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Glad to hear it's going well so far, Chell! It's about 8:30 in the morning here, and my appointment is at 9:30, so I'll be leaving soon to go to the hospital and start my test. I am so not looking forward to the NG tube and I'm starting to get a nervous stomach just thinking about it! Plus, they told me no food or water for 4 hours before the test, so I haven't had any water all morning and I feel parched and a little headachey, getting slightly dehydrated I think. Yuck, I just want to get this over with! They said I can drink and eat again after I get the NG tube put in so at least there's that to look forward to. :p Anyway, I hope all continues to go well for you, Chell! I'll keep everyone posted on how things go for me.
 
I'm back from the hospital with NG tube in. But it sure is uncomfortable! I find myself sitting or standing very stiffly, it's uncomfortable to move or turn my head or neck. Swallowing sucks and talking isn't the easiest either. How am I going to do this all day? How am I going to eat, let alone exercise??? Yep, this sucks!

And getting the tube in was really not fun either. I broke my nose when I was a kid, and it was never set properly, so as a result my nose is crooked and one nostril is larger than the other. My right nostril is the one I usually breathe out of, it's the bigger one, so I figured it would be the best one to try putting the tube into. Nope! The nurse tried and tried but the tube kept getting stopped by something in the area of my sinuses. And every time the tube hit my sinus area, it caused me to tear up. So after a few tries, tears were just pouring down my face! Finally she tried on the left, and fortunately that worked right away and didn't cause any further sinus woes. But sheesh, what an ordeal! My sinuses are angry still and my nose keeps dripping, and it's not fun trying to blow your nose with an NG tube in either. Ick all around, I do not like this!

So I'm going to go attempt to eat one of my trigger foods now. Wish me luck because I am afraid it's not going to go well!
 
Sounds like so much fun cat!....NOT!! lol

I see the private gastro tonight. wish me luck! My NHS gastro secretary was lovely and has sent all my biopsy results to him. so i can actually find out my results! Its been 6wks since my colonoscopy
good luck to everyone having tests xx
 
Good luck Bozzy! Wow, 6 weeks and they didn't give you the biopsy results yet? I can see why you'd go to a different doctor, that's crazy! It usually takes about a week here in the US for biopsy results.

So I really hate this tube. Eating is super hard and swallowing sucks! And oddly enough, my throat is uncomfortable but the worst part is my sinuses - they are angry!! My nose started dripping more due to the change in weather (it got cooler here over the past few days) but that's nothing compared to this. My nose is dripping constantly, it really does not like the tube being in there! I've gone through like 1/2 box of tissues already today. And it's really hard to blow your nose when there's a tube sticking out of it. I will be so glad when this is over.
 
Sorry about your NG tube Cat.. It all sounds awful. Sending you (((hugs))). I am not having a good day can't keep anything down. Throwing up a bit of blood and really tired and weak today. My bum really hurts and every time I have D it feels likes razor blades and I already went 6 times this morning ouch... I have a low grade fever 99.9 and all I want to do is pull my hair out. This is sooooo frustrating.
 
so frustrated. just wrote a long message.. and now its gone! ffs!

@cat - how long do you have to have the tube in for?

@motheroftwins - i hope you feel better soon, low grade fevers grate on me - its like you're unwell, but not noticeably to other people

anyway - im so happy i cried after my GI appt!
i definitely have IBS, which i already knew
he took the time to explain to me everything thats happened to me

the bleeding i had in june was an arteriovenous malformation.. apparently it is something i would have had from birth, that grows as you get older.
normally they are found in the brain/spine - which thankfully mine was in my butt and not my brain lol, i dont want a 2nd type of malformation up there!

the inflammation was non-specific but only a really small area of inflammation, it was around the site where my appendix was removed (so likely just to be inflamed from the surgery)

my joint pain is due to me being hypermobile - blood tests should confirm/deny connective tissue disease ehlers danlos syndrome
my fatigue is either due to my chiari malformation or my hypermobility .. or even a mix of both

i read this article last night.. its a very long read.. but it explained a lot for me.
SO IF YOU HAVE BENDY JOINTS/HYPERMOBILE.. then please read it

http://www.cfids.org/pdf/joint-hypermobility-guide.pdf

i just feel im one step closer to feeling better..
 
Cat, that sounds horrible.

Bozzy, glad you got good news. Hope they can treat you effectively.

Mother, I hope the scope gets you some answers, which normally means treatment. Hang in there!!
 
Bozzy, I hope this is the first step on the road to recovery for you :)

Cat, today is not a day for exercise, you need to put on your pj's, curl up on the couch and watch dvds, while feeling sorry for yourself. You are allowed and more than entitled!

I have been keeping up with the thread but not posting because I had a really bad cold. Over the worst of it now but of course it's a painful uphill battle to get my stomach back to normal because the germ passed through there a few days ago.

Got my clinic report letter from London, they very helpfully listed all my standard blood test results... without any indication of normal ranges. So while I think I am aneamic i'm not sure!

Wrote down all the useless stuff in the report about it being due to my weight etc... and apparently she doesn't think it's auto-immune! So because my inflammation markers are not high enough for the sole illness she deals with, that must mean the hundreds of other auto-immune diseases have to be ruled out too!

Will get the first of the two-weekly bloods this week and go back in November. Sooner they tell me genetic tests are normal and discharge me the better. I can only hope new Rheumy sees sense when I explain how rubbish they were in London and continues to try and help me.
 
Thanks Star. I did try exercising, managed to do about 10 minutes worth before I gave up. I think I have refluxed enough for something to show up on this test so hopefully the results show something. I ate as much trigger food as I could stomach and feel pretty yucky. Whenever I move my head or swallow or yawn or anything like that, I can feel the NG tube shift and it's not very pleasant. I am so ready for this thing to be out! I just hope I'm able to sleep tonight with it in.

And good luck with the new rheumy - when do you see him/her? I hope too that they have half a brain and can put some puzzle pieces together for you rather than just saying "I don't know" or blaming everything on IBS/weight/whatever.

Bozzy, I just have to have the tube in for a full day. So I get it taken out tomorrow morning at 8 AM. Very glad to hear you got some answers about things! So where do you go from here with regards to your symptoms and illnesses? And thanks for the link, I'll read through it soon. I have bendy/hypermobile joints but only the knees and elbows.

Motheroftwins, feel better soon! You have a colonoscopy soon, right? If you're feeling this poorly now, the upside is that hopefully you'll get an answer from the scope. Being in an active flare means inflammation will more likely and more easily be seen on the scope. Good luck with it and I hope it gets you some definitive answers!

So yeah, I still feel blah. I haven't had dinner but I have no interest in eating as swallowing is really painful with this tube in. Swallowing saliva/water is not too bad, but swallowing food is awful. I just want to relax in a hot bath, but I'm not allowed to bathe or shower with the tube in - they wrote that in bold on my instruction sheet. So I'm kind of grumpy and just feeling icky. I hope this is all worth it and I get some results!
 
I had an appointment for new Rheumy November, but weeks before I went back to London. So as it would have been a waste of time I cancelled it and asked for December, but couldn't get one until January. Which isn't great as I wanted the next steps decided before Christmas. No I get to spend it worrying I won't be taken seriously any more :(

I told Mum briefly it was disappointing and all they had were "cop-out" answers, I haven't let on how dismissive they were or how upset I am over it. She is off to Spain next week and I want her to enjoy a relaxing holiday! But honestly the strain of not letting it show is getting to me a bit plus I am going through a not coping with the whole thing very well phase.
 
Hey all, feeling pretty frustrated right now. Went to see my GI this morning with high hopes of some Crohn's meds but no :( he wants to go ahead with the pill cam.... i had the patency capsule recently which got stuck and as i was getting married (a few weeks later) it was a no-go, they said i would need surgery to have it removed and i wouldnt be recovered in time for our big day! Now my wedding day is 'out the way' he wants to go down this route, the thought of surgery worries me somewhat but the thought of them having a good look around makes me want to go ahead. I hope everyone is getting on ok i tend to come on and read i dont really chat to anyone so i hope no one minds me joining in and having a little moan. :)
 
Jenni, goodness that is a worry, but I see your point about how helpful it will be. Some NHS trusts ration the use so you're lucky to get one- I can't as I don't meet the strict clincial criteria.

Do you feel like going into your story a little bit in terms of symptoms and what's happened testing wise so far?

I have decided folks it's stupid I can't see Rheumy in December but had to settle for January. No way have they really not got any appointments for the whole month. Letter of complaint going in the post tomorrow!
 
I do feel lucky to get one as i have read on here a few who have not met the criteria for it (stupid in my opinion) i think everyone who has gi issues should be able to have one....with a patency first to check its ok! I've had right sided pain issues on and off for several years which landed me in a+e several times,i was told it was my appendix given pain relief and strong antibiotics each time rather than taking them out!?!? Then 2 years ago i started with severe upper abdo pain,D,nausea and vomiting,full and partial blockages, the list goes on and on and on (as many of u will understand) but these are the main culprits for making my life difficult. pred is the only thing that helps make me feel better. I have had many tests: sbft,mri small bowel study,ct with/without barium, scans, balloon enteroscopy (could not get to all of small intestine due to significant looping), colonoscopy,bloods always come back high white cells, faecal protectin... again the list goes on lol. where abouts are you in the uk star? I dont want to bombard you so ive tried to keep it short. Just a thought, would you be able to go private for the pill cam or would it be the same criteria as for the nhs?
 
I'm in Suffolk and would be looking at 2k to get it done privately, well beyond my means and that of my family! Don't even know if it would get me anywhere, I appear to be something of a medical mystery. I've had the most expensive test the NHS offers (a PET/CT scan) and that didn't get me anywhere. I don't respond to steroids, as you say the list goes on!

Would be nice to have it though, even if it was normal I wouldn't be thinking "what if..."

