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I know what you mean, I have anarexia and I weigh 170. When my night time meds. kick in I can eat. But just 1 month ago I weighed 180. But, this morning I had breakfast for the first time in ages. So I can really relate. Kinsey :ghug:
 
Cassy said:
Sparkle

I have not had the other docs say anything about ulcers in my esophagus but an excellent question. I will ask when I'm at my appt next.

On a side note, love your tongue in cheek comment of "drs said no crohns as your chubby". I've been sick for 5 years and I am betting also, this is why jobody questioned crohns with me.

Increasingly frustrated with the more I learn with this disease.

Cassy
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Yes it's absurd and finding a decent doctor is not easy. The choking, bleeding coughing.....what else could it be? Definitely make him find out!! Good luck - keep us in the loop.
 
How's everyone doing today? Cassy, feeling any better? Stacey, haven't heard from you in awhile - are you doing okay? Lsgs, have you gotten the MRE scheduled yet? Anyone else have upcoming tests or appointments?

A quick update on me - my GI is moving to a new building and I have an appointment with him late next month. The new building is still being built, but I drove past it yesterday and the sign outside says "Future home of our new Digestive Health Center". Maybe it's just me but I think that's kind of cool that it's just a building for GI patients and nobody else. At my GI's old clinic, the GI people were stuck in the basement - now we get the whole building? That's cool. I know it's superficial and won't get me closer to a diagnosis or anything, but it's nice to see digestive health get a bit of a promotion in my city anyway - no more feeling like a 2nd class citizen stuck in the basement anyway. I hope they build nice bathrooms in the new building! :)
 
It's strange, you have issues absorbing minerals and yet the fat calories are all sucked up nicely....haha. My doctor said that the body was working desperately to grab up all the calories for nourishment and hold on to it's fat cells.

It's still doing that even after resection. :) OK body, you can LET GO NOW!
 
Hi cat!

I'm feeling better today, yesterday and the weekend were rough and right now I'm having visual issues (my last few ophthalmologist visits showed high pressures in eyes) and cramping in feet and legs. I could barely get out of bed yesterday. I have no clue other than to think that the cat with E put me in some sort of flare. Anyway, today I'm better and I thank you for asking about me.

Wow! An entire building is quite a move up. Hopefully it opens doors for that practice and for you. Is this a doctor you have seen for a long time?

Sparkle, I t is amazing how the body compensates. In the past, I've noticed if I do not eat very much, I can actually gain weight! Your body does go into starvation mode and grasps every calorie it can hold on to.

Yep, our bodies are flipping miracles at work (saying sarcastically). Lol!

Hope everyone is having an easy day

Cassy
 
Cassy, have you let your GI know about the eye issues? Eye issues such as iritis and uveitis can often happen in conjunction with Crohn's, so it's another piece to the puzzle. The foot cramps could indicate low potassium. I sometimes get foot cramps when I sweat, and when I asked about it in another thread, the consensus seemed to be low potassium. I googled and it said that potassium can drop too low just from sweating so that seems to be my issue. Fortunately it usually stops for me pretty quickly, but I feel for you because I know it's not fun. If you're able to eat things like bananas or sweet potatoes, those are fairly high in potassium and might help ease the cramping.

Yes, I'll be seeing the same GI, just in a few fancy clinic made just for us digestive-ly challenged people - I'm hoping new technologies and new treatments might be available in the new clinic (fecal transplants maybe?). I've seen the same GI since I first became ill (so over 3 years now). He's not the best but not the worst either. He says I'm "a tricky case" but he's willing to treat me as though it is IBD. Part of his problem is that he's very "by the book" and I don't fit all the textbook symptoms, so he's just not totally convinced it is IBD, but he doesn't argue with the fact that I respond well to the IBD meds I've tried. So I'm sticking with him for now - if he ever decides to stop prescribing my medications then I will seek out a new GI. I've actually done some research already and know just who I would switch to in the event that my GI flakes out on me, I feel like it's good to have a plan B. ;) And that plan B GI will also be at the new clinic if it comes down to that.

I hope the CT contrast didn't put you into a flare. :( It went right through me and I think you said it went right through you too? I've been reading threads on the forum lately that are suggesting maybe when you get really cleaned out by something like that, it's possible that it's flushing out a lot of the good bacteria too. If you can handle probiotics, you might want to try taking some to try to restore your good bacteria. Personally I cannot handle probiotics, they just make me worse, but my understanding is that I'm in the minority and that most people respond positively to probiotics. So I'd say give them a try, it probably won't hurt and could help.

Edited to add: You're having a colonoscopy on Monday, right? If so then maybe wait till after then to try probiotics, as you'll just get cleaned out again from the c-scope prep anyway. The good news is that if you're in a flare when you have the scope, the chances of it finding something are better than if you have a scope when you're feeling well. So yes, it sucks that you're feeling crappy, but there is a silver lining and hopefully it pays off in the form of a diagnosis. Good luck!
 
Oh MsJason, I hear you on the salad thing! I miss salads and every so often I'll try to have just a small one. But it never goes well and I end up spending quality time with my toilet too. Pretty much the only form of veggies I can tolerate these days are veggies I put in my juicer. It's not the same as having a salad, but it contains all the vitamins and none of the fiber and is really easy on my tummy.
 
I went to my gp on Monday. Ever since my first attack my thyroid has been out of whack. I had to have it removed about 10 years ago and I haven't had to adjust my dosage hardly at all until my world as I knew it changed. It will be two years in may and I finally have my thyroid in range. All of the other blood work was pretty good except my sed rate. Which that doesn't surprise me with the way my ankle and elbow are feeling and the flare I had last week. Alls been well this week, I have gotten a lot done and have felt really good. I go see the gi doc on Monday. I haven't been to see him since he referred me to Vandy. Which it has been over a year. I gave up on all the testing.:runaway:
 
Hi Cat

Sorry I have not been on for a while we had my father in laws funeral yesterday and its been a rough time for us all

I have been rough as well must be the stress and grief

I am waiting on the Pill Cam appointment to come through so hopefully it wont take too long

but in the meantime I am just hoping that this sickness and this bloody horrible cold pisses off soon

I hope everyone is ok and has a relaxing enjoyable Easter

Much Love
xxxx
s
 
MsJason, with your ankle and elbow pain, have you been checked for arthritis? I have arthritis in my hip (which is probably related to my bowel issues), and I'm now being referred to a specialist because I suspect it's spread and/or gotten worse. If you catch it early when it's still mild, you may be able to treat it with just things like physical therapy and sports creams. I treated my arthritis that way for a couple of years, but it started acting up a lot again over the winter. I hope you don't have arthritis, but sadly it's pretty common for IBD and arthritis to happen together, so get it looked at if you haven't already.

Stacey, big hugs hun. Stress can definitely make the guts unhappy, and grief can do all sorts of crazy things to the body. When I was 19, a friend of mine died, and the stress/grief made me miss my period for over 2 weeks. My body just freaked out and I didn't menstruate for awhile. I don't know why my grief manifested physically in that way, but my roundabout point is that grief can do surprising and strange things that manifest physically, and I would think it could certainly affect your bowels. I hope you can have that pill cam soon, you really need answers and relief. Hang in there! I hope you have a good Easter too. Sending lots of hugs for you from across the pond.
 
Hi everyone
Sorry I havnt been on much. Honestly I can't face this forum. It used to give me such peace of mind knowing that I'm not alone but I've got to that angry stage were I want to be in denial and pretend this isn't happening to me. I think it's my minds way of coping as I think if I realised how much of my life has been wasted due to incompetent doctors I would go crazy. I don't know if anyone can relate to this stage?
Right now I've been taken off all pain meds and sleeping tablets. So I'm in double agony and can't sleep a wink. Over the counter medications don't work at all for the pain and I honestly don't know how I'm going to cope. I take it one hour at a time just and I do my best to distract myself but sometimes that doesn't always work. I also try to pretend I'm not sick but then my body reminds me that I am.
I had a colposcopy on Monday it was awful and just waiting biopsy results for it.
I just want an answer I need to know what is killing me.
 
I say it in the most respectful and kind way, but I don't agree that stress contributes to this. First my condition started at 13 and I had NO STRESS. And I've been thinking recently about one of the worst attacks I've ever had. My husband and I went away for the weekend to stay at a nice hotel, have dinner, and take a two-hour cruise on the St. Lawrence River. I got sick right after eating lunch. THANK GOD I did not get on that boat as I had planned about 2 hours after lunch. I then lay on the bathroom floor to sick to get up the rest of the weekend. And I went to the local hospital due to rectal bleeding. Now tell me, where's the stress in getting away with your husband to one of your favorite places for the weekend?
 
Hi Cat and everyone, I think this might be my new home :smile:
I've just posted my intro so I won't bore you all with spilling it all again but I feel a bit in no man's land right now so hope you'll help keep me afloat :ghug:
 
Gabi, I share a similar anger at my doctors. You're not alone. So much of my life has been wasted when the solution has been so simple all along! Also just found out my GI hadn't told me I was positive for an antibody against my liver that normally means you have primary biliary cirrhosis!! Considering getting my records to find out what else he hasn't told me.

misunderstood - I was told my condition was stress related all my life and I have never ever been able to find a correlation either! At times of extreme stress my stomach has been calm as anything.

nindancer - welcome :D this group is super supportive and they certainly have been keeping me afloat through all my moans over the past few months!!

Well I got ambitious last night and organised to go out for dinner with a few friends I hadn't seen in months. After the starter, I started getting those awful feverish hot flashes and the abdominal pain was insane. Felt like being stabbed. This of course culminated in me running to the bathroom several times in the middle of dinner. Horrible experience! :( I don't really talk to my friends about it at all and one of my friends was being so tactful in pointing out all my prednisolone induced side effects :( Horrible night!!!
 
Gabi, why did they take you off all your meds?? Was it just for the colonoscopy, and are they putting you back on your meds when you get the biopsy results? Goodness, you poor thing, I hope the colonoscopy or biopsies show something that gets you some firm answers so you can get some real and lasting relief. Sending you a big hug!

Misunderstood, I don't think stress by itself causes illnesses like this. However, I have noticed that when I'm stressed, my symptoms can be a bit (or even a lot) worse. And when I first became ill, it was during a very stressful time of my life - I'm not sure if that's just a coincidence or not. There was other stuff going on at that time too (I was taking a lot of NSAIDs, etc) so I think it was a combination of environmental, genetic, and dietary things that initially triggered me to become ill.

Nindancer, welcome to the forum and the club. I'm sorry you had to join us, but you are not alone. I hope you can get some answers soon so that you can "graduate" from our little club and get some good relief.

lsgs, I concur that it sounds like a good idea to get your records. I don't know how things work there, is there any kind of an online system your doctors have? My doctors put all my test results, appointment notes, etc into an online system, so all I have to do is log in and I can see my results. There's even a section for trends over time, I can look at my weight and blood pressure trends over the years. It's pretty cool! I'm rambling again. :p Your dinner sounds awful, and what kind of a friend points out all your side effects?? Like they thought you didn't know? I hope that friend is really embarrassed at how rude they were to you.
 
Feeling really low... ive been out a lot lately.. partying with friends. I have a laugh.. but then I crash.. fatigued like it was hard to keep up the act...

Just hate going down this road again.. but I cant help but watch it happen.. and dont know how to stop it.

