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bozzylozzy said:
@sparkle - not wanting to alarm you.. when i had my appendix removed, my only symptoms where pain and feeling "off" after eating.. and sweating a fair bit lol!!.. but didn't have any nausea, and i wasn't doubled up with pain. nor did i have a high fever.. i only suffered low grade fever around 37.5c. but.. that was a grumbling appendix.. and i think that's fairly rare.
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Hey Bozzy! How did you get to a point of taking out appendix if no symptoms? Is there a test?

Still having the "Psycho" knife pains :voodoo: day 4. When food moves thru my system, I can feel it in the sore area. Do you think that would be so if it were appendix? I'm hanging in with tylenol, heating pad, the occasional vicadin when it takes me to tears. Then it will mysteriously go away for a day and I'm all halleluja, thank you Jesus, I am blessed, I am blessed, :dance:...and then ........it just comes back. Not severe since days 1 & 2...
 
well, for me.. i started feeling slightly unwell (and had been like this for a while) so went to my GP.. i mentioned that i'd always had big D IBS (were i can feel really sick on the toilet etc) my GP examined my tummy.. and i felt some pain in the LRQ.

had first CRP bloods which were only 8. they said to repeat it in a month and sent me on my way. but then i started with the waves of stabbing/griping pains in the LRQ. and had bad bouts on the loo... went back to GP and started crying when she pressed my LRQ. - my new CRP check was still only 10!!!
she sent me into hosp 2 days later for investigations. as my skin had become clammy.
they did a CT scan which showed inflammation in the LRQ - you could physically feel the mass in my stomach. the next day my CRP was in the 60's. i was then on IV antibiotics and steroids for 11 days.

went home on a low residue diet after they told me they were 99% sure i had crohn's.
went back to hosp a week later for a follow up. he said they got somebody else to look at my CT scan and they now thought it was my appendix... but should be fine now.

one week later.. i arranged to see him for another follow up.. as my pains were slowly returning (with just a pin point of pain) and feeling slightly off.
he took one look at me and admitted me straight away. (i had been at a kids party the day before... looking back at the photos... i was INCREDIBLY pale)

i had an ultrasound which said my appendix was fine!!
they then decided to do a laparoscopy to do exploratory surgery.
i had to sign forms just in case they had to do a stoma etc...

but when they got in there.. my appendix was in a right royal mess! apparently it had attached itself to other parts of my bowel due to repeated inflammation and there was some necrosis :(
my surgeon and gastroenterologist were so shocked that i was still walking around and doing normal things before my surgery.. because it really was a mess in there.

i remember having several "flares" in my life with pain in the LRQ.. but was usually a dull griping pain - which was obviously my appendix having a good old grumble!
 
Hey everyone! So I see my hospitalization was announced here..I'm out now. :) it was a tough week but it was totally worth it. I had started to have extreme chest pains on the Thursday prior, and they were so bad I was staying at home on muscle relaxers just trying to get them to stop. 5 days later I went to the clinic to get checked out, and like Cat said my EKG was abnormal and my heart rate was also through the roof. They sent me to the hospital so they could run more tests and figure out what's wrong. I was admitted for a possible heart attack, and for the next couple of days I was doing a bunch of tests of my heart and lungs (multiple EKGs, stress test, lung functionality test, sonogram of heart muscle, and abdominal ultrasound) and they were all normal. The second day I was there I made it very clear to my doctors that I had a chronic illness that was undiagnosed and was getting very bad, to make sure they could see if the chest pain was linked. They had me do a consultation with a Rheumy, but the few days after that I didn't get told anything about tests for anything autoimmune, so I figured they had ignored my previous symptoms and focused on my heart. The day before Inwas discharged I was feeling much better, and my doctor told me he thought I had the flu and I could probably go home the next day.

Well, when the next day came My entire situation changed. Turned out the doctor had pulled together a team of specialists, including a Rheumy to figure out why I'm so sick. He said he knew something was wrong and it needed to be figured out. And they were able to diagnose me! I am now officially diagnosed with behcets disease.

Now that I'm diagnosed I now understand why my body is so messed up. Behcets is a rare AI disease that attacks the blood vessels in your body, not the actual organs themselves. Thus it can attack anything in your entire body. It can cause blindness, trouble with neurological function, mouth and genital ulcers, IBS like symtoms, joint pain, skin rashes, fatigue, etc. it is basically a disease that mimics Crohns, Lulus, and RA. I had not even heard of it until Friday, and it fits me and my symptoms so well it is even funny, EVERY symptom I have had or having can be explained with this disease!

Back to my heart...I'm having the chest pains because the behcets has attacked the blood vessels near my heart, causing my heart to not get enough blood (called an angina). If I'm not careful, I could make it worse and get a heart attack. So, even though I was discharged I was ordered to stay near the hospital and I have to be back tomorrow morning to start treatment and make sure my heart is ok. My chest pains have come back since I left the hospital, so my husband is afraid they are going to admit me again since a heart attack is possible. :(

I'm so relieved and happy it isn't even funny. To all of you here that are waiting for answers, don't give up! The answers will come when you least expect them. Also, don't try and squeeze an illness into your diagnosis list that doesn't quite fit. I regret doing that with both Crohns and lupus...I kept telling myself it was all wrong, I had to have that disease as there had to be SOME explanation of my symtoms, but I never stopped to think it might be something I've never heard of. I could be a poster child for behcets...I'm a classic textbook case of it, even if there aren't many textbook cases since there are only a few thousand people with this disease in the United States. Go with the flow, and keep doctors in your side that want to help, not ignore you. Get new doctors in your case frequently who might know a lot about other diseases that might be too rare for other doctors to know and recognize. Be proactive!

I hope everyone had a good weekend!
 
Wow.. allie! Im equally happy and scared for you. i really hope your chest pains subside :( but the fact you now have answers is great news :)

What is the treatment for bechets disease? Is it something that can be managed? I have heard of the condition before.. but never knew what it was.

Your doctors seem fantastic.. i wonder if they can train our doctors a few things or two?!?
All the best allie :hugs:
 
Allie!! :D I hope it was okay that I gave a few of your updates on here, I was worried about you and wanted to let the others know what was going on. I'm so, SO glad you finally got a diagnosis! I hope you can get the pred working soon so you can feel better and then figure out a long-term treatment plan. And obviously I hope you don't have a heart attack! Keep us posted on how it went today, I hope you weren't admitted again. Big hugs and congratulations on the diagnosis!!
 
Thanks guys. :)

Cat, of course it is ok that you put stuff on here. :p

Treatment for behcets is a lot like crohns...prednisone, remicade, then sometimes methotrexate or drugs used to treat AIDS.

My appointment yesterday went alright...apparently there was miscommunication at the hospital, and apparently I wasn't suppose to be discharged on Friday. o_O They didn't readmit me but my blood tests werent finished to start a treatment plan. :( I go back on Monday to hopefully start on pred. I saw my GP yesterday to fill him in on the new diagnosis and he gave me more pain meds and muscle relaxers to get me through this week. Chest pains are back full force though....I ended up skipping practice for theater last night because I was very uncomfortable, then ended up falling asleep at 6 due to the muscle relaxers. I can't wait to get on pred and start to feel better....

I hope you are all doing good. :)
 
Aw, that stinks about the bloodwork being messed up. Not cool that they're making you wait an extra week to start pred! There's so much "hurry up and wait" with being chronically ill, that makes no sense to me. I'm assuming you're off of work (quit or on leave?) so that you can rest and feel as well as possible right now. And I hope you can at least get everything worked out with the bloodwork and the doctors and pred etc so that you can be feeling somewhat human again by xmas! Hang in there, big hugs, REST, rest some more, feel better, and congrats again on the diagnosis! :)

How's everybody else doing today? Enjoying the frigid weather? It's snowing here - it's actually really pretty but cold. I need to go to the store today and stock up on hot chocolate! As for me, I'm doing pretty well. I had a couple of rough days last week but still managed to go to the gym 4 days out of the week (sorry Bozzy :p). I got almost all my xmas shopping done too! Only a few more people to buy gifts for and then I'm done (well, except for wrapping which is a big chore!). I like the holidays but it's so much work and so exhausting, I enjoy this time of year but will be happy when it's all over with too. My guts don't do well with the combination of stress and holiday food either!
 
Actually, I'm typing this from my work computer. Turns out my company really likes me, and when I brought my health issues to the table and asked to quit, they offered to cut my hours in half and make me part time in the same position. I was shocked, and it felt like my prayers were answered. Of course the next week I was hospitilized, so I guess I KNEW something was about to happen...I knew I was crashing fast! I am not supposed to move over to part time until Christmas, so I'm still full time right now. I talked to my boss today about starting sooner though because the more stress I put on myself, the more chance of a heart attack. So we shall see. :) Its actually 6pm here, and I'm still at work waiting to go to the theater for practice...I'm playing 3 parts in two one act plays at the end of next week. I've been working on my lines while in the hospital, and I get to catch up tonight (I had to cancel yesterday due to high chest pains). Its becoming hard trying to balance my pride/responsibilites with my health.

This weather stinks! We have gotten about a foot of snow this week. Our commander is on vacation so we aren't having any school delays or closures because people don't know what they are doing, so I have had to drive it in which is NOT fun! I worked on christmas shopping today too, trying to catch up from last week. :p As long as I avoid my trigger foods I seem to be ok...I guess now that I know I have a crohn's like illness (as in it attacks my bowels JUST like crohns), not IBS, I need to be more careful now! :p
 
Sorry to hear your chest pains are still bad.
how was your GP with you when he learned of your diagnosis? And what about your old rheumy? (Bet you cant wait to show her!!! She was horrible)

Cat cat cat.. i give up! Dont start moaning to me when you're knackered from exercise!
Also.. ive gotta admit. my Big D started again on sunday with stabbing/griping pains in my LRQ :(
i think im in denial cat.. just praying it doesnt get worse..
just on my way to my neuro appt too
 
(Sorry allie) started typing my message a while ago on my mobile.. had to stop and when i finally posted it. i saw your msg!