Sorry to hear things have been rough for you, and I hope this gets you a diagnosis or points somewhere helpful :)
 
Well my fighting spirit seems to be back! Glad because I was so worried it had deserted me.
As well as a complaint about the Rheumatology appointment delay, i've emailed the Dr I saw in London and asked for someone to look over my blood test results and let me know if everything is normal, anything is low/high.

I'm sure my iron concentration is quite low which might need tablets or something!

It really wasn't helpful for them just to write them all out with nothing to say if they were all normal or not!
 
Cat-a-Tonic said:
Thanks Star. I did try exercising, managed to do about 10 minutes worth before I gave up. I think I have refluxed enough for something to show up on this test so hopefully the results show something. I ate as much trigger food as I could stomach and feel pretty yucky. Whenever I move my head or swallow or yawn or anything like that, I can feel the NG tube shift and it's not very pleasant. I am so ready for this thing to be out! I just hope I'm able to sleep tonight with it in.

And good luck with the new rheumy - when do you see him/her? I hope too that they have half a brain and can put some puzzle pieces together for you rather than just saying "I don't know" or blaming everything on IBS/weight/whatever.

Bozzy, I just have to have the tube in for a full day. So I get it taken out tomorrow morning at 8 AM. Very glad to hear you got some answers about things! So where do you go from here with regards to your symptoms and illnesses? And thanks for the link, I'll read through it soon. I have bendy/hypermobile joints but only the knees and elbows.

Motheroftwins, feel better soon! You have a colonoscopy soon, right? If you're feeling this poorly now, the upside is that hopefully you'll get an answer from the scope. Being in an active flare means inflammation will more likely and more easily be seen on the scope. Good luck with it and I hope it gets you some definitive answers!

So yeah, I still feel blah. I haven't had dinner but I have no interest in eating as swallowing is really painful with this tube in. Swallowing saliva/water is not too bad, but swallowing food is awful. I just want to relax in a hot bath, but I'm not allowed to bathe or shower with the tube in - they wrote that in bold on my instruction sheet. So I'm kind of grumpy and just feeling icky. I hope this is all worth it and I get some results!
Click to expand...

Hi Cat, yes I have the colonoscopy on Sept. 13 and I start drinking the yucky stuff tomorrow at 12... Hopefully, I am going to get some answers which will bring me some relief. Treatment would be nice so I can have hope for the future... Sometimes I feel like saying "I quit" lol.. or icky stuff go away. Thank you all for your support. Suzie:ysmile:
 
Hi all. Hope all tests and appointments went well, only had a chance to skim read the thread today.
So I had my pill cam. I felt it go around, it actually hurt as it did. The nurse person said that it was ' interesting'. I'm willing to bet it either went around a bend, or passed through inflamation-y areas.

Those who have had pillcam, did any of you have insane pain the next day? I am suffering so bad, I actually cried at work today. The jerks didn't send me home though.
I don't think I'm obstructed, as I can eat and drink, I do feel sick, but not have not actually vomited at all. Oddly enough, gone from full flare D to only 1 time since camera.
I swear I can feel it still in my body somewhere. It's the oddest feeling.
Any advice on what I should do?
 
Chell, I agree with Star. I had the pill cam done about 2 years ago and I didn't feel it going through nor did I have any pain from it. Contact a doctor or go to A&E. Even though you haven't vomited (yet) doesn't necessarily mean you don't have an obstruction. Suffering like you describe isn't normal and could indicate that the pill is stuck somewhere - at the very least, get an x-ray to see where the pill is. If it's an obstruction, it could become a serious emergency quickly, so don't wait - go get seen ASAP! Worried about you, please keep us updated on what happens.
 
Hi Chell - I agree with Star and Cat. My son had the pillcam twice and did not feel it or have any increased pain at all. The fact that your D stopped is concerning. Good luck!!
 
motheroftwins: Danny had a lot more pain during prep for his last scope. I hope you are doing OK!!
ps - I am expecting you to be leaving our club tomorrow. Sorry about that but I am hoping you get treatment!
 
I've waited it out as long as I can. I just got sent home from work and am en route to drs now. My dr is trying to get the hospital to process my pill cam results as an emergency. I'm just looking forward to some pain releif!
 
Chell, I'll echo what Star said - I'm very glad you're going in to get checked out by the doctor. Good luck and please keep us posted as to what happens!

Motheroftwins, how'd the scope go? I hope the prep wasn't too terrible but honestly it's never very fun (even people with healthy bowels complain about c-scope prep and I think it's much worse for those of us with unhealthy bowels). I hope all went well - update us when you are able to!

Star, going back a few posts - if you do get put on iron supplements, see if they can give you the slow-release ones instead of the regular ones. Iron always does a number on my stomach but the slow-release ones are a little bit easier on the tummy. Personally I gave up on iron supps myself but I try to cook with a cast iron skillet whenever possible as that supposedly helps add iron into the diet. At any rate, cooking in a cast iron skillet doesn't upset me the way that iron tablets do. Just a thought for you. I think there are liquid iron supplements out there too although I haven't tried them myself, those might also be easier on the tummy.

So I'm doing pretty well now that the stupid NG tube came out. :) I had a really hard time eating anything or sleeping when it was in so I had quite a miserable 24 hours. As soon as it came out, I instantly felt a lot better and I felt HUNGRY, ha ha. Guess I didn't eat very much with the tube in - it was really, really difficult to swallow anything with the tube in, and I had no appetite. It was like I instantly went back to normal once it was out! Fortunately I had some candy in my purse and I devoured it as soon as the tube was out. Been doing well ever since, although super busy at work! I was off for 10 days and I had a ton of stuff to catch up on. So I'm a bit stressed but otherwise doing well.

How's everybody else doing? Anyone else getting this fall-like weather? It's only about 60 degrees here today and gray & rainy (a vast difference to the extremely hot, dry & sunny summer we've had). It's perfect weather for curling up on the couch with some hot chocolate and a good movie. :)
 
Cat and Star, thank you for your thoughts! The pill camera is apparently not stuck, nor am I suffering from any type of blockage. My doctor was very thorough and did a full check, and that put that worry out of my mind. He did say if i did have even more increased pain to go to A and E, but I don't think I had pain to the level of an obstruction anyway.

What he did say, rather worryingly, is that I've more than likely just got worse. Which really sucks, but at the same time, it's not a stuck pillcam, so I can deal with that.

I've been prescribed a paracetamol and codeine combination, which seems to be doing the trick, and is numbing the pain quite a bit. I even managed to eat some eggs for dinner today.

I feel so stupid though, I just couldn;t handle it and burst into tears at work. Second time I meet my new manager, and I'm crying like a little girl. He was so nice though, so I felt better about it. I'm just worried I'm going to lose my job because I've had too many sick days. I can't claim a disability dismissal thing because I don;t have a diagnosis yet. Why do all these health problems bring so much more than just pain ?
 
Aw Chell, big hugs to you. I have cried at work too (honestly too many times to count - I got good at it and could anticipate when my emotions were welling up, so I'd run to the bathroom and cry in there) and I have also worried about job stability due to my illness. It's so stressful to have to worry about that stuff on top of being sick. :( I'm not quite sure how things work in the UK - do you have anything like Family Medical Leave (FMLA) there? That's what we have in the US, it is basically a program where you & your doctor fill out some paperwork saying that you have an illness (even if it's undiagnosed!) that causes you to take more time off sick than the average person, and once the paperwork is approved your employer can't penalize or fire you for taking time off sick. If you have a human resources person at your job, talk to them and see what your options are. I've had FMLA in effect for me pretty much the entire time I've been ill and it's been a lifesaver (or at least a job saver!). I have to periodically re-submit the paperwork to keep it in effect, but it's really easy and I've never been rejected and I've been undiagnosed the whole time. With FMLA I don't worry as much if I need to take time off due to being ill, and that in turn helps me feel better faster. So look into that, hopefully there's some sort of similar program in place in the UK.
 
Hello, just got back from my procedure.. I am talking in a very fogging mind at the moment... Please excuse if my typing isn't clear. They took out a some polyps and did some biopsies. My anal and rectal area is inflamed and swollen. They where able to rule out IBS at the moment, it looks like I have UC but nothing is confirmed until after the biopsies come back. I go back to the doctors in about a week... So, have any of you gone through this before? I am a little anxious and I have so many questions but I don't know what to ask. Should I be scared or worried?? Hugs Suzie
 
Suzie, right now you just need to rest and let your head un-fog. Take a nice nap and try to relax. You won't know anything for sure until you get the biopsy results back. If it does end up being UC, in my opinion that one is a little bit easier to deal with than Crohn's. It's only in the colon, whereas Crohn's can appear anywhere in the digestive tract (from mouth to anus). It's still not fun of course, but it's definitely treatable and treatment should make you feel a lot better.

If it makes you feel any less worried, I have a co-worker who has UC and he's had it since he was a kid (he's in his 50s now). He's been in remission for years and only takes Lialda (a mild maintenance med) and he eats whatever he wants and has no symptoms. He travels a lot and just generally enjoys life. So it's possible to have UC and have a happy and full life and feel well. Yes, every case is different, but it's still a treatable illness and hopefully you'll get a 100% diagnosis from the biopsies and can start some treatment and get some much-needed relief very soon!
 
Chell, i'm glad you had a full check, and the GP was through, but an xray is the only way to be sure it's not a stuck pill cam.

It could of course be bad timing that you got worse after the test, but without an x-ray you can't be 100% sure it's not a stuck camera. Better safe than sorry. It would be very easy for A&E to take an x-ray.
 
