Undiagnosed Club Support Group

Cat-a-Tonic · Jul 18, 2013

Bozzy, I'm sorry to hear your hips are so bad - must be contagious, both my hips are acting up today as well. The left hip, which is usually the better of the two, is really bad today so I don't know what's up with that. I'm pretty glad I'm having an MRI in a few days! I didn't ask the rheumy about checking my vitamin levels. I think I'm going to ask my GI to do that when I see him on Aug 7th. I do want to get all my vit levels checked - there is still something weird going on with my lips. Cindy had suggested a few weeks ago that red/cracked/peeling lips can be caused by low B6, so I started supplementing that. It helped somewhat for about a week but now my lips are getting worse again, so I really don't know what to think.

Speaking of Cindy, I saw another update from her on her page. And she said it was good news, that the tumor was not cancer!

Yay Cindy! She still will need regular MRIs to check things and see if it's growing back or anything like that, but she won't need chemo or any cancer treatments and the prognosis sounds like it's very good. That was wonderful news, I was so happy for her.

Hopefully she'll pop in the forum at some point soon and can update everyone herself, but I thought I'd pass the good news along right away because I was so happy to hear it.

Straker, that pain sounds horrible, I'm so sorry. Are you on any pain meds, and are they helping at all? Can you call your doctor and let them know what's going on? Do you have any upcoming appointments or tests? Could you go to a different ER than the one you went to the previous times?

Jazij, good luck with the appointment tomorrow. If the doc doesn't mention colonoscopy, I would ask him for one. If he says no, remind him about the bloody stools. And honestly, this is a little gross, but if you have a bloody stool again before your appointment, take a cell phone picture of it and show it to him at your appointment. I have heard others on the forum say that their doctor didn't really take it too seriously when they mentioned passing blood, but when they showed the doctor a photo of the blood, suddenly they were being taken more seriously. So it's gross but usually works from what I have heard! With what you've described, your doctor trying to pass everything off as being caused by the ovarian cyst, it sounds to me like he's not taking you very seriously. Showing him a photo could change that. If he continues to brush you off, I would look around for a new doctor. Blood in the stool is not something that an ovarian cyst can cause! And it's not IBS either.

How's everyone else? I'm having a meh tummy day and a bad arthritis day, lucky me.

I took the day off of work tomorrow though so I will get a nice 3-day weekend. I have some crafts I want to work on, so mostly restful, although tomorrow will involve some walking around, and if I feel like this tomorrow then I'm going to have to use my cane. I hate that! One of the benefits of having "invisible illnesses" is that nobody stares or thinks mean things about me because I look fine from the outside. But when I use a cane, I'm sure people stare and are thinking stuff like I'm too young to need a cane, I must be faking, I look fine so maybe it's just for attention, etc. I feel very self-conscious when I have to use a cane. I have a couple really cute canes, but I hate actually needing to use them. It's also a feeling of, I'm getting worse or I'm letting the illness win or I'm weak because I need this cane. It's just more emotional crap that I have to deal with, you know? I hate it, but there's not much I can do about it.

straker · Jul 18, 2013

I am waiting for the results of many test [they should be ready next week I should know by Friday 25th .whats wrong with me .yes the pain is awful like I have said I suffer with permanent back pain anyway and to have this mesenteric lymphadenopathy pain as well is too much .food makes this worse .many years ago I purchased some silicol .and that helped a lot have you ever tried it ??

lsgs · Jul 18, 2013

Cat-a-Tonic said:
Aw, sorry to hear that, lsgs. Have you been riding your bike at all lately? I ask because I rode the stationary bike in the gym for 30 mins yesterday, but even that short of a ride seemed to cause my leg joints to all get angry - that's what caused my joint pain to act up yesterday evening. It's odd because I used to be able to ride for an hour with minimal/no pain - now I can't even ride for 30 mins without paying for it? Hmph, frustrating. I'm sorry to hear your joints are bad too and I hope they calm down soon!

I rode a few times last week, probably around 2 hours in total.

Normally cycling helps my joints (originally why I started) but perhaps it's gone beyond the mild pain now. I'm so embarrassed limping around my work. I have to use a foot operated pedal and rotate my hip outwards to do it and it's such a pain. Not due to see rheumatologist till October, not that he'll do anything anyway :duh:

PS. I totally get taking the kindle into the bathroom :lol:

Straker that pain sounds AWFUL have they not got you on any pain meds? Are have you tried any?

BluebirdInLove · Jul 18, 2013

Cat-a-Tonic said:
Bluebird, heat does seem to help my arthritis, yes. If it's just my hip that's aching, then I can kind of sit on my heating pad and that helps. I've tried ice on my bad joints but I hate feeling all cold and numb, I much prefer heat. My joint pain was bad last night in multiple joints (knees & hips) so I tried sitting in a hot bath (had to crank the air conditioning first) and that helped a little bit, but not much. The heating pad does more for me than a bath does.

Oh, I can so relate to your comment about your ex-friend. I had a "friend" a couple years ago who said she had Crohn's. She was all about the drama and was a total attention-seeker too, although she seemed like a good, supportive friend otherwise. Eventually though I came to find out that she was a pathological liar and that she actually made up having Crohn's! She wasn't sick at all, it was all lies. Needless to say, that was the end of our friendship, and I cut off all contact and blocked her from facebook. Lately she's been trying dilligently to suck me back into her drama but I'm just not having it. So anyway, I totally understand your complaints about your former friend. My advice is to just cut off all contact, block her from FB etc. My former friend actually tries to send me gifts through the mail - I return them all to sender, I do not open them. I don't acknowledge her at all anymore and I think that must drive her nuts, but it's what I have to do to keep my sanity.

So yeah, I have a few other friends but they mostly live far away (my childhood best friend lives 2 hours away, another friend lives 1.5 hours away, yet another friend lives in Phoenix which is like the opposite end of the country, etc!). And none of my real life friends have IBD or any chronic illnesses, and they tend to just look confused or change the subject when I try to talk about my health, so I'm very glad to have you guys too. I don't know what I'd do without the forum and you guys! You are all the best, I hope you all know that.

My friend is EXACTLY like that or was but she lied about having cancer well she said she used to have it :/

So seems to be my pain is not letting me have a break and neither are people in my life, I've had a HUGE fight with my mum like really bad and when I get upset like badly upset I be sick and not to mention my symptoms get worse. It's been one of those days when you almost wish you had slept the entire day.
I had a big cry and then I made sure I had lunch.

In my stomach whilst in class last night it felt like my whole stomach contracted and flipped? I dunno it was weird. Anyone felt that?

bozzylozzy · Jul 18, 2013

Sorry to hear that bluebird

that sucks.
Xx

BluebirdInLove · Jul 18, 2013

Thanks Bozzy, how's are you feeling? Xx

straker · Jul 19, 2013

re PAIN KILLERS yes I am on a lot of pain killers 120 oxycontin x 2 many days 3 even 4 taken {I am awake for 22 hours a day due to spinal and now abdominal pain } I also have oxynorm 20mg and I can take as many as 10 a day .I know it sound like a massive amount but I have been on it for many years and I am classed as intractable pain [as bad as terminal} .normally the amount I take is a lot lower but since easter when the bowel pain came I needed to increase my requirement .I am wanting to reduced but not a chance right now ..I am used to talking about backs I am on the spine health website and I know almost everyone !! and most things about spines ..I feel a little out of my depth on here ..even though everyone has been very kind ..having spinal pain is bad and it will change your life but having this bowel problem hanging over me and as yet still undiagnosed all they can do is treat with pain killers ..I am hoping that I can be medically managed as I will not survive surgery I am too weak and I could not cope with a colostomy .I am too OCD !!{my respect to anyone that has an artificial bowel opening you are amazing people I don't know how you cope
STRAKER }

bozzylozzy · Jul 19, 2013

Straker.. I can see that you are panicking. And that is understandable. A colostomy is not a common treatment and for many that is a last resort. I really hope you do not have IBD. But.. if you do, there are lots of different medications and combinations that can be tried before a colostomy has to be considered.

We are all undiagnosed on this thread.. we totally understand the feeling lost, helplessness and frustrations. There are lots of tests that can and need to be done in order to get a diagnosis.. and sometimes this can take a long time. For some of us this takes years. To help there also some diet changes you could make to see if it helps at all.. things like the exclusion diet, to find out what your trigger foods are. A lot of people with IBD often cant eat foods that are high in fibre. There are different sections on this site including diet.. please have a look and see if any of those things can ease any of the symptoms for you.

(Forgive me if you have written this already.. I am post surgery and havent been up to date with the thread lol) but what tests have you had done so far? The best test available is the colonoscopy so they can take a proper look and take biopsies.

I hope you can get some answers soon :hug: my journey of investigation has taken 2 and half years and some other member journeys have taken much longer. I the meantime we will help to support you and feel free to vent anytime

xxx

bozzylozzy · Jul 19, 2013

Thankyou bluebird I have been doing much better last 3 days since they changed pain meds

I have a referral for neuro physio as I cant fully move my neck. Struggling to sleep in this heat though.. haha (in true brit style) im still having dizziness.. however I have now started to have mild swallowing difficulties and sleep apnoea

so im a bit worried about that.

I have fallen out with my mum too. Hubby had to tell her to give me some space. Long story short.. she hasnt been to see me at all since my operation. When I told her the surgery date.. which was day before her birthday. She immediately said "I cant come down because I am at work then after having 8wks off" (she had gynae surgery 8wks ago). To which I thought - fair enough.
However I found out the day after my surgery that she hadnt been at work. She had gone all the way to hull (90 mins away) to have a drunken night out with my aunty. All the while I was in intensive care for brain surgery.
Needless to say.. I was devastated. She then called me 2 days later. I wasnt in the mood to confront her.. so I pretended everything was normal. And she continued to lie on the phone.. saying she was tired from being back at work since the day of my surgery.

I honestly dont care now. She is so selfish and doesnt love anyone as much as she loves herself. She lets me down all the time.. and this really takes the biscuit - to choose a night out over seeing her ill daughter. Especially as I am always there for all her hospital visits.
Well im done with her. I cant have her hurt me like this anymore.. and I have my daughter to think about. And I dont want her getting hurt either.
My hubby is so laid back. But after watching this happen over 7yrs.. I have never seen him so angry. And thats why he called her for me.. because I need to recover and cant cope with the stress of her being added into the mix.

Argh.. vent over lol.

straker · Jul 19, 2013

TESTS colonoscopy [virtual] with oral and IV contrast MRI with oral and IV contrast WHITE CELL gamma camera ...various bloods ..normal X rays .SO far they think crohns ,as I have mesenteric lymphadenopathy and thickening of the terminal ileum
STRAKER

bozzylozzy · Jul 19, 2013

Oki doke, so you have had a fair few tests. Because it shows a thickening of the terminal ileum - definitely shows likely to be IBD. The only way to definitively diagnose Crohn's is to have normal colonoscopy to biopsy it and confirm. Looks like you are quite close to a diagnosis then.. have they considered doing a trial of prednisolone/steroids? (Ideally need to have colonscopy 1st so that the steroids dont work too well and mask the signs)
Has your GI said what they want to do next?