Thats great news about your work! Fingers crossed they will let you cut your hours sooner.. they cant exactly argue with the possibility of a heart attack!

How is your hubby dealing with all of this? X
 
Bozzy, I hope it doesn't get worse! I get lots of little "blips" where my guts are unhappy for a few hours to a few days, but it hasn't turned into a flare (knock on wood) although I can't always trace it back to something I ate or whatever. I'm hoping yours is just a "blip" (for lack of a better word) too and that you feel better soon. How'd the neuro appointment go - was it neurologist or neuro surgeon that you saw?

As for the exercise, I swear sometimes it's the only thing that keeps me human. Did I tell you what my GI said to me at my last appointment? He told me to stop lifting weights because that's likely making my GERD worse! He told me to go jogging instead, and I reminded him that I can't because of the arthritis (I've tried but it hurts a lot for days afterwards). So he told me I should do something else. I grudgingly said, "Well... I'll try to (grumble) do more yoga (grumble)." I'm still lifting weights though - against doctors orders (and of course against Bozzy's orders, ha ha). I really am stubborn. :p

Allie, that's great that your job let you cut your hours after all! I hope they do let you do it sooner rather than later. Like Bozzy said, I'm sure they don't want you to have a heart attack (and certainly not while at work, they'd probably be held liable). As for the weather, we haven't gotten nearly as much snow as you have, only 1 or 2 inches so far here, but the air is so cold and dry and that drives me crazy! My sinuses are always bad but they are worse this time of year. The dry air makes me have tons of nosebleeds. My hair is dry and staticky, my skin has dried out and feels gross, I just feel all-over yucky. My guts don't like it when I go from the cold outdoors to warm indoors either, the tummy does not deal well with drastic temperature changes. It's going to be a long winter! :(
 
@cat - it was an appointment with a neurologist. good news is - nothing sinister. (but to be fair, i didnt go there thinking there was lol) he just said i had..

... wait for it...

.............fibromyalgia. laugh out f'#*ing loud! so apparently.. fibromyalgia is causing my visual problems.. and i need to have CBT.

i am so frustrated, i cannot even begin to tell you. bleurgh! but my hubby took me to a mexican restaurant afterwards - which was so good, i was genuinely gutted when i'd finished my meal (BBQ pulled pork quesadillas) yum yum yum!

we havent had any snow :( but the last few years, we've mainly had it in january
 
Oh no, Bozzy! What a bad doctor to write you off as fibro (which personally I feel is about the same as an IBS diagnosis, it's just giving a generic name to "I don't know what's wrong with you but I would like you to leave now"). :( And this CBT stuff again, argh! What kind of a doctor thinks you can wish away vision problems?? Was this your first time seeing this doc? Did he run any tests on you at all before declaring that you have fibro? Ugh, these lazy bad doctors just make me so upset. First Star and now you being told you need CBT, it's ridiculous!

They need a new form of CBT specifically for bad doctors. "Dr. Quackenstein, you told 27 people this month that they have IBS without running any tests on them. Bad, bad doctor! As your therapist, I'm going to get to the bottom of why you're so freaking lazy that you can't be bothered to pursue a legitimate diagnosis for these poor suffering people. At the end of this intensive 20 week CPT (crappy physicians therapy), you will understand compassion and you will learn that you actually have to do your job if your patients are expected to get better. Shockingly, it's not enough that you graduated med school and that people call you doctor now - you have to continue to act like a doctor even after you earn the diploma. But we'll work on those issues in our next session, which is entitled 'There are more illnesses in the world than just IBS and Fibro.'"

:p A bit tongue in cheek but I think that would do wonders for some of the awful docs I read about in our little club! :p

Ooh, yum, Mexican food! Does your tummy do okay with Mexican? I find that I have a hard time eating in a Mexican restaurant, but there are a few swaps I can make when I'm cooking it myself at home to make it more tummy-friendly. I only ever use the mildest of spices, and I use ground turkey instead of ground beef. I use lots of avocado because that's easy on my tummy and so delicious too! Flour tortillas instead of corn, because corn products make me cramp. And goat cheese instead of regular cheese because I am lactose intolerant (I can't do cow dairy but I can do goat just fine). Yummmm, I'm drooling just thinking about it!
 
bozzy, I'm so sorry about the Fibro write-off. :( My first rheumy tried to diagnose me with fibro, and I literally just looked at him and told him I wouldn't accept that. I have been "tested" for fibro by every doctor since, but every doctor has realized that isn't whats going on. The thing about fibro is you have to have a good number of those "tender points" to get diagnosed with it. I know I don't have many of them...my pain is in a completely different place! So if you feel this isn't something you relate with, I wouldn't accept it.

Mexican sounds soooo good. :D My body hates it, but I love it so much! You aren't going to find many good mexican restaurants here in Germany though. :p

My hubby is handling everything pretty well actually. We knew it was something, so we feel more relieved that it has a name now. My old rheumy doesn't know yet...and at this point, he might never know, because I'm now seeing the rheumy who diagnosed me. :p I will still go to the army hospital for pain management though. My GP is hopeful that this diagnosis will start a path where my healthcare isnt so complicated and hard! :p
 
Cat you make me laugh so much! That is so funny!
My stepmum does have fibromyalgia - and like allie said you have to have 11 oit of the 18 speciffic points to be tender under mild pressure. which i definitely dont have!
My right arm hurts.. and my knee was fixed with steroids! I am so angry its untrue.. as if talking therapy could fix blurred/warped vision!
 
A lot of activity in the undiagnosed club the past few days!

Catatonic I LOVE the idea of crappy physicians therapy, made me laugh so much :D I would love to make a few referrals to that clinic :D

I saw my rheumatologist this morning who pretty much said the complete opposite to the GI. He said it is inflammatory/autoimmune, they might not know what or where from but he pretty much said IBS is a lot of nonsense for me considering the results I've had so far and that I already have one autoimmune disease. He seems fairly certain my calprotectin/MRI etc is going to come back negative considering my steroid response, I don't get why the GI doesn't see that...

He is going to treat me regardless of what they find, just if they do find something it will push my treatment in a different direction. Which is a masssssive relief. Only thing is I now have three completely different opinions from three different doctors!!!

He spent a good 40 minutes explaining everything with me this morning, I feel so much happier in that regard. He's one of the good ones and is always honest with you. If he can't help you or he doesn't know, he will tell you, and I like that approach. Not been too impressed by my private experience so far tbh!!

allieinwonder I have been fascinated reading about your experience with behcets as horrible as that sounds. I'm glad you finally have a name for your illness, I think that's half the battle in being able to deal with something. I always wish I knew what I was mad at when I don't feel good! I studied behcets in great detail at uni as it affects the mouth (I'm a dentist). Really weird to hear about someone having it outside a textbook and I hope getting a diagnosis is going to help you moving forward and feeling better!!
 
Isgs, your rheumy sounds AMAZING! Everyone needs a rheumy like yours. I didn't seek out a rheumy for my disease until a year ago, and I have now seen 4, the fourth being the one who diagnosed behcets.

That's not weird that you like to read about my experience, I thinks its awesome because you are dedicated to your work. :) Like I have said before, I have had these ulcers in my mouth since I was 15, and I have had several dentists tell me I was just allergic to citrus or one of the ingredients in toothpaste. I know that's why most people have mouth ulcers, but they would say this to me when I had 10-20 of them and I couldn't talk/eat/drink because of the pain. I think its great you know about it so that you could recognize it when someone had it, because you could REALLY help someones life in that situation. Out of curiosity, would it benefit me to go to my dentist for these ulcers if these are caused by behcets? Lately the ulcers have caused my tongue to swell twice its size, so I literally cannot talk or move my mouth. Twice now I have thought about calling my dentist and getting an appointment to see if they could prescribe something for the pain/swelling, but I didn't because in the past the "magic mouthwash" I was prescribed didn't help.

Bozzy, has anyone ever been able to tell you why your vision is blurry? I've been reading a lot about vision issues lately since that is a major symptom of behcets, and it seems like vision changes are not something to take lightly. :( Just make sure you don't ignore it! The edges of my vision have been blurry for a couple years now and I usually never mentioned it to doctors because all my symptoms were random and I felt like a hypochondriac...bad idea!
 
lsgs, you're going to get all the dental questions from us now! Ha ha, just kidding. It sounds like you're a good dentist, I don't think most dentists know about illnesses like Crohn's or Behcet's. My dental hygienist wrote in my file that I'm on Asacol and "being treated for Crohn's" but she couldn't even spell Crohn's correctly! And I told her I don't actually have a diagnosis but she left it like that anyway. Then I told her I do have a hiatal hernia and she was like, there's not a box to check in your file for that so I'm just going to leave it off. So she wrote I was diagnosed with one thing but not another and couldn't spell it... sigh.

Now that I think about it, CPT (crappy physicians therapy) might have to last longer than 20 weeks. There are some docs who might have to go to it indefinitely. I am also thinking we might have to punch them in the guts randomly so they get a taste of what we go through. :p

lsgs, I'm glad you finally found a good doc who is taking you seriously and is willing to treat you! Any idea what the treatment would be - more steroids or something else?

Bozzy and Allie, I've read that too about needing a specific number of points to be painful/tender. At one point early on in my illness I actually started poking and prodding myself in the areas in question and not a one of them was sore so I know I don't have fibro. I get all-over joint pain when I'm in a bad flare, but when I'm not flaring I only get random ocassional pains. The right hip hurts sometimes but I know that's arthritis. My left ribcage hurts sometimes too but that appears to be referred GERD/heartburn pain (it goes away when I take antacids). So I know I don't have fibro and I would laugh if a doctor ever tried that line on me. And surely it doesn't cause vision problems!

