pain was so bad that it made him vomit. The poor guy. (Needless to say, he doesn't eat nearly as much peanut butter nowadays!)

Anyway, that was too long, but long story short, I hope it's an infection rather than stones. An infection would likely be a lot easier and less hassle to treat. Hubby couldn't pass his stones on his own, and after about 6 months of doing the "wait and see" thing, they did surgery. The surgery was that they stuck a small scope up his urethra to see the stones, then blasted them with a laser, then put in a stent which came out later. Hubby said the stent was actually worse than the stones. So yeah, kidney stones are no picnic and the procedure to remove them is awful too! So I REALLY hope it isn't stones!
 
I hope it isnt stones either! My husband has tossed around that idea as well. Here in germany they will admit you into the hospital for kidney stones, so I really hope that isnt it (can you tell I dont like the hospital? Lol). Prednisone can cause problems with calcium absorption if I remember correctly.... So it kind of makes since. I drink a glass of milk every morning with my meds, and I eat a ton of dairy, so hopefully it isnt stones. :( I am not naucious either, but I understand what ypu mean with the pain.... This pain is no where close to the pain on my abdomen. Whatever it is I am definitely going to have a discussion on how to get the pain down, because tramadol is way to mild to help it! And it just keeps getting worse. :(
 
Allie, apparently an easy way to get a general idea of your calcium absorption is to look at your fingernails. Are they soft, do they bend and/or break easily, chip a lot, etc? If so, you probably aren't getting (or absorbing) enough calcium. Case in point, I used to take about 6 Tums every time I hit the gym, to keep my reflux under control. Then I switched from prilosec to Nexium and now my reflux is significantly better, so I sometimes take no Tums or maybe 1 or 2, but rarely if ever 5 or 6 like I used to. And lately I've noticed that my fingernails bend and break a lot more easily. I know that Tums has a lot of calcium so I think that's the reason my nails have gone softer lately. So I'm going to increase my calcium intake and see if my nails go back to being harder and less breakable.

As far as pain meds and kidney stones, my hubby was given generic vicodin (hydrocodone or something like that?) at first, but they did nothing. They didn't touch his pain and they also made his brain fuzzy, he couldn't concentrate and acted drunk and silly, almost like a child. At one point, right after the stones were diagnosed, he was having a pain episode and took a vicodin but of course it did nothing. Then he did some googling about kidney stones but couldn't come up with the answers he was looking for, so he called the 1-800 nurse number that our health insurance provides. The nurse was clearly just reading him information from her computer, so hubby loudly and childishly said, "Ugh! I already saw all that stuff on the internet! Are you even really a nurse??" It was kind of funny in hindsight. :p After awhile he finally convinced his urologist that vicodin wasn't doing anything for him, and he got a prescription for generic percocets (I think those were called oxycodone?) and those worked really well. They didn't cloud his thinking and they did help his pain quite a bit. They are really strong though and I think both vicodin and percocet are highly addictive so I kind of monitored him and made sure he wasn't taking them when he didn't really need to.

One question while I'm thinking about kidney stones - has your urine been the normal color lately? Not dark or red or cloudy, anything like that? Hubby's urine was a bit red (which was apparently blood) when he had kidney stones, and when he had the stent in he may as well have been peeing pure blood, it was scary to see! But before the stent, off and on he'd have orange-ish urine (apparently if there's just a little blood it turns urine orange instead of red). If you had a kidney infection, I would think your urine might be cloudy or bloody or both. I've had zillions of UTIs, which can turn into kidney infections if they're not treated quickly, and my urine is usually cloudy (but not bloody) when I have a UTI. It sometimes smells bad/weird too. Have you experienced anything like that lately?
 
Hiya :) I'm all right, just a bad patch at the moment. Completed my cortisol/hormone test this morning, I haven't had much sleep what with needing to be at the Hospital early two mornings in a row, and think that caused the hip pain which was really bad (I tend to get Chronic Fatigue related joint aches/pains when I'm doing too much/not getting enough rest. They are usually mild and not as bad as today!). But I had a 4 1/2 hour nap and when I woke up it was gone.

The bad news is (and I was warned when booking the test), sometimes the tablet doesn't work as well as they'd like and i'd have to repeat the test- but not two consecutive appointments, would be a few days gap to give the tablets more time to work. So that's ok!
 