BluebirdInLove · Jul 19, 2013

bozzylozzy said:
Thankyou bluebird I have been doing much better last 3 days since they changed pain meds I have a referral for neuro physio as I cant fully move my neck. Struggling to sleep in this heat though.. haha (in true brit style) im still having dizziness.. however I have now started to have mild swallowing difficulties and sleep apnoea so im a bit worried about that.

I have fallen out with my mum too. Hubby had to tell her to give me some space. Long story short.. she hasnt been to see me at all since my operation. When I told her the surgery date.. which was day before her birthday. She immediately said "I cant come down because I am at work then after having 8wks off" (she had gynae surgery 8wks ago). To which I thought - fair enough.
However I found out the day after my surgery that she hadnt been at work. She had gone all the way to hull (90 mins away) to have a drunken night out with my aunty. All the while I was in intensive care for brain surgery.
Needless to say.. I was devastated. She then called me 2 days later. I wasnt in the mood to confront her.. so I pretended everything was normal. And she continued to lie on the phone.. saying she was tired from being back at work since the day of my surgery.

I honestly dont care now. She is so selfish and doesnt love anyone as much as she loves herself. She lets me down all the time.. and this really takes the biscuit - to choose a night out over seeing her ill daughter. Especially as I am always there for all her hospital visits.
Well im done with her. I cant have her hurt me like this anymore.. and I have my daughter to think about. And I dont want her getting hurt either.
My hubby is so laid back. But after watching this happen over 7yrs.. I have never seen him so angry. And thats why he called her for me.. because I need to recover and cant cope with the stress of her being added into the mix.

Argh.. vent over lol.

I'm glad you are doing better even if it sounds just a little

Omg I live in the states now and our Summers are Hot and my air con broke yesterday (as you can tell my day was so great yesterday -___- lol)
So it's like 30c at night!! And like 90 humidity and today it's going to reach maybe 40c. I'm laying on my bed like a starfish haha like someone throw cold water on me now!! Ha

That's well harsh Bozzy

wth is with mums? Seriously I mean when your kids sick aren't they meant to come before you? Aren't you meant to give a damn?
My mum was mad because she is losing her home but she is going to get another and I listen to her all the time and be there for her but then she starts being snobby and hardwork and all I said was that she is getting her rent paid by the council so if say the carpets in her new place need cleaning then why can't she just do it? Well apparently I'm terrible for speaking my mind because the next min she starts bringing up the wedding (she wasn't invited, she was too busy bedding a 28 yr old) and then saying how I have never forgave her because my mum used to abuse me and then she denighed what she did to me which is kinda like adding insult to injury lol apparently I need mental help :/
So now I've blocked her on fb because she started getting abusive. That's fine though, she's missed so much of my life. Her choice at the end of the day.

I just do not understand why people have kids if they aren't going to give one. I vote we send our mums to a desert island and Cats too if she likes, maybe a good idea for yet another reality tv show, "selfish mother island" they can battle it out -____-

It's a good job we have eachother eh?

You're right though, you don't need that bs at all

no need for it, not like your asking much for your mum to just be there for you,

Bozzy how did your pregnancy go with your daughter? In the next two years I hope to get pregnant Xxxx

Oh and just when I thought today would be better my friend just blew up at me and took her problems out on me :/ lol I just will not get out of bed for the rest of the week. Hilarious.

X

bozzylozzy · Jul 19, 2013

Straker - ive just had a quick look at your other posts. I see you had this investigated some years ago and potentially diagnosed with UC? Im not surprised you are frustrated with this coming back into the forefront again

I cant really advise much as ive not had the same history as you. I have a family history of IBS and UC. I was diagnosed crohns a couple of yrs ago and then decided it was my appendix.. however nothing has changed lol.

Bluebird - that is awful. So selfish! And I do hate talking about my mum the way I do, as you only have 1 mum etc.. but when they do this sort of thing, you cant be nice about them can you? Haha!

Im not gonna lie.. my pregnancy was horrible. I lost 2 stone in 12wks due to severe nausea.. awful sweats, pain, big D etc.. however I think my appendix was bit unhappy. During last half of pregnancy, felt a bit better but was diagnosed with ante natal depression. Then after she was born it acted up really badly.. and ended up with a handful of hospital admissions and here I am today!
However I had always had big D and IBS since childhood.. so going into pregnancy I was fine.. and doctors had never suspected any other bowel problems during pregnancy.
So hopefully for you.. your doctors will be more prepared if anything like this happens to you

straker · Jul 19, 2013

its very annoying .because I have been asymptomatic for many years and it was only post ALIF [spinal fusion performed through the abdomen} that symptoms have come back .many years ago I had a spontaneous PR bleed no pain and at the time I was very well and fit and young in my early 20s I have had many normal colonoscopies over the years and it was only due to my not being able to take any of the colon cleansing agents that a 10 year surveillance colonoscopy was cancelled as I was still asymptomatic and well apart for my bad back ..I think that when I see the gastro team {next week ?? I am just waiting for an appointment to get the results from my recent barrage of tests } they will want to do a normal colonoscopy [there are now tables that cleans the bowel and I should be able to take them they care called osmaprep }.so all I can do is wait ..I find the heat very hard work and I spend my life in a dark room with a fan on me in my recliner and its still 28 degrees !! I hate the heat I always have done .I am finding the extra pain very hard work to deal with .years ago they put me on prednisolone and it put 4 stone on me and put me in to water retention so I had to come off them it took many year to get rid of the weight ...but now I am not mobile due to my back ...I also tried asacol and they worked well .the {?UC?} burnt itself out .this {??new??} problem only came on post op ..personally I think that I have had underlying problems since I was a kid hence the OCD toilet remark on an early post /what I meant by that was I have always needed to go in the shower to clean off as I was never happy with toilet paper and if I used ..moist...I used a box at a time so showering was the best thing to do ..as I could never get clean ....my days and nights since easter have been hell all I want are my results and some medical treatment if surgery is needed .then god help me !!
STRAKER

perfectly.frank · Jul 20, 2013

I just wrote a post, and clicked on the send button, but a message came up saying something along the lines of me not being allowed to post in here becos I have written less than 10 posts.

perfectly.frank · Jul 20, 2013

Hymn ... sorry folks ... :shifty:

The previous post I wrote prior to my one above wouldnt go thru, even though I tried sending it at least three times.

Its nearly 11pm on Saturday 20th July here, so will write post about lab tests tomorrow, after sleeping ... :sheep:

From Frankie :kiss:

bozzylozzy · Jul 20, 2013

Hi perfectly.frank - were you posting a link? If so, this will be why it couldn't post xx

cleuger · Jul 20, 2013

Chickadee said:
I've been reading, but not always responding because I often read on my Kindle, which makes responding hard.

I had a rheumatology appointment last Friday, and this rheum is AWESOME! She was extremely thorough, and while she is not sure what my diagnosis is/should be, she seems committed to helping me improve. Bluebird, if you are looking for a rheum, let me know because she is in DC.

A few comments in response to other posts:

*cleuger-- It's certainly possible to have celiac AND Crohn's colitis, but I don't think your doctor would mistake celiac for colitis (if he/she did a colonoscopy), as celiac causes inflammation of the small intestine, whereas colitis is literally inflammation of the colon. Have you had an upper endoscopy?

*perfectly.frank-- It sounds like you have a lot going on! I'm sorry. I can definitely relate to the night sweats. I have soaking sweats, requiring night clothes changes, 2-5 times per night. I sleep on towels. This has been going on for 5 years. I am not well, but I'm also not dead so I hope that encourages you. Seriously, night sweats CAN be a sign of lymphoma or TB, but those are pretty easy to rule out with a chest x-ray and blood tests. Most likely, the night sweats are from a more benign cause. Are you on medications? A lot of medications can cause night sweats. Definitely get this checked out, but try not to worry too much. I know that the night sweats are miserable though. Unfortunately, we have not been able to pinpoint the cause of mine or get them to go away.

*ceej-- I can also relate to feeling like you have a stomach virus that never went away. In the spring of 2008, I thought I had a stomach bug or food poisoning....and never got better. I wonder how many of us had an abrupt start like that? I wonder how many of us DID have a bug that somehow triggered a genetic vulnerability towards an intestinal disease? On the other hand, my cousin, who is now diagnosed with Crohn's, went to the ER with what he thought was food poisoning. The doctors did blood and stool tests, and he was free from virus and bacteria; it was just Crohn's.

*jazij87-- I'm sorry you're having such a rough time. It sounds like you have more than IBS and food intolerances going on, but I wanted to mention that I do really poorly with soy. You might want to try eliminating soy too (hard, I know) and just see if you feel any better. With all of your other symptoms, I doubt that's the only issue, but maybe it would help even a little.

No I haven't had an endoscopy but when they did the lower xrays with the gastroview fluid they were able to see my small intestines and there was a small amount of inflammation he has me on Pentasa because of this.

perfectly.frank · Jul 21, 2013

Hi Bozzy-Lozzy and Everyone Else,

I did put a photograph of the mildew/mould on my ceiling in my post last night, so that is probably why my post wasnt accepted.

Well, as I expected, as has been the case on other occasions over the past several years, my preliminery blood and urine tests came back negative for anything being wrong with me, such as:-

. Diabetes
. Blood Count
. Thyroid Dysfunction
. Inflammation
. Bladder Infection
. Etcetera Etcetera Etcetera ...

I actually couldnt care less about whether or not I have Crohns, I just want to figure out what is causing my saturating sweats and conjunctivitis and sore tummy and headaches and the metallic taste in my mouth over the past month or so.

My Doctor prescribed me a course of Aciclovir (Anti-Viral) and Augmentim (Anti-Biotic) on Friday, and I have been taking the Horse-Sized Tablets (Anti-Biotics) for 48 hours now, and am hoping like hell that tonight I might notice some change in my night sweats.

There seem to be quite a few of you here, who also suffer from night sweats, and some of you have had to cope with them for years and years.

I dont know how you all have managed to stay sane after having had the night sweats for such a long time period, becos the sweats finally got the better of me psychologically after only about a month !!!

At the moment I am trying to keep an open mind to whatever my affliction/disease might be that is causing my saturating sweats and the metallic taste in my mouth and my tender jaw-line lymph glands.

I have decided to focus upon the sweats and metallic taste and painful jaw-line glands, becos they are the only symptoms that are completely out of the ordinary for me, as, whilst I have had night sweats at various times throughout my lifetime, it has only ever been for a week at the very most, and usually associated with a flue virus, and although I have occasionally experienced a metallic taste in my mouth over the years, I have never had it happen to me so often and for so long as has been the case over the past couple of weeks or so, and throughout my life, I have rarely ever had tender jaw-line lymph nodes/glands.

However, the other things I have had wrong with me during the past month or so, such as my sore tummy and distended belly and abdominal discomfort and conjunctivitis and headaches, are all things that I have had several times a year, for as far back as I can remember.

If the horse pills or anti-virals dont work, then I am going to look at the possibility of this old 1920's bungalow being the cause of the night sweats and metallic taste.