My sister in law is pregnant (after 3yrs of trying) and its what everyone (including myself) wanted to happen. But now I just feel jealous.. she is glowing and full of happiness
I hated my pregnancy. . I was so ill and had antenatal depression.. and I always feel like I was cheated out of something I should have enjoyed. I also got married whilst pregnant.. so felt not been able to enjoy that was taken from me too

My S.I.L is going shopping with her mum and being all excited. . Which I didnt have with my mum.
I also felt because I didnt enjoy my pregnancy.. I couldn't talk about that because she was struggling to get pregnant.

I hate the fact I feel jealous.. I hate the fact I feel so low. I have no reason to feel like this at all.
 
Helps me to read the Bible and also think about my poor sister who has been thru hell for 16yrs. having huge ulcers that were infected most of the time on her inner feet. She was in more pain than you or I could imagine. She just had surgery today so she could walk on one foot. She is crippled form the way she had to walk on tiptoes all these yrs. They have to reshape her feet and they removed a bone. She couldn't have it sutured up because her skin is too tight from all her skin has been through. She will not be allowed to even attempt to walk for 3 weeks. She will get plastic surgery Monday to close the wound. No, we think we have it bad till we see others and then I just have to count my blessings.I know life can be hard and it seems like some people always get the good lot in life. But alot get it worse too. So I choose to thank God and deal with the pain even though I hate it too!
 
Bozzy, big hugs hun. I know you've been partying and that's got to be rough on your body. But at the same time, you've got to have fun, just try to find a good balance. And hun, you listed all these reasons you have to be jealous, then you said you have no reason to be jealous! I haven't ever been pregnant so I can only speculate, but having a rough pregnancy sounds like pure hell - especially when you've got other health issues on top of everything. To see someone else going through it like it's a breeze, I'm sure that is particularly annoying. But you got through it and you have a beautiful daughter. There are no guarantees that your sis-in-law will continue to have a breezy pregnancy, and she may feel like crap at times but maybe is hiding some of that from you. For what it's worth, my best friend from childhood had a super easy breezy first pregnancy. She told me she never vomited once during the entire 9 months! I've never been pregnant but admittedly it's hard not to be jealous of someone who's having such a good time when I can't totally get my stomach under control even without a tiny human growing in me, so I know where you're coming from. Well, my friend is having a much rougher 2nd pregnancy and had a miscarriage and had a tough time conceiving baby #2. So even someone who has an easy time can suddenly have a not so easy time while pregnant. I'm rambling on again, but try not to be jealous - it could be much rougher than she's letting on, and even if it's not, if she tries for #2 it could be a totally different story like with my friend. Just try to think of what great friends your daughter and her new cousin are going to be in a few years! :) And of course keep venting to us here, we're always around to listen. Big hugs!
 
:hug:Great advice cat! I maybe didn't exactly say what people want to hear, but it is true. My sister was always the tall, thin pretty one and her pregnancy looked more like she had a basketball under her shirt. She wore MY jeans till the last day! Un zipped, but still. She was young. She never gained an extra pound and I was always jealous of her back then even though we were best friends. But after she had my nephew, she developed a bloodclot in her hip and they didn't know what was wrong when her fever was so high. They actually were giving her last rights and my Mom had her transferred to Magee Women's hospital in Oakland where they found the bloodclot in 15 minutes. To think she almost died. That could be the reason she got ulcers on her feet. You have a much higher risk of ulcers if you've had a bloodclot in your legs?? Why, I don't know. Like I said she has suffered for 16 yrs. with these ulcers and they were always infected and stunk like death. No more jealousy uhuh!!!! Poor girl. My heart breaks for her everyday. She is so amazing though and hardly ever complains. Even in the worst of times. I admire her so much. She is kind of a hero to me now....:heart::hang::Karl:
 
Really sorry to hear you're feeling so low bozzy :( Don't feel bad for being out so much, try to focus on all the fun you've had! You've been given some great advice from Cat as usual :)

Cat I feel like the docs here are quite sketchy about medical records, there's no accessibility at all. You have to apply in writing and pay £50 for each set of records, which given I've been treated at various hospitals could be costly. I'm thinking I would just go after my GI's notes though. There is so much he hasn't told me that I found out through my insurance claim notes.

Also, with the whole liver thing, I've been doing a bit of reading about primary biliary cirrhosis. Positive ANA, AMA is considered diagnostic and can also cause splenomegaly and high cholesterol - both of which I have. Why has this not even been mentioned to me before? My trust in doctors is at an all time low! The scary thing is that they tell me more than most because of my job, I can't imagine how they must leave you in the dark if you're not in healthcare.

The trouble is in the UK I feel like if you try to find out too much you are considered a hypochondriac... For example, after my calprotectin test came back really high I spoke to my GP about it. Saw my records next time and he had written I was very anxious in the notes, even though there was not a hint of anxiety!!
 
Thanks guys..

Crossroads.. just to point out that ive suffered depression and anxiety on a number of occasions. Its the fact I know im going down that road again that scares me. Its particularly hard when I have no reason to feel this way. Just thoughts.. unhelpful thoughts that crop up in my head that I cant prevent.
This is why I gave up being a forum monitor.. because im not in a good place in my head.
I know that people have it worse off!! And thats what I cant stand! I hate I feel this way when I have so much to be thankful for.

Depression has no reason or rhyme and is rarely logical.
And im not one for the bible im afraid. But thanks for pointing out my ungratefulness. Something I already know I am..

I was venting and acknowledging that I shouldn't feel this way. But I do.
 
:ghug:bozzylozzy I don't want to preach, just help. Can we be friends? I feel as though i got off on the wrong foot with you and I am sorry. I will definately keep you in my thoughts and prayers.I am slowly trying to wean off an antidepressant I was on for Fibromyalgia and depression. It made me sweat so bad. But I am concerned with you now. Are you on any? They do really help if you find the right one.I hope you have a blessed Easter and know others care and are thinking about you!:ghug:I will hope that you have a great day today....:ghug:
 
Bozzy, I've been down the depression road too, I know it can feel downright illogical. If I may say so, getting regular exercise has helped me feel far more chipper than anything else, including anti-depressants. I know, I know, I probably overdo it on the exercise thing, and I don't want to sound like a broken record, but since I've been working out every day, I have not felt depressed once. I used to get really dark thoughts and would sometimes think about ending my life - I haven't had one single thought along those lines since I decided to do some form of exercise every day. It's the #1 thing that has helped me more than anything else. And I definitely feel better after a workout session than I would after a night out drinking, just saying. ;)

Okay, lecture over. Someone else said this on the forum awhile back (it might have been Dusty?) - they said that even though others may have it far worse than you do, that doesn't mean your feelings & problems aren't legitimate. You have every right to feel sad, bad, depressed, etc. You also have to try to work through that stuff though, it's not good to wallow in bad feelings for too long without trying to get past it. I hope you can find a way to feel excited for your sis-in-law and to feel happier in general. Big hugs!
 
Bozzylozzy

I don't like it when I feel jealous or feel so low (or should I say crushed).

This year is just a little harder because I had a colon resection in Nov. and it seems like not much changed.

Anyway, I feel for each and every person who gets sick of this CHRONIC condition.
 
Cat - iv been doing fitness dvd with my friend.. and it has been going well. Building up my strength and stamina. But my last session was hard to do.. just felt so dizzy, breathless and tired.
I think its the tiredness that takes a hold of me and makes me feel even more down.

Also.. since I have been on the sulfasalazine.. my BMs have been much better.
I am excited about my SIL having a baby.. I cried with happiness when she told me! (Its honestly everything I wanted to happen) I just wanted to voice how I feel.. because I cant do it anywhere else. And I certainly wouldnt wish the pregnancy I had on anyone!
 
Hi cat!

I saw the word juicer and my eyes perked up! My hubs is thinking about buying one and I was wondering if this would be kind to the tummy? How do you do in it and what types of veges do you juice? One more ? Is what kind of juicer did u purchase? There's so many kinds out there.

I did call my ophthalmologist about the vision stuff and I'm seeing him in a few weeks.

I will look into the probiotic after my lovely colonoscopy tomorrow. This prep sucks. The drink is nauseating, blah.

Wishing you and everyone a beautiful pain free day.

Cassy

Cat-a-Tonic said:
Oh MsJason, I hear you on the salad thing! I miss salads and every so often I'll try to have just a small one. But it never goes well and I end up spending quality time with my toilet too. Pretty much the only form of veggies I can tolerate these days are veggies I put in my juicer. It's not the same as having a salad, but it contains all the vitamins and none of the fiber and is really easy on my tummy.
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Bozzy

I'm new here, and I just wanted to say your feelings are normal, and of all places this is a soft place to fall. EVery ones been so nice to me.

My first preg was awesome and my second was horrid. You just never know do you? On top of everything, you having to deal with a chronic illness alone is so depressing, adding a difficult pregnancy didn't help :-(.

I have been so extremely depressed over the last 4 years from being so sick that I've had to turn to antidepressants and therapy off and on. It can be so hard, but I think there is a lot of support here.

Hang in there and vent away. It's so much better fir you to get it out, rather than bottle it up. Take care and be kind to yourself.

Cassy
 
This is sort of gross, but here it goes.

I'm doing this Colon prep for my colonoscopy tomorrow and noticing these blobs of white puss in the watery stool. The stools pretty clear except for this. Has anyone had this experience? I've done a few preps in the past, but this is really the wierdest thing I've seen.

Cassy
 
Cassy said:
I'm feeling so ill today. I woke up this morning and I felt like I was choking. I ran to the bathroom and started spitting out blood. I've had it happen before, while awake, but never woke choking like this. Usually I see sores on my gums, causing bleeding, but today, I couldn't see where it was coming from. On top of this, I have so much pain and nausea.

Does anyone have problems with gum bleeding?

I really hate this!
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Hi Cassy - a couple of weeks ago I had the spitting blood thing. I did have a mouthful of ulcers and I thought it may be that but when I went and got checked out it turned out I had Laryngitis. Although my glands were a bit tender, I hadn't had a sore throat, but during this flare up of gut troubles, I did have a lot of acid reflux also which apparently can sometimes cause Laryngitis.
To treat the reflux, I'd only just begun a prescription of Omeprazole which has neutralised the acidity a bit. I'm still getting quite a few mouth ulcers though at the moment , not all of which are sore but I do get the blood taste in my mouth quite frequently, though the actual spitting of blood has thankfully seemed to have stopped.
Very Best Wishes and Good luck with your Colonoscopy - I've got mine on Thursday.
 
Thankyou cassy.. I really hope any future pregnancies for me are a lot easier. I lost 2 stone in my 1st pregnancy :(

In terms of the weird pus stuff .. I seem to remember a similar thing when I did prep for a scope.
But if you are concerned.. maybe mention it to the doctor before your scope? Is it today?
 
Cassy, I *love* my juicer! I had read some of the juicing threads on the forum, but I was leary because store-bought juice is really rough on my gut. I saw a used juicer at a garage sale and thought, what the heck, it's only $10 so if it's rough on me too then I'm not throwing away very much money. I bought that used juicer and used it until it broke recently. Fresh, homemade juice is always easy on me, it's like the complete opposite of store-bought juice. Even on a bad day, I can make myself a glass of juice and it tastes wonderful - it's like drinking health! - and it's always easy on me. Juicing removes the fiber but you still get all the nutrients, so it's really good for you if you can handle it.