Well, I ended up getting an early AM appointment at the clinic today...and it did not go the way I had hoped. :(

They immediately thought it was a kidney infection, told me they were going to prescribe strong antibiotics, and told me to wait in the waiting room for my urine sample to confirm the infection. But when she got the test results back, no infection was found. No blood either, so it ruled out both a kidney infection and kidney stones. She also said she knew it wasn't a muscle pull since I was sitting when it started and I have been resting all week. She then said my pain is exactly where my kidney is, so it has to be my kidney that is causing the pain. When you add in my Lupus, the simple answer is that my Lupus has attacked my left kidney and it might be failing. :(

So she said that there isn't anything else the clinic can do for me...all the tests that need to be done cannot be done in our small military clinic, so I have to go to the Klinikum, which with German culture I will be admitted until they figure it out and fix it. They pretty much admit you for almost anything here in Germany. I told her I was wary of going to the hospital on a Friday afternoon, so she said that I can try and rest some more at home, and if it doesn't get better or gets worse tomorrow or Sunday to go and check myself in. If I last until Monday I can go back to the military clinic and try the urine test again to see if an infection shows up, but thats all that they can check for there.

Why did I take that sleep aid that said do not take with autoimmune diseases? WHY?!?!
 
Oh Allie, that's awful. :( I am so sorry to hear this. If I can give you a sliver of hope, when my hubby confessed to me that he was having pain and nausea/vomiting, I sent him to my GP right away. My GP did tests including a urine test and found absolutely nothing - no blood in his urine, no indication of stones. Then about a week later hubby was in awful pain and vomited for about 10 minutes straight, that's when I took him to the ER and he got diagnosed with stones via CT and x-ray. So, my point is, my experience is that the urine tests are not always reliable - hubby managed to get a normal urine result and he had multiple stones, I think 2 small ones and one larger one. Maybe he wasn't bleeding into his urine all the time, or something like that, but he definitely was at times and apparently wasn't when he peed into the cup for the doctor. So, hopefully it's something like that and the test just didn't catch it. Not that I would wish stones on anybody, but it would be easier to take care of than kidney damage/failure.

Please keep us posted on how you're doing and what you end up doing. I hope you don't have to go to the hospital, but of course if it gets worse or doesn't change then please do go in ASAP. It's worrisome to me that your pain sounds to be constant. My hubby's pain came and went. One minute he'd be fine and the next he'd be doubled over and puking, and the next day he'd be okay again. I'm not sure if all kidney stone patients are alike or if there are some with constant pain and some with intermittent pain. Anyway, I will keep you in my thoughts. Very worried about you! I hope everything ends up being okay! Big hugs!!

Sunny Days, some days I swear my stomach is part washing-machine because of all the gurgling and swishing. If I lie down flat on my back, sometimes the gurgling gets very loud and you can even see air bubbles (?) moving around through my guts. It's better now that I'm in remission, but back when I was ill all the time, it happened often.

Star, glad to hear the joints are doing better, that's very good to hear. What kind of a cortisol test did you have? Are they looking for something like Addison's or Cushing's? I hope it gives you a worthwhile result! You've been doing so much traveling for tessts lately, but at least you're actually getting tests rather than just getting more denials, so that seems to me to be a good thing! Good luck, are you getting these results at your rheumy appointment?

How's everyone else doing lately? I'm doing okay although I'm a little bit suspicious of what's going on in my body. I don't think I'm headed towards a flare, but I don't quite know what's going on. I had that "salad incident" just over a week ago, where I ate salad and it went very badly. I lost 1 lb because of that incident. Well, I just weighed myself at the gym today, and I've lost another lb. That's 2 lbs lost in 8 days, and it's unintentional weight loss. I know that the weight falls off of me when my IBD is active, but I can easily maintain my weight and actually have a hard time losing weight in remission. I haven't been actively trying to lose weight - I have been eating the same foods and the same amounts as always and exercising the same amount. So, it weirds me out a little bit! I know it's not much weight, but any weight lost unintentionally is cause for me to worry. I feel fine otherwise so I'm not super worried, but still. It's just a little troubling. Hopefully it's nothing.

I hope everybody has a good weekend. Tummies, behave yourselves! (And kidneys too!!)
 
WashingMachine - Nope, but I do get creaks and whines coming from my stomach.

Cat-a-Tonic - If it's possible, try add a bit more exercise to your regimen, focusing on strength training. The mechanism for recovery from exercise reduces inflammation, and strength training causes the most microscopic muscle tears.

It's not perfect, but every little bit helps. I know how you feel, when you think you can feel it coming back. Before the last month, every couple of days whenever I had a pain in the guts it was the old worry "Is this just 'regular' pain, or am I going to have to deal with all this again."