Some mildew/mould had grown on my bedroom ceiling over the past couple of months, and I am not sure why that is, becos it wasnt there during the summer months.

I have cleaned the mildew/mould off over the past few days, and brought the dehumidifier from the front lounge into my boudoir, to try and keep my sleeping environment as dry and warm as possible.

Yesterday afternoon, I went under the house to take a look at the plumbing pipes, and it kinda looks like the original water pipes might still be in existence.

Ever since we moved in here last September, I have had to run the cold water tap for several minutes, becos initially the colour of the water that comes out of the tap is pretty much a light brown colour, along with the fact that little bits of stone also come out of the taps into the kitchen stainless steel sink.

Apparently, old lead soldering can leach into a household water system, and the lead can then react with amalgam fillings, causing a metallic taste in your mouth, not to mention, the fact that the body cant get rid of the heavy metals, which then causes a toxic build-up and a multitude of different bad health symptoms and a feeling of general unwellness.

I would be very interested to know if any of you also get a metallic taste in your mouth, and whether you have any amalgam (mercury) fillings.

Have been taking regular readings of my body temperature over the past few days, and thus far my temperature has ranged between 36.1 and 37.4 Degrees Celcius.

I just want to get these night sweats under control, becos the thought of enduring five years or more of them, is horrifying, to say the very least.

From Frankie.

BluebirdInLove · Jul 21, 2013

Wow perfectly Frank, unfortunately I've not really suffered from night sweats and if I have then it was probably a night or two and I defiantly don't get metallic tastes in my mouth.

I understand not caring what it is but just fix me lol I think when you suffer it gets to the point that whatever is thrown at you, you can handle it but not having a definitive diognosis that's just bloody frustrating!

I do hope you get it sorted and get the answers that you're looking for.

X

BluebirdInLove · Jul 21, 2013

Bit random but I found out that Cabot cheeses are apparently lactose and gluton free, I can't eat dairy but I love cheese D: I just thought if people really loved cheese but can't have it then they might be interested lol

http://www.cabotcheese.coop/pages/lactose-free/

perfectly.frank · Jul 21, 2013

bozzylozzy said:
Im not gonna lie.. my pregnancy was horrible. I lost 2 stone in 12wks due to severe nausea.. awful sweats, pain, big D etc.. however I think my appendix was bit unhappy. During last half of pregnancy, felt a bit better but was diagnosed with ante natal depression. Then after she was born it acted up really badly.. and ended up with a handful of hospital admissions and here I am today!
However I had always had big D and IBS since childhood.. so going into pregnancy I was fine.. and doctors had never suspected any other bowel problems during pregnancy.
So hopefully for you.. your doctors will be more prepared if anything like this happens to you

I was very interested to find out that you had severe nausea and awful sweats during your pregnancy, boz-loz, becos I had that for my two pregnancies, from approximately six weeks pregnant, for nearly six months, and I lost about 10kgs in 10 weeks during my first pregnancy, and no doubt about the same amount in my second pregnancy, becos the symptoms were identical.

In hindsight, I should have been hospitalised and put on IV fluids etcetera, becos I couldnt eat anything, and had to force myself to take regular bird-like sips of water, to prevent myself from becoming dehydrated, but at the time I rationalised my illness as "being due to a perfectly normal female physical health condition".

My Obstetrician said that I had Hyper-Emisis Graviderum, and that he could give me anti-nausea tablets, which when he suggested me taking medication for my nausea, I just looked at him, with no doubt a horrified angry look on my face, and I said something like "Have you never heard of Thalidomide !?!".

Looking back on my pregnancy symptoms now, and the symptoms that my body has been displaying over the past month or so, I am starting to wonder if somehow my bodys immune system gets stimulated by "foreign bodies", and it over-reacts by trying to kill off what it perceives to be "an intruder".

Your post bozzie, reminded me that I had terrible sweats during the day and night time during my two pregnancies, and if it wasnt for the fact that I rationalised the nausea and sweats away as just being really bad morning sickness due to pregnancy hormones, then I would classify those symptoms as being like having gastro-enteritis and a cold/flue virus at exactly the same time.

jazij87 · Jul 21, 2013

I've been a little pissed for the last few days. I went to my appointment on Thursday, and he wants me to go and take a stool relaxer for two weeks. After two weeks, then he wants me to come back and see him. If that doesn't work, he said we would do a cat scan instead of a colonoscopy. He said he wants to do the cat scan now to make sure nothing is wrong with my kidneys cuz I have a lot of sharp stabbing pain behind my left rib and lower right side. is" kidney" pain common with crohns?
i don't think I’m going to take the stool relaxers because I am having loose stool again and that would just make my life hell. Plus I think that’s just stupid!I don't know what to think now, maybe I should make an appointment before two weeks and take a picture with me like you said Cat.
The stomach pain is getting worse, I don’t even want to finish taking my chlordiazepoxide because it’s not even working. I’ve been walking up my steps like a 90 year old woman because I’m in so much pain joint wise. There are times I can't move my arm because it hurts so freakin much and becomes really stiff. And on top of all that my job is starting to get annoyed because I request so many days off, and when I do work I most often end up going home early because it’s just too hard to make it through the day especially if I dare eat something. I’m worried about losing my job. All I want to do these days is sleep! But the damn meds keep me up…UUUUGGGGGHHHH so I can’t even do that to calm myself down.

perfectly.frank · Jul 22, 2013

When I initially read the first few words of your above post, Jazi, I thought that you had been driven to drink over the past few days, as a result of difficulties between you and a Doctor.

But, then I quickly realised, you were praps referring to being upset and a bit angry, becos of your recent interaction with your Specialist Doctor, which caused me to smile at my computer screen, as here in Enzed we refer to peep-holes being enebriated, as being, "Pissed" ...

I sometimes have difficulty figuring out the meaning of what folks write or say, in a literal or figurative sense.

End of story ... really ... I guess ... maybe ...

Love from Frankie xox

Ronai · Jul 22, 2013

Cat-a-Tonic said:
Ronai, that sounds a lot like me - I have a lot of trouble making eye contact too. I have a lot of social awkwardness and various other issues which make me suspect I might have Asperger's. I fit a lot of the criteria although I've never been tested for it. Do you have Asperger's or have you ever been tested for it? I know that there's a strong correlation between being on the Autism spectrum & having bowel issues (I know the definition of Asperger's was changed recently so it's no longer considered to be on the Autism spectrum, but even so, Aspies tend to have bowel issues just like Autistics do). I have a suspicion that if I have Asperger's, then that and my bowel issues are somehow linked.

I'm glad you found a doctor who actually listened, that's great! Do you know what blood tests they'll be doing? Keep in mind that bloodwork is not always the most accurate, so if your blood tests come back "normal", don't let that deter you from continuing to fight for a diagnosis. I would ask this new GP for a referral to a GI (gastroenterologist) as well, as they can do further testing such as colonoscopy, scans (CT or MRI), etc.

I've never been tested for Asperger's, but my mum has often mentioned how weird I am and I know a lot of people think I have some problems up top...and they have no problem saying so directly to my face, but I'm not sure ><

I don't know what blood tests they did, all I know is my body wasn't happy with them =( Was only meant to be at the Surgery for 15 mins max...ended up being there for nearly 2 and a half hours as I fainted as I was walking out, only to then be sick numerous times once I woke up >< All in all I'm now terrified of blood tests...

And to add insult to injury, I got my results this morning and the only one that came back slightly off was my iron...and now my mum's pretty much gone; "Oh okay, so you're fine then. Just stick to the omeprazole you've been given and we'll leave it at that" :frown:

I have a follow up in 2 months time, as the doctor I saw said it's IBS from just the blood test, so she just wants me to keep an eye on it and let her know if anything new comes up...

This is getting to be incredibly frustrating and I've only just really gotten somewhere T^T The pain is getting sharper and last night was rather uncomfortable...this "flare" just won't seem to end...its to the point I'm scared to eat anything other than soup encase it causes it to last even longer, and I find soup equals a lot less time in the bathroom after =(
And as per usual, I've had about 2 migraines since this flare started...all of this because I ate a little bit of onion...

It's to the point I honestly just want to crawl into bed and cry =( My entire body just seems to hurt- my ankles, knee's, hips, lower back and now its moving into my chest...I've also found that when the pain gets really bad I find it get's hard to breath; so I then have a panic attack to deal with on-top of the pain ;.;

Is it too much to ask in this world to be born normal and healthy

Cat-a-Tonic · Jul 22, 2013

Hi everyone, wow the club has been busy lately! I'll try to briefly respond to everyone.

lsgs, cycling used to be nice on my hip joints too, even during the winter when my joint pain was pretty bad otherwise. But I think now that the bowels are acting up, the rules have changed. My fitness ability is going down the tubes lately! I did about 30 mins of yard work outside yesterday, and it wasn't particularly hot (we were in a nasty heat wave last week but it's cooled down so it's pleasant again). Even so, I was exhausted and sweaty after only a relatively small amount of yard work. I can still lift weights, but my cardio ability is diminishing and my stamina/energy levels are going down too. It's very odd.

Bluebird, how are you lately? How are the driving classes going? Have you gotten your air conditioner fixed yet? Your ex-friend and mine should become friends together... or maybe not, maybe people like that shouldn't encourage each other!

Wow, I can't believe your ex-friend faked having cancer, that's horrible! My ex-friend claimed she had a heart attack at age 25 (before I met her). She told me it was because she was so fat at the time. But I saw older pictures of her, she was a little chubby but was never obese so I think her heart attack story is fake too. My hubby and her hubby are still friends, so my hubby sees her every so often, and he tells me she's on her way to getting really fat now. She was skinny when we were friends, but now hubby says she's been gaining a lot of weight lately. Time for another fake heart attack from her soon I'm guessing?

Perfectly.Frank, I have sometimes wondered if my house is a contributing factor in my illness too. My house was built in the 1950s and has some mold issues too. We bought the house in Nov 2008, and in Oct 2009 I got sick - so we had only been there 11 months when I first became ill. I'm not sure if that's coincidence or not. My hubby came down with suspicious symptoms similar to mine about 2 years after we bought the house - at first we were afraid that his vomiting & abdo pains were IBD as well, and if so we both suspected the house must be making us sick. Fortunately his illness turned out to be kidney stones (apparently kidney pain can sometimes manifest as abdominal pain) and he's fine now, so I really don't know if our house is involved in my illnesses or not.

As for night sweats, I only seem to get them in a bad flare - and I haven't had them at all in this current flare (or whatever it is! My symptoms are all different this time around!). Even in a terrible flare, I'd only get night sweats for maybe a week tops and then they'd go away. But they were really awful while they were happening, I would be absolutely soaked head to toe. The first time it happened, I thought I must have peed the bed, but I was so soaked and all over my whole body, I realized I couldn't produce that much urine, let alone distribute it so evenly in my sleep!

I feel for you, it's not pleasant. The only trick I've found that helps is to sleep on a towel to soak up a lot of it without soaking the sheets too much. Oh, and if I anticipated night sweats, I would keep spare pajamas next to the bed so I could change in the middle of the night without turning on the lights and waking hubby. I never found a way to actually prevent or stop them though.