@chell, im sorry to here your symptoms have gotten worse :( and just like you, ive cried many a time at work too.. i hate it

@motheroftwins - i agree with what cat said about UC, and it looks like you are so close to getting a firm diagnosis. i wish you all the best of luck to stabilise your symptoms/condition and can start to enjoy life again :)

I saw my rheumatologist today and thankfully I dont have EDS - connective tissue disease.
all my blood tests were normal (checking arthritis, vitamin D, thyroid etc)

however my CRP (inflammation) was slightly high and my calcium levels are low.
he looked back at my GP's history of blood tests which have consistently shown i have slightly low calcium and he's surprised my GP has never told me.

he is sending me for a bone scan and done further blood tests for parathyroid and my iron levels
so could be parathyroid issues, and also questions SAPHO syndrome!? because i have skin issues too.

its all very strange lol but my knees are killing me.. thankfully my bowels are fine at the moment

hope you are all well xx
 
Hi undiagnosed club, Ended up going to the ER Friday due to severe pain.... They ended up doing a CT and found active Colitis... Spoke to the ER nurse today for more detail on CT scan and Biopsie report. On CT they found several scattered Hemangoma on liver a cyst on Right Overy, active Colitis in colon and leasions. Biopsie Hyalinized Colitis and Collagenous colitis and my tissue wall is breaking down in the colon. All my blood work came back normal even my White Blood count and I was surprised because that is usually elevated. Anyway can someone please explain what all of this means... I have been diagnosed with Colitis with IBS and right now I am a little confussed.

* Oh, negative dysplasia
Thanks Suzie
 
I do not know about hyalinized colitis, but Collagenous colitis is a form of microscopic colitis and there is a club for that on this forum:

http://www.crohnsforum.com/showthread.php?t=18407

I have hemangiomas on my liver also. They are supposed to be harmless unless they get really big, and then they can pose a bleeding risk. It was recommended to me not to take combination birth control pills or get pregnant b/c it is believed estrogen causes hemangiomas to grow.

Maybe someone else with more medical knowledge can shed light on this. When do you have a follow-up with your GI?
 
Do please post in the thread May linked to where someone with more knowledge and experience should help.
Not really something us undiagnosed folk are qualified to help with i'm afraid! We tend to offer support while testing is happening and then will point you in a new direction once you are dx'ed. :rosette2:

:)
 
Suzie, glad to hear you got some answers finally! Yes, as the others said, collagenous colitis is a form of microscopic colitis (in the same family as Crohn's/UC). I haven't heard of hyalinized colitis either though, hopefully someone else in that other thread can help you out! What's next for you? Have they started you on any type of medication/treatment?

Chell, how are you doing? Any better? I don't suppose you've gotten those pill cam results yet?

Bozzy, it sounds like your rheumy is on top of things, and I hope you can get everything figured out soon. As for the knee pain, do they have any idea what's causing that? Is it your hypermobility, or the calcium deficiency or something else? And as for the blood tests, I think they can check for rheumatoid arthritis through blood tests but for other types of arthritis they might need to look further. Hopefully that's what the bone scan will be looking at? I got my arthritis diagnosed through x-ray. Anyway, I hope the tests go well and please keep us posted!

As for me, I had a bad tummy weekend, ick! I ate some fresh broccoli without cooking or steaming it first, and my guts hated that. Sometimes they're okay with broccoli, but not this time. I had a fair amount of d with undigested broccoli bits in it, lovely. Oh, and there was another undigested Asacol tablet in my d. I bravely picked it out - it was a full tablet, not just the shell. The weird thing was, it was squishy! I picked it out and gave it a gentle squeeze to see if it was just a shell or not, and the contents squished out. It seemed like, my body softened it up but just couldn't digest it all the way so the contents remained in the tablet even though everything got softened up. Interesting. I'm going to keep an eye on things and see if it's always a full yet squishy tablet. Fortunately I don't see undigested Asacol all that often - I see undigested tomato frequently but now am able to discern between tomato and Asacol! :p So yeah, I had not a great weekend and mostly stayed in and caught up on some sewing projects. I ate low-res and am doing somewhat better now although still a bit iffy. I pushed myself to go to the gym and it was very challenging - when I'm not feeling great, all the weights seem so much heavier! On a really good day, the weights hardly seem to weigh anything at all and I just breeze through my workout. On not so good days, like today, everything is so heavy and such a challenge. I'm proud of myself for making it through my whole workout though, in spite of it being totally exhausting.

Oh, and some good news - my hubby got a job! The pay isn't great and it's only a couple days a week, but his new employer is someone we've known for awhile and she's awesome. She owns a costume shop and recently she needed someone to help her out at an event, and hubby had recently told her about his lack of employment, so she asked him if he could go help her out. So they were at this event all weekend and I guess hubby was a really big help, so much so that she offered him part-time work in her costume shop. Yeah, that's excellent news! Hubby's been depressed over his lack of employment and I think this will be a nice boost for him, besides the bit of extra money which will be really nice too. Plus it's a really cool place so I think it will be really fun for him to work there! So that's great and I'm very happy. :D (Oh, and no worries from me about hubby going away for a weeked event with another woman - she's a lesbian.)

How's everyone else doing? Big hugs to all and I hope everyone is having a good tummy day!
 
Had my drug study appt today. Started the rifaxamin (or is it??) today. I say that b/c i don't know if I'm getting the placebo or not. Anyway, they compensate me for going to the doctor. So that's nice. Although I'm just gonna turn around and use it to pay off my c-scope. For the first time ever, I have to do stool samples. Kind of nervous/grossed out about that. Oh well.

I'm on the rag, so guts-wise it's been more constipation lately. Haha, never know what I'm going to get when that week comes around.

Cat, that's great about your husband's job.
 
Oh, yeah, my sister-in-law usually has this violent GI reaction (vomiting) when she eats broccoli. She found out recently that broccoli in the grocery store is sometimes broccoli, and sometimes something else that looks just like it when regular broccoli is not in season (an evil twin, sounds like). She knows she has an issue with one of them b/c sometimes she's fine and other times not, but it's impossible to know what you're getting in the grocery store. She found out about it when she went to a restaurant that served the other version and asked what it was. That might be your problem too, Cat, since you say sometimes it bothers you and sometimes not.
 
Hey star, whoa thats a lot of money! I really wish you could get one at least you wouldnt be left thinking what if. My consultant is saying this is the 'last test' for a crohns diagnosis if this comes back clear he wants to send me to London. He is saying if it is not crohns then its a very rare disease i have which he called 'steroid responsive disease' and he knows a top notch consultant who will help me. I am greatful that im not being left to get on with it at least. Hope your all doing ok, i have my pill cam this thurs an get the results by tues at the latest....heres hoping for some confirmation.
 
May, that's very interesting about the evil twin of broccoli! I did some googling and couldn't come up with much definitively, although it looks like it might be "broccoli rabe" as Wikipedia says that's very similar-looking to broccoli but is in a different family (turnip family). So maybe that's it. The broccoli in question for me, I got at the farmer's market so it's in season around here and I presume it was real actual broccoli. I don't know. I think my guts are just generally not super happy lately, I ate some fresh pea pods yesterday at lunch (just a few though) and then poo'ed out undigested peas before bed last night. Hmph. I have eaten peas a lot and have never poo'ed them out undigested like that before, so it seems my guts are just not happy this week with whatever fresh stuff I eat lately.

On a related subject, has anyone else noticed that a change in weather correlates to your guts acting up? For awhile it was cooler here, then last weekend it got hot again, and now it's quite cool. It's driving my allergies nuts, my nose has constantly been dripping for awhile now. And I read on here once that the gut has the 2nd highest amount of histamine receptors, so allergies can affect the guts. I'm wondering if maybe that's why my body is less keen than usual on fresh veggies. I can usually get away with a bit of fresh veg here and there but not for the past few days, and it appears to correlate to the crazy weather changes. I hadn't been taking any allergy meds until today, I had a claritin this morning but nose is still dripping. I had a few more pea pods today as an experiment, so we'll see if the claritin changes anything guts-wise.
 
It's definitely not broccoli rabe, that stuff looks pretty different and is sold as it's own thing. This is something else. I just sent her a text message; I'll let you know when I hear from her.
 
@cat - i personally think it is just my hypermobility that is causing the pain. but im glad the rheumy is ruling out other things too, to be sure. ive had xrays earlier this year which were fine.. apparently the bone scan shows inflammatory changes too? im sure that is what he told me. but hey ho!
also, that is fantastic news that your hubby has a job!

how is everybody else doing? i had a bad guts day on sunday :( it was so bad i was just passing mucous.. and i feared the bleeding would start again.. but thankfully not.
 
Thanks May, let me know what your S-I-L says. I didn't know what broccoli rabe is (hubby is the cook in our house - my cooking skills don't extend much beyond things like mac & cheese or spaghetti). I googled an image of broccoli rabe and you're right, that's not a doppelganger for broccoli and not what I had bought at the farmer's market. I think I bought actual broccoli but still not 100% sure.

Bozzy, I don't know anything about bone scans but I wish you luck with it! Hopefully it rules out anything bad and it's just the hypermobility causing the joint pains. Do your joints ever pop out of alignment? I only have "bendy"/hypermobile? joints in my knees and elbows, and sometimes when I bend down, one of my kneecaps will ocasionally slide off to the side and just pop right out of joint. It's super painful but I've always been able to pop it back into place myself pretty quickly. My elbows make crackly sounds but don't pop out of joint like that. The knees have been popping out of joint for probably 10 years at least now, but it doesn't happen very often fortunately. The last time it happened was last summer I think? It happened once on xmas and my parents freaked out, I was only in my early 20s at the time and I crouched down to pick up a gift from under the tree and *pop* went the knee! I fell to the ground screaming and got it back into place pretty quickly, but my parents didn't know what was going on and it freaked them out a lot. It's just one of those things that's always happened to me so I never really questioned why it happens. Just another fun quirk of my health I guess! :p

And I've been having some not-so-great guts days lately too, due to the broccoli incident I guess. And last night & this morning I've been so gassy! I felt like I had to poo this morning when I woke up so I ran to the bathroom. Sat on the toilet and all that came out was a huge amount of gas! I can feel air rumbling around in my guts now so I'm sure I'm in for another round of gas soon. Lovely! I hope you're feeling better after the mucus incident? When is your bone scan?
 
haha, my shoulders and knee caps can dislocate slightly (it can hurt, but it just feels incredibly loose and unstable). but my fingers are the most bendy! (my thumb can touch my forearm in either direction!).. so obviously my wrists must be hypermobile too. annoyingly my hips aren't hypermobile, because i couldn't give birth naturally lol!!!

im feeling much better now, just a sore throat.. beginnings of a cold im sure as the hubby and little one are both suffering from colds.
i dont suffer with bad gas or bloating.. im quite lucky in that respect!
i dont have a date yet for the scan, i will get a letter in the post with an appointment sometime soon i guess (i did ask what the waiting time was, but he said a few weeks.. so not too long lol!) he said i get injected with something radio active and it images the whole skeleton. sounds cool..!
 