Hopefully you're luckier than me and it's the former, not the latter! :D
 
Hey Gculk, I actually do quite a lot of strength training. I hit the gym a minimum of 3x per week, and the bulk of my exercise is weights. I jog on the treadmill to warm up, then do every weight machine (there's 8 in my gym and I do 20 reps on each), then some stretches/yoga and then more treadmill (walking, but with incline and also walking sideways & backwards) to cool down. I do that every Mon, Wed, and Fri. On the weekends I walk with my dog, ride my bike, do yoga, etc. If anything, I need more cardio! I do lots of weights and a fair amount of stretching but not enough cardio.

And I'm actually in remission right now which is why any little "blip" with my weight or my stomach worries me. Even though I'm undiagnosed, my GI feels I probably have IBD and he has put me on several different meds (prednisone, then Entocort, and now Asacol) which have worked well and gave me my life back. Being in remission is the only reason I can exercise in the first place! I could barely fold the laundry some days when I was really ill. So yeah, I'm doing really well for the most part, but any little weird thing my body does gets me worried. I'm sure it's probably nothing. Years before I was ill I once sponteneously lost 6 lbs unintentionally, I have no idea why, but I felt fine the whole time back then and wasn't ill at all. So hopefully this is just another one of those weird things but isn't my illness coming back.
 
Ah, sounds good! You ever hear about plyometrics? They're good if you wanna mix strength and cardio. And if you wanna collapse in a useless heap as well, but that's another story entirely.

I get ya on the not being able to do anything. I could slouch around and walk up the stairs slowly, but not much else.

Also, don't you hate that, having to use "illness" or whatever nonspecific word oh god that nags me so much! "Oh hey, yeah I'd love to come out, but my stomach troubles are bothering me."

The whole sentiment is lost and you just feel like going into an explanation about how you're not malingering as soon as ya say it.
 
My Cortisol has been high twice out of about 6 readings, so even though the endo Dr explained why he thought that was, and I was 100% satisfied with the reasons given, I was given the test so they can be certain it is ok. It's testing of the pituitary gland, Cortisol level and checking my "lady" hormones. Basically I had a blood test at 9am, steroid tablets at midnight (to tell my body I have enough in my system and turn to off the production- if it hasn't then there is something wrong) and another 9am blood test.

I will ask my Rheumy for the result at the end of the month, I see endo Dr in June.

Yes lots of appointments lately, the scan came out of the blue, and no way was I going to delay that!! This week was my usual Hospital at least, although two mornings in a row was tough. If I have to repeat the test that's ok as it'll be over a longer period of time.
 
scared :/

Hi everyone, so I am 20 year-old girl who is being tested for Crohn's because I've been having abdominal pain. I had the same kind of pain when I was 17 and they found inflammation. I was okay for 3 1/2 years until now. This time around the pain lasted for over a month and I had to go to the ER twice because it was so bad. They gave me a CT scan and again found inflammation and prescribed antibiotics. The doctors say they're leaning towards Crohn's and I've been going crazy looking up all sorts of things on the internet (which I know I shouldn't do) and some of the symptoms describe what I have like: constipation, indigestion, bloating, and pain. I also read that a not so common symptom is sweating at night and recently I've woken up sweaty - that's what truly worried me. I know I shouldn't try to diagnose myself but I'm just really worried and if I have it I want to prevent the symptoms from getting worse. I have to get a colonoscopy in about a week so hopefully they are able to diagnose my problem. I just needed to vent because I've never been so stressed before in my life. If it's one thing people should be thankful for, it's their health.


Any advice is welcome, I'm in desperate need of it.

I just want everything to be okay.
 
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Hey there!

Well, we certainly know what it's like to need to vent sometimes. The worst thing about the whole charade so far is not having any answers. At least you are getting close to getting yours. I hope it'll be something curable!

Nathan
 
Cat-a-Tonic said:
Hi ABC, welcome to the club. I saw your "My story" thread as well and it looks like you were diagnosed with Crohn's but are now questioning that and are thinking maybe it's intestinal TB? I don't know much about intestinal TB, but your other thread made it sound like it's more common in India and you've travelled to India quite a bit? Any other info about intestinal TB that you can share with us? I'm assuming that it's not at all common in "first world" countries like the US, the UK, or Australia?