Bozzy, that's awful about your mom not visiting you and being basically horrible to you. Your husband sounds like a great guy though and I'm glad he stood up for you. And you sound like a great mom to your daughter, keeping her away from bad influences even if it is your own mother. I'm sorry you have to go through this, but I hope it's helping you stay less stressed through your recovery from the surgery. I must say, I giggled at Bluebird's idea to put all the bad mothers on an island and make a reality show of it. They'd probably like all the attention a reality show brings though so it wouldn't help make them better people!

Oh, Bluebird, you mentioned some lactose-free cheese. Can you do goat cheese? I am lactose intolerant and can't do cow's dairy, but I can do goat cheese without any problem. It's really yummy too! I've tried various "cheese substitutes" like soy cheese, rice cheese, etc. None of them taste very good and they don't melt properly on a pizza, etc. But goat cheese tastes and melts like real cheese does, and it never bothers my tummy. If you haven't tried it yet, look for goat cheese. I'm not sure what chain stores are near you, but I believe Whole Foods carries goat mozzarella & cheddar. Trader Joe's carries this amazing goat gouda which smells strong but tastes mild, it's delicious! Now I'm drooling thinking about cheese, ha ha!

Jazi, did the doctor say why they wanted you to take stool softeners? I know that in some cases, a person can have diarrhea and constipation at the same time, so maybe that's what they're thinking? My understanding is, a hard mass of poo will form, and then diarrhea will like flow around it. If you can clear the hard mass with laxatives, you'll feel better and should have firmer stools because it can harden instead of having to be liquid to get around the mass. (I hope that made sense!) That's the only situation I'm aware of where it's logical to take stool softeners while having diarrhea though, so I would make sure that's what your doctor is thinking.

As for the job stuff, have you applied for Family Medical Leave (FMLA)? You don't need a diagnosis to be approved for it. It is basically a job protection act, it says that you can't be fired for taking off more days than the average person due to having an ongoing medical condition. I think you are allowed up to 90 days off per year with FMLA and your job is protected. I know I couldn't do without FMLA! If there's an HR department at your work, check with them and they should be able to give you the paperwork to fill out.

Oh, and Perfectly.Frank, yes, when an American says "pissed", it means angry, not drunk.

We don't really use that term to mean drunk here in the US.

Ronai, are you able to get a second opinion from another doctor? It sounds like your mother is not very understanding either (me, Bozzy and Bluebird can all empathize with you on that!). I would explain to her that bloodwork is not definitive and is not always the most accurate. Also, what one doctor says is "normal" may be on the very low end of normal or another doctor may say it's abnormal - I would ask for the results on paper so that you can see and do some investigating on what exactly your levels were.

Have you seen a rheumatologist about the joint pain? It could just be pain from the flare - or it could be the start of arthritis. In my personal experience, the earlier you catch arthritis, the easier it is to treat. I went to my GP right away when I started having recurrent hip pains, and he diagnosed mild arthritis and sent me to physical therapy. Because of PT, I had a nice period of a couple of years with pretty much zero joint pain!

You mentioned migraines too - did you get migraines at all before the digestive issues started? I never got migraines - then I got sick with this bowel illness just before I turned 30, and suddenly I was getting migraines all the time. My doctor prescribed 25 mg of Amitriptyline and that prevents most of my migraines - now I seem to only get them once or twice per year, which is wonderful compared to what it was like before. Amitriptyline is an antidepressant in higher doses (100 to 200 mg), but in low doses (10 to 25 mg) it works as a migraine preventative, and it also can "calm" the bowels in some people (not me unfortunately) and can help some people with chronic pain as well. You may want to ask your doctor about trying it.

Did I miss anyone? How's everyone doing today? I had my MRI on my hips this morning. I don't have a follow-up scheduled with the rheumy but I'm hoping he can give me the results over the phone or through email soon. I think the MRI went well - the nurse was an hour late so I had to wait quite awhile to actually have the test, and I did have one moment of claustrophobic panic when they first put me into the machine, but other than that everything went well. I had an MRI of my liver a few years ago, and I had an adverse reaction to the injected contrast at that MRI. This time, I had no bad reaction to the contrast fortunately.

So all in all it went well, now I just get to wait for the results. I'm hoping to have them back before my next GI appointment, which is Aug 7th.

I wonder if anyone has studied the connection between music and MRI/claustrophobia. When they first put me into the machine, it felt like I just kept going in forever - it felt like the way out was too far away and the space was too small and I just wanted to get OUT! But I told myself, I have done this before, I can do it again. I had no issues whatsoever with claustrophobia during my first MRI, so it seems strange to me that I did have an issue with it this time around. But as soon as my music came on, I started to feel much better. I fortunately had the good sense to make a mix CD with mostly calm music on it. The first song was "Take 5" by Utada and it made a world of difference - it's a Japanese song, so I don't understand it but I've read a translation of the lyrics, and it's got a lot of calm imagery, like lying on your back and looking up at the clouds. And that song just made me feel so much better! Calm down Cat, breathe, take 5. You're lying on your back and looking up at the clouds. Take 5. I shudder to think what my mental state would have been if I had put something peppier as the first song on the CD. Would I have panicked more? I really don't know, but the music helped me a lot. I wonder if that's why they let people listen to music - at my previous MRI, I figured it was just to drown out the noises that the machine makes, but this MRI experience has given me more to think about.

mccindy · Jul 22, 2013

I'm back!

hello everyone, after a week and half of healing I made it back. Headdaches are much better and starting to get back to reality. It will be a few weeks of healing up.

I saw CAt did an update at some point for me here (thanks Cat!) My tumor is a WHO grade II (low grade) astrocytoma and the surgeon was able to get 99% of it out. So I get to hae MRIs every three months to monitor for any new growth. There is a chance of that but there are things t ouse if it does happen. Tehy do feel my prognosis is good. Looking forward now to my colonoscopy on August 7th!

ColoradoGrrrl · Jul 22, 2013

Also undiagnosed - just getting the IBS run around - but definitely feel there is something more going on.

I'm 28 and have had GI issues for a few years now, off and on, including a gallbladder removal. This past winter I started having pain attacks that were just wrenching and twice sent me to the ER, odd thing was, the pain was in the same region and felt quite similar to the gallbladder attacks that led me to get it out - only now I have no gallbladder - so why the pain? In addition to this I noticed changes in my bowel habits and started logging my history and my symptoms.

I got the results from my endoscopy today but still no firm diagnosis - just "IBS" . . . but here is why I'm thinking I may indeed have Crohn's (even though I thought it was the least likely, except for cancer, going into the scopes).

Increased risk of Crohn's in European and Jewish ancestry (check)
Increased risk of Crohn's more than 20 years after an appendectomy (check)
Increased risk of gallstones in Crohn's patients (check)
Melanosis coli may be caused by chronic colitis or IBS in absence of laxative use/abuse (check) (I've only ever used laxative 3 times in my life - and not even the kind associated with melanosis coli - it was milk of magnesia and pretty far spaced apart)
Intestinal lymphangiestasia may be caused by Crohn's disease (check)
High platelet counts in conjunction with low iron levels may be attributed to IBD (check)
Chronic gastritis may be a result of Crohn's (check)
Poridge-like (type 6) BMs with steatorrhea (check) (though I get type 7s and tenesmus too though, which is more common in UC)
Recurring knee and hip aches (check)
History of canker sores (check)
Most likely to develop between 15 and 35, I'm 28 (check)
Abdominal pain attacks and more mild cramping (check)
Sores on bottom (gross, I know - but check - I had previously assumed it was related to sitting too much, but now I'm less certain)

My symptoms have been getting progressively better since the winter and have been all but non-existent over the last week and a half, since I went gluten free just before the scopes (and paleo/grain free immediately afterwards).

Cat-a-Tonic · Jul 22, 2013

Cindy!!

Welcome back! I've been checking your caring bridge site every day so I knew that you've been recovering quite well, but it's nice to see you around on the forum too. Sending you a big hug - I hope your recovery continues to go smoothly!

Good luck with your scope and with the MRIs too!

Hi ColoradoGrrrl, welcome to the forum & the club. Colorado is a beautiful state! Nothing is ever TMI on here so don't worry about sharing "gross" details. As for the sores on your bottom, has your doctor said anything about them? They could be something like abscesses, fistulas, or something as benign as hemorrhoids. With the low iron and joint pains, I would also suspect IBD. The fact that you're doing better with a GF diet could indicate that you have celiac, but that's probably not telling the whole story. I don't believe celiac can cause low iron and I'm not sure if it can cause joint pains (it is possible to have IBD and celiac - I hope that's not the case for you). Was there a reason you went GF just before your scopes? If celiac is present, you need to have gluten in your system for it to show up on tests like scopes/biopsies - if you go GF, everything will heal up pretty quickly and you'll look fine on bloodwork and biopsies, even if you do have celiac.

straker · Jul 22, 2013

cindy just reading your post ..WOW you have had it bad girl ..all you need now is major spine surgery !! kidding that's my problem ...,I did not know that on a colonoscopy that they could get to the terminal ileum .that's where my problem is {apparently} I am still waiting for my results too and after 3 months of frantic tests and secret phone calls from the hospital its all gone very quiet .I want my results so I can plan my life I feel like I am on hold ..and coupled with my horrible back pain this bowel issue is killing me ...... rant over !!

ColoradoGrrrl · Jul 22, 2013

Cat-a-Tonic said:
Cindy!! Welcome back! I've been checking your caring bridge site every day so I knew that you've been recovering quite well, but it's nice to see you around on the forum too. Sending you a big hug - I hope your recovery continues to go smoothly! Good luck with your scope and with the MRIs too!

Hi ColoradoGrrrl, welcome to the forum & the club. Colorado is a beautiful state! Nothing is ever TMI on here so don't worry about sharing "gross" details. As for the sores on your bottom, has your doctor said anything about them? They could be something like abscesses, fistulas, or something as benign as hemorrhoids. With the low iron and joint pains, I would also suspect IBD. The fact that you're doing better with a GF diet could indicate that you have celiac, but that's probably not telling the whole story. I don't believe celiac can cause low iron and I'm not sure if it can cause joint pains (it is possible to have IBD and celiac - I hope that's not the case for you). Was there a reason you went GF just before your scopes? If celiac is present, you need to have gluten in your system for it to show up on tests like scopes/biopsies - if you go GF, everything will heal up pretty quickly and you'll look fine on bloodwork and biopsies, even if you do have celiac.

My gynecologist mentioned a sore I had near my perineum a year and a half ago and asked if I got sores like that frequently - I told her that I'd had a few, but I'd always assumed it was from sitting too much while studying (I was in grad school at the time). She didn't do any follow up beyond that and I never figured it was anything more than "bed sores" type problem, until now. (I am overweight, which I know is an unusual though not impossible condition for someone with IBD - esp. for a sugar addict who will "eat" coca-cola if I'm not hungry for real food - but weight I know can also be implicated in sores like that, so that's probably why she and I both took "sitting too much" as all the explanation that was needed)

I went gluten free just 36 hours before my scopes because I was on clear liquids for that time period and only had water and 7up for those days. My results I got today said I had no signs of celiac in my biopsies and I tested negative on the blood panel. I would add that the only minor symptoms I've had since the scans were in the hours after eating a gluten free baked good (homemade so no cross contamination as I cleaned my kitchen thoroughly knowing I planned to return to paleo as soon as my scans were done) - so I'm not sure gluten is the culprit - but rather that grains and seeds might be irritating to my system - even the gluten free ones.