Cat-a-Tonic said:
Suzie, glad to hear you got some answers finally! Yes, as the others said, collagenous colitis is a form of microscopic colitis (in the same family as Crohn's/UC). I haven't heard of hyalinized colitis either though, hopefully someone else in that other thread can help you out! What's next for you? Have they started you on any type of medication/treatment?

I finally spoke to my dr. and have a severe case of Collagenous Colitis. My meds are:
Prednisone (He wants me on this for a whole month)
Tylenol #3

I am soooo glad I got a diagnoses... Hopefully I can start to feeling better soon.
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My hips aren't hypermobile either - I've never been able to do the splits! I haven't given birth so I can't comment on that, but I do have arthritis in the right hip (oddly enough, the left hip has been aching all day today) so I doubt I'd be able to give birth naturally either.

And you are lucky that you don't bloat - I bloat out every single day, even in remission, and regardless of what I've eaten! I start off in the morning with a somewhat flat stomach and then as the day goes on it distends outwards. I've read that this is fairly common with IBD but it seems to be worse in remission if anything! Before remission, when I was ill all the time, my guts tended to expel everything almost as soon as I'd eaten, so there was no time for bloat to build up because everything was always coming right out of me, and I was losing weight from being ill all the time so my belly was always really flat. Then, I was on Entocort for 7 months and I regained the weight that I had lost, but a lot of it went to my belly area and it hadn't been there before! So I got a bit of a doughy belly from that and the bloat just makes it that much worse. The bloat seems to be a combo of gas and food sitting in my guts (it doesn't always digest well, but it also doesn't come shooting out like a rocket anymore). It's kind of sad because I've been working out so much for about a year and a half now, my arms are looking great and my legs are getting there too, but the flab & bloat around my midsection still refuses to budge. I'm sure I have an awesome 6-pack under there but with the flab and bloat covering it up, you can't see it and it just looks gross, ha ha. I swear, some mornings I wake up needing a belt but by the afternoon I don't need a belt anymore and am tempted to unbutton my pants! It's ridiculous some days and today is a pretty bad one as far as gas & bloat. Oh well, just another fun quirk of this illness I guess.
 
Suzie, that's good that you're getting some treatment! Have you started on the prednisone yet? What dose are you starting at and when do you taper down? And while pred is great for getting things under control, you will probably need some sort of maintenance medication once you're off the pred. Did your doc mention anything like that? Or are they going to wait and see how you do on the pred first? And I'm assuming the Tylenol 3s are for pain relief, that's good. Don't overdo it because Tylenol can affect the liver if you take too much. Also, the codeine in Tylenol 3s may constipate you, so start slowly and see how they affect you. Good luck with it all! Hopefully the pred kicks in quickly - when I was on it, it worked great for me within the first 24 hours, although it might not be quite that quick for you. Give it a few days at least and hopefully by then you'll be doing better.
 
Cat-a-Tonic said:
Suzie, that's good that you're getting some treatment! Have you started on the prednisone yet? What dose are you starting at and when do you taper down? And while pred is great for getting things under control, you will probably need some sort of maintenance medication once you're off the pred. Did your doc mention anything like that? Or are they going to wait and see how you do on the pred first? And I'm assuming the Tylenol 3s are for pain relief, that's good. Don't overdo it because Tylenol can affect the liver if you take too much. Also, the codeine in Tylenol 3s may constipate you, so start slowly and see how they affect you. Good luck with it all! Hopefully the pred kicks in quickly - when I was on it, it worked great for me within the first 24 hours, although it might not be quite that quick for you. Give it a few days at least and hopefully by then you'll be doing better.
Click to expand...

Hi Cat my GI dr. has me on 10MG tabs. I take four tabs the first week, 3 the 2nd week, and then 2 tabs for two weeks then stop. I am also taking pepcid 20mg once a day. As for the Tylenol 3, I've been only taking that once a day when I have severe pain....otherwise I have been taking Tylenol. I wish I would get constipated, just kidding.. But really, I haven't had that since I was a kid. In my 20's I only had D and now I am 40, soon to be 41... on
September 24th. Yikes. Oh they wanted me to take Entocort or something like that 3mg for 6 weeks... but it was 1200.00 bucks and the Pred was only 16.00. I am like I'll take the side effect, thankyouverymuch. I just want to dance again, doing ballet was so relaxing for me. Thank you Cat for all your help and support. :)
 
I'm always both sad and glad when someone "graduates" out of our club, and I will keep an eye out for your posts elsewhere on the forum to see how you are doing

:rosette2:
 
Suzie, if you're still reading this thread - how's the prednisone going? Have you noticed any difference in how you feel since you've started taking it?

How's everybody else? I'm doing well. It seems like about half the people at work are sick with colds/flu/ some type of virus, so I'm sort of holed up away from everybody as I really don't want to catch it! Otherwise though I'm good - I had some cooked broccoli (the same stuff I got at the farmer's market, the stuff that made me feel yucky when I ate it raw) with dinner last night and it went just fine, so I guess I just shouldn't risk raw veggies at all. It's either juicing or steaming/cooking, that's the only way it's really safe it seems. Speaking of safe fruit & veg, I heard that there was a mango recall? If that's true, it sucks! Mangoes are one of my safest fruits right now, there was a point recently where I ate fresh mango (without skin of course) every day for 3 or 4 days in a row, and I felt fine! That seriously never happens with fruit, so I'm upset about this recall thing. Oh well.

Anybody have fun weekend plans? I'm going to visit my grandfather this weekend and I fear it might be one of the last times I see him. His health has been terrible for awhile now but apparently he's been going downhill even more lately. He's still all there mentally, but every other part of his body has failed or is failing it seems. It's kind of sad, but I definitely want to see him and chat a bit and let him see my dog. He just loves dogs, and he especially loves my dog - on the phone the other day, he said he considers her "a great-grandchild" and he also frequently refers to her as his "great grand-dog". If I didn't know better, I'd almost think he likes my dog better than me. :p Anyway, that's me. Anybody else doing anything this weekend?
 
Honestly... cat... RAW VEGGIES?!? You are one strange lady.. I need to have words with you lol!
Carrots maybe... but NOT broccoli!!!! Yuck..
sorry to hear about your grandad, how old is he? My grandad has a rare condition called HHT and he is so badly ill now aged 71.. im so close to him.. i worry a lot.

@motheroftwins - i hope the pred kicks in soon.. it worked for me but took about 7days to start working. i suffered with awful skin and sweats though.. along with mood swings, weight gain and sleep disturbance. Hopefully it doesnt cause those things. but its a "cruel to be kind" sort of drug x
 
Suzie, are you taking pred in the evenings every day? You really might want to switch to taking it in the mornings. As you said, it can make it difficult to fall asleep. If you take it when you first wake up, by bedtime some of it has worn off so that'll make it a little easier to fall asleep. I had a difficult time falling asleep when I was on steroids too, but as you taper down the dosage it should get easier. As Bozzy said, it's one of those drugs you tend to develop a love/hate relationship with - love feeling better but hate the side effects. I hope it starts working soon. Have a happy birthday!! I hope you're able to do something fun or at least eat a little cake. :)

Bozzy, yeah, raw veggies, I know, I'm a glutton for punishment I guess. About half the time I can get away with raw veggies, the other half of the time not so much. :p Thanks for asking about my grandfather, he's 80 and will turn 81 next month. So he's had a long full life. At age 75 he had a cardiac arrest and his kidneys failed and a bunch of other stuff happened to him all at once and that's when his health really took a nosedive. He's been really ill ever since, honestly I didn't think he'd make it this far! It's been almost 6 years since all that bad health stuff happened, he nearly died (well, he was technically dead until they got his heart going again with the defibrillator!). He does dialysis 3x per week and takes a boatload of medications. He has diabetes, vein problems, he had skin cancer earlier this year, you name it pretty much he's had it or has it! Oh, and he has bowel issues too - last year my grandmother was cooking lunch for us and she asked if we wanted veggies with our chicken & potatoes, both my grandpa and I said No! Then my grandpa looked at me and told me, "If I eat vegetables then I have to go to the bathroom about 7 times!" So I guess it runs in the family, ha ha. He also has arthritis in the right hip just like I have, although his is way worse than mine (he walks with a walker - he was supposed to have surgery on his hip, but his heart is not well enough for him to survive the anesthesia). So yeah, he's falling apart health-wise. I just try to cherish every visit I get with him. I hope your grandfather has at least a few more good years left - 71 isn't super old, and I'm sorry to hear he's so ill at a relatively young age. I haven't heard of the illness you said your grandfather has - are there good treatment options for it? If you're able to, just spend as much time as you can with your grandfather while he's still here. That's what I'm trying to do. It's sad knowing that he doesn't have much time left, but I'd rather see him a lot than not see him before he goes. Anyway, give your grandfather a big (gentle) hug for me!
 