Big hugs to all! I hope everyone feels a lot better very soon. HUGS!!
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Hi Cat, you are right. Intestinal TB is not common in countries like US, UK, or Australia. However, any country that has a large immigrant population is prone to get the infection. Recent studies have shown that incidence of TB is increasing in all countries especially since the bacteria is getting more and more resistant to antibiotics. The problem is that the GI doctors, radiologists, and pathologists in the "first world" countries have little to no experience with TB. Any kind of inflammation most often leads to a diagnosis of IBD. Hence, the reason I posted on this board so that if you are undiagnosed for a long time and have not explored this area then this might be something worth trying.
 
Thanks for the info ABC! I'm sure many people here will able to use it now, and in the future when others come in looking for answers.

Sonic, welcome to our little club here, even though we all wish there wasn't a reason for you to be here! Compared to most here, the fact that they have found inflammation is a huge indicator that something is not right. Alot of us here will do test after test and it will show nothing, so please know that your doctors have some good proof to get you on the right track to a diagnosis! Antibiotics, however, are not going to treat or help the symptoms of Crohn's disease. Crohn's disease is an autoimmune disease...the inflammation is caused by your immune system, not bacteria. Another symptom that you are having is a little different than most is constipation. Most people with Crohn's will actually have the opposite, which is having diarrhea upwards of 10 or twenty times a day. There are some Crohn's patients that have constipation, and usually those patients have damage in the small intestine, not the large. I hope your colonoscopy next week gives you answers! They will be able to take biopsies throughout your large intestine during that test, and those biopsies can be tested specifically for crohns. Good luck!

Sunshine, I saw your pictures from the walk this morning! It looked like you and your friends and family had a great time! I'm sorry you were in a wheelchair. :( I actually brought up wheelchairs to my husband over the weekend, and apparently he has decided that we need to buy one for me in the next couple years for the same reasons you have one. We are hoping to go to Disneyland Paris before we move back to the states, and he has also decided that he will be pushing me around in a wheelchair during that vacation to ensure we can get through the day without me losing all my spoons. You aren't alone!

Well, I have some GREAT news! We decided over the weekend that we were going to check me into the German hospital this morning to figure out why my kidney was in so much pain. We went to our Army health clinic first, which is standard procedure, and they told me that I couldn't go to the hospital until I did their simple tests firsts to see if they can find the issue and I could avoid a hospital visit. My husband was so mad, because those same tests showed nothing on friday, and he was dead set on it being that my kidney was failing. Well, the tests showed something this time! I have a REALLY nasty kidney infection. It probably got that bad because it was left to fester for over a week, but it didn't even show up on Friday, so I have no clue really. My urinalysis showed four different types of bacteria attacking my kidney. My doctor was so happy she found something, and she was relieved that I was able to get treatment from her because she knows I absolutely hate the klinikum. I'm on the strongest antibiotic she could give me, and she wants to see me in ten days after the antibiotics are done to see if it cleared up. I am so happy with how this worked out! Kidney infections are serious, but it was the best case scenario with what was going on. My husband started crying when we got into the car though...he was upset that the problem doesn't help prove my MCTD/Lupus. What he doesn't understand is that it does...kidney infections are not common! And usually the kidney gets infected because a UTI is not dealt with...mine started in the kidneys, no UTI at all. So I'm hoping that it gives more evidence towards lupus so that doctors stop questioning my disease.

I still have a chance that I might have to get checked into the hospital, because some kidney infections, especially with patients with chronic illnesses, have to be treated with antibiotics through an IV. If I start to get chills or if my temp spikes I'm suppose to go to the hospital immediately. But, she says that the antibiotics should help within a couple days, and that my pain should improve significantly in that time, and it will take a couple weeks to feel back to normal completely.

YAY!
 
Allie, I saw your FB post this morning too - so, SO very happy and relieved for you that it's an infection and not stones or kidney failure! An infection still isn't great, but like you said, it's the best-case scenario. I hope the antibiotics take care of it quickly! I've had a zillion UTIs and I think one did go into my kidney at one point and I remember being pretty miserable at the time, but the antibiotics they gave me cleared it up quickly, so hopefully that's the case for you too. And you're right, it is very unusual for an infection to start in the kidney without being a UTI first, that's definitely not something that happens in "normal" people so I would also guess that your MCTD/Lupus probably played a part in facilitating the infection. If it were me, I'd get regular kidney function blood tests (creatinine, etc) to keep an eye on how things are doing in your kidneys. Anyway, I'm probably rambling again - so relieved to hear the news though and I hope you feel lots better very soon! :)

ABC, thank you for the info. I'm hoping you can provide more info? For example, does intestinal TB always present with inflammation? In my case, I get LRQ pain but my doctors have never been able to find any inflammation and I don't have a hard spot nor thickening anywhere in my intestines either. I'm assuming then that intestinal TB would be essentially ruled out for me? Also, I've tried several IBD treatments (prednisone, Entocort, and Asacol) and all have worked well for me - your "My Story" post made it sound as though IBD treatments won't work for intestinal TB, so I'm assuming that since IBD meds did work for me, that also essentially rules out intestinal TB for me? Does intestinal TB usually follow the same pattern or can it vary the way that IBD can?