Not that celiac isn't still in the running (it can also cause nutrient absorption, including low iron, as well as joint pain) - it is - but I'm more inclined to think it's Crohn's which, fortunately also seems to be a mild case. But I'm afraid that it might be so mild that I'm going to end up with the "IBS" diagnosis until and unless something major happens. (Like drastically losing a lot of weight).

(Immediately after the scans I though H. Pylori could be it as well - since there was the gastritis and duodenitis that was visually evident - and I thought that might explain my symptoms too - but H. Pylori test was negative. So my chronic gastritis is still unexplained along with the melanosis)

It's all a mystery - but after the attacks that sent me to the ER and the amount of money I've spent on all these tests to find out why - I just really want an answer.

BluebirdInLove · Jul 22, 2013

Cindy: WELCOME BACK!!!!

))

Cat: the one I got was cheddar which naturally doesn't have it in, I think I'm okay with it. Goats cheese is AMAZING I'm praticaly drooling just typing it! Baked goat cheese is awesome too! May give it a try!!!!
Normally when I eat cheese with lactose in I'm in pain though or sick but I have read that goats cheese has lactose in but hey any excuse to be naughty and try it

BluebirdInLove · Jul 22, 2013

Btw I don't know if you guys already know but you can download a free app for your phone called GI Buddy and you can keep a diary of symptoms and food!

x

jazij87 · Jul 22, 2013

during the time I had the appointment I was experiencing a short period of constipation, maybe that was the reason he told me to take it. I just didn't want to start taking it and have more trips to the bathroom then before. I'm just mad that he hasn't given me anything for my joint pain and my constant headaches yet. I've asked several time, but still nothing. he said it's because he doesn't just want to drug me up... which I can kind of understand, but im in so much pain all the time. I guess Ill be in the fetal position in my bed to dull the pain until he caves.

perfectly.frank · Jul 23, 2013

Hi Gals'n'Guys,

Have been on the Horse-Pills (Anti-Biotics) for 4 days now.

No sign of my night sweats lessening in their severity.

I am now looking at three possible causes of my night sweats, which are:-

1. Toxic Mould Ingestion (from my bedroom ceiling over the past few months)
2. Lead/Mercury Poisoning (as a result of nearly 100 year old water pipe deterioration)
3. Adrenal Fatigue (due to almost constant daily stress and anxiety over the past 3 years or so)

All three of the above often have the chronic night sweat symptom associated with them.

I have boz-loz to thank for me adding Adrenal Fatigue to my "List of Possible Suspects", becos she reminded me that I had chronic nausea and sweats during at least the first half of each of my pregnancies.

Until yesterday, I didnt even know where in the body Adrenal Glands are located, but over the last 24 hours I have become somewhat of an Amateur Adrenal Angst Specialist !!! (lol)

One thing I have noticed, since joining here a few weeks ago, is that lots of folks appear to suffer from quite high levels of stress and anxiety.

What I love about this place, is the fact that nobody here has been rude or judgemental towards me or anybody else, whereas, in my real life, I have found that the larger majority of peep-holes I have tried discussing or explaining my weird wacky health ailments to, tend to be quite flippant or harsh towards me, which has generally only served to make my anxiety and stress levels even worse, and to feel even more isolated as a result.

From what I can gather from Doctor Goggle, Adrenal Fatigue is when your body has been subjected to fairly consistent stress over quite a long time period, and your Cortisol Hormone levels are almost constantly elevated, which then causes your Adrenal Glands to kinda shut up shop.

So, I am gonna carry on with my Vitamin D and Multi-Vitamin Supplements that I began taking a couple of weeks ago, and get as much good quality rest and sleep as the night sweats will allow me, and try and get out of the house for at least a half hour walk with my dog Piggles on a daily basis, as well as try not to let my anxiety rule my life so much and to keep my stress levels as contained as possible.

Apparently it can take months and months, if not years, to bring your Adrenal Glands back to normal, however, it can be done, and I will be very interested to see if by focusing upon taking care of my Adrenal Glands, my night sweats start to dissipate.

I got nothing to lose, and everything to gain.

Has anybody else in here ever been diagnosed with Adrenal problems ???

From Frankie.

Lenatilde · Jul 23, 2013

Hi all you lovelies

Welcome back mccindy!

:hug:

Very short post to send you all loves.
I'm not in a good space (long story... Unsuccessful colonoscopy yesterday, and with added bonus of big earthquake just as I was about to start prep. All in my other thread).

But, hugs and love to you all - including all you new folk: welcome! :ghug:
xLT

Ceej · Jul 23, 2013

Cat-a-Tonic said:
Hi Ceej, welcome to the forum. As we sometimes say, I'm sorry you had to seek us out, but I'm glad you found us. Your story sounds a lot like mine, I felt like I got a stomach virus in Oct 2009 that never really went away. And my scopes and scans were all normal too. And I lost weight unintentionally as well, even though I would desperately scarf as many calories as I could when I was feeling well enough to eat - even with that effort, I lost about 20 lbs in a year. So our stories are quite similar!

You've mentioned a couple possibilities and I think both have merit - asking for more tests or trying a steroid trial. Personally, more tests only gave me more "normal" results, although there are more tests for you to try, so it may be worth looking into. Have you had the pill cam done yet? It's also known as capsule endoscopy. That's the one where you swallow a small pill-shaped camera and it takes tens of thousands of photos throughout your digestive tract. The big benefit of pill cam is that it sees the entirety of the small intestine, whereas the colonoscopy & upper endoscopy can only see the very beginning & very end of the small intestine. The pill cam can't take biopsies, and if you have a slow-emptying stomach then it may run out of batteries before it sees everything, and there's something like a .01% chance that it'll get stuck (if you're worried about that, you can do a dummy capsule beforehand, which will dissolve if it gets stuck). That's the test I'd ask for if I were in your shoes.

The other option, a steroid trial, was the better option in my experience. Prednisone (I think it's called prednisolone in the UK) is the one I asked to try. It only works on inflammation, so in other words, it wouldn't work on IBS. Meaning that if it works for you, any doctor worth his salt will rule out IBS and will concentrate on other possibilities (IBD such as Crohn's/colitis, but also possibly things such as Lupus or Addison's as those can also cause gastro-type symptoms and will respond to prednisone). In my case, I'm still undiagnosed, but I responded really well to pred, so my doctors stopped focusing on IBS. My doctor then ruled out Lupus and Addison's and a few other things, so basically I now have presumed IBD based on the meds I respond to, my symptoms, and the things we've ruled out. It's not a proper diagnosis, but I'm getting proper treatment and did really well for about 2 years (I'm flaring up again within the past couple months, so it might be time for another colonoscopy for me).

Keep in mind of course that that's just my experience and yours may vary. But given that our stories are similar, I felt that sharing my experience might be worthwhile to you. I wish you luck with whichever route you pursue! Please keep us posted on what you decide and how it works out for you.

This was really helpful, thank you. My specialist has referred me for a capsule endoscopy, as he thinks I have inflammation in the terminal ileum that was missed by the MRI and colonoscopy. It should be very soon. In the meantime, I am on Questran Light as he thinks these problems are causing bile duct malabsorption. Even if the capsule doesn't pick it up, he's likely to continue along this diagnosis and I should get steroids if the other medication doesn't relieve my symptoms.

I've had a good few days (for me) and I haven't had a disturbed night for a week or so. I've had too many let-downs to get too hopeful, but I am not despairing so much!

Thanks again. The support has been much appreciated.

Cat-a-Tonic · Jul 23, 2013

Bluebird, I'm lactose intolerant too, but it seems that only cow's lactose affects me - I'm not sure if goat lactose is significantly different or what, but I can eat it just fine without any problems. I would say give it a try and see if it affects you or not.

Colorado, do you take anything for the gastritis - anything like prilosec or Zantac? I have severe GERD which can in turn cause recurrent bouts of gastritis, and I have to take a lot of reflux meds and antacids to keep all that under control. Fortunately in my case, as long as I keep the GERD fairly well controlled, the gastritis stays quiet too. But I feel for you, gastritis is pretty awful.

Oh, and you're definitely not the only overweight person with (potential) IBD. There was recently a whole thread dedicated to overweight Crohnies here:
http://www.crohnsforum.com/showthread.php?t=52334

Ceej, I'm glad to hear you're having the capsule endoscopy soon, please keep us posted on how it goes. It was one of the easier tests I've had to do - I did have to drink some prep beforehand to get fairly well cleaned out (I only had to drink 1/2 the normal colonoscopy amount) but the test itself was literally just swallow a capsule, wear a belt with the recording device on it, and wait! (You have to return the belt to the hospital, but you do not have to return the capsule.) I'm glad you have the Questran in the meantime and will go on steroids potentially in the future - sounds like a good plan to me!

I like reading stories like yours, you're actually being taken seriously by your doctors and are getting appropriate tests and medications and are feeling better - that's wonderful! That's what should happen for every undiagnosed person!

Frankie, I'm not sure if Adrenal fatigue is the same thing as Adrenal insufficiency (AKA Addison's disease)? I was tested for Addison's, it's a fairly simple blood test although it takes a few hours. You may want to ask your doctor about it. Here's a link with more info about the test to check for Addison's:
http://en.wikipedia.org/wiki/ACTH_stimulation_test
I know that Addison's can cause a lot of Crohn's-like symptoms (diarrhea, weight loss, fatigue, etc) and it responds well to prednisone, but it's a fairly rare illness and not a lot of doctors know about it, so many don't think to test for it. My GI had me tested for it since I had such a good response to prednisone, although I tested negative for Addison's (but at least I got to rule it out). It's worth looking into especially as it's an easy test to have - no prep involved, you just have to sit there and have your blood taken every hour or so for a few hours to see what your cortisol levels are doing.

Or if I misunderstood, the opposite of Addison's is called Cushing's disease, which is too much cortisol as opposed to too little. I'm sure there's a blood test for that as well although I haven't had that one (usually weight gain is seen with Cushing's and weight loss with Addison's - I tend to lose weight so I was tested for Addison's). Check with your doctor and see what blood tests you can line up - at the very least, you can rule a few things out!

Lenatilde, I saw your other thread about the earthquake happening just as you were about to start prep! Oh my goodness, I hope everything is okay and that the earthquake wasn't too bad. I live in a part of the US that does not experience earthquakes so I've never been in one, but it sounds terrifying. I know NZ has had more than its share of earthquakes in the past few years, so I'm very sorry to hear you guys had yet another one. I'm sorry to hear the colonoscopy was not fruitful either, that's very frustrating. What's the next step for you? Are you pushing for more tests?