Speaking of vision problems, my vision actually improved a bit when I was on steroids. I wear glasses and usually one eye gets worse each year. So one year my left eye will get a bit worse, then the next year the right eye will get worse, then the left eye, and so on. But after being on Entocort for a few months, both eyes actually improved! And have stayed at that improved level for the past couple of years. It's strange, but I must have had some very mild eye inflammation or something that was helped with steroids? Either that or it was a really weird coincidence. So anyway, my rambly point is to keep an eye on your vision before and after being on steroids - you might be surprised!
 
i went to see an orthoptist today, who did a more extensive eye test. basically checking how my eyes work together..
my visual field tests were fine.. but she said that my eyes are weaker than what they should be.
if you look at something far away - your eyes look straight ahead. but as you look at an object or screen.. the closer it is - your eyes should turn inwards (towards your nose)
but my eyes physically wont stay in that position - hence the reason i have to "double take" and rest my eyes for a split second.

it seems to make a lot of sense. and it could be the cause - so have to try eye exercises!! its really interesting actually! - and if it works, ill be well happy! lol!!!
anyway, the results go back to my opthalmologist next week. and see what he says :)

i cant wait to see my rheumy again in january - and we can laugh together at the fibro mumbo jumbo!

lsgs - thats good news that your rheumy is on your side.
funnily enough - my rheumy is on the NHS and he is awesome. my neurologist however was private!! go figure!
 
@allieinwonder Glad you have a diagnosis and are working towards a plan. It must be a great relief to know what's going on in your body and to work towards a plan for dealing
with it.

Hope everyone else is doing well!
 
Hey All,

I'm currently Undiagnosed, had every test possible, most recently the pill cam, and it's normal! :(
The main issue is my blood, I had 2 transfusions early this year, blood count down to 6.1 and no B12 & Folic Acid. Recently, they found that my Vit D is less than 14? I'm not too sure how bad this is?
I get the feeling the doc is going to give up on me and give me the IBS Label, though IBS can't really mess the blood up this much surely?!

Just needed a rant :)

x
 
Hi scopey! Welcome to the gang!

Feel free to vent anytime ;)
What symptoms do you have?
I really dont know about the bloodwork issues.. but does sound like an absorbtion problem..

when do you next see your GI? Have you seen a rheumatologist yet?
 
Thanks! I've been reading this thread for months, glad to finally posted :)

My symptoms are: abdominal pain and cramping, tiredness, weight loss, blood in stools (not often), mixture of D & C, sometimes I need to pass stools straight after eating! I get mouth ulcers, leg pain (guessing this is Vit D?) and my stomach bloats a lot!
I was first with a lung doctor as I had dizziness & getting out of breath, then blacking out, but then he figured that was because of the low blood count!

I should also mention my sister has Crohn's, really bad, she has had 3 stoma resites!

I see him next week! No, I haven't seen one of those yet!

Thanks for your help! x
 
Maybe a rheumatologist route could be a good idea.
because as you've probably read.. allie has a condition that attacks the bowels like crohns (and other areas)
They could do a full blood check to look at different AI conditions.
Keep us posted though :) x
 
Hi Scopey, welcome. No, IBS should not affect your blood work like that. I agree with Bozzy, it sounds like an absorption problem. You mentioned low B12 - that is often found in Crohn's patients. The most common area for Crohn's to manifest is in the terminal ileum (last part of the small intestine) and that's also the area where B12 is primarily absorbed. Folic acid and vit D are also often low in Crohn's patients. So that right there would make me suspicious of IBD/Crohn's, and it definitely doesn't sound like IBS! Unintentional weight loss and blood in stool are red flag symptoms that it is something more than IBS so I'm glad you're pursuing answers. The fact that your sister has Crohn's means you have a higher than average likelihood of getting it yourself, so definitely make your your docs know about your sister if they don't already.

You mentioned having every test in the book and they all came back normal - I can so relate, I am the same! My scopes, scans, most of my blood work, stool tests, pill cam - they all came back normal. So frustrating! But I tried a trial run of prednisone and it worked wonders, and subsequent use of other IBD medications also have worked well, so my doctors take me seriously and they know I have something inflammatory, and they generally treat me as though I have IBD. But officially I am still undiagnosed.

What kind of leg pain specifically do you have? Is the pain in the muscle, bone, joint? It could be due to a vitamin deficiency or dehydration or even something like arthritis. I would get that checked out too, sooner rather than later. Arthritis and IBD often go hand in hand - I have arthritis in my hip (and I'm only 33) but I caught it early and it's really mild and it responded well to physical therapy.

Welcome again and like Bozzy said, feel free to vent to us anytime! We're experts at venting in here. :p
 
bozzylozzy said:
i had an ultrasound which said my appendix was fine!!
Click to expand...

Wow. It is a wonder you are still here!! Our bodies are amazing aren't they? Strong stock and I'm always amazed at what people are able to survive. I'm glad you didn't end up with a stoma after all.

I'm not 100% what was wrong with me but I treated "IT" with ice and tylenol finally and "IT" finally went away. It was a very bad 6 days - 10 times worse than my actual surgery - with burning stabbing throbbing knife pain, worse in the morning....skin even tender to touch on the abs. I think it was....although I'm a little skeptical after reading your post....a pulled lateral ab ab muscle from trying to get off the GI's table with no help. .A day or so later the dreadful spasms started. Anyway I've moved through it and am so grateful. :)
 
Welcome to the club Scopey. You have come to the right place! I know exactly what you are going through...a year ago I went through many colonoscopies and upper endoscopies, then finally a pill cam, and all of them were normal. Right now the thing to do is try your best to patient and keep trying to figure out what is wrong. I know it is hard, but don't give up! We are all here for you!
 
Hi Everyone

What a great find yay

i fall into the undiagnosed group as i have had my first Colonoscopy Yesterday and that came back clear i have a MRI of the small bowel on Tuesday 18th dec and they have taken 4 biopsies from the Distal Sigmiod

I have now got to wait another 3 weeks after the MRI to see the Consultant for the results

just a quick history
i have had bowel issues for about 10 years but docsz kept saying IBS untill about 4 months ago when i got a nasty bout of Gastro and never recovered
i get intense pain 20 mins or so after eating anything and have to get straight to the loo other wise i loose control ( which has happened a few times )
i have weight loss ( lost about 1st 4lbs in 8 weeks ) extream tireness no energy im living off mash soup and chicken
the pain i get is at alot of the time unbearable i get sweaty neausa dizziness
i have on and off bloody stools
all bowel movements are watery and snotty
blood tests have come back with a high inflammation and im contantly bloated
im very tender when prodded on tummy area
all i want like the rest of the undiagnosed group is clarifcation of what is wrong and get treatment
i have been in pain for so now that i have forgotton what it is to be painfree and normal
its a relief that im not along and i hope you can all share stories and have a good rant
and also share sucesses on getting our diagnoses
xxxx
 
Hi stacey - welcome to the gang!
(I love your signature by the way.. thats me all over!)

I have to ask.. when they did the colonoscopy.. did they just biopsy te sigmoid? And not the terminal ileum?
Your doctors seem to be on the ball in ordering an MRi of the small bowel.

but if that is clear too.. maybe you should request a pill cam.
Do you know what level your CRP is? Given the high inflamatory indication and your symptoms - i really hope you dont get fobbed off with IBS.

whereabouts is your pain? If its LRQ.. have they questioned appendicitis?
Sorry for all the questions lol ;)

X
 
Hi StaceyC96, welcome to the club. I can't add much more than what Bozzy already said/asked. I hope the MRI goes well and that you can get some answers, either from that or from the biopsies. Keep us posted on how it goes and how you're doing. I hope you don't have to be undiagnosed for too much longer!
 
Oh, and Bozzy, you are going to YELL at me so much. :p I've been to the gym 3x this week and am planning on going twice more before the week is out... it will be the first time I've gone to the gym 5x in one week! (Monday weights, Tuesday rest, Wednesday weights, Thursday cardio, Friday weights, Saturday rest, Sunday cardio). Pretty sure I'm addicted at this point, ha ha. I have such big exercise plans lately though, I decided recently that I'm going to train for some bike rides (not races, just leisure rides). There are a bunch of lakes in my city. There's a small lake close to my house, so I plan to try to ride my bike all the way around it. If that goes well then I will try to ride around the medium-sized lake that is slightly farther away, and if that goes well then I will try to ride around the really big lake! I'm scared of that one, I might die or might just quit halfway and call hubby to come pick me up in the car. :p Maybe I'll just be satisfied with tackling the medium-sized lake... or maybe even just the small lake! Ha ha.
 
Hi Bozzy

The colonoscopy was on Weds 12th dec my Mri is on the 18th Dec, so not waiting around which is very good
from the write up from the Consultants sheet the only biopsy was of the sigmiod not the terminal ileum which i thought was weird as that where most of peoples crohns are found
the pain is mainly lower down the tummy nearer to the right side but it does travel left to right
the consultant says that because the pain and bowel movements are at there worst at night and i have interupted sleep most night its no way IBS which i have been fobbs off with by many GPs
and the Blood loss which i always thought it was my little grapes
i have so many questions for the consultant as im a bit confused and uncertain
as because they did not find anything in colon and they took biopsies from the Sigmiod what does that mean
will they find anythnig in my small bowel and i take it i will have to wait untill the 4th Jan to see the consultant for the results and the next stage
Yesterday i was so uncomfortable and sore, had no bowel movements at all
this morning i have the oh to familier pains then in the loo to a little bit of watery stools
its very confused.com at the mo
I will keep you updated
also sorry for coming across thick :) but what do you mean by
CRP & LRQ ???
Its cool ask away i need all the inside info as poss :)
Cheers xxxxx
 
Hi stacey.. that does sound strange about only doing biopsies of the sigmoid.
CRP is the C-reactive protein which indicates your inflammatory/infection level. And LRQ is lower right quadrant :) so where your terminal ilieum and appendix is :)

There are still lots more tests they can do before fobbing you off. such as the pill cam and even key hole surgery x
 
Cat-a-Tonic said:
Hi Scopey, welcome. No, IBS should not affect your blood work like that. I agree with Bozzy, it sounds like an absorption problem. You mentioned low B12 - that is often found in Crohn's patients. The most common area for Crohn's to manifest is in the terminal ileum (last part of the small intestine) and that's also the area where B12 is primarily absorbed. Folic acid and vit D are also often low in Crohn's patients. So that right there would make me suspicious of IBD/Crohn's, and it definitely doesn't sound like IBS! Unintentional weight loss and blood in stool are red flag symptoms that it is something more than IBS so I'm glad you're pursuing answers. The fact that your sister has Crohn's means you have a higher than average likelihood of getting it yourself, so definitely make your your docs know about your sister if they don't already.