Sonicfox, welcome to the forum and the club. As difficult as it might be, please try not to stress too much. Stress can make our symptoms even worse as you've probably come to realize. Have a read around the forums here, there is a LOT of info on this site and hopefully some of it will ease your worries. If you do have something like Crohn's, it can be treated and you can feel a lot better and get your life back. I wish you lots of luck with the scope - make sure to let them know that you want a lot of biopsies taken (sometimes if they don't see anything out of the ordinary, they won't take any or will only take a few - sometimes the illness can only be seen on a microscopic level and can be patchy, so it's definitely best to make sure they take lots of biopsies regardless of what they see visually!). Also, you might want to request that they stain the biopsies for mast cells, as not a lot of doctors do that. Good luck! And feel free to ask any questions, if we can't answer them here in the club, we can at least point you in the right direction. Hang in there and I hope your scope gets you some answers!

Star, I hope the cortisol test clears things up for you. I think we've already talked about this awhile ago, but have they ruled out Cushing's for you? I know that high cortisol and weight gain/inability to lose weight are two of the hallmarks of Cushing's and it sounds like you've experienced both, although of course weight gain with something like Crohn's isn't uncommon either. Anyway, I hope you can either confirm or rule things out at the very least with these test results. And, my goodness, having to take steroid tablets at midnight!! Steroids make me wired, I doubt I would sleep at all if I had to take steroids at bedtime! For the short time I was on pred, I took it first thing in the morning, like at 6 AM, and even so I would still be pretty jazzed by bedtime and would have a very hard time falling asleep and staying asleep. (Pred made me feel so good that I didn't really care though!). And more recently, when I was taking that steroid suppository for hemorrhoids, I did have to take that at night. Even though it was a mild steroid and not systemic, I still would have a terrible time falling & staying asleep (and unlike pred, this time I did care and was fairly miserable!). I hope you get a good result from that test and don't have to re-do it. Steroids at night time, yuck!!

Nathan, I'm not familiar with plyometrics, I will google it and learn more. Honestly, I really love weight lifting and have to pretty much force myself to do cardio, so adding more cardio in to my regimen is going to be tough regardless. I can run 1/2 mile without having to stop, but can't do any more than that just yet. So I feel like a cardio wimp, ha ha. I did just get a new bike and have been trying to ride that as much as I can as that's a little more fun than running. I wish I could run with my dog as that sounds fun, but she's kind of overweight and not in great cardio shape either so we both peter out pretty quickly! Ha ha. (My dog is a corgi and they're not known for being great runners anyway so even if she weighed less and were in better shape, I don't think she'd be able to run with me for very long.)

Anyway, this is way too long. How's everyone else doing? I'm good! I probably won't be around the forum much this week as I'm taking a few days off to go on a mini road trip with my mother. I'll check in when I can. Not sure if I'll have internet access where we're going or not. Anyway, hope everyone else is well!
 
Cat: It's basically just really high energy exercise, jumping, sprinting, stuff like that, interspersed with cardio to keep you warmed up in between. It's sort of like cardio, but without the tedium of sitting pedalling at one speed for an hour and feeling like you get nowhere.
 
As far as I know Cushings was ruled out. But they did this test to be 150% sure it isn't something more sinister causing the odd abnormal reading, even though as I have said Endo Dr explained what he feels the cause is and I happen to agree with him.

Having a 24 hour flare which isn't great- although instead of guts emptying it was bad abdo pain at the start, then the pain went and I felt flare-like. Had something to eat tonight so hopefully I am coming out of it quickly.

Allie, I also saw on FB it turned out to be a bad kidney infection- I know you won't take it out the wrong way when I say i'm glad about that!

:ghug:
 
Hi peeps!
apologies again for late update. went to me GP this morning and now ive got to go to the eye casualty because ive had pain and flashing in me left eye since friday :-(
It only flashes when i move my eye quickly from left to right. so they want to rule out retinal detatchment! :(
Only problem is.. im looking after my 1yr old and my husband has meetings until 4pm. so. cant go. until then...
 