Jazi, it sounds to me like you need a new doctor. I can understand a doctor not wanting to hand out pain pills or whatever, but you clearly need more help than he's willing to give! Don't give up, find another doctor and get another opinion. Don't just curl up in pain and hope your doctor pays attention to you, because he won't. You need to fight and be your best advocate - and we are all here to support your fight!

Go find another doctor who listens.

ColoradoGrrrl · Jul 23, 2013

Re: night sweats - I've read that can be a symptom of lymphoma, which can also cause GI issues and abdominal pain. Don't know if that's something you've looked into or not, but it might be worth mentioning to your doc.

Re: gastritis - I actually don't take anything for it. I'd never felt symptoms of heart burn or anything, so that finding was actually somewhat surprising to me. My symptoms were primarily diarrhea with urgency and tenesmus 2-3 times per day 4-5 days per week. And then the pain attacks that sent me to the ER and finally got the ball rolling towards a diagnosis. I've been making lists of possibilities that I want to be sure the doctor is including in the differential diagnosis - so that even if they say it's IBS right now, they, hopefully, are taking it also as a watch and wait type thing so that if symptoms come back and/or get worse then they can start to look deeper into the cause right away, picking up where we've left off instead of doing months of more tests starting back at square one.

In the meantime I'm eating SCD paleo, trying to get regular slow movement for exercise (like walking to work every day and yoga a few times each week) and reduce stress, especially emotional stress. I feel that doing that should help my overall health regardless of what the official diagnosis is.

Cat-a-Tonic · Jul 23, 2013

Colorado, even with my severe GERD, I very rarely get heartburn. I sometimes get heartburn if I eat fried food (which I typically avoid) or if I eat/drink something VERY acidic (I drank 2 glasses of orange juice recently which did give me heartburn for about an hour). Even though I'm pretty much refluxing constantly, getting actual heartburn symptoms is rare for me - I feel "stuff" (food, water) come up my throat all the time, but it doesn't give me a burning or pain sensation. It's very odd! So long story short, even if you don't get heartburn, you may still want to try a short run of something like prilosec or zantac and see if that helps the gastritis at all, because it is definitely possible to have GERD without heartburn, and GERD can in turn cause recurrent gastritis. And for me, gastritis can in turn cause wicked diarrhea, pale stools, awful nausea, and of course stomach pain. It's not a fun cycle once it gets going and it sometimes is difficult to decipher whether my symptoms are from the GERD, gastritis, IBD, something else, etc. because they can all cause similar symptoms.

I'm glad to hear you're exercising - I feel like that's one of the most important things to me too. I agree that regular exercise significantly reduces my stress and helps my emotions regulate - in previous flares, I'd get seriously depressed and sad, but so far in this flare I still feel pretty chipper, and I am fairly certain that I have exercise to thank for that.

You're doing yourself a world of good each time you exercise - not only mentally, but physically too. Having an illness like this can rob muscle & bone mass, and being on certain meds (like corticosteroids such as pred) can also rob muscle mass. I've read that working out can help relieve physical pain as well (I think it was something to do with endorphins?). So yes, I'm rambling again, but you're benefitting yourself in numerous ways by getting regular exercise.

In case you can't tell, I'm a huge advocate for exercise because it's done me so much good - for my guts, for my arthritis, for my mental well-being, for my physical well-being - it's made me stronger inside and out.

Cat-a-Tonic · Jul 23, 2013

Warning, angry vent ahead!

I got a call a little while ago from my rheumy's nurse. At first I was excited because she already had my MRI results! The MRI was only yesterday, so that's fantastic that the results are ready so quickly. But of course, she said the results didn't show any inflammatory arthritis. She said the rheumy's recommendation is to go back to physical therapy and to follow-up with him in a few months.

That's the part I have a major problem with - going back to PT. I went to PT in the spring of 2011. Don't get me wrong, I did great, it helped me a lot, and it was the push I needed to start lifting weights and doing other forms of exercise. I loved my physical therapist, she was fantastic. Physical therapy got me so much relief, and I spent close to 2 years with no arthritis pain whatsoever. The hip pain only came back over this past winter.

So I guess this is my issue. I told the rheumy's nurse that I had already done PT and it gave me good relief but it no longer is enough. Her response? "If you don't do the moves with precision, you could be doing yourself more harm than good - maybe that's why your pain is back." Wow, could you be more condescending?? Yeah, I'm just flailing about and exercising all wrong and that's why I had 2 years pain-free. #$%&*@!!! Seriously?? Because logically it seems to me like my arthritis has worsened and exercise alone is no longer enough to keep it under control - call me crazy but "it's progressed" makes more sense to me than, "you're doing it wrong." That's insulting and I am not doing my exercises wrong - when I lift weights, I use the machines and I try very hard to get the correct form. When I do other exercises, I try to watch myself in the mirror so that I can be relatively sure I'm doing it correctly, the way my physical therapist showed me the first time around. Urgh!

So, basically I got upset and told the nurse I'm not going back to PT because that's insulting - I've been compliant and I don't need to go back to PT and I'm not freaking doing it wrong. I told her I would like to see the rheumy again to discuss this - he seemed like a reasonable doc so I'll give him a chance to talk this out and see if he offers me other options. She scheduled a follow-up appointment in 2 months, so at least that'll give me some time to stop being quite so upset about this. He did say at my first appointment that I'm "too young for this to be osteoarthritis" so I'll be interested to hear what his exlpanation is for my pain if it's not inflammatory arthritis and it's not osteoarthritis. If he says I'm fine or offers no answers/solutions, I will drop him as a doc.

So yeah. I'm upset about having yet another normal/non-conclusive test result, and I'm upset about the condescending "solution" to the problem. I'm upset that I still don't have this piece to the puzzle and that there's not an explanation for my gradually worsening pain. I'm upset that I can't go for even a 5-minute jog without terrible pain but nobody can tell me why. I'm upset that I had to have an MRI, and have to pay whatever my insurance won't cover, for basically nothing.

To top it off, I was having a bad day anyway. I have been really fatigued today and not sure why - I got a good 8 hours of sleep last night, didn't dream nor toss & turn that I can recall. But I'm exhausted. And people keep asking me if I'm feeling okay - I guess I must look like crap. I looked in the mirror and I am a little more pale than usual, but I don't think I look awful. But people are making me feel self-conscious by asking if I'm okay, I'm exhausted, and now I'm frustrated and insulted too. I'm just feeling blah and upset. This is one of those days where I just should have stayed in bed.

Sorry that was so long. Thanks for reading and thanks for attending my pity party.

I think I need to have party hats and banners and stuff for this pity party! Would anyone like some pity cake?

Sunnybs · Jul 23, 2013

I am so glad I found this group! I have been sick for 10 years! Originally my dr thought it was a spastic colon. He would give me cipro and prednisone every 6 months or so and it seemed to help. Went thru 2 pregnancies with no major changes. The symptoms were really just an irritation. After the birth of my second daughter things got bad. I went round and round with the drs and finally ended up having my gall bladder removed. It seemed to help with the vomiting some but the cramping, nausea, diarrhea etc was still there. Another bad episode and back to the dr I go. I go thru all of these tests with a urologist because i have so much blood in my urine. they find nothing wrong with my bladder, urethra or my kidneys. Just a small cyst on my tight kidney. Normal, no big deal. Some women just have lots and lots of blood in their urine says the urologist. Still having the intense crampy feeling around my right side. Back to the dr. She says I could be having phantom pain from my gall bladder surgery! Phantom pain?! It feels very real and knocks me down for several weeks. So she sends me for an ultrasound bc she thinks its related in some way to my reproductive organs. I end up having a hysterectomy. And because I have so much pain concentrated on my right side my obgyn removed my right ovary as well. That was in February. I have felt ok since then until recently. Back to the same thing. Bad diarrhea, intense pain on my right side etc. So I go back to the dr. She says because of where the pain is she has to rule out appendicitis! Well it's not appendicitis. But I still don't know what IS wrong with me! So I'm going back to the dr tomorrow and demanding to be sent to a gastroenterologist! Something is wrong and I suspect it's some form of ibd but I don't have weight loss and I don't have visible blood in my stool...idk I'm not a dr and I'm tired of them trying one thing after another and never actually fixing my problem! After all of the surgeries I've had in the past 4 years the only thing left on my right side is my intestines! Praying for an answer!!

Cat-a-Tonic · Jul 23, 2013

Hi Sunnybs, welcome to the forum and the club.

A couple things jumped out at me from your post. First of all, spastic colon is another term for IBS - and IBS does not respond to prednisone (pred only works on inflammatory conditions - so it does work on IBD/Crohn's/colitis). I'm surprised they gave you pred so often if they truly thought it was IBS, that doesn't make sense to me. The fact that pred worked for you means it's very likely not IBS.

You also mentioned not having weight loss nor visible blood in the stool. Not everyone with IBD loses weight - some even gain weight in a flare! We're all a little different, so don't let them say that you don't have IBD just because you don't fit the "textbook" symptoms. (Although sadly, those of us who don't fit the textbook symptoms seem to have a much harder time getting a diagnosis.) Personally, I lost weight through my first handful of flares, then I had a nice long remission, and now I seem to be flaring again - but this time around, my weight is staying put. I'm not losing and not gaining either, it's very odd. Anyway, long story short, your weight isn't necessarily indicative of it being IBD or not. Same with blood - I was never a bleeder until this current flare (another thing about IBD is that it seems things can change a lot from flare to flare!). And you can pass blood in your stool without it being visible - I believe that's called occult bleeding, and there are stool tests to check for it, so you may want to ask your doc about that to be sure. If you have low iron levels then it's likely you may have occult bleeding going on, so you could have a blood test to check your iron as well.

You sound like a take-no-nonsense kind of girl and that's the right attitude to have with an illness like this. I'm glad you're not accepting "phantom pain" as the cause, and I'm also glad to hear you'll be demanding to be referred to a GI. I hope they can get you in to see a GI quickly, although for me I think it took about a 3 month wait to see my GI for the first time. While you're waiting, you can ask your primary care doc for blood & stool tests. If you haven't already had these checked - for bloodwork, I would ask for CRP and ESR (inflammatory markers in the blood), a CBC (complete blood count), and for your vitamin levels to be checked. Specific vitamin levels that are commonly low in Crohn's include B12, D, iron, and folate, so if you can't have all your vitamin levels looked at, at least ask for those to be checked. For stool tests, you can ask that they check for bacteria (such as salmonella, campylobacter, c diff, etc) and for parasites, just to rule out any type of infection like that. I'm not saying you have a bacteria or a parasite, but it's a good idea to rule out stuff like that before you get into the more invasive tests like colonoscopy.

Good luck with your appointment tomorrow! I hope that it's worthwhile and that you get a referral to a GI. Keep us posted on how it goes! And again, welcome.