You mentioned having every test in the book and they all came back normal - I can so relate, I am the same! My scopes, scans, most of my blood work, stool tests, pill cam - they all came back normal. So frustrating! But I tried a trial run of prednisone and it worked wonders, and subsequent use of other IBD medications also have worked well, so my doctors take me seriously and they know I have something inflammatory, and they generally treat me as though I have IBD. But officially I am still undiagnosed.

What kind of leg pain specifically do you have? Is the pain in the muscle, bone, joint? It could be due to a vitamin deficiency or dehydration or even something like arthritis. I would get that checked out too, sooner rather than later. Arthritis and IBD often go hand in hand - I have arthritis in my hip (and I'm only 33) but I caught it early and it's really mild and it responded well to physical therapy.

Welcome again and like Bozzy said, feel free to vent to us anytime! We're experts at venting in here. :p
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Hi, thanks for your help!!

I've been on prednisone in the summer, for a 6 week course I think it was, it didn't make a lot of difference, it made me put weight on but as soon as I came off it, it started to drop again!

The leg pain is mainly from the knees upwards, they feel like growing pains on good days, then on bad days, it feels like a ton of weight on them!

I also get a random skin rash, always on my hands, it's like the skin bubbles up then goes red and itchy, it's not eczema as I have that on my legs and it's completely different rashes, I know IBD can cause this sometimes but wasn't sure on the type of rash it would be for that!


But thanks for all your help everyone, what a friendly forum! :thumleft:
 
Hi, sorry I don't have anything to add but wanted to drop in and say helloooo to Scopey and StaceyC96.

Scopey, the rash you have on your hands... I have a similar thing. It's like wearing a pair of red gloves! It stops at my wrists quite abruptly. It's like little bumps that come up and it's super itchy. I wonder if we have the same rash :O no one has ever been able to tell me what it is.
 
That's strange - sounds similar to a contact allergy. But I'm sure you thought of that. It's cold, have you been wearing gloves?
 
Scopey said:
The leg pain is mainly from the knees upwards, they feel like growing pains on good days, then on bad days, it feels like a ton of weight on them!
Click to expand...

This is probably so unrelated...but my sister went through similar symptoms and it had to do with her uterus. She had hysterectomy and it went away.
 
Sparkle2012 said:
That's strange - sounds similar to a contact allergy. But I'm sure you thought of that. It's cold, have you been wearing gloves?
Click to expand...

Yeah the trouble is, being a dentist, the doctors just jump on that but it predated dental school and any sort of glove wearing. It also seems to be related to my tummy. If I get this rash, I can pretty much guarantee I'm gonna get sick pretty soon.

It's been there for so long now I don't even bother bringing it up normally, they just glean over it really cause they don't have an answer.

I'm a weird one :redface:
 
Stacey, the others are right, there are a lot more tests they can do before giving up. And you are right, if the pain and D is causing you to wake up in the middle of the night, it isn't IBS.

To everyone here....

If it turns out not to be crohns, it could be many other things that can cause the same symptoms. I tell this to everyone who is Ill and undiagnosed...do not try and squeeze a diagnosis into your medical file if it doesn't fit or the doctors don't find evidence of it. I know it is extremely frustrating, but if you keep an open mind it will be easier to get the right diagnosis. There are other types of IBD that it could be, like microscopic colitis. Microscopic colitis would not show up visually on a colonoscopy, and you would have to get a biopsy right where it is attacking your colon to get a positive biopsy. It could be another autoimmune disease, like Lupus, Behcets, or types of connective tissue disease. Lupus or CTD could be attacking the connective tissue around your intestines, or it could be attacking the outer layers of the intestine which would not be showing on a colonoscopy (crohns could do this too). Behcets causes ulcers and inflammation JUST like crohns from mouth to anus, but you would not have a positive biopsy for crohns because behcets attacks the blood vessels inside the intestines, not the intestines themselves. It could even be some other sort of chronic illness causing IBS because of the stress of the illness! My point is, keep an open mind and make sure you tell your doctors ALL of your symtoms so that they can put the puzzle together and figure it out. I just got my diagnosis after almost 9 years of symptoms, and I spent a couple years trying to force a crohns diagnosis, then tried to force a lupus diagnosis after a positive ANA test result. While it was also the fault of the doctors, because they just told me I was fine when I clearly am not fine, it was probably annoying to them that I was gently trying to say I have a disease when there was little or no proof of it. It took my disease progressing to where it is threatening my life and a doctor at the hospital I was admitted to that knew my rare disease to get diagnosed. Patience is key here guys!
 
Thanks and Hiya to you both
I'm keeping an open mind but I terrified which is properly not helping
Your all so friendly and it helps to get other point of views and experiences
Hugs xxxxx
 
StaceyC96 said:
Thanks and Hiya to you both
I'm keeping an open mind but I terrified which is properly not helping
Your all so friendly and it helps to get other point of views and experiences
Hugs xxxxx
Click to expand...

Hi Stacey it is okay to be scared :) I know I am! This place is awesome for getting help and advice and even just venting when you're feeling rotten. I know since I started coming on here I feel much less alone :)

allieinwonder said:
Stacey, the others are right, there are a lot more tests they can do before giving up. And you are right, if the pain and D is causing you to wake up in the middle of the night, it isn't IBS.

To everyone here....

If it turns out not to be crohns, it could be many other things that can cause the same symptoms. I tell this to everyone who is Ill and undiagnosed...do not try and squeeze a diagnosis into your medical file if it doesn't fit or the doctors don't find evidence of it. I know it is extremely frustrating, but if you keep an open mind it will be easier to get the right diagnosis. There are other types of IBD that it could be, like microscopic colitis. Microscopic colitis would not show up visually on a colonoscopy, and you would have to get a biopsy right where it is attacking your colon to get a positive biopsy. It could be another autoimmune disease, like Lupus, Behcets, or types of connective tissue disease. Lupus or CTD could be attacking the connective tissue around your intestines, or it could be attacking the outer layers of the intestine which would not be showing on a colonoscopy (crohns could do this too). Behcets causes ulcers and inflammation JUST like crohns from mouth to anus, but you would not have a positive biopsy for crohns because behcets attacks the blood vessels inside the intestines, not the intestines themselves. It could even be some other sort of chronic illness causing IBS because of the stress of the illness! My point is, keep an open mind and make sure you tell your doctors ALL of your symtoms so that they can put the puzzle together and figure it out. I just got my diagnosis after almost 9 years of symptoms, and I spent a couple years trying to force a crohns diagnosis, then tried to force a lupus diagnosis after a positive ANA test result. While it was also the fault of the doctors, because they just told me I was fine when I clearly am not fine, it was probably annoying to them that I was gently trying to say I have a disease when there was little or no proof of it. It took my disease progressing to where it is threatening my life and a doctor at the hospital I was admitted to that knew my rare disease to get diagnosed. Patience is key here guys!
Click to expand...

To be honest, this does worry me! I have this hunch there is something, like what happened to you, that they are missing. I already have one autoimmune disease which is supposed to affect mainly elderly women and I got it in my teenage years. Autoimmune diseases don't often come alone either. I really do worry they are not thinking outside the box enough.

Although would calprotectin be raised in something like lupus, behcets etc? I don't think so...? The calprotectin test is what brought me here tbh. I know now there is inflammation in my gut somewhere but they can't find the source of it. As far as I was aware it was pretty specific to IBD but with it being a new test I don't suppose there would be that much research into it.

What's everyone up to this weekend? I have had such a good week tummy wise I'm on top of the world! :)
 
Hi All,

I hope your feeling all ok!

I was just wondering, I've come back from my GP and he thinks I have gallstones, I had terrible pain in my upper right stomach area, so at some point having a scan to check them! Though when I had my MRI in September time, that area came back normal, just a few cysts on my liver.

Has anyone heard of this as a link with IBD before? Or just my body getting stranger? haha :p
 
Scopey, I've heard others on the forum talk about gallstones, although I'm not sure what the connection is to IBD or if there is one. I do believe gallstones can cause some similar symptoms to IBD (nausea, diarrhea, abdominal pain, etc) and from the anecdotal evidence from the forum, it seems the two do regularly go hand in hand. As for the cysts on your liver, were they able to determine what they were specifically? I have "focal nodular hyperplasias" on my liver, they are basically like benign tumors. I'm not sure if there's a connection there between IBD or not either, but it would be interesting to know what yours are.

I'm doing okay except that this weather is driving my arthritis batty! It rained most of the weekend and my hip just ached and ached. I had to force myself to walk the dog, could barely even do that (although we saw 3 other corgis at the park and they all played together, so it was worth it in the end because that was just seriously cute). Now the rain has stopped and the hip pains have let up - but, now we're supposed to get a blizzard on Thursday! So I'm expecting more hip pains then. They're saying anywhere from 6 to 15 inches of snow, with winds 30 to 40 mph. My boss has already said that I am allowed to stay home that day if I don't feel up to driving in that mess - I am thinking it's going to be a snow day for me! The last time we had that much snow, I couldn't even get my car out of the driveway, let along through the streets. Even the snowplows got stuck during our last blizzard! One was stuck for about 20 minutes right in front of my house! So hopefully it'll be a nice snow day, but I'm expecting my hip to go nuts again. Ugh.
 