He really has sufferd a lot your grandad and done so well to get to 80

The condition my grandad has is hereditary (but we're not biologically related)
Its so rare there are only 2 consultants in the whole of the UK who deal with it.
it affects his blood vessels which break easily.. he's had his face lazered due to bleeding when shaving. he has SEVERE nose bleeds. it affects his whole gastrointestinal tract.. so has throat bleeds too. he also has AVMs in his lungs where he has coils fitted. He used to get his throat/nose lazered every few years which worked.. but now its so bad he has to have a blood transfusion every 4wks along with iron infusions. so he is severely anaemic.. and lost a lot of weight. since last xmas he has oxygen tanks at home.. to have whenever he uses the stairs :( :(
 
Aw Bozzy, that sounds like a horrible condition! Has your grandfather had this his whole life? :( And how scary that there are only 2 doctors in the UK who deal with it - are either of those doctors relatively near where your grandfather lives? I couldn't imagine being that ill and having to travel to see a doctor far away. I hope he is comfortable at least in spite of being so ill. My grandfather naps a lot and he enjoys watching sports on TV, and I think he's comfortable. I hope your grandfather is hanging in there in spite of all that and is comfortable and reasonably happy too. Big hugs to you both!
 
Hi all, I'm here. Looks like the club got quiet for a bit! How's everyone doing? I had a rather interesting visit with my grandparents. My grandfather gave me a bunch of money for a new camera and then he told me that they're thinking of getting a dog! Eek! I know I've mentioned already that he's really ill - his health is failing fast and he's not long for this world. He can barely walk and has little energy. My grandmother doesn't walk well either, she can walk without a walker but she can't walk far or fast either and she also doesn't have a lot of energy (she's 80 and has already had one heart attack so her health isn't superb either). So they told me they want a dog and they asked if I would care for it after they're gone - I was like, NO! Hubby and I both said it in unison - we are a one-dog household and don't want to care for an animal just because they're feeling selfish and want to get an animal that they don't have the strength or energy for and the animal will surely outlive them. My grandparents have been declining mentally a bit too lately but this is new and bizarre! They haven't had a dog or any pet for over 30 years, their last dog died just before I was born (I'm 32) and all of a sudden now they are reaching the end of their lives and they want a dog??? Seriously, WTF? I told them don't do it, but they're stubborn people and might do it anyway. Kind of a weird, strange, sad situation if they do get a dog! Pretty out of character for them too so I'm a little worried about their mental status.

Other than that, I have yet another cold and my guts aren't happy with that. So my throat hurts and I'm sniffling and coughing, and also my guts are crampy and I'm a bit nauseous and taking extra trips to the bathroom. This is the 3rd cold I've had since summer began, I'm so sick of this! I saw my nieces & nephews over the weekend and I always seem to get sick when I'm around little kids, they're such germ factories. My oldest niece, who is 9, clung to me the entire time (she's usually not like that) so I'm assuming I got the germs from her since I couldn't get out of her sight. It was kind of adorable, actually. I went to the bathroom at one point and when I came out, she was wandering around outside and ran to me when she saw me, and she said "I was looking for you everywhere! I didn't know where you went!" Aww, for some reason my niece became my lil' buddy! I think it's because she's the oldest and most mature, she likes reading and math and writing and all that stuff. Her siblings are 7, 5, and 2, and they do more kiddy stuff like run around and play in mud and stuff like that. She's past that stuff so I guess she wanted to hang out with the older people and for whatever reason she clung to me in particular. Which is totally cute, I honestly don't really like kids (though I prefer older kids to younger ones, as I can carry on a conversation with them and they are more self-sufficient, don't need diapers changed and so on). So I never thought I'd be seen as the "cool aunt" that a kid would want to hang out with, but I guess somehow I became "cool aunt" anyway! So that's pretty neat. But I have a cold from hanging out with children, ick. Can't wait until my niece is an adult so that we can carry on a conversation AND no icky kid germs floating around! :p
 
One more to the club! I've had c-dominant IBD for years, have bloating that gets about 10x worse at night. Integrative approaches for gut motility never helped. Finally put 2 & 2 together and figured it's an inflammatory pattern. Trying to see a UC/crohn's specialist soon. Thanks to everyone for sharing your experiences on this thread!
 
@cat - thats so cute about your niece... I guess you would be a cool aunt because you're not into kids.. in a strange way.. kids look up to older adults/kids because they want to be like you. and if her younger siblings are into kiddy stuff - she probably loves the refreshing "normal" time she gets with you and not being treated like a kid haha!

I had my bone (isotope) scan this afternoon.. it was fine. apparently they are looking for arthritis?.. it was so cool to watch. i had a scan of my whole body (which i didnt get to see).. but they did a separate scan of my feet ~(which took 10 minutes) and a separate scan of my hands (15 mins)
so whilst my hands/feet were being scanned i could see the images slowly appearing on the screen!
they inject you with phosphate with some radioactive mixture. and you have to wait 2hrs before your scan. apparently your bones use phosphate to constantly repair your bones. so if you have any "wear and tear"/arthritis.. then the phosphate will localise to that area that's affected. then the camera will show it up! cool huh?..

i laughed so much when reading a list of FAQ's for this type of scan.. and one question was.."will i glow in the dark?" HAHAHAHHA!!!! :p

hi joeychang! welcome to the gang! let us know when you get to see an IBD specialist :)
 
Bozzy, that scan sounds neat! And I'm glad it didn't find anything bad. I have a tentative diagnosis of arthritis in my right hip, I wonder if I should try to get more phosphate in my diet to help repair it! The only thing my doctor ever said to do for my hip is physical therapy and sports creams and tylenol/acetaminophen (which I believe is called paracetamol in the UK). Hm, I'm going to do some googling about arthritis and phosphate. If I could heal my hip, I might be able to jog more - currently my limit is 1/2 mile (about 5 or 6 minutes of jogging) - any longer than that and the hip starts to hurt.

Joeychang, welcome to the club - good luck with the specialist and keep us posted!

As for me, it's been a rough week. My job duties changed - for the better, but there's a bit more work involved too. So that's been an adjustment. I had a cold at the start of the week and then for the past couple days my GERD went crazier than usual and the excess stomach acid caused an attack of gastritis, it was so painful! I could barely eat and was very nauseous too. Fortunately I'm doing a lot better today, although I'm exhausted from all that and have a bit of a headache. Really hope I'm not coming down with something else now - hubby was dizzy all morning which is very out of character for him, so I suspect he's coming down with something, and if that's the case then I'll probably catch it too. It's always something, isn't it? Get over one health hurdle and another one comes up! I'm looking forward to the weekend so that I can rest and relax. It's been a loooong week! Anybody have fun weekend plans? Anybody else planning on just sitting on the couch and watching TV and napping and generally doing nothing?
 
Hmmm, so I thought my trial was working. I had several days of normal but frequent stools. But the last 3 days I've had D a few times each morning. So I'm wondering...oh well. Supposed to bring in a sample at the next appointment. Gross. Not looking forward to that.

This weekend, we're taking the kids fishing out at my husband's boss's dock. So that should be amusing. Hope you have a nice restful weekend, Cat, and everyone else as well.

Oh, and my SIL couldn't remember the name of the broccoli look-a-like, and googling it didn't turn up with anything. So I dunno...
 
Oops, sorry Bozzy, I misunderstood! Okay, well then, I hope you get the results soon and that they're good! If you do have arthritis, hopefully it's mild and will respond to stuff like physical therapy. I went through PT for my arthritis and it's a lot better now than it was before PT. But I hope you don't have any arthritis. Good luck and keep us posted!

May, I wonder if that means you're in the placebo group then? And yuck, stool samples, no fun. When I first got sick I had to fill a ridiculous amount of stool samples, something like 8 different containers. They wanted to check me for all types of bacteria & parasites I guess (it all came back normal of course). I hope it goes as smoothly as that can go.

How's everyone else? As for me, I got my test results back from my pH impedance (NG tube) test. And the results were not good at all! I wrote more about this in the "Cat's Updates" thread, so check there to see more detail. But basically, I'm in the 95th percentile above normal as far as reflux goes, I had 48 episodes of reflux in a 24 hour period, 21 of those episodes reached the top of my esophagus, and the longest episode of reflux was over 5 hours long (and that's just one episode, there were another 47 that happened that same day!). Holy cow, I impress myself with how terrible my GERD is! I didn't think it was quite that bad. And finally, for once I got a positive result on a test! Not that I'm super happy, it sounds to me like my GERD is wayyyy worse than I thought it was and that's not a good thing. My GI isn't the one who wrote up the results, so he's reviewing them now and is going to get in touch with me soon. In the meantime, I'm just hanging in there and trying not to have a recurrence of gastritis as I had a few bad days of gastritis pain last week. Food is kind of terrifying to me right now with the gastritis and test results and everything, so I'm eating really bland and low-res. I'm popping more Tums than usual too - partly precautionary to prevent more gastritis pain, and partly because in the past I kind of limited myself as I didn't want to overdo the Tums. But hell, now that I know my GERD is this bad, I won't feel bad about taking Tums. Just gotta make it through until I talk to my GI and figure out what's next for me! So weird to finally get a strong positive result on a test after so many negative/normal results, such mixed emotions! Of course my probably-IBD is still undiagnosed but this is a big stepping stone nonetheless. Anyway, I'm rambling again. So yeah, long story short, my GERD is really bad and I hope my GI calls or emails me back soon!
 
Just found out last night that I was in the placebo group. I had to fill out nightly diary entries with questions like:

How many BMs? Rate on the stool scale your least formed stool.

Rate your bloating.

Rate your pain.

Rate your symptoms overall.

My baseline bloating (never one of my complaints, really) and pain were not high enough to warrant my staying in the study. Apparently they wanted people who bloat, LOL. So I failed. ;) But there's another study. I am actually going to get the consent forms tomorrow and read it b/c I'm not sure I want to do it. I think it's a opiod-like narcotic and I'm not to sure about that. Most narcotics make me nauseated. My pain is very low on a day to day basis. I only think I'm going to die when those acute attacks hit, pretty much. So meh.
 
You're lucky you don't bloat, May! My bloating is pretty bad even in remission. I've tried stuff like Beano and Gas-x but they do nothing (if anything, I'm pretty sure Gas-x made it worse!). And I don't blame you, I wouldn't want to take the opioid narcotic thing either. It just doesn't sound prudent to take something so strong when you're not doing very badly overall.