PiratePantaloons · Jul 23, 2013

Hi I'm new here and this is my first post. A neighbor of mine has UC and has been struggling. In passing I mentioned I understand having bathroom issues... its why I can't gain weight she said I should look up UC so I did unfortunately/fortunate? I found that I have most every symptom of crohns(which I think subconsciouslly I have been avoiding) This is a long story, I will try to summarize. First I am here trying to work up the courage to call my Dr. I am 33. When I was 20 I started getting stomach cramps when I ate late at night, I should have went to the dr. Then but I tried to tuff it out. It was excruciating I think I ending up pasing out from pain. I woke up feeling fine so I went about my day and ignored it. Fast foward a year after this pain became progressive worse I.e. during the day, puking up bile, constant gas bloatng, embarrasing D. Trips to theER several(I didn't have insurance so I was sent home told it was gastritis and given heavy pain killers) finally after loosing 25 pounds not being able to eat any thing and showing up in er puking bile and blood uncontrollably they decided to treat me. Explained that I had gullstones and my gullbladder was infected and risk of rupture. They still couldn't treat me because I had no insurance and said its not life threating until it ruptures, but an angel of a surgeon made it happen. I was happy to be able to eat again after the surgery and tried to get back to normal life. No iinsurance. = no health care. I still have D gas bloating pain. Things have just gotten worse. I can't leave my house without thinking about if I have had or will have a BM? How is my tummy feeling? Will there be bathrooms?(which is ahuge deal because I sever anxiety about using public restrooms... which ends up causing me pain and a ruined day) I have been to the ER recently because of stomach pains(worse than natural childbirth... i would do that anyday over this)late at night. Last time I didn't stay to see dr. Because the triage nurse gave me some kind of antacid that made me feel better and I didn't want to waste the drs time. I did talk to my dr. About this hoping she could prescribe me that antacid incase it happened again or something that would help me digest my food, because it all goes right through me. The minute I eat my stomach starts in on me and I'm in the BR. She blew me off. Probably because I was in there for this intense itchy rash that I can't get rid of(sound familar?) And the arthritis like symptoms in my hips... I did get steroid injections for hips, which have helped. To sum up. I have food sensitivity to everything practically. Main food adversions are anything greasy, raw veg, Raw fruit, dairy dairy and dairy, proteins like beef and especially eggs. I have had way to many closed calls to count. EEverything goes right through me. I can't gain weight no matter how much I change my diet. I have battling fatigue for years and I am an extremely active person, its maddening. I have night sweats for the past two years. Sometimes things come out like a pencil(I know gross) and the bloating and gas can be pretty painful. I have found blood in my stool, but blew it off. If i do too much one day im down for two. I have been on prednisone in the past for the itchy skin and I loved that I could eat but hated how angry it made me, I am now terrified of the stuff. My anxiety about going to the drs is why I wrote this. I know I need to go, but I wonder if my dr. Will even hear me. I really don't want this to be it, but it all fits. Just reading some of the post here and i just keep saying "thats me" over and over. Kind of sad now. Sry for the mis-spellings and bad grammer, I'm doing this from my phone.

Lenatilde · Jul 23, 2013

Cat-a-Tonic said:
Warning, angry vent ahead!

So yeah. I'm upset about having yet another normal/non-conclusive test result, and I'm upset about the condescending "solution" to the problem. I'm upset that I still don't have this piece to the puzzle and that there's not an explanation for my gradually worsening pain. I'm upset that I can't go for even a 5-minute jog without terrible pain but nobody can tell me why. I'm upset that I had to have an MRI, and have to pay whatever my insurance won't cover, for basically nothing.

To top it off, I was having a bad day anyway. I have been really fatigued today and not sure why - I got a good 8 hours of sleep last night, didn't dream nor toss & turn that I can recall. But I'm exhausted. And people keep asking me if I'm feeling okay - I guess I must look like crap. I looked in the mirror and I am a little more pale than usual, but I don't think I look awful. But people are making me feel self-conscious by asking if I'm okay, I'm exhausted, and now I'm frustrated and insulted too. I'm just feeling blah and upset. This is one of those days where I just should have stayed in bed.

Sorry that was so long. Thanks for reading and thanks for attending my pity party. I think I need to have party hats and banners and stuff for this pity party! Would anyone like some pity cake?

:hug:

Cat, I would love some pity cake - I would share it with you in an instant

it's miso, udon noodle and ginger based, right? Cos that's all I can eat, so...

I definitely feel your pain, m'dear. Such a frustrating experience, after an extended frustrating time!

I got to the point last night where I decided I knew better than the medical profession, and decided to figure it out for myself. The weird thing about that was that my husband (a total scientist, who spends his days researching the health sector and believing in all things 'science based') agreed with me. Which is not to say I'm not still pushing for answers - and my GI and GP are not scared to keep looking. I just think they're looking too narrowly... Next step for me is most likely that they will look higher up the tract (you know, where the pain is..) in the first instance. GI is still thinking crohns, especially with the (now significantly slowing) weight loss.

But enough about me - lovely Cat; you know we are all here for you, like you are always here for all of us. And don't listen to those people who are implying you look less than wonderful - I reckon you're looking great!

[ooooo... Another aftershock...btw, everything is ok, thanks - just scary as all get out, with the scaremongering media hyping us all into a frenzy of an even bigger one ahead. Boo the media... We are right on a major fault line; it will happen at some point. I just don't want it to happen when I'm on the toilet, or have a dude looking up me arse]

Now, I've brought you this dancing banana - no pity party is complete without one!

:dance:

And you take care, you caring soul. :kiss:
XxLT

perfectly.frank · Jul 23, 2013

Cat ... I am sorry to hear about you have received yet another inconclusive/negative test result. Keep your chin up chick, becos one day you will get the answers you crave, and you never know, the folks in this forum might figure out what is wrong with many of us, becos the answer might end up being so simplistic, that it was right in front of our noses the whole time. Thanks for the info about the Adrenal tests. I am pretty sure that in my particular case, the 3 years of almost constant stress, could have caused my cortisol levels to be permanently raised, which might have caused my Adrenal Glands to finally kinda "Hit a Brick Wall and Give Up the Ghost". Over the past few weeks, I have decided that whenever I have any tests done in the future, I am gonna start steiling myself up in advance, that my tests results are not going to shed any light on my health ailments, becos, in theory, that way I will hopefully feel less disappointed when the test results come back inconclusive/negative, and if by some miracle one day a test comes back conclusive/positive, then I will be jumping for farking joy, and dancing around the house singing "We Are the Champions" by Queen !!! (lol).

Lena ... Do you live somewhere down the bottom of the North Island or top of the South Island ? My thoughts and prayers are with you, so keep yourself as safe as you possibly can, becos I saw on the midday news just a little while ago that the Public Trust building has just been deemed unsafe for human co-habitation.

Last night, I am pretty sure that I didnt have any night sweats. However, I took a Lorazapam at about 8pm before going to bed, and I havent taken a Lorazapam for about six weeks, since going on a different night time medication to help me with my lifelong insomnia problem. Could be just a co-incidence that the one night since I started getting these horrific night sweats, that I took a single Lorazapam anxiety tablet, was the exact same night that I didnt experience any night sweats. Either that, or I slept so soundly, just like a baby, that I still had the sweats, and somehow my jarmies and bed linen managed to dry themselves off, which they have never done ever before. So, I am thinking that maybe the anti-anxiety tablet had some sort of chemical reaction within my body, or praps more particularly on lowering the amount of cortisol and/or adrenaline hormones in my adrenal glands. Might try taking another Lorazapam tonight, to see if by some sort of miracle, I have two nights in a row, without night sweats, becos I havent had two nights in a row without sweats, for at least five weeks or so.

Of course, it could be that the giant horse-pills (anti-biotics) might have finally taken hold on an infection in my body, or that the multi-vitamins and cal.d.forte have kicked in and started having a positive healing affect on my body.

Only time is gonna tell, but I am not giving up on trying to find out the cause of these night sweats, becos, I am positive that if I can get rid of the night sweats, then the rest of my ailments/symptoms will also disappear too.

Let it not be said, that I am not "The Princess of Positivity" :queen: (lol)

I am just "So Sick and Tired ... of feeling ... So Sick and Tired", and I want nothing more than to feel something resembling "Normal Health".

jazij87 · Jul 24, 2013

cat your right I have to be an advocate for myself, it's just sometimes I just lose sight of that because I have been fighting so long. I will be looking for another doc.

I can relate to the comments about weight being something most docs want to check off on their list of text book symptoms. I personally have had both weight loss and weight gain off and on. I would lose weight some flairs and gain for others. this is the main reason my current doc was so instant on diagnosing me with IBS, but all my other symptoms don't fit that. I guess sometimes they just ignore what your telling them and hear what they want. I honestly think the only rason my doc finally started talking about doing a cat scan, was because I had a sharp pain in my kindy area while I was in his office...but he told me to wait two weeks??? so steps forward and steps back.

I will have to see what my state insurance will allow me to do in matters of picking a new provider

sad to say im afraid I might be stuck with him.

oh and bluebird cat is right about goats milk. a lot of people who are lactose intolerant like you, cat and myself tend to have a better response to goats milk. It contains a different type of milk sugar that is a lot easier to digest. you could also always try daiya cheese it is so good. I work at a organic food market and one of my co works told me about this cheese.

Ronnie- I don't know where you live , but if you live in the states check to see if they have local collages that have a clinic. I live in Maryland and while I was at school in Towson, there was a clinic located on campus where they would evaluate you for things like Asperger's, ADD,ADHD, and so forth. I was diagnosed with Asperger's about 3 years ago there. I was initially there for an official ADHD diagnosis because it was getting in the way of school, and well I got two for one. I have a lot of social awkwardness and as my friends say rituals that I do. I nearly have a panic attack if I have to look someone in the eyes, I often say things that hurt peoples feeling( not purposefully, but it happens ), I'm very sensitive to sound, light, and texture, and many more things. my mom said it made since when I told her and she compared my result to the internet descriptions. most of the time if you go there for a diagnosis it is very cheap or if you go there it could be free.

Lenatilde · Jul 24, 2013

perfectly.frank said:
Lena ... Do you live somewhere down the bottom of the North Island or top of the South Island ? My thoughts and prayers are with you, so keep yourself as safe as you possibly can, becos I saw on the midday news just a little while ago that the Public Trust building has just been deemed unsafe for human co-habitation.

Last night, I am pretty sure that I didnt have any night sweats. However, I took a Lorazapam at about 8pm before going to bed, and I havent taken a Lorazapam for about six weeks, since going on a different night time medication to help me with my lifelong insomnia problem. Could be just a co-incidence that the one night since I started getting these horrific night sweats, that I took a single Lorazapam anxiety tablet, was the exact same night that I didnt experience any night sweats. Either that, or I slept so soundly, just like a baby, that I still had the sweats, and somehow my jarmies and bed linen managed to dry themselves off, which they have never done ever before. So, I am thinking that maybe the anti-anxiety tablet had some sort of chemical reaction within my body, or praps more particularly on lowering the amount of cortisol and/or adrenaline hormones in my adrenal glands. Might try taking another Lorazapam tonight, to see if by some sort of miracle, I have two nights in a row, without night sweats, becos I havent had two nights in a row without sweats, for at least five weeks or so.

I'm in Wellington

Thank you for your kindness.