Hey all,
Just wanted to give a quick update - I went to see the GI today, and gave her updates on my condition. Basically I'm still having the same symptoms, despite my inflammation markers being normal and my colonoscopy being clear. Doc says that this isn't normal (duh), and is probably not just a long recovery period from an infection. She put me on one more medicine that's supposed to relax my small intestine, in case it's just cramping up now, but she's also referring me out to another, larger hospital in the area for an upper endoscopy and an MRI for my small intestine. In addition, she's going to refer me to a group of specialists at a hospital in Boston, so my case can be presented to a panel there.

I'm of course annoyed that I still am sick and don't have any answers, but I'm pretty excited to have a plan. Never did I ever think I would be so excited about having someone stick a tube down my throat, but hey! Whatever works, right?

Hope everyone else is well! Cat - we had some serious ice in Massachusetts today, so I feel your pain...thought I wish it was snow...;)
 
Scopey said:
I was just wondering, I've come back from my GP and he thinks I have gallstones, I had terrible pain in my upper right stomach area, so at some point having a scan to check them!
Click to expand...

Hi Scopey - my Gi said gallbladder and liver issues were linked to Crohns. I have no DX yet, but I've discontinued alcohol....just to make sure my liver stays in good shape.
 
Hi all

Just thought I'd post my story into here - I just stumbled across and joined the forum today.

In a nutshell over the course of the past 6 months or so (a bit longer I think) been really struggling with constant diarrhea - the kind where every time I eat I have to dash to the bathroom. And it HURTS. I can't remember the last time I was able to go 'normally'. Hence, I've been online trying to look for advice or answers or just some relief.

I've always had stomach/bowel problems and had trouble gaining or keeping weight on. I think at my smallest I shrunk to like 6 and a half stone - and that was with attempting to 'eat' normally. After a long while I was able to get up to a more normal weight, but I'm sick of feeling tired all the time as well as having lots of cramping. And of course the bathroom issues. It's got to the stage where I plan my day and food intake around whether there's a bathroom near - not to mention the embarrassment.

So... this is me. I live in NZ at the moment doing my PhD so I'm not sure what my student health insurance covers. That, and an eternal fear of doctors!

I just wondered if any of you had something similar and how you started going about finding out what to do to control it? It seems daft if I go to the GP and say 'I have constant diarrhea'...

Thanks in advance,
Heather
 
Hello Heather, welcome to the group. It definitely sounds like you have something going on, and it sounds like a trip to your GP is needed to check it out. I have a fear of doctors as well, that kept me from going to a GI for a couple years despite my GP telling me I urgently needed to go....please, take some advice from someone has been there, please GO! I ended up stretching out my journey way farther than I needed to due to my fear. I wish I had just bit the bullet and went and got it checked out. Tell your GP your symptoms..the D, the weight loss, and anything else you are experiencing. IBS is not suppose to cause that kind of weight loss, so you need to get checked out!

Scopey, I have no idea on the gallstones being linked to Crohns, but I do know they cause the same symptoms. My mother in law had symptoms like crohns and it ended up being gallstones. Once they took her gallbladder out the symptoms were gone!

Cat, I am jealous of your snow! We got over a foot of snow last week, then it got warmer, started raining, and it has all melted away. :( I am so sad! And it looks like we wont get more snow before Christmas! I really wanted a white Christmas since this is my last Christmas here in Germany. I hope you enjoy your snow day. :)

theseithakas, that is awesome that your doctor has recognized that something isn't right and has you on a plan to try and figure out what is wrong. I have seen SO many people (including myself) that have just been told it is IBS when a colonoscopy is clear and their inflammation markers are 0. Patience is going to be key here! Make sure you have all of your records for each new doctor you see, and make sure you keep a list of EVERY symptom you are having, even if it seems to be unrelated. My disease ended up being something that causes problems with the entire body, and it took ALL of my symptoms (including my eyes, hands, and even my genitals!) to get a diagnosis. Try and keep an open mind and let the doctors do their thing. :)

As for me, I am still feeling pretty awful. I saw my new German rheumy yesterday, and after my last set of blood and urine tests he is 100% positive it is Behcet's Disease, or Morbus Behcet as he calls it. I got put on a prednisone taper, starting at 20mg. I'm only on 20mg for 4 days, then I start tapering...I'm on 10mg for a long time, then 5mg for a long time. He wants to see me in 4 months, when the taper ends in about 3. I'm a little bothered that I have no real long term plan, and I have no plan if this prednisone taper doesn't help....I know that in the past, prednisone has helped SO MUCH, but only if it 10mg or higher and once I get lower than that I feel like crap again and I start flaring again. With this disease it will be easy to know I'm flaring, since the mouth ulcers are my first sign. But what about maintenance drugs if the pred gets me somewhat into remission? I've done some research on my own, and most stories I read of other Behcets sufferers are really random with treatment...I saw one on plaquenil long term (a drug for lupus), one on remicade infusions, one on chemotherapy....very random! I would just like a long term plan at this point, not just "here is some pred, see you in a long time". The language barrier isn't helping either. I am going to contact my american rheumy and see if he would like to take on my case with the behcets diagnosis, and if he says anything like no it isn't behcets I won't go near him again. I would just like some long term answers. :(
 
@allieinwonder - thanks for the reply.

Yes, I'll get onto this. Time to face reality I think and stop burying my head in the sand. You're right this on-off weight loss isn't really normal and particularly not healthy!

Sorry to hear you're having such a bad time of it. Yes, I imagine the language barrier is something quite difficult to overcome, particularly as it's all relating to your health - quite anxiety provoking I imagine. Maybe at the moment try to put the long-term on one side and concentrate on the here and now? I know that's easier said than done, but it's something I've always used with my CBT patients and in the immediate it does reduce anxiety a little. As you mentioned, you've already thought about the next stage in contacting your American specialist - that sounds like a good move.

Take care
H
 
Hi Heatherb

Sounds just like me and my bloody bowels
i was the same as you i hate the docs and will aviod if i can get away with it

i have had bowel issues for about 10 years and kept being told that it was IBS and when finally told them that it cant be with weight loss and the pain being unbearable

The Doc finally referred me to a GI and in the space of 3 weeks i have had a colonoscopy ( which came back clear of Crohns ) and today at 11am i am having a MRI scan on small bowel as my GI thinks that its in my small bowel

Please please go see a doc and stamp your feet for answers and care
i was told by the specialist that IBS does not keep you up at night i just wish all the GPs i saw over the last 10 years would have taken me seriouly as this bowel thing has been taken over my life for too long

I am finally getting some answers and care

All The best
Stacey
xxx
 
Theseithakas, I'm glad to hear you're being referred to some other specialists, I hope they can figure things out for you. As for the anti-cramping med you were prescribed, was it Bentyl (dicyclomine)? I was prescribed that one at one point, it's an IBS med so it doesn't do much for me. Honestly it works better for menstrual cramps than for gut cramps so I keep some on hand just in case I have a really bad "time of the month"!

And as for your ice storm, it sounds like we're getting a bit of that first. Our blizzard is supposed to start with rain tomorrow evening and then change into heavy snow, so it sounds like there'll be a layer of ice under the snow. Great, I hate driving in ice! Allie, we had the same thing happen, we got a bit of snow (not as much as you did) and it stuck around for about a week, then it rained and all the snow went away. There's no snow at all on the ground here right now - but it sounds that all is going to change on Thursday! They still have no idea how much snow we're actually going to get so it could be 6 inches or it could be over a foot. Either way I guess we will have a white xmas so there's one good thing about this crazy weather.

Heatherb, welcome to the forum and the club, I'm glad you found us! I agree with the others, it is definitely time to go to the doctor. Unintentional weight loss is a red flag that something more than "just IBS" is going on so you really do need to get checked out. Before you go to the doc, make sure to write down ALL your symptoms to tell the doctor - even symptoms that don't seem related, like if you have joint pain or fatigue or skin issues or migraines, etc. It's not "just diarrhea" if it's affecting your life to that extent so make sure the doctor knows that too. If they tell you it's IBS, particularly if they say that without doing any tests - do not take that for an answer! Ask for tests or find a different doctor. Good luck at the GP and please keep us posted on what happens and how you're doing!

Allie, did the rheumy give you any reason as to why he is doing such an abnormal pred taper? How frustrating that he was able to diagnose you but now is only half-heartedly treating you. I agree that it's a good idea to at least talk to your other rheumy and get his thoughts - maybe he'd be willing to put you on some sort of maintenance med since it sounds like the German rheumy isn't.

How's everybody else doing today? I'm having a bad tummy day and not quite sure why, I ate only safe foods yesterday. Maybe it's the stress of the xmas season that is doing me in. I'm exhausted and a bit nauseous. Maybe it's the impending change in weather? I don't know. Honestly I've been passing a lot more Asacol tablets undigested lately so I wonder if that's why my tummy is less happy than usual lately. Ever since I doubled my dose of Nexium, it's like my stomach acid never gets strong enough to break down the Asacol so it just goes through me. Literally I'm noticing it in my stool just about every day now, sometimes multiple times per day. But the double dose of Nexium does seem to be helping my GERD so I don't know what to do. It's so damn hard to manage a balance between multiple illnesses! If I get one under control then another one gets unhappy. I get so sick of it sometimes. I see my GI in about a month so I'm going to ask him about all this then - for now I am just going to take it day by day. I might even go back to the normal (not double) dose of Nexium for a bit and see if I still do okay on that. This all is just frustrating and it gets so old after awhile. I know you guys understand!
 
Welcome to the clan heatherb :)
Dont be embarrassed to go to the doctors for diarrhoea.. they say you should go if it persists after 2wks.. and its safe to say that you have. amongst other alarm bells.

The best thing i found that helped was a low residue diet - only a temporary thing though!
Make sure you keep us updated x

@allie.. maybe the pred is just a short term thing to help rapidly reduce symptoms. maybe at the 4month review he will have a plan of action in place. we can always hope anyway xxx
 
Hmmm, how did I know you were going to say that, Bozzy??? I must be psychic! Ha ha. I really don't think the gym is the culprit this time. I am making today a rest day just in case though. :p But I will be back at that gym tomorrow! My guts do feel a little better than they did this morning. Someone brought these giant chocolate muffins in to work and I had one - and haven't paid for it so far! Baked goods are always iffy with me, sometimes it's hard to tell if there's stuff like nuts or coconut in it. But so far so good.