Oh, can everybody please keep StarGirrrrl in their thoughts? I saw on facebook the other day that something sad happened in her family and I'm sure she's going through a rough time with that right now. Star, sending you lots of big gentle hugs and keeping you in my thoughts. Hang in there, dear, hopefully brighter days are coming soon.
 
Hi everyone! I've been lurking around here for a while but have yet to type out my story. It feels weird talking about my poop LOL anyway, I"m just going to lay it all out. Maybe someone has some ideas or suggestions...

I've had "stomach problems" off and on for years. About 3 years ago I started having daily diarrhea. Like, get up in the morning and run to the toilet diarrhea. Every day, 6-8 times a day, mostly in the morning, but a few times at night too. I tried everything including, imodium, pepto, probiotics, alkaseltzer, prilosec, zantac, tums, anything and everything that aids in digestion, stomach upset, etc. No help. Even the imodium didn't stop the diarrhea. I started having pain in my lower left abdomen. Sometimes severe, sometimes extremely uncomfortable, but always there. I get horrible bloating, cramps, and severe nausea.

I've seen my GP, and 2 GIs, had a colonoscopy, several CTs from ER visits and a SBFT. I was tested for celiac, parasites, etc. and had my stool sample tested. Everything comes back normal. I've been prescribed bentyl, lomotil and trazodone. The trazodone is supposedly supposed to help with pain management? but does nothing except make me sleep and gives me restless legs. The bentyl does nothing. The lomotil does help control the diarrhea but makes me feel extremely weird.

I just started seeing a new GI at a digestive health center at the local medical school (VCU-Richmond, VA) and I am hopeful.

THanks for suffering through that :tongue:

Chandra
 
Hi Chandra, welcome to the club. Your story sounds a lot like mine - almost all of my tests have come back normal and I've tried those meds you mentioned too. Lomotil works almost too well for me, it constipates me for days sometimes! Trazodone makes me sleepy too but otherwise does nothing, and bentyl is a joke. It's an IBS med so I'm not surprised it's not doing anything for you! I hope the new GI can figure things out and get you some proper treatment so you can get some real relief. Please keep us posted!
 
Wow, this thread went quiet! I hope that means everyone's doing okay? Out enjoying life and not having too many tummy troubles? I hope?

I had a bad couple of weeks - I had a cold, then my GERD went more crazy than usual so I had a bout of bad gastritis pain, and then I apparently pinched a nerve in my neck/shoulder/upper back and dealt with that pain! I'm finally feeling mostly normal again after all that. I'm not in a good mood, though. Tomorrow is my IBD-iversary. Oct 9, 2009 was the day I first got sick and my life changed forever. I don't like that anniversary and I don't like that after 3 years, I still don't have an official diagnosis. So I've been in a very grumpy mood today.

I did hit the gym hard earlier and that made me feel great - I swear, the gym is like my mental therapy. When I'm working out and pushing myself and using my muscles and making my body stronger, I don't feel like a person with an illness. I feel like a healthy, normal person who can do anything and has no limits. I feel strong and great and not ill (even if I'm refluxing or whatever in the gym, the good strong feeling still outweighs the bad). In the gym I'm a healthy person. It's like my hour of denial. ;) But it never lasts and once I finish exercising, I slip into being "sick me" again and then I have to remember all my limits, can't eat this or do that, have to be wary of how many spoons I have, etc. So I was in a good mood for an hour today but am back to feeling quite grumpy again. Hmph. 3 very tough years and still no solid answers to show for it and who knows how many more years to go. :(
 
No news is good news right? ;)

Im feeling rubbish again.. my fatigue and breathlessness has returned. along with vision issues and dizziness.
its really starting to hit me.. and ive been upset now and again. im never going to be the person i used to be. even if i opt for surgery.. it isnt a cure. it even risks making my symptoms worse..
boo :(
 
WOW! This is overwhelming. I can't believe some of you have been waiting for years to be diagnosed. I've been in horendous pain for the past few weeks, I dunno if I could go years like this.
I've been having issues with diarrhea for years, since I was a teenager and I'm now 30. To be honest I thought it was normal, I thought everyone got diarrhea all the time. When I was in my early 20's I found out it actually doesn't happen all the time to everyone and I went to see my doc, he didn't seem concerned and told me it was most likely just the flu, so I diagnosed myself with being lactose intolerant. Which seemed to help a bit with the diarrhea and cramping. About a month or so ago I started to get these weird spots on my legs, non itchy, but not very pretty, than on my arms. Then 3 weeks ago I went to bed in pain, I thought maybe it was just gas, but when I woke up I could barely move the pain had gotten so bad I was in tears sobbing, I finally went to a new doc and he said it looks alot like crohn's, but he can't diagnose me as I would have to go to a GI specialist. I'm getting my referal today and I'm hoping it doesn't take too long.
I'm scared and nervous and now totally overwhelmed that it might take years to get a diagnosis. I have so many questions about this desease, but I don't know anyone who has it.
 
Aw, Bozzy, I'm sorry to hear that you're not doing so well again. :( Do you have upcoming appointments? Are your doctors able to do anything at all for you besides surgery? Big hugs dear, I hope you feel better soon.

LisaH, welcome to the club and the forum. From what it sounds like, you have been suffering for years! And your story sounds a lot like mine. I've had a "sensitive stomach" for as long as I can remember and I thought it was normal to get anal fissures and have frequent bad reactions to food. As a teenager I cut out red meat and then when I was 20 I became lactose intolerant too, and this IBD or whatever it is hit me just before I turned 30 (I turn 33 next month). I hope my story didn't scare you too much - although I'm officially undiagnosed, unofficially my doctors are treating me as though I have IBD and I've been responding well to that treatment. So it's possible to do well and get good medical care even without an official diagnosis.

You mentioned spots on your legs - try googling "erythema nodosum" and see if that looks like what you've got. EN commonly happens in conjunction with things like Crohn's so that might be another puzzle piece for you. I hope you get to see that specialist soon and can get some answers and relief! Hang in there and keep us posted!
 
Unfortunately surgery is the only option :( but im still waiting on my bone scan results. i see my rheumy on 2nd November.. ages away! I also dont know my blood tests on my parathyroid.. due to my calcium levels. so its all wait and see at the moment. if i rule out other potential causes 1st then ill opt for the surgery xx
 
hi guys, my bone scan results are back. it showed issues in my feet and the centre of my chest

doc thinks could be SAPHO syndrome. but should know more next week x
 
Hello gang, how are you all doing? It has been very quiet on here recently.

When I last saw my GP with pain from the pill cam, he gave me coedine. Which was nice, until I had an allergy to it. So then I got some citirizine to take with it. Neither of them really help.

I got my pill cam results. All normal. What the hell can I do now? :(
 
Sorry you didn't get any answers, Chell. Do you have a follow-up with your doc? I guess that would be the first step to determine what you need to do.
 
Chell, how disappointing and frustrating. :( If it's any consolation, my pill cam came back totally normal too. My GI had said beforehand that if there was ANY sign at all of IBD on the pill cam - even slight redness - that he wouldn't hesitate to diagnose me and start treating me. I was crushed when it came back normal, not even a hint of redness or any sign of illness seen. Fortunately, my GI still felt that I have IBD, and he treated me anyway, so I'm in remission now. I'm pretty lucky! I agree with May, you need to see your doc and ask what's next - more tests, a trial of medication, something else? Have you been checked for other illnesses that can cause IBD-like symptoms? Lupus and Addison's are ones to ask about. Testing for both involves blood tests so not too difficult (no prep involved!). I went through testing for both (they were ruled out for me which is another reason my GI was comfortable with treating me for IBD). Anyway, I hope you can figure out a satisfactory next step. Big hugs and hang in there! I know it's so frustrating, feel free to PM me if you need to vent. I've been there and I know that "oh no, what now???" feeling all too well.

Bozzy, so what exactly did the bone scan see - arthritis or something else? Do you have pain or symptoms in the areas that the scan saw issues? I presume when you say you'll know more next week, that means you've got a follow-up? If so, good luck and I hope you get some definitive answers and that everything is easily treatable! I hope you can avoid surgery too! I'm not familiar with SAPHO syndrome so I will google it after I'm done posting this.

Hi May, nice to see you around. How are you doing these days?

As for me, I had read the thread in "Diet & Fitness" about Turmeric and everyone was just raving about it, and my uncle also personally recommended it to me, so I decided to give it a try. The consensus in that thread about Turmeric seemed to be that 1,500 mg was a good starting dosage. I could only find 250 mg capsules but figured I'd start small and work my way up if I noticed it doing good things for me. I took Turmeric for 2 weeks - and they were 2 weeks from hell! My GERD became WAY worse than usual, to the point where I could not exercise (and not being able to exercise bums me out like nothing else!). I had two really horrible reflux attacks in those 2 weeks. I hadn't changed anything else, diet and all other meds & supplements stayed the same, so I figured it had to be the Turmeric causing the change. Sure enough, I stopped taking it 2 days ago, and I felt great the past 2 days! GERD has gone back down to its usual level (bad but not debilitating) and I've been sleeping better and just generally feel much better all around. So no more Turmeric for me! Even a small dosage did me in, I'm glad now that I couldn't find 1,500 mg capsules! Oddly enough I had a similar reaction to probiotics, it's like things that are supposedly good for me sometimes just get totally rejected by my abnormal digestive system. Frustrating! But now I know, there's one more thing to avoid.

I hope everyone else is doing okay? Anybody have fun weekend plans? It's supposed to rain here all weekend long (they say there is a 100% chance of rain tomorrow, I don't know how they can be completely sure of that!) so I'm staying in for the most part. Having brunch with an old friend on Sunday and I'm looking forward to it (she let me pick the restaurant, she's very nice about accommodating my dietary needs). So it should be a calm & low-key weekend, just what the doctor ordered.