So yeah, my old juicer broke and I just bought a new one a few weeks ago. I got this one:
http://www.amazon.com/gp/product/B005E0A1MI/ref=oh_details_o01_s00_i00?ie=UTF8&psc=1
Although right now Amazon's price for it is $139 and I know I paid $99 for it, so keep an eye out as the price seems to fluctuate. We've used it a bunch already (my hubby loves it too) and it's been great so far, no issues and it seems really sturdy so hopefully it'll last a long time. I juice anything and everything - carrots, cucumber, spinach, kale, oranges, apples, pears, kiwi, bell peppers, pretty much any kind of fruit or veggie. I haven't had any issue with anything so far that I've juiced. I had a glass of what I call "green+orange juice" for breakfast this morning (spinach, kale, and oranges) and it was so good. The kale is a bit bitter but the sweetness of the oranges masks that bitterness nicely. I'm sure I'm rambling again, but I hope that answered some of your questions, and feel free to ask any other juicing questions you might have. I recommend you check out the juicing section of the forum too - it's here:
http://www.crohnsforum.com/forumdisplay.php?f=284

If you're not sure how juicing would affect you, I recommend trying it out first before investing in a juicer - look at garage sales, craigslist, etc to find a used one, or borrow one from a friend if you know anybody with one. Like I said, I only spent $10 on my first juicer as I was skeptical and unsure as to how juice would affect me. Fortunately it was all good for me, but we're all a little different, and I would hate for you to spent a bunch of money and not have a good experience. Good luck and happy juicing! :)
 
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There's a remanufactured one on Amazon right now for $98.00 and you can get a two yr warrenty for a little extra. I wish I had the cash to get one. I would love to try one. I hear great things!
 
Thanks for the info in juicing Cat! U think I will look around for a slightly used one or that one on amazon Teresa. In really excited to give it a try.

I had my endo and colonoscopy yesterday. My dr uses an anesthesiologist and so I am still feeling sort if out of it. I'm still crampy and gassy. It feels like I was punched from the inside out.

I vaguely remember the doctor saying, not crohns, systemic related like ibs. I just cried. Not because I want crohns, or any disease, but if he can't figure out why I'm in so much pain, that means it won't go away. I'm seriously sick of living like this. It's been 4 years!!! I seriously hate my life.

Oh, and of course my CAT with Enterography showed nothing. I recall asking him about the pill can, and he said no. It won't show anything.

I'm just so tired of all this.
 
Im sorry to hear you havent got any answers.. did they take plenty of biopsies?
Because there are other forms of IBD that are microscopic and can only be seen via biopsy.

Are you seeing a rheumatologist as well?
Have they mentioned trying you on medication as a trial to see how your body responds? :hug:
 
Cassy, I concur with Bozzy - hopefully they took a lot of biopsies. Microscopic colitis can ONLY be seen on biopsy, so the scopes would look totally normal but they'd see evidence of inflammation & illness on the biopsies. My GI feels like microscopic colitis is a strong possibility for me as well, because all my scopes have always looked perfect. MC has a "skip pattern", so basically it's patchy and not uniform, so they have to luck into biopsying the right area, otherwise they won't find it. Long story short, if they took biopsies (and they should have) then you may still get some answers out of the scopes.

I also agree with Bozzy's idea about a medication trial - my doctors didn't feel I had any inflammation (because they didn't see any), up until I tried prednisone. I had such a good response to pred that suddenly my GI was taking me more seriously - after all, pred only works on inflammation, and it doesn't work on IBS. Personally speaking, that trial run of prednisone changed my life and was the best medical decision I've made in the course of my illness. Your results may vary of course, but it's worth a shot to ask about if your doc won't order any more tests. A second opinion from another doc is also always an option.
 
Yeah the prednisolone worked great for me too.

Ive been thinking.. after my c-section.. I was crying in pain for days (the surgeon came to see me.. who just said it was my uterus contracting back) although other mothers with c sections.. were up and about the next day!
The surgeon didnt feel my tummy.. nor did they even remove my dressing to look at the stitches.
The day before I was discharged.. the midwife felt my stomach. She said she thought I was constipated.. as could feel it on my right side. (This was in february 2011) then it all started again in the august.. followed by my appendix being taken out in the october. You could physically feel the inflammation yourself!! Then the prednisolone took it all away.. so by the time I had surgery I only had a pin point of pain where my appendix was.

Hmm..
 
Bozzy, that is interesting - and I've read other accounts on the forum of new mothers who suddenly had their first flare shortly after giving birth (something about the hormones throwing everything out of whack and triggering IBD to manifest) so that could have very well been your IBD/mystery gut illness and not your "uterus contracting". What kind of a doctor doesn't even look at the stitches of someone who's complaining of pain though?? Sheesh, I hear so many horror stories of bad doctors on the forum. I'm sorry that your doc basically ignored you - is that when your bowel problems first started, or were they bad before then too?

How are you doing lately, I think you mentioned the sulfasalazine has been working pretty well for your guts? But the fatigue is still bad? Are you eating enough? I know you've been dieting & exercising lately - don't overdo it on curbing calories though. Even in remission, if I cut back too much on calories, my guts get really angry and I get super fatigued. I need to eat a certain amount every day or I really pay for it!
 
Ive had issues with my bowels for as long as I can remember.. mainly diarrhoea (not making it in time to the loo) and dull pain.
But that was the first time I had horrendous pain, after birth. Sharp, hot pain.

The sulfasalazine takes about 3 months to take effect.. and ive only been on it 4wks.
I dont have any urgency.. but bms are still volumous and soft.
But my joints are still achey.. however.. remember my left ribcage started hurting again?? Well that has stopped :)
Guess I just need to wait and see.. good so far!

The diet really is just me cutting out the amount of snacks.. I generally eat out of boredom. But I still eat a lot of the same foods.. I did think it could be contributing to my fatigue. Ill just monitor it and see what happens
 
I'm glad the ribcage pain has stopped, that's something! I didn't realize it takes that long to kick in. Oh, I'm a snacker too, so I'm trying to replace my snacks with healthier ones. Cottage cheese and berries instead of chips or candy, fresh juice from my juicer instead of a donut, etc. I still love chocolate but I'm trying to just have a little bit each day. So far, so good!

As for me - I finally got my referral to rheumatology! The soonest appointment they had is in mid-July though, so they're putting me on the cancellation list and will call me if something sooner opens up. I'm not holding my breath, but it's nice to know that there's a chance I'll get in sooner. And if not, I guess I have a 3 month wait in store. Yippee. I hope the wait is worth it and they can figure out what type of arthritis I have and how to best treat it, what's causing it, etc. I've been fearing lately that the arthritis is spreading to my other hip and also to my lower back, so my goal is to stop the spread if possible. I'm only 33, way too young for this. Physical therapy worked great for 2 years, but lately it's not helping like it used to.
 
Hi everyone, long time no post! I have had a terribly bad cold so I had to take some time away-I prefer to suffer in silence and get on with things when I am sick but let me tell you I moaned and groaned my heart out over this one! Still quite sick but on the mend.

Things going downhill healthwise which isn't good. Both hips are now hurting and I am getting cold fingers and toes. It's still very cold in the UK but I am satisfied that it's being made worse by the cold temperature and not caused by. So not very good, I also appear to be having more memory blanks which is really scary.

Good news is my referrals for Pain and Fatigue management have been done (i'm just waiting on a copy of the letter), saw my GP who was surprisingly nice. He listened to what I had to say and was really concerned when I was going through my symptoms. He is going to go over all my notes and see if he has any suggestions for me. I raised the possibility of a second opinion and he said that would be fine and he would support that, and named the Hospital I had in mind (I never said it) so I must be on the right track. Also no problems with paperwork needed to be paid (reduced rate benefit) if I appeal a "fit for work" benefits decision. Basically you have to send in medical certificates when appealing so you can be paid.

Fatigue management involves alot of travelling so I don't know if I will be able to complete that one, will have to see how it goes. Really looking forward to talking to medical people who believe in ME/CFS and have a good understanding of fatigue though!

I have the "medical" tomorrow and I am dreading it. I will either get the right outcome or will have a year + of stress and financial hardship appealing the decision. It's a nightmare it really is.

But the good news is at last I skype'd earlier with my Dad and my Grandparents. It was amazing to see them all. Netbook is a few years old now (due to be replaced next year) and it worked very well considering! Granddad is hanging in there but you know realistically it won't be long until I get the phone call to say he has passed away.
 
Star, I'm so glad you got to skype with your grandfather. I know that's something you've been wanting to do for awhile and I'm really glad you were able to.

The cold fingers/toes thing makes me wonder if you've maybe got Raynaud's? Although I just googled it and it looks like discoloration of the fingers/toes is more common than coldness. It did say though that Raynaud's often happens concurrently with another auto-immune illness, so if you do have Raynaud's then you could probably safely assume that your main illness is in the AI family. Take a look at this link and see if it sounds like what you've got going on.
http://en.wikipedia.org/wiki/Raynaud's
I get cold hands & feet but I seem to just have poor circulation or something, as my fingers/toes don't get discolored.

You also mentioned achey hips - do your hips hurt worse when it's very cold or snowing/raining out? I'm trying to figure out my hip arthritis situation lately too and my bad hip aches a lot when it's bitterly cold or when it snows. If it's going to snow a lot, then my good hip and my lower back start aching too. Fortunately it's finally attempting to be springtime here and isn't quite as cold, but I'm still having some hip pain. It's frustrating and I feel for you - I'm presuming your rheumy already looked at your hips? Or is this a newer pain that the rheumy hasn't looked into yet?

I wish you lots of luck with the "medical" (like a physical assessment?) and with the financial stuff too. Health woes and money problems seem to go hand in hand, don't they? I just finally paid off hubby's kidney stone surgery from nearly 2 years ago, made the final installment payment last week. And every time I get close to paying off one of my medical bills, I just seem to rack up a new one (or two or three). Anyway, I'm rambling again. Good luck with what you have to do today, I hope you get the result you're looking for so that you don't have that stress hanging over your shoulder anymore.
 
Ok friends I need help. In all the bouts that I have had with my gut I have never had poops like I do now. Yesterday was unreal and I thought it was over with last night because I didn't have to go all night. But I have eaten breakfast and here we go again. I went 12 times yesterday. Not real bad pain, but this time it is showing up on my left side as well as my right. This new to me. And when I think I through using the bathroom it doesn't feel like I am. HELP!?!?!?! :ybatty:
 
MsJason, call your doctor and let them know what's going on. My GI always says that new symptoms are not to be ignored, and it sounds like this is new for you, so let your doc know what's going on. It could be anything from a stomach bug to a flare, but new pain shouldn't be ignored. If it gets worse, I'd say go to the ER. If not, try to see your doc ASAP. Good luck and I hope you feel better soon!
 
I'm also an undiagnosed patient :( It's been going on since I was young, the doctors told my mam I was allergic to diary (I still cant eat/drink milk cream yogurt) I always remember having to rush to the toilet and I was never able to have loads of wheat. In late 2009/10 I had a really bad flare up, I couldn't go to college, get out of bed and when I did manage to make it to college I had to get off the bus at the next stop straight after I got on to run home. After this happened I went to my doctor and they referred me to my local hospital, they took stool samples and did a colonoscopy - they couldn't finish this as it caused too much discomfort to me. These results came back as normal and I was back to the beginning with "IBS", the doctor prescribed numerous tablets and one of them being lopremide (imodium) to this day I am still taking them, I cant leave the house without them and I certainly don't want to be dependent on them for the rest of my life. In 2012 I had an MRI, 2 stool samples and a nuclear medicine injection. The 2 samples and the injection both showed up inflammation in my bowel. Today I got a colonoscopy, and the doctor said my bowel looked alright. I am getting really fed up and dishearten I just want answers!
 