Okay, so back to the subject of snow - yikes! It's been snowing ever since I wrote my earlier post from today. The weather forecast initially said 20% chance of light flurries but no accumulation... now they are saying 2 to 3 inches of snow for today! The grass was green this morning and now it's all covered in white. Craziness! If they can't even get today's weather forecast correct, that makes me really worried about the blizzard that we're supposedly getting on Thursday! I think it's going to be a bad one. Of course my dog will be super happy though, the more snow there is the happier she is. :p If we get a bad blizzard on Thurs, I will be sure to post photos of my corgi in the snow.
 
Well I bit the bullet, so to speak and booked a doctors appointment for 8:45am tomorrow. Let's hope they don't try to fob me off with IBS....
 
Thanks - I'm up thinking/worrying about it! I don't want someone to turn around and tell me it's 'all in my head'. Bloody hell I'm a psychologist - I don't need someone throwing the depression card at me grrr. That's what happened years ago in the UK so I never pursued it further. I guess there's only so much a body can take. I'm also thinking like if I drink coffee I invariably get reflux and I do after most food in addition to running to the loo. Do you think that's at all relevant to bring up?

H
 
Yeah I think that's worth bringing up, sometimes before I go I write a list of all the symptoms I've experienced so then I don't forget as I also get nervous! Might help you :)
If they say IBS, maybe bring you've been told that before and tried all everything to control it (even if you haven't!) so then they don't just go 'oh here, just try this' and be on your way, sort of thing?
 
Heatherb, here's a link for you, it's a nice list of "red flag" symptoms (these symptoms indicate it's more than "just IBS").
http://ibs.about.com/od/symptomsofib1/tp/Red-Flag-Symptoms.htm
If they do try to say it's IBS without doing any tests, ask them how they can determine that without tests! I would definitely ask for tests, probably starting with a colonoscopy and an upper endoscopy. At best IBS is a diagnosis of exclusion, if they've ruled everything else out then they figure you must have IBS. At worst, they tell you that you have IBS when they can't be bothered to figure out what you actually have - this is the sign of a bad doctor, so if they say it's IBS right off the bat then start looking around for a new doc!

As for getting reflux after eating certain things, that sounds like GERD to me. I have GERD too and mine is caused by a hiatal hernia - there's a hernia on the valve between my esophagus and my stomach, and the hernia keeps the valve open all the time, so stuff can reflux up whenever it wants to. If you have an upper endoscopy, they can check to see if you have a hernia too or if you have complications from reflux such as gastritis or Barrett's esophagus.

How's everyone else doing? I'm pretty well today. As of yesterday I went back down to a single dose of Nexium instead of a double dose, and so far so good with that. We'll see if it makes an impact on the amount of Asacol I pass undigested. This blizzard that's coming though, I think it's going to be a doozy. Usually my bad hip aches before a bad storm. Well, today the bad hip was doing it's thing as usual, but my good hip was also painful! What's up with that! I'm in the early stages of a barometric pressure headache too which I sometimes get with bad storms. So yeah, this is going to be interesting! I'm thinking I need a snow day tomorrow just to recover from all the symptoms I get from the storm! :p
 
Howdy!!!

Man have i had a stressful day... just had a nice hot bath and now sat with a glass of wine! :)
This is better than a gym any day ;) *wink. wink nudge nudge* cat... lol

we havent had any snow :( boo!!
 
Bozzy, I'm going to the gym and THEN I'm going to have a hot bath and glass of wine (more likely a mug of hot chocolate). ;) Ha ha. And as for snow, you can have it! They're predicting about 17 inches of snow for us between tonight and tomorrow, including possible "thundersnow" which is a frightening thing (literally thunder and snow happening at the same time which just seems wrong to me!). If we get over 10 inches of snow there's no way I will be able to drive in it, there's just not that much clearance under my car, and they don't usually plow my street quickly, so it's sounding likely that I will be spending the day at home tomorrow. Good thing I have stocked up on TP and hot chocolate. :p My head is pounding though! Hopefully the gym and some hot chocolate will cure my headache.
 
Thundersnow?!? Thats a new one on me.. sounds very scary.

and as for 10 inches of snow stopping you getting out in the car.. well in england we only need half a millimetre for the country to stand still!!!! Lol...
 
OK - so doc's appt was surprisingly good in the sense she actually listened and was concerned about my symptoms. As a result she's referred me to a GI specialist and the following tests:

Liver/Enzymes
Renal function tests
Renal - potassium
Renal - uric acid
Full blood count
C-Reactive protein
Ferritin
B12/Folate
Coeliacs

Plus whatever else I need to pick up tomorrow. I got a call as I left to say she's added some things she wants to investigate.

In the meantime she wants me to have a dairy and gluten free diet and see how that goes over Xmas.

Everyone else have similar tests?

H
 
Ha ha, it's like that in some parts of the US too. My hubby was in the army years ago and he was stationed in Texas. He said that they got probably about 1 millimeter of snow there once, and there were tons of car accidents and the highways got shut down, etc. Nobody knew how to drive in even a tiny amount of snow down there! We live in the northern part of the US so we know how to drive in snow as we get lots of snow up here, but usually not this much all at once. The last time we got 17 inches of snow at once, the buses weren't running and even the malls were shut down, and snow plows were getting stuck. I am thinking this time will be similar!
 
Heatherb, it sounds like those are all blood tests. That's a good place to start but you will probably need more tests than just bloodwork, but hopefully the GI will order more tests for you. As for going gluten-free, don't do it until after you've been tested for Celiac. If you go gluten-free, your body will no longer produce the antibodies that appear with Celiac disease, so the tests will be negative even if you do have Celiac (I hope that made sense). So, have the tests first and then try the dietary changes. Good luck with it! Don't beat yourself up if those tests come back normal either - I've had all those and all of mine are usually normal. Bloodwork doesn't tell the whole story and can sometimes produce a false negative, or things like inflammation markers (CRP) can be totally normal even when you're really ill (about 10% of Crohnies have normal CRP all the time).
 
I see what you mean. OK will do.

Yeah she's ordered those as a starter and also stool samples plus referral to a GI specialist. She said it's out of her domain when it gets this bad so she'd rather I went to someone who specialises in that area.

However she didn't just write it off as IBS - in fact she categorically told me it isn't IBS to cause this so at least the GP is on-side!
 
Heather, you are on the right track. CRP measures how much inflammation is going on in your body, and it is raised with crohns/IBD. The GI will be able to order more tests, like a colonoscopy. Going gluten free is to start seeing if it is Celiac disease. Keeping a diary will help show patterns in your diet with your symptoms. Make sure you right down what you eat, your stress levels, and ALL your symptoms (not just digestive track ones). Good luck! :)

Cat, have you thought of getting the hernia fixed so that the GERD would settle down? That way you don't have to deal with that on top of the IBD? I'm so glad I don't have to deal with that on a daily basis. I hope that if you want snow, you get a winter wonderland, and if not that it is gentle and you aren't stuck for too long. ;) Here a foot of snow wouldn't shut much down, there are so many salt trucks they keep the roads pretty clear. :p

I'm just trying to hang in there right now. The pred hasn't kicked in yet so I'm doing way too much stuff with my heart not doing too well. My parents get here on Friday, I'm performing in two different plays Thursday and Friday, I haven't finished buying all the Christmas presents, I still have crocheting orders to get out, and I'm still working full time. I'm screwed. When I asked my husband if there was anything else he wanted for Christmas, his answer was to wake up next to me in bed and to not have to visit me in the hospital. :( I have plans to get most of it done to reduce some of the stress, but things like crocheting have to be squeezed in bc I'm never at home anymore. I'll be VERY glad when Saturday gets here!

Oh, and guess what? I will officially own a wheelchair soon, probably by this weekend. We hope to have it for when we travel around Europe with my parents. We are going to Christmas markets Saturday, Sunday, and Monday, then the day after Christmas we are taking a three day trip to Prague. It would be nice to be able to save spoons and reduce the amount of moving I had to do so that I don't end up making the trip slow and boring. :(
 
That's great Heatherb, sounds like you have a really good GP! I hope you get a good GI as well! Having at least one good doctor on your team is such a blessing. Just having a doctor take you seriously is so important! So I'm really glad that your GP said it isn't IBS and that she's investigating as much as she can, that's wonderful. :)

Oh stool samples, what fun. I had to do like 5 or 6 different stool samples at once, that was not a nice day! :p They'll probably test your stool for bacteria & parasites (they need to at least rule that stuff out) and hopefully they'll test your stool for inflammation markers too, I think that test is called fecal lactoferrin. It'll be gross to collect all those stool samples but worth it to rule some things out at least.
 
Aw Allie, I know this time of year is designed to be stressful but you're taking it to an extreme! Hang in there, I hope you can somehow do it all while holding onto what little shreds of health you have left! Getting a wheelchair sounds like a good step in the right direction anyway. Prague sounds awesome too! My cousin toured Europe years ago and Prague was her favorite place that she went to. I hope you can have some fun and ditch some of this stress!

Yes, I've considered surgery to fix the hernia. I have to have at least one more test before I can even be considered for surgery (they have to check my esophageal motility - if it is normal, I can have surgery, but if it is not normal then surgery would actually just make things worse). So I am thinking of asking my GI for that motility test. The surgery generally has good success rates but there are a few potential complications of the surgery that concern me. Specifically, bloat (which I already get!) and inability to belch (sounds scary and probably contributes to the bloat) and the scariest one, inability to vomit! I hate to vomit, but sometimes you just gotta puke, so not being able to sounds kind of horrifying to me. There's no guarantee I'll get those complications, but the thought of it is scary enough to me that I'm not in a super big rush to get surgery. Plus I've never had any form of surgery ever so just that thought alone is a bit scary too. I told myself I was going to try every reflux med before considering surgery. And I'm backtracking on that a bit, I am thinking a little bit about surgery, but it's still a really scary thought.
 