Oh, speaking of the doctor... my GI *still* hasn't gotten back to me. We played phone tag earlier this week and I emailed him and said call me ASAP, anytime, I will have my phone on me at all times so please just call as soon as you can. He hasn't called yet and I'm really getting mad! He's done this before but now he's seen shocking bad test results from me and he KNOWS I'm suffering and I even let him know about me being much worse the past 2 weeks. Radio silence from his end. Grrrr! I have an appointment with him in mid November, but I'd really like to talk with him before then as it's a month away! What are the odds he'll call me before then?... (don't answer that! Ha ha)
 
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Hi, Cat, I'm doing very well, thank you for asking. So, I know I said I was against diet changes that I didn't feel were necessary, but for other non-gut related reasons, I decided to back off of milk (not all dairy, though) and also refined sugar. And I have had hardly any loose bowels to speak of!! I went to my parents' last weekend, and had some sweets (still not a lot) and whammo, loose BM the next morning. At the request, nay demand, of my husband last night, I made chocolate chip cookies, which I am powerless to resist. So I'm waiting to see how that affects me. Anyway, something seems to be helping. I also started making yogurt a few weeks ago and have been regularly eating that either plain or with a smidge of honey. And the manuka honey in green tea is the only other change to speak of. Oh, yeah, and digestive enzymes and the psyllium (although I confess to frequently forgetting to take it). Hope it's not a fluke and that if I keep doing what I'm doing things will stay quiet.

Wouldn't that be a kick in the pants if all along this has been nothing more than food allergies? I guess it could still be food-triggered IBS or whatever, but improvement is improvement, no matter what the root cause of the problem is.

Other good news: My MRI ended up being wayyyyyyy cheaper than I was expecting. Thank goodness. I was seriously bummed about racking up huge medical bills again.

I'll never understand your doctor. You'd think he'd be anxious to talk to you considering your terrible test results. I guess phone tag shows he's making an effort, but still...wonder what he's going to suggest. I guess there's no point in speculating, but it seems like you've failed a lot of the GERD meds.

Sucks about the turmeric. That is supposed to be good stuff, seriously anti-inflammatory. I guess you should avoid Indian food. Did you take it with fat? It's fat soluble. I wonder if you just take it without fat if it just kind of hangs out for awhile in your stomach. Dunno. Just a thought. I don't guess it's worth trying again though.
 
@chell - im so sorry you are not getting any closer to a diagnosis/answers. has your doctor arranged a f/up with you at all?

@may - im glad limiting your intake of milk and refined sugar seems to have made a difference.. i have instances where certain foods are triggers, such as eggs/chilli/soya sauce.. but then as soon as my bowels are settled.. i can eat them with no issues! its so hard trying to figure out what the hell is wrong with our bodies!

@cat - its so annoying that your doctor isnt getting in touch with you!! !@#$£!! lol
to be honest.. my follow up isnt until 2nd NOV. but i spoke to the rheumy nurse because my arm pain etc was getting really bad. then the next day my rheumy called me himself! (so i was very impressed by this) obviously he was in clinic, so it was a quick call.
he just explained that surprisingly my knees were fine.. but my breast bone and collar bone are affected along with my feet.. 9didnt say exactly what is wrong with those areas
SAPHO stands for - Synovitis, Acne, Pustulosis, HYperostosis and osteitis.
my Rheumy said its very rare and has only seen one case of it before. he is going to call me next week after he has discussed my results with other doctors.

I know i have acne (though not as severe as seen online.. thankfully lol)
and i do get itchy soles of my feet and palms of my hands.. i also get tiny pin prick size blisters on my fingers/palms

i think its similar to psoriatic arthritis - psoriasis + arthritis. i didnt realise that quite a few skin conditions are linked to muskulo-skeletal conditions. strange huh?

anyway, i shall know more next week i guess!
 
Hey club! It's been a while but I hope y'all are doing well. I'll try to catch up soon. Figured I'd update real quick. I had my precious baby boy 10/2. He weighed in at 8 lbs 5 oz and was perfect. Didn't have any withdrawals from the meds I was taking praise God and aside from a broken clavicle (I guess my hips weren't quiet big enough for him) he is healthy as can be! As for me I've started experiencing problems again post partum...the terrible left sided mystery pain and pain with bms. I plan to see my GI and proceed with the plan if getting a scope done to see what's going on. Not sure if I hope for it to by my IBD or C Diff again...I just want to be well!

Anyways I'm off to go snuggle my newborn. Hope everyone is well and I'll catch up soon
 
Hey guys! Thought I'd keep you updated. Had my laparoscopy on Thursday the 11th and they discovered that my appendix was enlarged, that I have adhesions all over my gallbladder as well as fluid in my pelvis. I had my appendix removed and this is my first day out of hospital after a nightmare with infection.
We are still waiting for the pathology results of my surgery so no updates on that yet but at least I know for sure that I'm not just imagining things. Now I'm going to get some long overdue sleep and head towards recovery. Hope you are all doing well!!
 
Has anybody else had this happen to their nails??? I haven't been able to find a doctor where I live now, and since my last GI just told me to go back to a general physician, I am having to work extra hard to find one who WILL help me. I don't know if it's something I should be concerned about or if it's just part of everything else going on. Thanks! Hope everybody is having a decent day!
 

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Yes; no injury. It started a couple months ago and seems to be getting worse. The purple is just fingernail polish that I couldn't get out of the grooves (and it looks TERRIBLE painted lol)
 
I'm here. Sorry for not posting more - work has been so crazy lately with no letup in sight. I haven't posted anything much lately either because there's not much to report - I'm *still* waiting for my GI to get back to me. I left a(nother) rather angry message for his office on Monday, saying that I'm really getting frustrated and upset that he hasn't gotten back to me and it's been something like 3 weeks now! He emailed me this morning saying "I will call you" but so far he hasn't. My GERD has been much better controlled (back down to the baseline it was at anyway) since I've stopped taking Turmeric, so at least I don't feel like I'm suffering horribly anymore, but I'm still not happy. I have a GI appointment in mid-November and I may just rip him a new one at that appointment! Honestly though, being so busy with work and everything has taken a lot out of me so part of me feels too tired to fight right now. I'm mad and complacent all at once if that makes sense. I was much more mad when my GERD was super riled up due to the Turmeric, now I'm more "whatever" but also still mad. Mostly I'm tired! I guess I feel like I'm on autopilot at the moment.

How's everyone else doing? I would write more (you all know how I can ramble on!) but I'm not focusing very well today so I'm going to make this a short post. I hope everyone is doing okay, big hugs to all.
 
No news here. So that's good news. I had a cheat-y weekend as far as sugar was concerned. And I did have a couple loose BMs but nothing really severe. And no cramping.

I hope he calls you back soon, Cat. That's kind of crazy. Seems like a doctor who says "I will call you" should make the time at some point.
 
Yay, I finally heard back from my GI! He emailed me this morning and set up a time to call me. When he called, he apologized for my frustration and annoyance, and he said that a conversation like this is pretty much equal to an office visit (he did spend 16 mins on the phone discussing everything with me so it took about as long as an office visit) so he wanted to wait to call me until he knew we would both be available to talk for as long as needed. And he said in the future, if I can't get ahold of him immediately, I am to call his nurse directly and ask her to page him and he'll (supposedly) then call me right back. We'll see if that happens when I put that to the test!

So anyway, we discussed the pH impedance test results and what to do from here. He mentioned that surgery is one option, but I said I would want to do another upper endoscopy before I would even consider surgery. He agreed to that so his office is scheduling an upper endoscopy for me. I'm quite happy with that - my last upper endoscopy was over 2 years ago, and it took place months before my GERD symptoms started, so of course it found nothing then, but I suspect now it might find damage to either my esophagus and/or the esophageal sphincter, and maybe my stomach too (I've had a few more tinges of gastritis pain over the past few days, not nearly as terrible as it was the other week but it's letting me know it's still there). GI also said he doesn't feel like I'm going to blow through all the reflux meds (I disagree) but for now, he's doubling my dose of Nexium to get me some more relief, so I'll take one 40 mg pill in the morning and another at night (right now I take one 40 mg Nexium in the morning and one 150 mg Zantac at night). Sooo, we'll see what happens, I'm very curious as to what the upper endoscopy will find. If I were a gambling woman, I would bet big bucks that I've got a hiatal hernia. Sometimes stomach contents just pour up my throat if I bend over forwards, and that is apparently a hallmark symptom of hiatal hernia.

Anyway, that's my update! More meds and another test. Oh, and my GI mentioned I could make "diet and lifestyle changes" to help my GERD get better. I was like, what? I already avoid trigger foods as best I can (I've even been avoiding chocolate lately which has been really difficult!), I eat as healthily as my IBD allows, I exercise a lot, I avoid caffeine and get enough sleep and avoid stress and all that because it helps my IBD - what else can I possibly do that will accommodate both the GERD and IBD??? Seriously? I just don't get it. For the most part, besides that and the long wait for him to call, it was a good conversation though. I'm happy to get the upper endoscopy and I'll go with more meds for now until I find out what the endoscopy says. If GI really feels like lifestyle/diet changes are necessary then I'll ask to see a dietician/nutritionist (which one is better, I always forget?) and see what they have to say. But yeah, I'm rambling again. So that's me.

How's everybody else? I got my flu shot today so my arm is a bit sore, but otherwise I'm pretty well. I hope everybody else is doing okay too.
 
Hey Cat-a-tonic,

My aunt had surgery for her really bad gerd. It was called fundalopcation( I might have spelled that wrong). Is this the surgery your GI is talking about? I know my aunt said it has really helped her. She does not even need to take any more meds(PPI's). She said once in a while she will need tums or something like that, but she is pretty good for the most part.