Ibx

I feel for you. I just had my colonoscopy and EGD and when he came out he basically said it looked normal. My followup isn't till 5/13 but i dont hink he will do anything else. I vaguely remembered asking about the pill cam and he said no. I am so sick of this pain.

Then, the next day I followed up with the rheum. And he acted like a different doctor. He told me initially they would get to the bottom of everything, then Tuesday, which was my 3rd appt. there. he tells me that this is all because I'm overweight. I can't stop crying. I honestly don't think this has to do with my weight. I'm 5'7" and wear a size 14. I've never been a small person. I just feel so humiliated by this last appt.

On top of all this, since my colonoscopy I've had horrible lower abdominal pain (left) side. I'm so sick of these doctors.

C
 
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Cassy said:
Ibx

I feel for you. I just had my colonoscopy and EGD and when he came out he basically said it looked normal. My followup isn't till 5/13 but i dont hink he will do anything else. I vaguely remembered asking about the pill cam and he said no. I am so sick of this pain.

Then, the next day I followed up with the rheum. And he acted like a different doctor. He told me initially they would get to the bottom of everything, then Tuesday, which was my 3rd appt. there. he tells me that this is all because I'm overweight. I can't stop crying. I honestly don't think this has to do with my weight. I'm 5'7" and wear a size 14. I've never been a small person. I just feel so humiliated by this last appt.

On top of all this, since my colonoscopy I've had horrible lower abdominal pain (left) side. I'm so sick of these doctors.

C
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Did anyone check for diverticulitis? I had lower left abdominal pain and it got so bad I was holding onto the bed screaming. They did a catscan with contrast and saw a small pocket and they admitted me for five days giving me antibiotics to clear the infection.No food, just clear liquids till I had a bm. I eventually had the polyps removed during a colonoscopy.But it can be so painful Have they even checked for that?
 
Well I am up the creek without a paddle!

A couple weeks back I got sick again and haven't quite recovered, due to tapering steroids.

When I called my GI he told me basically to bugger off because it's my rheumatologists problem.

My rheumatologist had said he would put me on azathioprine/sulfasalazine if we deemed it necessary. So I went to his clinic yesterday told him I was sick fed up of the steroids, their side effects, and the fact they are becoming less effective and low doses don't work. He then said he wouldn't put me on anything else because it's a gastro issue, and the gastroenterologist has to do it. And he is right.

But what to do when your rheum says it's your gastro's responsibility, and your gastro says it's your rheumatologist's responsibility? What do you do? I am so stuck. I called the gastro's secretary and she wasn't very impressed with the situation. I feel bad for pestering the GI but he is not doing his job!! I know he's not going to be happy and that I'm probably one of his most annoying patients but I can't keep getting chucked from pillar to post while getting sicker. I could see the point when they didn't know what was wrong, but now they know and acknowledge there is inflammation in my bowel and that it is immune modulated. There really isn't an excuse other than it's not 'typical' or 'easy'.

Also, they lost my last calprotectin sample (which means they have lost 2 out of 3!) so I have no idea if my inflammation was bad at my sickest at 7mg. AND when I asked about my liver condition the rheumatologist said it was my gastro's responsibility and he hasn't done anything about it because he doesn't know what it is. He also admitted he didn't even know I was AMA positive!

To top it off I met my husband for lunch and was in total agony for a few hours until my dihydrocodeine kicked in and took the edge off and left me able to walk again. Just had to go sit in a cafe and act normal until I could move. I am losing my independence again :( That is the first time since I started on steroids I haven't been able to finish a meal, and I haven't been able to function/walk after. Sad times.

I have had enough of doctors!
 
lsgs said:
Well I am up the creek without a paddle!

A couple weeks back I got sick again and haven't quite recovered, due to tapering steroids.

When I called my GI he told me basically to bugger off because it's my rheumatologists problem.

My rheumatologist had said he would put me on azathioprine/sulfasalazine if we deemed it necessary. So I went to his clinic yesterday told him I was sick fed up of the steroids, their side effects, and the fact they are becoming less effective and low doses don't work. He then said he wouldn't put me on anything else because it's a gastro issue, and the gastroenterologist has to do it. And he is right.

But what to do when your rheum says it's your gastro's responsibility, and your gastro says it's your rheumatologist's responsibility? What do you do? I am so stuck. I called the gastro's secretary and she wasn't very impressed with the situation. I feel bad for pestering the GI but he is not doing his job!! I know he's not going to be happy and that I'm probably one of his most annoying patients but I can't keep getting chucked from pillar to post while getting sicker. I could see the point when they didn't know what was wrong, but now they know and acknowledge there is inflammation in my bowel and that it is immune modulated. There really isn't an excuse other than it's not 'typical' or 'easy'.

Also, they lost my last calprotectin sample (which means they have lost 2 out of 3!) so I have no idea if my inflammation was bad at my sickest at 7mg. AND when I asked about my liver condition the rheumatologist said it was my gastro's responsibility and he hasn't done anything about it because he doesn't know what it is. He also admitted he didn't even know I was AMA positive!

To top it off I met my husband for lunch and was in total agony for a few hours until my dihydrocodeine kicked in and took the edge off and left me able to walk again. Just had to go sit in a cafe and act normal until I could move. I am losing my independence again :( That is the first time since I started on steroids I haven't been able to finish a meal, and I haven't been able to function/walk after. Sad times.

I have had enough of doctors!
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Are you in a position to get a new GI? Get a copy of all your records and turn them for non car practices to the AMA. They have to treat you, it is their job. But if they are not helping, find a new one. Go online and look up GI's in your area and find one with great ratings!
 
723crossroads said:
Are you in a position to get a new GI? Get a copy of all your records and turn them for non car practices to the AMA. They have to treat you, it is their job. But if they are not helping, find a new one. Go online and look up GI's in your area and find one with great ratings!
Click to expand...

I have asked for a referral to a new GI as I'm not happy with my current one but it's going to take at least 10 weeks to get an appointment.

To get my records I have to apply in writing to the hospital, pay £50 (which I would happily do) and they have 40 days to respond.

So everything takes time unfortunately :( Time which I don't feel I have considering I am now being taken off steroids entirely and aza takes 3 months at least to kick in.
 
Cassy, you mentioned new and severe left-sided pain that's only been going on since your colonoscopy - that's a bit worrisome. It's possible they could have perforated your intestines with the scope. Has the pain gotten worse, or have you had any new symptoms like vomiting or fever? If the pain sticks around or gets worse, I would definitely get it checked out. Hopefully it's just from something like, they took a biopsy from that spot. When I had an upper endoscopy a few months ago, I could point out for you where they took biopsies from, they were really rough on my stomach and it did hurt a fair bit for a few days afterwards, but it gradually got better each day so I knew it probably wasn't a perforation. Anyway, just a bit worried about you! I hope it's nothing and that the pain eases soon.

lsgs, I had a similar situation a couple years ago. My GI felt that I might have Addison's disease but he didn't think he could order the test, so he said my GP would order it. My GP said it's my GI's hunch so he should order it, GI said he can't so GP has to, GP said to call GI, GI said to call GP, and so on. I was calling both doctors sometimes multiple times a day every day for over a week before we got it all straightened out. So maybe you could keep calling both docs until one of them caves? It did eventually get me somewhere, although it was a pain in the, well, you know. It sounds like your GI is a clueless idiot though so I do agree with the idea of getting a new GI. I have a very limited understanding of how the NHS works - would you be able to see a new GI privately right away and then if you like the new doc, switch to being an NHS patient under them? At least then you'd get seen sooner. You can always go to A&E if things get worse too, right? (Again, I'm not sure how the system there works - you don't have to pay anything if you go to A&E there? Here in the US it can cost a lot to go to the emergency room, even with insurance, so I don't want to suggest something that might break your budget.)

How's everyone else doing? I'm not great. My "eat healthier" initiative crashed and burned yesterday. I had cottage cheese every day this week, and my body yesterday said "no more!" - I think it's a combo of dairy and probiotics that did me in. (I respond poorly to probiotics, and I'm lactose intolerant.) I ended up nauseous, having episodes of d, crampy, and worst of all - I started passing a bit of blood. I'm not normally a bleeder, the only other time I've passed blood was after I ate some Greek yogurt (again, dairy and probiotics!). So I'm taking it easy diet-wise for now and just eating lightly and eating what doesn't hurt. I'm still stubbornly exercising every day though, sorry Bozzy but I'm addicted! I haven't passed any blood today so hopefully that's a sign that I'll be feeling better soon. Blah, I hate how my body strictly dictates what I can and cannot eat. I don't like to be punished for trying to eat better. Stupid intestines.
 
Hi cat,

I called yesterday and they ordered a abdominal X-ray and I just had that done. It's not gotten aNy better since Monday, but maybe they were just rough on me.

Cross,

I don't know about the diverticulitis. The gi never said anything after the scope about that.

Thanks for the concern everyone

C
 
Hi everyone
Just need advice. I was with my GI today and he says I have all the symptoms of Crohn's disease he just can't find it. I also told him I've had a sensation in my oesophagus that I've a tablet stuck in it or that it's swollen-he seemed in quite a rush and never said anything . I can swallow have pain when eatting and when swallowing even just saliva. I've heard that CD can cause narrowing in the oesophagus? Can anyone relate or suggest what to do?

Thanks xxxx
 
Gabi, have you had an upper endoscopy recently? I would ask for one to be done if you haven't had one lately. You might also want to ask about an esophageal motility test, I believe the name of the test is esophageal manometry. If your esophageal motility is abnormal, that could affect your ability to swallow and it could also prevent food from entering your stomach properly. Do you know if you have anything like GERD, or if you have a hiatal hernia? There's a number of things that can get messed up in the esophagus, and of course Crohn's can manifest there too, so it's a very good idea to get it checked out.
 
I have an hiatal hernia and I've had two upper endoscopes the last one was in August. Can a hiatal hernia cause GERD? It's driving me mad. Do you think it's an emergency thing or just ring the GP?
Thanks for your quick response.
What way can crohns manifest in the upper GI tract?
 
Crohn's can manifest anywhere from mouth to anus, so it can cause ulcers and inflammation in the esophagus, and inflammation can in turn cause narrowing etc. And yes, a hiatal hernia can cause or at least contribute to GERD. I have severe GERD and a small/sliding hiatal hernia, so I'm a bit of a mystery in this regard too, because my hiatal hernia isn't big or bad enough to be causing such severe symptoms. My understanding is, that if your esophageal motility is abnormal (isn't allowing food into the stomach properly), that's a separate issue, so you may still want to ask about that esophageal manometry test. Are you on any reflux meds?

I would call the GP and see what they have to say. They may be able to order tests for you or they may say to call your GI or go to A&E. Of course if things steadily get worse or even if they don't improve, or if you get new symptoms, then go to A&E. When in doubt, go get it checked out.
 