Yeah, I can understand why you would be scared of surgery. I have actually had hernia repair surgery....they thought my abdominal pain was due to a umbilical hernia back in 2010 (an ER doc literally poked me, I screamed, and he went "thats interesting" and said hernia). It was an outpatient surgery, and the surgery itself took maybe an hour. I woke up from the surgery, they took me to my husbands car maybe 15 minutes later, and it took a few days of recovery to feel well enough to get up and move after that. Honestly, I was scared about surgery before that surgery, and I'm not anymore. When I got to the place I was freaking out, so much that when they asked me to pee in a cup I ran into my husbands arms and started bawling like a baby...then I heard then go "we are going to give her some drugs to calm her down", and once they did that it was obviously smooth sailing. :p They made sure I was comfortable before and after the surgery, giving me oral pain meds as soon as I woke up and asked me what drink I wanted, which I was really excited that they were giving me a coke right after I woke up. :p So, I wouldn't be so freaked out...if they possible complications don't outway the possible improvements in your life, I would do it. I ended up having that surgery for nothing (as we know it was not a hernia that was causing the issue), and I'm still ok with it because it ended up not being that bad. Yeah, I have a scar, and they cut out my belly button piercing, but it was all good in the end because they know how to handle freaked out patients...they get them a lot. :p
 
Hi Cat

I have had the fundo op to fix a hiatal hernia and all I can say is if I had my time over again there is NO WAY I would do it. It is in no way like any other hernia repair and you have to learn to swallow food again and you cant eat normally for about 3 months, you start on clear liquid and then thicker liquid/foods etc and at about 3 month mark you can have unblended meats and bread again. It has ruined my gut motility and I have gastroperesis now, I can no longer vomit and that is shear hell as you feel nausea on a whole new level because you cant vomit when your body needs to. I was bloated and constantly belched for 6 months. I wish I had stayed on the nexium but this is just my experience but I had to share so you know what can go wrong. If you want to know anymore feel free to ask.
I also know a lady that has had it done and she is fine but also found the first 3-6 months a challenge due to eating baby foods to solids again as you feel like you can choke on mash potato in the beginning!

I have not been great with my bowels either so I have been reading everyones updates and thinking of you all, sorry I have not posted but some days are just so hard and I have been feeling very down :(

I will stay in contact more.

Hope everyone is ok X
 
Hi sunny days.. i know how you feel about feeling down and not posting. ive dropped off this site a couple of times.. just reading other peoples' posts and life goes in a haze when you dont feel up to talking much..
but if you ever need a chat, even if its not bowel IBD related, we're all here for you :)
:hug:

in terms of surgery, either big or small - it is always a very personal decision. my c-section got infected and re-opened and i was ill for a loooong time...
i was absolutely terrified at being put to sleep for my laparoscopy - which is one of the most common surgeries!!

but i know.. for me i have to be ready to mentally cope with the recovery. which is why i have stayed clear of my chiari surgery.. if i get an infection up there, infection of your CSF is meningitis!! :(

but cat.. try and take any surgery reviews online with a pinch of salt! dont forget.. people generally only write things on the internet when they have bad experiences *cough cough* ;) ;) hahaha!!

Heatherb - thats fantastic news that your GP seems really proactive in getting you sorted!! fingers crossed your Gastro is equally as awesome :)
 
Hi Bozzylozzy - just noticed you're in Sheffield! I grew up/am from there :D

Urgh bad day already today and it's just got to lunchtime. I'm REALLY tired still - juiced some tangelos to try and get some vitamins in me as nothing is staying INSIDE me (dammit) and peeled a nashi pear. One of the two certainly doesn't agree with me :'( so that's kind of put my day out of kilter. I was intending to go to the mall but I don't trust my stomach enough. Getting a bit close to Xmas for shopping...

I should be going back to the doctors today to find out what other test the GP wants me to have and also to pick up antibiotic cream. Incidentally has anyone had skin issues related to their IBD/Crohn's? I didn't mention it to the GP but she noticed and thinks it's related in some way, so has given me some cream to put on my face to help it and hopefully clear it up.

Meh... sick and tired of feeling.... sick and tired!

H
 
Sunny Days, I'm so sorry you had such trouble with your surgery. :( I agree with bozzy, I've had to disappear from the forum at times too.

Heather, I have skin issues with my disease, and it skin issues is one of the criteria for behcets. Crohns, lupus, and other autoimmune diseases can cause skin issues as well. I have gotten patches of nasty rashes on my face, neck, and legs.

Well, today makes 72 hours since I started the pred. I feel maybe a little better...but it is not helping the way it has in the past. I know why though, I am so freaking stressed right now it isn't even funny. Last nights performances went alright, but they could have gone better. I lost one of my costumes two minutes before I was suppose to go on, and it is a black costume, and we couldn't find it. I literally FREAKED out and the entire cast was trying to calm me down because they were afraid of what the stress would do to my heart. They ended up throwing my other costume on me a different way and it apparently worked...but I was late for my entrance and the entire audience noticed. Of course as soon as we turned on the lights backstage after the show my costume was on the floor plain as day. >.< The next play I was SO nervous, and I apparently did ok. The play as a whole did alright, we definitely had some bumps in the road though. I'm glad I only have to do this one more time, tonight. I'm actually singing tonight at intermission...let it snow. Fun!

Oh, and it is snowing over here! We were supposed to get a wintry mix last night but then we woke up to a few inches of fluffy snow, and it is still snowing. I'm really hoping it sticks around and we have a white Christmas. :)

I hope you all are having a good Friday and that you guys have a good weekend if I'm not able to get on. :)
 
Hi Heather,

Glad you got on well at the doctors! I have trouble with my skin, I get an odd rash on my hands, mainly on bad days they start to get really red! I know you can get rashes with mainly Crohn's.

I saw the Doctor yesterday and I'm being treated with Colitis, because although he hasn't seen anything, with my past blood work & symptoms he is pretty sure that's what it is!

And I haven't got gallstones, which is good but no idea what that pain is now then!

Hope everyone is doing well :)
 
Hi

Thanks for those replies - glad the doc is onto it! So much seems to depend on whether or not they take you 'seriously'. Being young, I've always found it that whatever the complaint physiologically they're more than eager to slap a psychological illness on you such as depression or eating disorder. This one, thankfully, knew better.

My bad start to the day got compounded by taking a walk to the shop earlier. I went to go and pick up some stuff to bake - I ate maybe 20 minutes prior. Yep you guessed it, was in the shop and had THE worst pain that I've had in a while. It's one of those situations where you don't know what to do because you don't know what you CAN do. No bathrooms obviously, so I was just stood sort of frozen. Ended up crouching down pretending to look at something on the bottom shelf until it subsided. *sigh*

I'm pretty sure that's not normal. I hope it's not :( my pain threshold is pretty high but that was horrible. I don't have high hopes that Xmas will be much fun at this rate. Doing my best but my cousin was sticking the boot in and moaning about the fact I've been told to not eat dairy and that I don't want anything spicy to aggravate my stomach. I understand she's cooking for everyone and I said I'm happy to cook for myself, but it's a bit mean to have a go at me about it. My mum is in the UK and she was pretty annoyed that she said stuff like that. Ah well. Just makes me want to stay home alone for Xmas if I'm honest. I also don't fancy all the conversations about tests etc or 'what if this' or 'what if that' scenarios on Xmas day!!

I hope everyone is OK... sorry to be a moany miserable person!!

@Scopey how are they planning to treat your colitis?

H :)
 
Morning My Lovelies

im kinda nervous today, i had my MRI on tuesday and today im seeing my consultant at 4:30pm for the results, it is a good thing that its come back so quickly im hoping that they have found out what is making so poorly and can get me sorted before xmas

however im worring that its come back so quickly due to not finding anything, i dont know im anixous cos i just wanna get sorted and stop feeling so rough

fingers crossed its a diagnoses and ill be on my way to getting better and getting my life back

stacey
xxx
 
Fingers crossed Stacey! Hopefully they just want to put your mind at ease over Xmas rather than you worrying over the Xmas period.

H :)
 
Hey, they've put me on mezavant XL 2.4g, twice in the morning, so hopefully that will do something :)

Stacey, I hope it goes well today and agreed, it will put your mind at ease over Christmas! :)
 
Good luck Stacey! I tell this to everyone...patience is key with chronic illnesses. Diagnoses take a very long time! I wouldn't keep hoping for a diagnosis each appointment, I would just keep chugging along and when the diagnosis comes, it comes. I know I'm being blunt, but after 8 years of SO many appointments, you realize doctors do not just look at your symptoms and recent tests and immediately have an answer when it is something chronic. It is a slow process, and it really really sucks. :(

There is a facebook page I follow called "Hope for Bella"...it is a little girl in Australia with some sort of autoimmune disease, and she is still undiagnosed. Her disease is really destroying her body...she has no hair, has a feeding tube, and her blood count is always dangerously low. She started have these extreme symptoms a year ago, and they STILL don't know what is wrong with her, so she can't have treatment! It breaks my heart everytime they update their page talking about doctors appointments and all they want is a name for the disease, and I always think in the back of my head that they probably still wont get a name for it. They thought she had a very specific AI disease at first that messes with your blood count, but they took that diagnosis back sometime later and still can't figure it out due to her wild symptoms. They think it might be lupus, but they just don't know. If she can't get a diagnosis, where is the hope for the rest of the diagnosis who can still eat on their own and have hair to brush?
 
hey heatherb!.. whereabouts in sheffield where you from? what a small world indeed :) how old were you when you moved to NZ?.. my brother has family in NZ in christchurch.

@allie - im glad the pred has started to kick in :)

speaking of skin problems.. i cannot stop itching!!!! mainly at night and its driving me nuts!!!!! GP gave stronger antihistamines which help a little bit..
but i do get tiny blisters on my fingers that are really itchy too.. but it disappears on its own.. so never saw the docs about it (but i think this is related to my SAPHO syndrome)

my urgency is slowly returning again with nausea.. with LRQ stabbing pains.. meep :( this is not what i need for xmas!