Obviously wtih IBD you are already on a mild diet. I went through all the gerd tests as well awhile back. I was having horrid burning in my throat and they could not figure out why. I even had the Bravo acid test done and that came back normal so my issue was not gerd. But I do remember my aunt telling me that diet did not help her either. She had the gerd no matter what she eat. She did avoid spicy things though as it did seem to make it worse. In any event, I hope everything goes well with your scope and you get some help and relief...
 
Hi guys, just wanted to drop in and say hello!

I've been tortured with abdominal pain and diarrhoea for years amongst many other things, which has been worsening continually. Had a great response to prednisolone and most recently a high faecal calprotectin test so can at least now conclude it's inflammatory. I also have another autoimmune disease called sjogren's syndrome which is inflammatory in nature. My situation as it stands is my rheumatologist and gastroenterologist fighting it out - the gastro thinks it's a rheumatology issue (sjogren's) the rheumatologist thinks it's a gastro issue (IBD). I tried to get down to 10mg pred last week and ended up so, so, so sick. I was sobbing and crying on the toilet the pain was so bad and freaking my dog out who was very sympathetic and wanted to give me lots of hugs!!! So they bumped the steroids up 10mg and I'm doing okay, not fantastic as I was on higher does. They just need to decide whether they are going to try and medicate me for IBD or sjogren's, even though my rheumatologist says diarrhoea and abdominal pain is unheard of for sjogren's!!!!

My gastro has the imagination of a cardboard box and if something isn't textbook he can't understand it. It's frustrating. I wish I could switch but in the NHS it's not easy.

My biggest thing at the moment is accepting that I now know this is physical. For years I was told it was psychological and even when I was admitted to hospital last year requiring NG feeding and being told I would die if it continued, they still ended up saying it was psychological because they couldn't figure it out! I then consulted a psychologist at great expense who said it's NOT psychological and wrote to my doctors but I still feel like they think I'm crazy. It puts me off reporting new symptoms or asking for help in case they think I'm just being paranoid/hypochondriac/nuts. Does anyone else feel like this/had to go through this?

It has been a massive adjustment to realise there is actually inflammation in my bowel and it's not anxiety/stress as has always been suggested.

This forum is actually amazing, sometimes when I'm feeling bad I come on here and I realise there are people out there going through the same things and it's just comforting when no one 'in real life' can really understand.
 
HannahN said:
Yes; no injury. It started a couple months ago and seems to be getting worse. The purple is just fingernail polish that I couldn't get out of the grooves (and it looks TERRIBLE painted lol)
Click to expand...

Hello Hannah,
It is possible to have a fungus infection of the nails and nailbed. It could be important for you to get it checked and treated soon by your family doctor who will hopefully refer you to a dermatologist.
Hugs and best wishes
Trysha
 
Hi Isgs, I replied on your thread but it is really easy to change the Dr you see on the NHS. I have done it before no problems. Please don't put up with sub-standard care it's not on!

Feel free to PM me :)
 
StarGirrrrl said:
Hi Isgs, I replied on your thread but it is really easy to change the Dr you see on the NHS. I have done it before no problems. Please don't put up with sub-standard care it's not on!

Feel free to PM me :)
Click to expand...

Thanks! I am going to see what his response is to my rheumatologist suggesting IBD and this high test. If he fobs me off this time I am definitely switching. I have been hesitant, we wanted to switch a number of years ago and were told by the GP he was very well respected in his field so I was kind of put off. But I am now realising being well respected does not necessarily mean good outcomes for patients... This is the guy who in the midst of losing 4 stone asked me if I was just losing it for my wedding!!! My rheumatologist has been unimpressed with his attitude also. It's what he does now in response to all this that will be important!
 
lsgs, thanks for the info about your aunt's surgery. I want to avoid surgery until/unless I exhaust all my other options, but that's good to know that it helped her a lot. I'll do some googling on that to learn more about it. Big hugs to you, I hope you can get some real answers soon. How horrible that the doctors made you feel like this was all in your head - it's NOT, it's real, and we're all here for you! I've been made to feel like this might be all in my head at times too, but I know it's not. Some people have no imagination, that includes doctors, and if there's not an immediate answer then they feel like they have to explain it away somehow. Unfortunate and harmful to people like us who are suffering. Big hugs to you, we all understand here some of the things you're going through!

I got my upper endoscopy scheduled - Nov 16th. I already have a GI appointment scheduled for the 15th, and it seems silly to see my GI a day before he scopes me, so I called his office to see if I could get my appointment pushed back slightly. Nope, their next available opening is in late January! So I guess I'm keeping the appointment on the 15th and will pester him with lots of picky little questions about the scope & my GERD, etc. He had asked me to take a double dose of Nexium, but I want the upper endoscopy to see things as bad as they are without any healing, so I won't be taking double Nexium until at least after my scope. GI thinks everything will look normal on the scope but I disagree. I often wake up with a sore throat and it's not due to allergies or a cold - it's from me refluxing in my sleep. (I often sleep on my left side, and more often than not my throat is sore on the left side only, as if acid were pooling in my throat while I sleep - last night I tossed and turned a lot, and my throat is sore uniformly today). And, I've noticed that lately I don't sing along to the radio in my car anymore. I'm a terrible singer, but I used to sing in my car anyway when nobody else was there, it was a good bit of stress relief on my way home from work. Nowadays I don't really do that so much, and I think it's because the reflux is affecting my throat to the point that it's not very comfortable anymore to sing aloud. So, the reflux seems to be affecting my esophagus for sure. I hope the scope picks up on that and that my GI can offer me more options for relief and healing as I'm not super keen on the whole "take twice as much medicine" thing. I'm going to ask my GI at my appointment if he can take more biopsies during this scope too, just to make extra double sure that I don't have celiac just so I can remind my mother that I still don't have celiac (long story for those who haven't heard it!).

So yeah, that's me. Back to back appointment and scope in a few weeks. Fortunately no prep though. My scope is at 11 AM and my only instructions are nil by mouth from the time I wake up. I plan to take the whole day off work so I hope to sleep in. I can go without food for a bit but I am miserable going without water for too long so I'm going to guzzle liquids the day before to sort of pre-hydrate. :p I plan to eat some trigger foods the day before too to see if I can piss off my GERD and maybe get some gastritis going again - the angrier my stomach and esophagus are, the better result I'll get, right? And it'll be a lot more fun trying to piss off my GERD when I don't have an NG tube in. ;) Now that was miserable - this test should hopefully be a cakewalk compared to that!
 
Hello,
I guess i am still undiagnosed. When i was 16 i always had bad cramps and stomach pains but my mom is very old fashioned and never took me to the doctor. Then when i became an adult and was working i was constantly taking days off of work to go to the ER and they did lots of tests always saying that it seemed like there was something wrong but they couldn't figure it out without doing some more tests (when they said that i had already been in the ER for 8 hours and wanted to go home and sleep). I got married at 21 and had 2 children and had complications with the pregnancies but had 2 healthy babies (i have had 7 miscarriages and 1 still born), i am done having children now. July 2012 i went into the ER cause of a flare up and after a few tests the doctor came and told me that i have Crohns disease and need to go see a GI doctor. I have not been able to since i have no health insurance. I have medicaid for the kids but my husband and i do not have any health care.

Jennifer
 
Hi Jennifer, welcome to the club and the forum. Oh my goodness, 7 miscarriages and a stillborn, I can't even imagine how awful that must have been. Big hugs to you. I'm glad to hear that you do have two healthy children. As for your sort-of-diagnosis, how exactly did the ER doc diagnose you, what tests did they run?

So you're in limbo while waiting to see a doctor? Are there any free clinics in your area that you can go to? Does your state offer any type of state-paid insurance plan? Poor thing, you shouldn't have to suffer just because you don't have insurance. How old are you now? If you're under 26, you can go back on to your parents' insurance (yes, even if you are married/on your own). Just a few thoughts for you, I hope you can get to see a GI soon and get some appropriate (and affordable) care so that you can get some relief already. Hang in there!
 
Hi everybody.. sorry its been a while! Its been very quiet on here!

Just a quick update really.. my rheumy called me on monday and said that i dont have all the signs of SAPHO syndrome.. but given what they've found.. he he feels it would be a sensible diagnosis!
Im going in today for some steroid injections into my knees. ouch!

Im just on my mobile at the moment.. but i promise to catch up properly this afternoon!
Big hugs everybody xxx
 
Hi Bozzy, glad to hear from you. Wow, another diagnosis for you! What does this mean in terms of treatment? Are there meds that can treat both SAPHO and your other condition (I'm blanking on the name)? How'd the knee injections go? When I got diagnosed with arthritis in my hip, they were mulling over giving me a steroid injection, but decided I wasn't bad enough to need an injection. So I narrowly avoided that but it doesn't sound pleasant. I hope all went well and that you're resting comfortably now.

As for me, I'm doing okay. Work is still busy busy. Health has been fairly normal (for me) anyway. I'm kind of glad Halloween is over. It's my favorite holiday but it's stressful and a bit rough on my body. I walked around downtown for hours in the cold in my costume last weekend, and I paid for it in the form of awful joint pains the next day! Fortunately that didn't last long and I feel mostly better now. I'm taking a few days off of work next week and I'll probably make my joints hurt all over again - Monday, there's going to be a huge rally in my city for Obama, and I think I am going to go. Obama will be there to speak and Bruce Springsteen is playing a free concert beforehand. So I'll go stand in the cold for hours at the rally - and the day after, voting day (Tuesday) is my birthday, so I'll probably be in pain on my birthday. :p Oh well, it will be worth it to see Springsteen, I have never seen him in concert. And I've never seen any US president so that will be cool too. But I know I'll pay for it, my hip is aching more just thinking about it. Oh well, can't let my body dictate everything, right? I get to have fun once in a while too, even if I pay for it later!

I hope everyone else is okay? Big hugs to all, have a nice relaxing happy-tummy weekend.
 
I hate steroid injections, first one cured a 2 year ankle issue so no complaints, and second for shoulder did nothing.
Weirdly both times the pain spiked up for exactly 24 hours.

Cat, that would be cool if you went!
 

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