I agree nothing that's causing pain can be good unless your giving birth or something! The motility thing would be interesting but does that test not suck? I also have halfed my tramadol does so far it's making no difference but my GI said narcotic analgesics are good for IBD is this true? And if so where do we go for pain!?
 
lsgs said:
I have asked for a referral to a new GI as I'm not happy with my current one but it's going to take at least 10 weeks to get an appointment.

To get my records I have to apply in writing to the hospital, pay £50 (which I would happily do) and they have 40 days to respond.

So everything takes time unfortunately :( Time which I don't feel I have considering I am now being taken off steroids entirely and aza takes 3 months at least to kick in.
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So sorry to hear that!!! I always ask for a copy when I get tests done and I should've last time and did forget just to keep them in a file. You are paying for the tests so you should be able to get a copy as sson as the Dr. tells you results! I hope something good comes up for you! This is a shame!!:ghug:
 
finally got my laptop out! (its hard to reply on my mobile)

@cat - so glad you have finally got a rheumatology referral! you know what i think of my rheumy :) after all my GP thought my knee pain was mechanical.. and it was my rheumy who believes i have an inflammtory arthritis and possible IBD. I just think rheumy's are better looking at the bigger/complete picture.

i was reading up on the sulfasalazine.. and the dosage i have is used for rheumatoid arthritis. basically.. you start on 1 tablet a day.. then gradually increase it. so right now i've just upped the doasage to 4 tablets a day. and then i stay on that whilst they monitor my bloods.
but yesterday my face went all blotchy and felt like it was on fire! then i felt sick and
faint.. so im waiting for the clinic nurse to call me and talk about that

@lsgs - so in regards to what i was saying above..if sulfasalazine is given for IBD.. i think you start on a high dosage straight away then taper down. so hopefully you should get a response to the meds a lot sooner than the 3 months? im sorry to hear though that your doctors arent communicating with each other about the meds though.. so has your rheumy said he isnt going to put you on the aza/sulf?

@ibx - welcome to the clan! sorry to hear you havent gotten any answers :( but like i said to cassy.. even though your scope was clear.. your biopsies might show some answers. as microscopic colitis can only be seen under biopsy. :hug:

@gabi - hello! glad to hear from you again :) i agree with cat, definitely tell your doctor about your new symptoms - what did your doc say when you were told about the hiatal hernia??
 
Gabi have you tried altering your diet to deal with your GERD. My son Liam (10) had really bad acid reflux, and was put on a PPI & Motileum. I read up on GERD triggers and GERD friendly foods and we made some changes to his diet, particularly being very careful about fluids, and it really helped him.

He has stopped Motileum and down to PPI every second day and symptoms haven't returned. Now if I could only get him to put on weight I'd be happy.
 
Thanks for the advice guys. My GP called me in for an immediate appointment and as always more waiting. She said I would need another endoscopy to see what's going on but she could see my throat was inflamed but obviously she couldn't see that far down. At the min I'm avoiding the main foods that can trigger a crohns flare up but sometimes even drinking water is hard so if I take a craving for something I will just eat it on the hope to put on some weight. This feeling in my throat is driving me mad! I'm used to the crohnic pain that even morphine doesn't take away but this feeling is so annoying!!
I hope I get an appointment soon. However I'm on the max dose of osomeprazol (nexium) so not sure what else that can do for me?
 
Gabi, if it's inflammation, Nexium probably won't do much. You will probably need something like prednisone to get the inflammation down. If you're having issues with even liquids, you might inquire about getting enteral nutrition through an ng tube. (A tube they run from your nose, through your sinuses, down your throat and into your stomach - it's not fun, but they can deliver liquid nutrition right to your stomach that way with no need to swallow.) When is the upper endoscopy going to be, hopefully very soon? As I said before, I would go to A&E if it gets worse or doesn't get better. If you're having trouble swallowing even water, you might run into some issues with dehydration shortly, so at the very least go in for IV fluids if it gets to that point.

Bozzy, that sounds like an allergic reaction! :( I hope it's not, but that's what sprung to mind. My aunt recently had a similar reaction, she's allergic to some component of Asacol. The Asacol was helping her a lot, but the more she took, the worse her allergic reaction became. It sucks when you have to choose, flare up or allergic reaction? I hope yours is not an allergy, but if it is, I hope they put you on another med that helps and doesn't cause a reaction like this.

How's everyone else? As for me, I'm feeling a lot better. No more passing blood, nausea is gone, bowels are getting back to normal. I didn't skip any workouts and I do wonder if that helped me get through this rough patch quicker. I was feeling awful yesterday but made myself go to the gym anyway. I had been dizzy and weak all day and was afraid I might pass out at the gym. But I think I figured something out - my normal blood pressure is always low, like 90/60 is typical for me. If my BP drops any lower than that, then I get dizzy and feel bad. When I am feeling unwell and having symptoms, my BP drops. But when I work out, my blood gets pumping and my BP goes up into the "normal" range, and that in turn makes me feel a ton better. So just the act of working out last night made a huge difference in how I felt and I think it's just because my blood got moving. It's so simple, and it seems nonsensical to do a workout when you're feeling bad, but it works!
 
Thanks a lot. Do you think this could be due to IBD? You mentioned steroids I got some injected a while ago by my doctor at the pain clinic it helped me so much for a wee while. I've asked for more but they say that the benifits out weigh the risks :/
I don't understand they take away all meds that make me feel better.
That's really interesting about your exercise I find when I exercise I black out. My heart rate is so high (due to the pain apprently) and my blood pressure is so low. I think I might be back in a&e shortly just hate that place now I feel like part of the furniture!!
 
It could be due to a number of things, it could be IBD or it could be the GERD or a motility issue or none of the above. I agree with your GP that you need tests done right away to try to figure it out. When you got the steroid injection, did they inject it into a joint? Was it for joint pain or was it for the bowel issues? I ask because usually injections are for things like inflamed joints, whereas oral or IV steroids are more for IBD (and many other things too). I've had oral steroids (prednisone and Entocort) and steroid suppositories for hemorrhoids, but never have had a steroid injection.

So wait, they feel that your heart rate has risen due to pain, but they took you off your pain meds?? That makes absolutely no sense to me. If you go to A&E, I hope they give you some pain meds so that your heart rate can normalize somewhat, not to mention so you can feel better too! Sheesh, I don't understand doctors sometimes. And I really don't understand this whole "Let's take you off all your meds and see how you do" attitude. It's like, I can tell you right now how I'd do - badly!
 
Cat A&E is 'free' here. I've been once before when my boss who is a doctor sent me after witnessing an episode of pain. All the did was routine bloods, gave me 2 paracetamol and told me to phone my gastro. I was admitted a day later for 3 weeks so that's how sick I was and they didn't do anything... In fact they gave me the whole 'it's probably stress' routine. That's put me off ever going to A&E, even when in extreme pain!

My GI's secretary has sent me through an earlier appointment! What a gem :) She was very unimpressed with my situation and the GI is on holiday so he won't even know about this yet. My husband though is saying I shouldn't go because I have a referral in the pipeline for another GI. My view is, I can't really wait that long and for now he is my GI until I see the other one. I don't know what to do? I'm desperate to get things moving and get help but I don't want to step on anyone's toes.

Maree - what did you do for your son and his GERD? I have horrific reflux after meals/fluids and would love to know what worked :)

bozzy - The rheumatologist had said he would put me on it, yes. He even gave me a leaflet on it and talked me through the risks. But now he has decided, quite rightly, since my bowel problems are unrelated to my sjogren's it's not right for him to prescribe it. He doesn't know how he would monitor my bowel problems or anything. My GI has put him in a terrible position and he has tried his best for me. He has put the fear of death into me about going on aza with his attitude!

Gabi I also had great success with a steroid injection, stopped my diarrhoea for 3 months! I can't believe they are wanting to take you off everything. I would flip out if my docs took my painkillers away. They don't even work that well but it's all I've got!!
 
lsgs, I have heard similar stories about A&E/the ER, it seems to vary from hospital to hospital. A lot of them just try to "treat you and street you" (I think that's the phrase). I am sort of spoiled I guess, our ER here is pretty good - when my hubby went to the ER with awful pain, they took him really seriously and determined it was either kidney stones or appendicitis - they gave him a CT scan right there in the ER and it was kidney stones. He left the ER with a diagnosis, pain meds and meds to try to flush the stones out, and an emergency referral to a urologist. Of course, we also left with a $5000 bill (fortunately after insurance we only had to pay about $500, but even so it is really costly to be ill in this country!). Personally I avoid the ER when possible, too. I'd rather go to a walk-in urgent care clinic as it's cheaper and usually faster but the quality of care is about the same at the ER. I'm not sure if you guys have anything like that over there - urgent care can do a lot of the things the ER does (blood work, IV fluids, x-rays) - they once told me they can handle "anything but heart attacks and people giving birth".

And yeah, if it were me I'd keep the upcoming GI appointment but stick with the plan of seeing a new GI too. Don't worry about stepping on toes, people switch doctors all the time so they should be used to it (if they aren't, they're either brand new doctors or they really shouldn't be doctors!). You need to take care of yourself first and foremost, so try not to worry about being a pest or hurting anyone's feelings. Your health is more important than that stuff. :)

I hope everybody has a good, relaxing weekend and that you all feel reasonably well enough to enjoy it. Big hugs to all!
 
when i had the severe pain 2yrs ago, my GP said A&E wouldnt be able to do much for me. but thankfully one of sheffield's NHS hospitals has a gastro investigations unit. my GP called me 2days after i had seen her, to say she had booked me onto that unit. she said "they want to do a CT scan, but pack an overnight bag just in case" haha i was actually in for 11 nights!!

@lsgs - so glad you have got an earlier appointment. i agree with you, that you should go to this appointment but keep your 2nd opinion referral going through (we know how long it takes to eventually see someone) when is the earlier appointment?

we also have a walk in clinic with Gps and nurses. you cant have any tests done there.. BUT if they think you require anything, they will contact the hospital and send you up there. for example.. i went with severe tonsillitis on the saturday (because my usual GP was closed) and they called up the hospital and admitted me straight away. i wouldnt go to A&E with tonsillitis.. unless i couldnt breath haha

***on another note, i found out that im seeing a different rheumatologist in july :( im actually quite gutted. just hope he is as nice as the last one.
 
Isgs the changes we made we're:

1. Fluids -- I think this was the single most important change: lots of drinks are high in acid and as well as having bad reflux he was getting severly dehydrated (to point of headaches & dizzyness multiple times per week) while drinking lots of fluid. He now only has.
__ Bottled Mineral water with ph 7.8 or higher (our water is Desalinated & it doesn't seem to agree with him)
__ Homemade drinking yoghurt (non SCD compliant)
__ Mango, Banana & Berry Juices
__ Smoothies made from combos of above ingredients.
__ Homemade GERT friendly electolyte mix

He has found he likes to have San Pellegrino which is a high PH, high mineral salts sparkling water with his meals. When his reflux was bad this would make him burp but he said it was the good sort of burps that took away the pain and settled his stomach.

2. Removed all foods high in fat & am obsessive about removing any visible fat from meat as fats do seem to cause him problems.

3. Removed tomatoes and all tomato based sauces, these do upset him.

We've cut his PPI back to every 2nd day this week and so far no symptoms. So now just have to work out how to get him to put on weight.
 