He cant really cancel because he's just had a promotion and is doing a lot of handover of info etc..
besides,because ive been like this since friday, a few more hours cant hurt? (I always get ill on a weekend/bank holiday haha!)
The pain i'd describe as an intense ache in my eye socket lol!
 
bozzylozzy said:
I know.. i'd rather go now. but its just not possible.. :( im also fed up of getting new problems all the time. its never ending!

Anyway, hows things at ur end?
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The usual up and down crazy rollercoaster ride when waiting for test results lol.

:ybatty:

Have heard nothing since the scan 2 weeks ago so looking more and more likely I will have to wait until Rheumy app on the 28th May. When a scan found something before I wasn't called in and waited months to be told at Rheumy app so here's hoping...
 
Well fingers crossed u get some news soon. i hate waiting!
Im back from the eye casualty. and thankfully no sign of tears or retinal detachment. the dr said its most likely due to me being short sighted???she has also referred me to a "flashes and floaters" clinic because im too young to be getting flashes.. hmmm..
 
I figured I would introduce myself :) I was DX IBD Indeterminate Type in 2000 @ 12 yrs old. The closest Ive got to a Crohns vs UC DX has been in a pathology report of my appendix which showed Crohns. I'm the type who does not opt for maintence meds but rather meds just during a flare. I'm wondering of there's anyone else who has gone so long without a Crohns or uc diagnosis?
 
Hi Txarmywife, welcome to the club. How has that been going for you, doing no maintenance meds and only meds during a flare? Can I ask why you choose no maintenance meds - cost, side effects, something else? I've been told that I probably have IBD although they don't know which type I have either, although I do opt for maintenance meds (currently on Asacol, was on Entocort to get into remission). So far it's been over a year now that I've been in remission and I feel like I'm doing well on maintenance meds, I'd be scared to come off them! How often do your flares come on and what treatment do you use to stop the flares? Are you usually in remission?

And as far as going a long time without diagnosis, I can tell you that my aunt went about 30 years before finally getting diagnosed with Crohn's! She had symptoms as long as she can remember and at some point they told her too that she has indeterminate IBD. She only got her official Crohn's diagnosis quite recently. So yeah, sometimes it can take a very long time for them to pinpoint the diagnosis. At least with an IBD diagnosis, even without knowing which specific type, you can at least get meds and be taken seriously. A lot of folks in this club have no diagnosis (or were given some lame/lazy diagnosis like IBS when it obviously is more than that) and get no meds and no doctor attention when they flare. I was in that boat for awhile myself and it's not fun! So I'm glad you at least have a partial diagnosis and can get treatment & relief from your flares.

Bozzy, do they have any idea what the "flashes" could be? I'm guessing migraines is one of the possibilities? I get migraines with aura, which can be anything visual. Sometimes I get flashes or waves in my peripheral vision, sometimes I get a blind spot that grows, sometimes it's like someone turned the lights on or off - but it's only ever in my right eye, never in both and never in the left. It's freaky! It doesn't last long for me, but migraines are different for everyone so it could be in both eyes for you and it could be lasting longer. Just a thought. I've probably mentioned migraines before and I don't know much about eye stuff or neurological stuff so it might be something else. At any rate, I hope you can get it figured out! It doesn't sound fun at all! Hang in there, and keep us posted on how the "flashes and floaters" clinic goes.

Star, I hope the 24 hour flare is over? Those are never fun although more bearable than a full-on flare at least. Hope you're feeling better! And I just noticed, your appointment is May 28th - that's a holiday here in the US. I'm assuming then that you guys in the UK don't celebrate Memorial Day (or at least not on the same day that we do here)? It's a big holiday here where most everyone gets the day off of work so doctors offices would be closed here that day. In fact, since hubby works weekends and I work Mon-Fri, I believe the 28th will be the first day since Easter that we'll both have off of work and can actually do something together! Ha ha. Anyway, I'm totally rambling off-topic now. Good luck on the 28th and of course keep us posted on those results! Fingers crossed for you!