@stacey - thats great you get your results so fast! let us know how you get on xxx
 
I also just watched on the Anderson show about a young woman who has a disease that NO one can figure out. She has seen over 200 specialists and none of them know. She went to Mayo clinic and Cleveland clinic. Her symptoms started after she had a severe allergic reaction to a medicine. After that now instead of hair growing out of her hair follicles all over her body, finger nails grow out!!!! She lost all her hair too and finger nail bits are growing out of her instead of hair. It is very painful as one could imagine. They have no clue what is wrong with he and likely wont ever know. IT is terrible. She is young, I thought like 19. Her mom has to help take care of her. It is so sad.

When you really stop and think about it, every disease out there like crohn's and other diseases that have a name, well that is just it, it is only a name! They still have NO clue what crohns is or many of the other illnesses out there. They just slap a name on it. They have no clue, which is why there is no cure for many of the diseases out there. I have a good friend who is also chronically ill for years. She see's an osteopath doctor who is helping her. HE is totally on the holistic side. She said he does not even pay attention to names of illnesses, he said it means nothing! He said it is only a name that was put on a bunch of symptoms and has no significance at all. They eventually come up with a name for these orphan diseases when more and more people start coming down with them just so they know what to call it. It sounds better giving a name to something rather than just saying " we have no frinking clue what you have!". It is very frustrating...







allieinwonder said:
Good luck Stacey! I tell this to everyone...patience is key with chronic illnesses. Diagnoses take a very long time! I wouldn't keep hoping for a diagnosis each appointment, I would just keep chugging along and when the diagnosis comes, it comes. I know I'm being blunt, but after 8 years of SO many appointments, you realize doctors do not just look at your symptoms and recent tests and immediately have an answer when it is something chronic. It is a slow process, and it really really sucks. :(

There is a facebook page I follow called "Hope for Bella"...it is a little girl in Australia with some sort of autoimmune disease, and she is still undiagnosed. Her disease is really destroying her body...she has no hair, has a feeding tube, and her blood count is always dangerously low. She started have these extreme symptoms a year ago, and they STILL don't know what is wrong with her, so she can't have treatment! It breaks my heart everytime they update their page talking about doctors appointments and all they want is a name for the disease, and I always think in the back of my head that they probably still wont get a name for it. They thought she had a very specific AI disease at first that messes with your blood count, but they took that diagnosis back sometime later and still can't figure it out due to her wild symptoms. They think it might be lupus, but they just don't know. If she can't get a diagnosis, where is the hope for the rest of the diagnosis who can still eat on their own and have hair to brush?
Click to expand...
 
Wow, this thread has been busy lately! So I survived the blizzard but it was a nasty one. We got 16 inches of snow, and it was very wet, heavy snow. Hubby and I had to shovel 3 different times and I'm really tired and sore now! Fortunately we have awesome neighbors who helped us out with shoveling so that was really nice. We're lucky too because a lot of people in my city lost power (so they lost heat too and it is really cold out) - our power flickered a few times, but stayed on thankfully.

I don't have time right now to respond to everyone, but it sounds like a lot of you guys aren't doing that great and aren't looking forward to holiday meals, holiday stress, etc. I can definitely relate, my mother has been trying to guilt trip me because on the 24th I'm going to have lunch with my oldest friend (I've known her since the 2nd grade, her family still calls me "Pony Girl" because she and I used to play with My Little Ponies when we were kids). I'm having dinner with my family that day but apparently that's just not good enough for my mom and I'm throwing her whole plan out of whack. Yesterday she called me and she was like, "I just don't know what you're going to do for lunch!" Um, I'm going to eat with my friend. Seriously. What is it about the holidays that makes people go extra crazy?? My mother is normally just a little bit off (she thinks she has celiac disease but she doesn't, she over-exercises because she desperately wants to prevent cancer, etc) but she's gone a bit more off the deep end lately. I'm just trying to not stress about things any more than I have to because I know that's bad for my guts and will just make everything worse. But seriously, I haven't seen my friend in ages, is it so much to ask that while I'm in town, I see her for a couple hours while still spending the majority of the day with my family?

Blah. It's things like this that make me wish the Mayan apocalypse was really happening. :p I wouldn't have to deal with any xmas stuff if the world would just end already! Ha ha. Joking of course, for the most part.
 
Ughhhh... had a really rough day yesterday. so many rushed trips to the toilet.. i definitely saw blood and in the end was just passing orange jelly?!? Sorry TMi.. but ive noticed my bm's to get looser all week with some urgency and have been feeling nauseous since thursday.

i feel so rough :(
Just gonna start playing my little violin lol!!
 
@heatherb - Welcome! Hope you're feeling okay, and keep us updated about how things are progressing...sounds like you have a bunch of tests ahead of you.

@allieinwonder -you're so right about keeping an open mind about my symptoms. It's really tempting to troll the internet and find this or that diagnosis, because wondering sucks, but I'm trying to remember that I'll know in due time what's going on with my body. I'm sorry to hear that you're struggling with not feeling well.

@Cat-A-Tonic - they do have me on Bentyl. I've been on it since...Tuesday, I think, and it hasn't done much for me. Maybe I'll save it for cramps ;). Sounds like we're getting some snow today (finally), so I'll maybe I'll join you in the snowed-in club! How's the stomach?

@StaceyC96 - what happened with your MRI?

@BozzyLozzy - Sorry to hear you're not feeling well. Any improvements today?

As far as me, I've been taking the Bentyl for a few days now. No changes so far, and now I have regular pain in the left side of my stomach as well. I have my MR Entography coming up on January 14, and my endoscopy on January 30, so we'll just keep waiting and see what happens, I suppose. I'm glad they put off testing until after the holidays, but I wish there was some way to ease the pain...it's hard to imagine that I've been in pain daily for almost two months. Yikes! I am grateful that I don't have other symptoms, but yeesh. Still.
 
I am so sad just before christmas and I am in a bad flare I cant stop going with lots of mucus, ulcers everywhere ( if you know what I mean ), I have a rash and terrible joints :( I went to the doctor and he said I may need to have only liquid on christmas day. I feel so bad as I had promised to make a lot of food for christmas and now I don't know if I can and I love to cook, the worst part is I don't think my family really get it ( my husband does just not the extended family ). I just want a break form this roller coaster!
 
StaceyC96 said:
Morning My Lovelies

im kinda nervous today, i had my MRI on tuesday and today im seeing my consultant at 4:30pm for the results, it is a good thing that its come back so quickly im hoping that they have found out what is making so poorly and can get me sorted before xmas

however im worring that its come back so quickly due to not finding anything, i dont know im anixous cos i just wanna get sorted and stop feeling so rough

fingers crossed its a diagnoses and ill be on my way to getting better and getting my life back

stacey
xxx
Click to expand...

How did you get on???
 
Hi just I'd wish everyone a happy and safe holiday! Hope everyone is bearing up and able to have some fun!

I've been doing the usual traipsing backwards and forwards to the bathroom... not good fun on Xmas eve. Plan of attack for tomorrow is to take some immodium in the morning and hope that that sees me through at least a little bit. I was cooking tonight and you know how when you cook you taste things etc - well I had a spoonful of what I was cooking and then had to run to the bathroom. It's like my body is hardwired to hate me at the moment :'(

Ah well, what will be will be I guess.

Merry Xmas,
H :)
 
Hi all

well the MRI came back with no crohns detected in small bowel and biospy came back clear and nothing found in colon

im very confused as i still have all the symptoms and fell no better

the consultant wants me to go see a dietritian to check if its a food intolerence to do a exclustion diet, but there is not much food that dont effect me

i have been keeping a food anyway just to help myself and i have already excluded diary from my diet and still getting the symptoms

is this gonna take months to detect whats wrong as already had a colonoscopy and a MRI
Is there any other tests they can do to find out whats wrong with me

or is it all in my head !!!!!!!

as the pain the blood the bloating the sickness after i eat anything is not right

Thanks a million

Merry Christmas
Stacey
xxxx
 
Oh no - sorry to hear you don't have any answers. Are there other tests that they could do in addition to those you've already had, and aside from dietetic intervention?

So frustrating. I hope you manage to have a lovely Xmas despite all of this going on.... it's a pain in more ways than one.

I think I can shelve any ideas of getting miracle answers myself. It seems like anything to do with stomach/bowel problems are incredibly complex and take a lot of unpicking.

Hang in there,
H :)
 
cheers H

So its a long and painfull road ahead for both i just need to keep going with whatever the consultant wants me to do but im trying to just keep a positive spin on things like dropping 2 dress sizes and being able to get into all my lovely dresses and het i tried on my wedding dress at the weekend and it fits again so win win there

but all the foods i cant eat is frustrating and im concerned that my symptoms are unrelenting and ongoing

im hoping that the dietritian comes back with some answers if not ill be banging on my consultants door for more tests like a endoscopy, pill cam ect
more blood work prehaps

Many Thanks Hunni

Merry Christmas

Stacey
xxxx
 
It's great you're staying positive - best way to be. My game plan is to chow down on immodium as that's the only way I think I'll get through tomorrow.

Still, all will be revealed in time I'm sure. I'm sick of planning my life around where the nearest bathroom is!!

Do make sure you bang on the consultants door for those tests anyway - better to be safe and get a full picture of what's going on :)

H
 
I have few box of immodium at the ready too

and i too have to make sure im near a loo as i have lost my bowels a few times not nice at all very very mortifying

ill be banging on his door after xmas as i cant wait untill feb for a dietitian appointment
unless i pay £300 for a sooner one which i dont have that kind of funds its terrible the waiting list

but ill be on his case in the year!!!!!!

Hope it all goes well tomorrow hun and hope its as compfy as poss for ya

all the best

Merry Christmas
Stacey
xxx
 

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