Hey
My doctor thought it would be a good idea to take me off narcotic analgesics as they are addictive! Hello!! I've been on them for a year!! It's so counter productive as I just end up back in hospital on morphine! Ridiculous! The steriod Injection was straight into my stomach- I don't know why but it did help. I just need more but they are talking about cognitive behavioural therapy instead now! Again what a joke?? Today I'm so mad and frustrated with being sick. I wish I could sleep but the pain prevents me from sleeping. I can't believe you all are going through the same thing-as I wouldn't wish this on anyone.
 
Will start by saying I don't have IBD, I've joined here as is somethng being considered for my son, but I do want to comment on CBT.

I have Atypical Trigeminal Neuralgia which is one of the most painful conditions out there and had permits for long term use of a drug of dependency, which allowed me to take opiods as part of a painkiller cocktail which kept my pain in check to a limited deegree.

When my Pain Managment Clinic decided they wanted me to come of my meds and do an intensive CBT only program, my GP said he thought it was barbaric as I had the worst sustained pain he'd seen in 30 yrs of practice. My neurologist was more cautiously optimistic, he said he found it hard to believe it would be adequate but that I was dealing with the countries top Pain Management team and if that was what they recommended I should give it a try.

I did my intensive CBT program in 2007 and it was absolutely wonderful all the participants had extreme long term pain of one sort or the other and we're disabled by pain and we all got fabulous results.

CBT is state of the art approach to treating severe chronic pain and in Australia where I come from it's only offerred to the patients with the most severe categories of pain, who've exhausted the pharmaceutical approaches because it's a much more expensive treatment for pain than throwing drugs at the problem. However long term for many patients it offers the best results.
 
Will add I don't know what the situation is in Ireland with availability of CBT programs but when I did my program in Australia they we're only offerred by public hospitals.

After I received my referral to the pain management clinic there was a 4 month wait before I got an appointment. There was then a ~4 month process of appointments with their team of specialists before they made an assessment and recommended me as a candidate to do a CBT program. It then took just over 12 months for me to get a place on one of their intensive pain management programs.

Which means if you doctor is offerring a referral I'd be inclined to accept it even if your not keen on the idea just now, you might change your mind when you've had a chance to interact with the specialist involved and here what they have to say. Plus good to kick off the process as it could take a long time, and is a good to have it in progress in case your narcotic analgesics stop working (some patient develop tolerence for me they got to be like popping sugar pills).
 
Hey all, I have a mysterious swollen, red bump on my left foot. I don't know what it's from, but it's been bothering me for months. It's at the joint just below my pink on the edge of my food. I only ever noticed it when I put on my shoes and walked around, which isn't a lot these days, so I just ignored it and thought I tied my shoe too tight or something. Any ideas on what happened to my poor body? I made the mistake of going shopping today and now it is painful to walk on.
 
Hi there,

I've only just joined. I'm 33 years old and as long as I can remember I've always had to go to the toilet after I eat something, but I've just lived with it, it wasn't that bad. But in the last year and a half, its gotten worse. In October 2011 I changed jobs and was a horrible stressful time as I got bullied by my manager, I started getting anxiety and panic attacks.
Since then, everytime I eat something, it goes right through me and I can be going to the toilet up to 15 times a day with diarrhea and I can't sit through a meal without having to excuse myself (its really embarrassing). I've lost about 2 stone in weight but not much compared to other stories I've read. I first went to my Doctor about this in June 2012 and I had various bloods, stool samples, and they came back showing that I had an inflammed blowel, so I had a colonoscopy on my large bowel and that came back fine, so they just assumed it was IBS. But then they took more blood tests and it showed that I had high bile acid levels so they have mentioned Bile Acid Malabsorption to me, but now I've had an GI check out my abdominal area and as soon as she touched my lower right side I was in pain, and been in pain ever since. I'm not sure if its always kinda been there without me paying attention to it or not. So I've now had an MRI scan on my small bowel last week and my Doctor seems to think everything is pointing to Crohns in my small bowel the terminal ileaum.
I should hopefully find out soon, as its like a dull ache on my lower right side and fed up going to the toilet ALL THE TIME, I should have shares in Andrex

Every cloud, at least I'm gonna be a size 10 for my cousin's wedding next year at this rate. :lol2:

Anyways I hope your all ok, its nice to know I'm not alone.
 
Hi theghirlemma! Welcome to the clan :hug:
But sorry to see that you're going through this. .

When will you get the results from your MRI? I think its safe to say that everyone in this group has been on this rollacoaster journey of tests coming back negative and some tests showing otherwise.

There are other tests like the pill cam which can show whats going on throughout your digestive tract.
Have they put you on any medication? (Or discussed any potential treatments)

Like you, I had suffered same symptoms all my life (bearable.. as just used to it) until birth of my daughter. Hopefully you can get some answers soon.. and we are here whenever you need to vent, seek advice or just chat about anything really :)

Xx
 
Forgot to ask.. is there any history of any digestive problems or IBD?

@dahl - I have had that same issue before! (Had to re read your msg) I think my doctor said it was a chillblain or something.. but personally I think the toe joint was inflamed (particularly now I know I have some type of inflammatory arthritis) it usually occured on one foot.. the same foot where my big toe joint suffers really bad. It goes bright red, swollen and hot.

It just went away on its own after aa long time though. But since my new meds, it hasnt come back. Have you got any other joint pains?
 
I don't know if mine is the same as what you guys are describing, but I've had a reddish bump on my left ankle/calf area for years now. It came along shortly before my first flare so I have wondered if the 2 are related. It looks like a mosquito bite but it doesn't go away and doesn't itch - it doesn't bother me at all. It hasn't gone away but it's never changed either, it has stayed the same size & color over the years. I have no idea what it is - it is pretty low on the priority list for me as far as things to get checked out, so I never really looked into it.
 
@bozzylozzy aw thank you for your post.
They said I should get results in about 10 days, I'm only taking co-codamol just now, not been told much else.
I'm lucky that I work from home so when I have bad days I can just be at home on the couch.
 
Im a bit jealous that you can work from home!
Not too long to wait for your results (though I know it feels otherwise)
How has your gastro been? A lot of people have issues about not being taken seriously ( me included)
 
bozzy I would be gutted if my rheumatologist was to change, although to be honest I've been seen by 3 and they have all been great so I think there is a high standard of care amongst them.

My referral came through for my 2nd GI but I'm going to go to both anyway. Screw caring about what they think of me. I got a call today saying the original GI is waiting on my rheumatologists letter then he will make a decision on whether to treat me or not, essentially.

Hi TheGhirlEmma! We don't live too far apart haha, I'm in Glasgow :) Sorry you've had to join the 'club' but I hope your MRI throws things up. Have you ever had a faecal calprotectin test done? It shows up inflammation in the bowel and is pretty specific for IBD. It's the test that made my doctors start taking me seriously.
 
Hi everyone, I hope all is okay? I'm having a down day today. The guts feel fine, but I'm depressed about Asacol being discontinued (http://www.crohnsforum.com/showthread.php?t=49793). I need to find a new med to take and that's so frustrating and upsetting. I also had to go have yet another set of x-rays taken on my hip today, as my new rheumy requested them. I am going to start glowing in the dark soon with all the x-rays I've had in the past few years. But I'm at the end of my rope, just so sick of doctors, so even the act of walking into the clinic for x-rays made me depressed. It's been raining cats and dogs all day and is so dark and gloomy out so that's not helping my mood either. I don't get depressed much these days, usually exercise chases all the sadness and demons away, but the Asacol thing in particular just made me so upset.

During the first year or so of my illness, I got depressed often and was of course sick of doctors then too. To cheer myself up, I would buy myself a new bottle of nail polish whenever I had to go to the doctor, hospital, or pharmacy. It was fun, cheap, pretty and made me happy. I amassed a large collection of nail polish pretty quickly that way! So I don't buy nail polish so much anymore, now I'm buying jewelry (nothing expensive of course, just cheap fun sparkly costume jewelry) whenever I need a pick-me-up. I seriously need to buy myself a lot of jewelry after this Asacol thing! I'm thinking at least 2 or 3 rings, 2 necklaces, maybe a bracelet...

lsgs, that's the right attitude. :) Who cares what they think of you? My GI thinks I'm a pain in the ass know-it-all, and I don't care. I'm kind of proud of that, actually. :p What's important is my health and getting the care I need & deserve. I hope your new GI is excellent and listens and takes you seriously and can help. And I hope your current GI can do something worthwhile for you in the meantime.

Theghirlemma, welcome to the forum and the club. I am also jealous that you get to work from home. I hope the MRI sheds some light on things. Like you said, I had some weight loss too when my illness was active - I lost about 20 lbs over the course of a year. Then they put me on steroid treatment and I gained it all back and then some! So don't necessarily plan on being thin next year - I've found that I need to have a variety of sizes of clothing with an illness like this as my weight goes down when I'm ill and up when I'm healthy (well, healthier). I have skinny jeans and fat pants. :p Stretchy fabrics are great, and I find that belts are a must too - when I lose too much weight, my jeans start to slide down, but they fit perfectly when I have more weight on me. Anyway, I'm rambling on. Welcome to the club and I hope you get some proper answers and relief very soon.
 
Hi theghirlemma, welcome to the club. I'm sorry you're feeling that way. I hope the MRI can give you some answers.

Cat, I'm sorry the Asacol thing has you depressed. It would probably effect me in a similar way. I got really depressed when I found out I couldn't switch to the better neuro at the office, I was super upset about. It ruined everything and set my possible diagnosis back months. I got super depressed because I was hoping about it so much, I even had a friend give me a pep talk about how to call and ask. I have awful anxiety about phone conversations with strangers, so I was happy it would be over with, and then I found out it was against the rules. Ugh!

Bozzy,It's not hot, but it is swollen, actually so swollen I'm a little surprised I didn't notice it sooner. I guess that what happen when you only shower once a week and wear socks all the time. I am too worried with all the other pain that I ignore other things completely. I have joint pain in my hip and shoulder, knees, hands and know I've noticed my jaw pain lately. I haven't been dx'd with any arthritis though.

My pain has been high today. I slept till 3pm! When I sat down on the couch it caused pain in my abdomen, which is unusual for me. I also had to have a bowel movement today, which is always a bad day for me because it is so very painful. Today was particularly painful, too. I'm not okay with this much pain in one day. Now I just have to wait for the migraine to kick in and it will be complete. sorry I just had to whine like a baby for a bit. :(
 
I so relate to ignoring other pains. It does seem that the brain can only process one sort of pain at a time.

My son (10) has a cut on his foot on Saturday night the GP pulled the stitches out early as he wasn't comfortable with how it looked. He redressed the wound, told us not to uncover it and to come back in 3 days or sooner if it started hurting.

The only pain I heard about was stomach aches when I asked about the foot I was told it was fine, when the doctor unwrapped it, toes we're red and puffy and the wound was black around the edges and had completely openned up. Turns out it's severely infected, he now gets 10 days on antibiotics (at double normal dosage for his age, due to severity of infection) and when the infection heals they will probably have to restitch.

Moral of the story if there is on do keep an eye on all those other sore spots and make sure they aren't becoming infected or festuring as the pain signals that would normally warn you that you needed to get them checked out can get lost in the mix.
 
Jeez can't believe they've just discontinued a med like that, it seems so abrupt. Is there any reasoning for it? I totally understand why you're depressed about it, if something was keeping me well and it was discontinued I would be a nervous wreck. Are you going to call your GI?

I also didn't realise (I miss so much on this thread it moves so quickly) you'd been to the rheumatologist! How did you get on?