I don't know if ShanBanana checks the club anymore, but if you do - I thought of you today! I have a co-worker who told me he's getting a brain MRI tomorrow as he's been having worrying symptoms including vertigo and migraines. I thought of you and I gave him some info about Meniere's. I wouldn't have known anything about Meniere's and vertigo if it weren't for you, Shan! So thank you for posting all that info awhile back, I remembered it and it may help someone else get a diagnosis! :)

How's everyone else doing? I saw on FB that Sunshine is still not doing well. :( Poor thing, even with a diagnosis and hardcore treatment it seems like she's just getting worse and worse. Sunshine, thinking of you and sending you a big hug! Hope you feel lots better soon! How's everybody else? Allie, how are the kidneys feeling today? Better I hope? May, how are you? Anyone else I missed? As for me, I'm doing fine. Going on my little road trip in a couple days and can't wait! I need a vacation, ha ha. Just trying to figure out how to pack all my pills - If I'm counting right, including supplements, I take a total of 21 pills per day (and one teaspoon of psyllium daily too). Not quite sure yet how to organize all those! Especially since I take them at like 6 different times of day - I take Nexium first thing in the morning, Asacol with my breakfast drink, psyllium with my snack, Asacol with lunch, Asacol with dinner, and Amitriptyline & Zantac at bedtime. (I take a few supplements with each meal as well to spread them out so that I'm not taking a giant amount all at once). So yeah! I have an organizational system at home and at work for taking everything but I need to figure out a system for traveling now. Plus I think I should pack my "just in case" meds like Zofran and Imitrex, which means I'm going to be bringing a ton of pills for a 4 day trip! It's going to be interesting! :p Wish me luck!
 
Cat - ive suffered with migraines and auras before - normally get a zig zag crescent moon shape that gradually gets bigger .. sometimes end up with tunnel vision if its bilateral.
this is different. when i move my eye quickly left/right.. i get. what i can only describe as a "black bulb flash"
Oh well.. at least it shouldnt be anything sinister! Haha
 
Hey Cat! Honestly, I feel like I have been run over by a truck. I had a ovarian cyst burst in January of 2010, which caused an infection as well, and this hurts pretty much as it did then. Except for this time I was not given proper pain management for it (I was on hydrocodone then). However, my kidney isn't hurting as bad today, which is a good sign, but my entire body hurts too! Infections are really nasty and really not fun!

I totally understand what you mean by the pills thing. I am on so many pills right now, its crazy! If you don't have a weekly pill box I highly suggest getting one. There is one at walgreens that has different compartments for what time of day you need to take the med, and those individual compartments can be removed from the whole unit so that you can take it with you in your purse. I don't have one, but I wish I had bought one!

Txarmywife, welcome to the club! I am an army wife too! We are stationed in Germany, and have been here since the end of 2010. You will find many others here that have been ill for a very long time without a diagnosis. I have been sick for 8 years now, and my diagnosis isn't solid as well. It can take a long time for doctors to piece it together.
 
Flipping flying fiddling my guts are killing me and I'm passing blood again. At least I've got an appt tommorrow to get my colonoscopy referal. Can't wait for answers.
 
Cat-a-Tonic said:
Hi Txarmywife, welcome to the club. How has that been going for you, doing no maintenance meds and only meds during a flare? Can I ask why you choose no maintenance meds - cost, side effects, something else? I've been told that I probably have IBD although they don't know which type I have either, although I do opt for maintenance meds (currently on Asacol, was on Entocort to get into remission). So far it's been over a year now that I've been in remission and I feel like I'm doing well on maintenance meds, I'd be scared to come off them! How often do your flares come on and what treatment do you use to stop the flares? Are you usually in remission?
Click to expand...

Well I've never been symptom free for as long as I can remember. As a child I had stomach problems which I "cured" with Pepto. My sisters would joke saying I had a bottle a day habit. Eventually this led to my diagnosis. My childhood was probably the worse for my disease. I had joint pain, vomited everything I ate because my intestines were so inflamed the food just sat in my stomach, I required an NG tube, drank ensure for about a year, had several hospital stays which resulted in me being homeschooled. As I got older I had a few other health issues which put my IBD on the back burner. I never was symptom free however, I just learned to live with the symptoms as I didn't know anything different. For me in my better days, I have diarrhea (never had formed stools for as long as I can remember) and occasional vomiting. Then there have been times when I have mini flares which consists of the urgency, increased number of diarrhea trips/day, and pain after eating. Sometimes I manage these symptoms on my own...other times I'd go to the doctor. Full blown flares for me are when I am going 15-30+ times a day, dropping weight very quickly (I've always been thin), severe pain after eating, vomiting w/ occasional blood, etc. When I get in these severe flares I go back to a low-residue diet, Prednisone tapering, Reglan, etc. Then when I'm feeling better I stop taking all medications. I don't really have a reason for this other than I'm trying to be normal I guess and I've moved around a lot so I haven't kept a steady GI and don't feel like starting over completely every time I get sick. It's only when the symptoms become unbearable (as they are now) that I do something about them. I'm not sure I've ever been in remission but certainly have had years were my symptoms were tolerable with diet alone. As far as the full blown flare occurences...I'd say I have had them pretty infrequently. They usually come in spurts...2-3 in a year then maybe a year or two with only the mini-flares.
 