Maree your sons foot sounds insanely painful!! Hope it clears up soon!
 
Isgs thanks for listening to my gripe. It looked insanely painfully, I really don't understand how he didn't notice something was wrong. Hopefully it will heal soon. His GP is going to see him every 2nd day until it starts to heal now he's worked out pain isn't a good gauge of what's happening with him.
 
lsgs, I haven't seen the rheumy yet. But the rheumy got in touch with my GP and requested that I have more x-rays done before my rheumy appointment (which is in July, unless I can get in on a cancellation sooner). So it was just x-rays at the GP's office, haven't seen the rheumy yet and probably won't for 3 more months.

And yeah, there's a thread about Asacol being discontinued here:
http://www.crohnsforum.com/showthread.php?t=49793
Basically, the patent is up so the manufacturer knows they won't make the big bucks anymore by selling only the name-brand Asacol, so they stopped making it rather suddenly. But there's no generic available yet either - and generics have to go through clinical trials & testing just like any other drug, so it'll probably be years before there is a generic Asacol on the market. I got an email from my GI last night and he said I can switch to Asacol HD (which is a different drug, similar but stronger, which the manufacturer is still making). I'll be taking a smaller dose since it's a stronger med. I'm still a bit nervous though, as it is basically a different medication, so I hope I respond well and don't get any side effects.

Maree, your son's foot injury sounds awful! It does make sense that the belly pains are the only thing he was complaining about, though. I saw an episode of Dr. House once where he just couldn't take his leg pain anymore, so he punched a wall and broke his hand so that he could concentrate on that pain instead. Apparently that does have some relevance, something along the lines of, the body can only handle one major pain at a time and tends to ignore other pains. And the closer to the spinal cord/brain the pain is, that's the pain that will tend to be recognized and others will tend to be ignored. That's my understanding anyway. So the tummy pain is higher up in the body than the foot pain, so it makes sense to me that he wouldn't even really realize that his foot was that bad. Poor kid though, I hope the foot heals soon at the very least.

Dahl, I have phone anxiety too, I prefer email (I emailed my GI about the Asacol thing and he emailed me back, fortunately). I'm so much better with words when I'm writing than when I'm speaking, I get so flustered. I think you and I have discussed in the past that we both suspect Asperger's, right? Was it you who sent me a link to an Asperger's test? If so, thank you for that. I'm still working up the courage to ask my GP about possibly being tested for Asperger's. But that online test gave me some useful information, so thank you. :)
 
Oh your poor baby body Maree. I hope his foot heals soon, that sounds so awful. It's interesting what the brain will do with pain. I hope everything starts to feel better and he gets some relief.

Cat, yes that was me who sent you the Aspie test! I'm so glad that you get it. I prefer written communication above all and I hate when I have to use the phone. I learned a lot from the Asperger's test too, simply being aware that I did these things has helped me tremendously. Like I know to make eye contact when I speak to people. I'm too nervous to bring it up to my GP, I am afraid of what he would think of me. I don't know, maybe I over think these things and it's really not that big of a deal.
 
Dahl, I learned so much from that Asperger's test too. I had known for awhile that I hate making eye contact - it's like, if I force myself to make eye contact with another person, my brain short-circuits and I can't properly listen to what they're saying and I can't speak either. It overwhelms me. I've come up with some tricks over the years to work around that though - if someone wears glasses, then I just look at their glasses rather than make eye contact. Or like with my GI, he has very thick dark eyelashes, so I look at his eyelashes. I just look at whatever notable feature I can that's near the eyes but not directly the eyes. I think (I hope) that gives the appearance that I'm actually making eye contact, but it doesn't melt down my brain the way that actual eye contact does. I don't feel that panic well up when I look at someone's glasses or whatever.

One thing I learned from that Aspie test was, there was at least one and maybe 2 questions that asked if you hate tags in your clothing, if you cut out tags, etc. I *totally* hate tags! If there is even a little remnant of a tag in my clothes, I can feel it and it drives me crazy. I've cut out tags since I can remember - I was in college once and we were talking in a Spanish class about which Latin American countries produce a lot of textiles, and the teacher said to look at the tags of our shirts to see where everybody's clothes were made. I had no tag because I had cut it out - and I was the only one in the class who cut out tags, apparently. It was then that I realized that hating tags might not be normal, but I didn't realize until I took that online quiz that it's a common trait for Aspies.

Another thing I found out more recently - my mom told me that when I was really little, I could not stand the sound of the vaccuum cleaner. She said that when it was time to vaccuum, one of my parents would vaccuum and the other would take me into another room and shut the door, and they'd have to cover my ears and try to stop me from screaming - I just could not deal with that noise at all. Apparently I outgrew that, but I know sensory issues are a big deal for Aspies too, so I wonder if that's another sign that I might be an Aspie. I have noticed that I get overwhelmed if there's too much sound around me even to this day - if the car heater is blowing on high then I have to turn the stereo down, I can't listen to both sounds being too loud at once.

And I'm totally scared to ask my doctor about being tested for Asperger's, but I think I'm more afraid of being told I don't have it. If I do have Asperger's, then that will explain a lot and I think it would be a relief. But if I'm told I don't have it? Then what does that mean, that I'm just a weirdo anti-social jerk? So yeah, I think I'm more afraid of that outcome than anything else! That would be horrible. Asperger's would explain SO much, and if I am not an Aspie, I think I would hate myself for being such a horrible person who can't even look another person in the eye.
 
Cat, I am afraid of the outcome too! I have told my honey that I think if I had been born maybe 10 years later I would have been dx'd with Asperger's. I don't look at people's eyes still to this day, I have to remind myself that I have to look in that general direction. I'm fond of the cheek, for whatever reason.

One thing I learned from that test was the question "do you repeat what others say or echo noises" I do this ALL the time. It bothers me so much when I catch myself doing it. I feel like I'm not smart enough to come up with my own response to something. But I always say back what someone just said, especially if it's a short group of words, like "that was good", or "awesome". I just say it back right away. I don't know if anyone else notices. Also I echo back animal noises. It mostly happens when I'm alone, so I don't seem like too much of a weirdo.

I remember I had the hardest time making friends when I was younger. I remember in one of my elementary classes there was a little complain jar students could write down problems they had. I wrote that I didn't have friends, and when my teacher read it (for some reason she read them out loud to everyone) she rolled her eyes and said, tracey still needs friends everybody.

It really hurt me so I never tried making friends after that. When I got to high school I was really good at pretending I was someone else, so I had a group of people to hang out with that weren't really my friends. Now I still am not the best at keeping friendships. I just have the worst social anxiety.

I wouldn't mind an Aspie diagnosis, because it would make so much sense to me. I have a lot of weird sensory things, certain sounds hurt my teeth. I have a lot of weird OCD type things that I do in my routine, but I wouldn't say I have OCD. Recently one of my pills got a new manufacturer. But I have to scripts for the same pill, they are different mg just so I wasn't taking so many 25mg pills. So they don't run out at the same time. Now the pills look completely different and it just bothers me so much, I don't know why. I am really upset about it.

I am so glad I found someone like me, Cat. I don't feel like such a freak anymore! Even if we aren't Aspies, at least we can be anti-social jerks together ;).
 
Dahl, I can so relate to everything you wrote! I always had such a difficult time making friends too. I'm jealous of my husband in that way, he's so socially adept and outgoing. He can talk to people so easily, even total strangers. And even if he doesn't agree with the other person, they still somehow end up being good friends. I have such a hard time talking to people and it's almost impossible for me to make new friends. I can make small talk (the weather is always a safe subject, I usually don't say anything weird or awkward about the weather) with acquaintances like co-workers, but conversation is hard.

And yes, I echo people too - not necessarily what they're saying, but I find that I unintentionally start mimicking the way people say things, their accent, their tone, etc. It's like I am so bad at conversing as myself that I find it easier to just mime the other person. This has caused multiple very awkward situations in the past when I was called out on it! And I don't do it on purpose, but it seems to make conversation more comfortable to me. I am not comfortable as myself so I become somebody else - I should have gone into acting. :p

I do sounds too. Not animal sounds or anything like that, but just kind of little high pitched hums. Like if I'm about to bump into somebody, I'll go "Mmp!" instead of saying "excuse me." Or if someone I know says hi to me and I'm just not able to say hi back, I'll nod and do that same sound. I think that was on the Aspie quiz too, something to the effect of, do you make sounds that aren't words? Something along those lines.

I do OCD type things too, and to further muddy my mental waters, I probably do have OCD. There's a strong genetic current of OCD in my family - my dad and my grandma are both hoarders, and my grandma is also a hand-washer. As a baby, I used to pull out my hair. My parents didn't know why so they just shaved my head so that I wouldn't pull anymore. A quick google search told me that hair pulling as an infant is a textbook sign of OCD - too bad my parents never bothered to get that checked out, or I might have gotten some sort of mental help at an early age, instead of trying to figure it all out on my own as an adult. To add insult to injury, the damage was done to my hair anyway - I pulled enough out before they shaved my head, that I have less hair on the right side of my head (I'm right-handed and I guess I was even as a baby, so I pulled more on the right).

So when I do something weird, I have to stop and question myself, and try to figure out if it might be potential OCD or Asperger's or what. At least by identifying and thinking about my behaviors, I've been able to appear somewhat less weird. I try very hard to *not* be a hoarder because my dad and grandma are. But admittedly, I do wash my hands a lot, especially when I'm cooking. If I even look at raw chicken I feel like I need to wash my hands, ha ha. :p

And hey, since I'm putting all my weirdo cards on the table - do you have strange phobias too? I have had a phobia of taxidermied animals for years now. I think it has to do with the glass eyes, they follow me around - maybe that goes back to my issues with eye contact? All I know is, it gives me chills to think of a dead thing staring at me! I cannot go to the natural history museum, that makes me want to curl up in a ball and cry. I know it's silly, I know dead things aren't actually staring at me and the eyes aren't real and are made of glass - but it still makes me want to run far away whenever I see a dead stuffed thing. Brr! Horrifying!
 
Cat, I make sounds that aren't words too! I also echo accents some times, which can be embarrassing. I am so bad at talking to people. That's the worst when I'm performing poetry, a lot of the time people will come up to me after and want to compliment me. I just have no idea what to say in those situations. It is incredibly awkward. I'm fine when I'm on stage though, it just the one on one conversations that drive my anxiety.

When I was in kindergarten I was almost held back because I couldn't do a jumping jack. My parents had to take days off work to try to teach me how to do a jumping jack. Now it's a great source of amusement that I almost failed kindergarten. I have had to prove myself several times, that I can now do jumping jacks. But poor coordination is pretty common for Aspies. My parents continually enrolled me in sports when I was young, with the hopes of improving my coordination, but it was futile. I am still hopelessly clumsy.

I have a phobia of birds! I hate birds. I've been afraid of them for as long as I can remember. I think it's the flying, I remember being terrified of a large butterfly when I was little. I am convinced they are all out to get me. I've been dive bombed by birds more than once. I think it's completely rational, but people keep birds as pets, so it's not that rational.

My OCD type things are mostly related to my eating habits and such. I have to eat my food in the right order, and if something happens that it's wrong, I just can't handle it. And when I use a word beginning with ex, I have to mentally go through all the words I know that start with ex. It's weird, but I have to do it or I will feel wrong.