Bozzy, sorry to hear you get migraines too! Those auras are freaky, aren't they? Sometimes I think they're the worst part. I guess in a way it's good that this flashing thing isn't part of migraines, and I hope it's nothing bad. Good luck getting it figured out!

Allie, :( that sounds just awful! I hope the pain subsides soon and that your health gives you a break already! You deserve some relief for once! Poor thing, sending you a big hug and hoping the infection goes away very soon.

Nathan, sorry to hear you're doing so poorly as well! :( At your appointment tomorrow, definitely let them know what's going on and that you're feeling so bad, they might be able to rush the colonoscopy appointment for you. A couple years ago, when I was scheduling my first colonoscopy, they said there was a 4 month wait. I was upset but figured I just had to wait. About a month later, I called them back in tears and said that I was just doing so poorly and I didn't know how I was going to make it another 3 months. The nurse I spoke with took pity on me and got me in the following week. If they know you're doing very poorly, they can sometimes squeeze you in much sooner. If you get an appointment far into the future for a scope, odds are you'll be feeling better by that time. It's best to have a scope when you're feeling your worst - you're obviously bleeding and most likely inflamed when you're feeling so poorly, which means you've got better odds of finding something and getting diagnosed. Good luck!!
 
Thanks for the advice. I was feeling miserable anyways when I was doing nothing, but me and my friend were hanging today at lunch, we always have a good laugh, and when I'm hurting any gut movement like that kills afterwards.

Doesn't help that I'm a jovial fellow and can get laughing at next to nothing! :smile:

I'll def try and get in early as I can. But I'm hoping it'll be after I've got gluten elimination out of the way first, so I can rule that out as a possibility.

Thanks
Nathan
 
Txarmywife, you say as a child you "cured" your symptoms with Pepto, which is interesting to me for a couple reasons. Pepto is very similar in formulation to Mesalamine, which is what is in various maintenance meds such as Asacol, Pentasa, and Lialda. Does Pepto still do anything for you? If so, you might want to reconsider maintenance meds, it sounds like the Mesalamine type meds could potentially benefit you. I'm on Asacol and I have very few if any symptoms nowadays. If I eat the wrong thing I'll get a little pain and maybe d. But usually I'm having solid stools, no pain, no nausea, good energy, etc.

The other thing that intersts me about the Pepto thing is, have they ever looked for Microscopic colitis on any of your colonoscopy biopsies? Microscopic colitis is in the IBD family. It can be difficult to diagnose because the inflammation is obviously only on a microscopic level (visually, colonoscopy looks normal) and it also has a "skip pattern" meaning the inflammation is patchy. So they have to biopsy the right spots or they'll miss it completely. And, Microscopic Colitis sometimes responds very well to Pepto. So, seeing as how your IBD hasn't been specified with a type yet, it makes me wonder if you've got MC and that's why they haven't found it and that's why Pepto worked for you? Just a thought!
 
Nathan, are you planning on doing a gluten-free diet to see if that improves your symptoms? If you think you might have celiac, the upper endoscopy is the "gold standard" test, but you have to have gluten in your system or it'll come back negative regardless (without gluten in your system, your body won't have the reaction and won't produce the celiac antibodies, and everything will look normal, even on biopsy - even if you really do have celiac!). So you might want to wait awhile to try going gluten-free, at least until you have had an upper & lower scope.

And I know what you mean about laughing! My hubby and I sometimes go to this improv comedy club, and if I laugh too much (which I often do, it's usually a hilarious show) then I can definitely feel that my guts aren't too happy. They say laughter is the best medicine? Not necessarily! ;)
 
Yeah, doc recommended a gluten free diet to try and see if that's the cause of the trouble. If that worked, even if we wanted confirmation of it by scope, it'd just take eating a bunch of bagels every morning as pre-prep!

I'm just looking for any non-crohn's answer! :p One club I don't necessarily want to join! :ylol2:

I haven't started the diet except for today, so depending on when my appt is, I'll ask the doc what the plan is.
 

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