I always thought that if I were to write a book about a serial killer, his hobby would be taxidermy. It seems like the proper hobby for a serial killer to have. I can relate to your fear of stuffed animals, they are creepy, especially with their glass eyes.
 
Yep, I have poor coordination too and have always had bad balance. I am a terrible klutz and was as a child too. I didn't get the training wheels off of my bike until I was about 10. I know I was the last kid in my class to get the training wheels off. I'm still a klutz in spite of me now getting regular exercise - last week I walked into the arc trainer at the gym and got a huge bruise on my shin, and this week I walked into my exercise bike and got a huge scrape on my other shin. I was always very bright - I learned how to read at 4 and for awhile I was the only kid in my kindergarten class who could read. But I couldn't tie my shoes until age 6 or 7, I just couldn't make my fingers do what I wanted them to. Poor coordination but high intelligence, that was me as a child, and like you said that fits the Aspie profile too. I feel like I've gotten stupider as I've gotten older though. :p

That's interesting about thinking about all the "ex" words. I'm fascinated by language and lately I've been trying to learn Korean, so I love looking for similarities in words. I'm learning the Korean alphabet right now (unlike most other Asian languages, there actually is a system to Korean characters, you don't just have to memorize thousands of different characters like you would with something like Japanese) and my favorite Korean character is the sound for "ch" (it looks like a little stickman). Whenever I see Korean writing, I get unreasonably happy when I see the "ch" character. :p

This is probably Asperger's-like too, but when I'm talking to someone, I sometimes have to "type" the words as they're spoken. Like move my fingers as though I'm typing. I try to keep my hands at my side or behind me so that the person can't see what I'm doing, because I know it's weird. But it's oddly comforting to me. Words get jumbled in my head when I'm speaking and as a result I often say the wrong thing (just the other day I was trying to tell my hubby about a concert, but instead of concert I said contest - hubby was like, huh, what contest?). I think it helps me sort out words better if I can air-type them - it's like writing them as I say them. I think that helps me not get so jumbled when I speak.
 
Yes, I'm such a klutz, it's not funny. I some how end up always bumping into walls or doors. I was in all sorts of sports, but always got the worst position or ended up hurting myself.

I've been obsessed with language since I was little. I would say aloud all words I saw and drive my parents crazy. I also know all the backwards of a word, which sounds crazy, but I've been picking apart language for as long as I can remember. I even got in trouble in the 4th grade because they were certain I plagiarized a story I wrote for an assignment. I was so upset that they thought I cheated, because it was too advanced for kids my age.

I have the habit of saying everything in my head before I say it aloud. It makes it seem like I have a slow response time, but really, it's because I have to say it in my head first. I had a really bad stutter as a child that I would get stuck on words or sounds, to stall while I thought of the next word. I was able to hide it by training myself to think of what to say before I say it. But sometimes it's not so helpful, and I'll end up saying only part of what is in my head and everyone will look at me like I just spouted nonsense. Which I did, but to me, it made perfect sense.
 
Cat - sorry to hear they are discontinuing the drug that you need... possibly crazy idea if the stronger pill doesn't work.... road trip to Canada/mail order from Canada? I could be wrong (I did a quick google to see if Canada was still going to have it- I read that we sell a generic brand already...but, that could be untrue), but I think that it might still be on the shelves in Canada.... I did a quick google, and a lot of people are looking into mail order pharmacies.
A lot of pharmacies won't fill prescriptions across the boarder, but you can always see a walk-in doctor (it's $50), and I am sure you could get another one there if you bring your old bottles. Anyways, I could have no idea what I am talking about, and I don't know what your financial situation is, so I could have just been useless. I hope you feel better soon. :(
 
Wow. I'm reading this stuff and I see members of my family here. I have 3 family members who are reclusive, they won't look at you in the eyes. My mother used to say that going to the beach hurt her teeth which made no sense to me. It drives me crazy to have too much noise in the car...or in the house. Sometimes my husband has TVs on in different rooms and I almost go crazy until I can turn one off. It's total sensory invasion and I hate all that NOISE. I'm also notorious for not wanting to talk on the phone, I like to write my communications, email works nicely. I also echo sounds sometimes especially the cat. My mind goes 100 miles per hour and sometimes I make myself really tense thinking about things. My neice who is a year old rarely looks people in the eye...does some finger flapping....but is very social and loving so not autism but I think she might have some signs of aspergers too. I wonder if it runs in families? My son says being with people can only be for short periods because it "drains him."
 
Hey guys, all of the traits you're describing related to Asperger's are also considered psychologically "normal" traits of many highly intelligent people; a lot of highly intelligent people are misdiagnosed with the DSM because these behaviours mimic symptoms of disorders in people with average intelligence (I just read a book about this last night for school - I research behaviour, emotional and learning differences of highly intelligent people). One can still be highly intelligent, and have a DSM diagnosis, and one can be of average intelligence and have behaviours that are not symptoms. So, I am not saying to discount Asperger's as a possible diagnosis...but, if any of this sounded like it could be true for you, or someone you know, google Dabrowski's theroies. If those ring true for you, check out this book (http://www.amazon.com/Misdiagnosis-...8&qid=1365678920&sr=8-1&keywords=misdiagnosis). That being said, also, in a very short amount of time, a new DSM is going to come out, and there is a good chance that they'll either be removing or changing the concept/diagnostic criteria of Asperger's a lot (to reflect more recent research).

I don't know if this will help anybody, but I couldn't help but posting it since I JUST read about it last night, and I found it really interesting/something that I think it could help a lot of people to be aware of... :) However, perhaps I need to listen to the speech that we got when we started grad school telling us that "[we're] going to be really boring to most people for the next 5 years, and the things that you find exciting will, in all likelihood, not be exciting to many other people."
 
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Wow, lots of posts to respond to! Here goes.

Dahl, I think you and I are long-lost sisters or something. I do something similar, as I'm talking I'm already planning out the next part of what I'm going to say. And that's usually where my words get tangled up and I say the wrong word, but I keep going because I've already "skipped ahead" in my brain. And if people stop me and ask what I'm talking about, I can usually correct myself, but then I've lost everything I was going to say which freaks me out, and then I have a really hard time saying anything!

GatheringRoses: I'm sort of suspicious of generic Asacol from a Canadian pharmacy. A lot of people in the US get meds from online Canadian pharmacies and it seems to me like a lot of the online ones are shady. There really shouldn't even be a generic Asacol out yet, so I'm wondering if the generic Canadian one is just straight up mesalamine but without the special coating that makes it Asacol. There are a lot of mesalamine drugs (Asacol, Pentasa, Lialda, Canasa, Rowasa, Apriso, etc) - they all contain the same exact medicine, but are delivered differently to different areas of the digestive tract, that's really the only difference. I'm going to try the Asacol HD, it should be the same basic medicine but stronger, so to counter that I'll take fewer pills. I think that will work. I hope so.

Sparkle: My very limited understanding is, autism can run in families. It's not very well understood yet but it does seem to have some genetic component. I read an article a long time ago about it, I can't find the link now. I do have a cousin who is a high-functioning autistic. He's had a LOT of therapy and does pretty well now. He speaks and reads, he makes eye contact sometimes, he loves video games and Star Wars. :) I can tell he'd way rather just lose himself in his video game than have to talk to people at family gatherings, but he doesn't act too upset when we try to talk with him and bring him out of his shell a bit. He's 16 or 17 now, he was going to a normal school in elementary & middle school, and now that he's in high school he does online classes as he likes those better. He may never drive and probably will never be able to live on his own, but all things considered he's doing pretty well.

I've read in the past too that people on the autism spectrum often have stomach/digestive issues, and this also makes me wonder if I have Asperger's, as obviously I have digestive issues! My cousin with autism also has stomach issues, he has a ton of food allergies/sensitivities. Usually I see him eating turkey and potatoes and that's about it. No gluten/wheat, no dairy, no sugar, I'm sure there's other things he can't have but those are the main ones. He gets like brain fog if he eats things he shouldn't and he sort of regresses back to being a more severe autistic, he won't talk to people or make eye contact if he's eaten foods that he reacts badly to.

GatheringRoses again: So maybe I'm just a neuro-typical genius then with a few quirks? ;) Ha ha. Actually, my maternal grandfather (who died many years before I was born) was supposedly 2 IQ points away from being a genius. That's the story I've always been told. He would devour books and could do difficult puzzles in a snap. I tested to a very high IQ as a toddler (I don't know what my number was, I was just told it was very high). Apparently there was some lady from the county, whose job it was to go around to all the 18 month olds and test their intelligence. So for example, she'd show a picture of a collie dog and ask the kid what it was. Most kids would say, "doggie" or "woof woof". I said "collie!" I was so young, I don't remember any of this, so I'm just going by what my parents have told me, but they said I just blew this lady out of the water with how smart I was. She was thrilled, she said I was one of the most intelligent children she had ever tested. She was super excited to come back 5 years later and test my brother - she had such high hopes for him. He tested totally average though, I think he did even say "woof woof" at the dog question. :p But when we were teenagers, my brother and I took another IQ test together just for fun. My brother scored higher than I did (again, I don't remember our numbers, I just remember my jerky kid brother rubbing it in my face that he's smarter than I am). He's really smart in some ways, he just doesn't always show it (he's impulsive, he has no common sense, and he does drugs). So I do in some ways feel like I've gotten stupider over the years or at least my sharp intelligence has dulled somewhat. I'm no genius - maybe I was when I was really little, but I peaked at an early age I guess. :p
 
Hey everyone, good morning, it's morning to me even though It's 1pm. I hope everyone is having a good day.

Cat, we are long lost sisters! Actually I do have a half sister somewhere out there that I don't know or have never met. I didn't even know of her existence until I was 18! I wonder if she has any health issues or if my dad's genes are the good ones haha. I'm so glad I'm not the only one that plans things out before they are said. It makes me seem weird.

I worked as a behavioral therapist for children with Autism so I know quite a bit about it, as apart of my training. It does run in families. Another interesting finding is that there is a higher risk for autism in military families, like 3 times as likely. It's very interesting. Isn't it fun to be weird Sparkle?

Gatheringroses, that makes sense. I have ulcers in my mouth that come and go. I've had them ever since I hit puberty. I had a dentist tell me that it was some virus that was only found in people with a really high IQ. I never quite bought it, but it made me feel good to think I was smart. I've never been tested though, so I couldn't tell you if I am or not. All I know is my brain doesn't work like other people's, which could go either way on the Aspie or neuro-typical genius. haha.
 
Dahl, that would be interesting to know if your half-sister got good genetics or not. I only have one sibling, my brother, and he definitely got the good genetics out of the two of us. I'm the shortest in my family (I'm 5'8" so I'm not short, but I'm still the shortest). I have thin/fine brown hair and brown eyes, I'm mousy and geeky and clumsy and shy. My brother? He's the tallest in our family at 6'6", thick blonde hair, blue eyes, charismatic and outgoing. Athletic and not klutzy. Oh, and of course he's totally healthy except for being a druggie. No IBD or anything like that for him though. Meanwhile I'm over here with (probable) IBD, GERD, arthritis, some weird benign tumors on my liver, and whatever is wrong with my brain. My bro isn't quite right in the head either but I think that's more from drug use than from anything like Asperger's or OCD though. And In fact I'm the only one with IBD in my family - unless you count my great-grandfather, who had UC (and TB and cancer) but he died in the 1950s. So yeah, my bro pretty much won the genetic lottery, and me not so much.
 

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