I live close to the city, and on Sunday night we were staying in a hotel in the CBD for my prep for the colonoscopy on Monday (someone else cleaning the bathroom, warmer than an 1860s historical cottage with what can only be assumed is original heating...). We were hearing reports of CBD being in lock-down and we were all 'um, weird... we're in the CBD and everything seems kinda ok'. My husband popped home on Monday to check on the cat and the house - we have books and all manner of things precariously on many shelves, but absolutely everything was fine. Cat happily in bed, sound asleep. Rather a surprise, actually.

My work building was closed for a couple of days and my husband's is still closed (will be for the rest of the week, apparently...). he is in the old government buildings, where the law school at vic uni is. So we both have had to work from our cold house! Fire is lit, though, and hats and gloves are on.

excellent stuff on the soundly sleeping - yay! long may it last

x LT

Lenatilde · Jul 24, 2013

PiratePantaloons said:
Hi I'm new here and this is my first post. A neighbor of mine has UC and has been struggling. In passing I mentioned I understand having bathroom issues... its why I can't gain weight she said I should look up UC so I did unfortunately/fortunate? I found that I have most every symptom of crohns(which I think subconsciouslly I have been avoiding) This is a long story, I will try to summarize. First I am here trying to work up the courage to call my Dr. I am 33. When I was 20 I started getting stomach cramps when I ate late at night, I should have went to the dr. Then but I tried to tuff it out. It was excruciating I think I ending up pasing out from pain. I woke up feeling fine so I went about my day and ignored it. Fast foward a year after this pain became progressive worse I.e. during the day, puking up bile, constant gas bloatng, embarrasing D. Trips to theER several(I didn't have insurance so I was sent home told it was gastritis and given heavy pain killers) finally after loosing 25 pounds not being able to eat any thing and showing up in er puking bile and blood uncontrollably they decided to treat me. Explained that I had gullstones and my gullbladder was infected and risk of rupture. They still couldn't treat me because I had no insurance and said its not life threating until it ruptures, but an angel of a surgeon made it happen. I was happy to be able to eat again after the surgery and tried to get back to normal life. No iinsurance. = no health care. I still have D gas bloating pain. Things have just gotten worse. I can't leave my house without thinking about if I have had or will have a BM? How is my tummy feeling? Will there be bathrooms?(which is ahuge deal because I sever anxiety about using public restrooms... which ends up causing me pain and a ruined day) I have been to the ER recently because of stomach pains(worse than natural childbirth... i would do that anyday over this)late at night. Last time I didn't stay to see dr. Because the triage nurse gave me some kind of antacid that made me feel better and I didn't want to waste the drs time. I did talk to my dr. About this hoping she could prescribe me that antacid incase it happened again or something that would help me digest my food, because it all goes right through me. The minute I eat my stomach starts in on me and I'm in the BR. She blew me off. Probably because I was in there for this intense itchy rash that I can't get rid of(sound familar?) And the arthritis like symptoms in my hips... I did get steroid injections for hips, which have helped. To sum up. I have food sensitivity to everything practically. Main food adversions are anything greasy, raw veg, Raw fruit, dairy dairy and dairy, proteins like beef and especially eggs. I have had way to many closed calls to count. EEverything goes right through me. I can't gain weight no matter how much I change my diet. I have battling fatigue for years and I am an extremely active person, its maddening. I have night sweats for the past two years. Sometimes things come out like a pencil(I know gross) and the bloating and gas can be pretty painful. I have found blood in my stool, but blew it off. If i do too much one day im down for two. I have been on prednisone in the past for the itchy skin and I loved that I could eat but hated how angry it made me, I am now terrified of the stuff. My anxiety about going to the drs is why I wrote this. I know I need to go, but I wonder if my dr. Will even hear me. I really don't want this to be it, but it all fits. Just reading some of the post here and i just keep saying "thats me" over and over. Kind of sad now. Sry for the mis-spellings and bad grammer, I'm doing this from my phone.

welcome to the forum - these people are very kind folk; they've all been through some tough times.

You take care - and do see your doctor; make them hear you! we're all here for you if you need us :hug:
xLT

lsgs · Jul 24, 2013

Cat I would love some pity cake? I hope you're doing better. Has the fatigue let up at all?

perfectly.frank, I do get night sweats and so far they are unexplained. It's frustrating. I thought it was maybe the prednisolone but I've been off that for over a week and I'm still having the sweats.

I have been feeling like I've been hit by a truck since coming off prednisolone. Very moody, sleeping 12+ hours a day where possible but I think it's letting up now, thank goodness. I was really struggling to work with the fatigue.

I'm still struggling to lose weight, in fact I'm gaining it! Since I started cycling again I have gained 4lb!! Don't understand what's going on there.

Exercise just makes you feel awesome, even when your body is letting you down

BluebirdInLove · Jul 24, 2013

Cat-a-Tonic said:
Warning, angry vent ahead!

I got a call a little while ago from my rheumy's nurse. At first I was excited because she already had my MRI results! The MRI was only yesterday, so that's fantastic that the results are ready so quickly. But of course, she said the results didn't show any inflammatory arthritis. She said the rheumy's recommendation is to go back to physical therapy and to follow-up with him in a few months.

That's the part I have a major problem with - going back to PT. I went to PT in the spring of 2011. Don't get me wrong, I did great, it helped me a lot, and it was the push I needed to start lifting weights and doing other forms of exercise. I loved my physical therapist, she was fantastic. Physical therapy got me so much relief, and I spent close to 2 years with no arthritis pain whatsoever. The hip pain only came back over this past winter.

So I guess this is my issue. I told the rheumy's nurse that I had already done PT and it gave me good relief but it no longer is enough. Her response? "If you don't do the moves with precision, you could be doing yourself more harm than good - maybe that's why your pain is back." Wow, could you be more condescending?? Yeah, I'm just flailing about and exercising all wrong and that's why I had 2 years pain-free. #$%&*@!!! Seriously?? Because logically it seems to me like my arthritis has worsened and exercise alone is no longer enough to keep it under control - call me crazy but "it's progressed" makes more sense to me than, "you're doing it wrong." That's insulting and I am not doing my exercises wrong - when I lift weights, I use the machines and I try very hard to get the correct form. When I do other exercises, I try to watch myself in the mirror so that I can be relatively sure I'm doing it correctly, the way my physical therapist showed me the first time around. Urgh!

So, basically I got upset and told the nurse I'm not going back to PT because that's insulting - I've been compliant and I don't need to go back to PT and I'm not freaking doing it wrong. I told her I would like to see the rheumy again to discuss this - he seemed like a reasonable doc so I'll give him a chance to talk this out and see if he offers me other options. She scheduled a follow-up appointment in 2 months, so at least that'll give me some time to stop being quite so upset about this. He did say at my first appointment that I'm "too young for this to be osteoarthritis" so I'll be interested to hear what his exlpanation is for my pain if it's not inflammatory arthritis and it's not osteoarthritis. If he says I'm fine or offers no answers/solutions, I will drop him as a doc.

So yeah. I'm upset about having yet another normal/non-conclusive test result, and I'm upset about the condescending "solution" to the problem. I'm upset that I still don't have this piece to the puzzle and that there's not an explanation for my gradually worsening pain. I'm upset that I can't go for even a 5-minute jog without terrible pain but nobody can tell me why. I'm upset that I had to have an MRI, and have to pay whatever my insurance won't cover, for basically nothing.

To top it off, I was having a bad day anyway. I have been really fatigued today and not sure why - I got a good 8 hours of sleep last night, didn't dream nor toss & turn that I can recall. But I'm exhausted. And people keep asking me if I'm feeling okay - I guess I must look like crap. I looked in the mirror and I am a little more pale than usual, but I don't think I look awful. But people are making me feel self-conscious by asking if I'm okay, I'm exhausted, and now I'm frustrated and insulted too. I'm just feeling blah and upset. This is one of those days where I just should have stayed in bed.

Sorry that was so long. Thanks for reading and thanks for attending my pity party. I think I need to have party hats and banners and stuff for this pity party! Would anyone like some pity cake?

(( poor you Hun, it's such a hard thing when you feel one thing and Drs see another.
I think people tend to be condescending because they don't know what it feels like and maybe if they did they could be more understanding as to why understandably you're upset!

I bet you look bloody gorgeous anyways, nothing wrong with pale

Snow White was pale and I'm sure people are just concerned but I get it doesn't help. I wear a lot of make up otherwise I get the same lol it's like "thhaannnkkss"

I didn't notice your reply further up, yeah my ex friend was telling me about some convo she had with another friend and she said" so my friend asked do you think your cancer is back" then she said "so I was like I don't know" I'm sat there like :/ "ya what?!" I didn't say anything but I found it funny that in 2 years of friendship that she never once mentioned it? She's not one for keeping secrets so I dunno it disturbed me a little.
Lol she said she had a heart attack because she was chubby? So e wouldn't she want to watch her weight if that where true? :/ hmmm.

So I woke up at 5:20 am in freaking agony like really severe pain so now I'm going to cut out bread, still in pain kinda has knocked me sick so I'm going to try and get back to sleep and sleep through it. I can't take painkillers because the ones she gave me bung me up and at the time I was just having D but now I'm having C&D so the last thing I want to do is take them.

I'm going to red robin today :/ so dunno what I'm going to order and then to sweet frog but I can have some sorbet

Xxx

Cat-a-Tonic · Jul 24, 2013

Thanks, Bluebird.

I never really wear makeup, so if my face is pale, then it is what it is and everyone sees it. It's odd though because my during my first year of being ill, before I achieved remission, my face was regularly much paler than this. I literally looked like a corpse at times, no color in my face at all, I would even scare myself looking in the mirror sometimes! And nobody said anything about it then. A few people did comment, after I got into remission, that I looked much healthier with a bit more color in my face & weight on my bones, so I know people noticed the paleness, but nobody had ever said "gee, you look awful!" or "Are you okay?" And 3 different people said it yesterday, so that makes me think I must have looked seriously wrong. I don't know, maybe it was just coincidence. But it made me feel really insecure!

Oh my, you're feeling that awful and you're going to Red Robin?? Eek, poor thing! We have a Red Robin here too and I don't go there often because I don't do beef or fried foods, and I think that's mainly what they have. I did google their menu and it looks like they have a gluten-free menu, so maybe check that out before you go. It looks like they have hummus and grilled chicken, so maybe you could try some of that without bread? Hummus is usually very easy on my tummy and I can always do chicken as long as it's not fried, although I'm not sure what you can eat specifically so take a look for yourself. Hang in there hun!

Hi PiratePantaloons, welcome to the club.

First of all, nothing is TMI on the forum, so no worries about describing "gross" symtpoms to us. The pencil-thin stools you describe could be due to narrowing or inflammation in your digestive tract, so it's good that you're looking into Crohn's/IBD. I'm so sorry to hear you are going through all this without having insurance, that must make things 10 times more difficult! I have insurance but I still end up paying the deductible and whatever the insurance decides not to pay, so even with insurance I am constantly in medical debt. What a great country we live in, right?

Can you get insurance when Obamacare kicks in? I don't know much about it but I hope you can get insurance somehow, and affordably too.

As for getting the doctors to hear you, I know the feeling. I'm naturally very meek and shy and introverted, but being ill like this has forced me to have to stand up for myself and tell the doctors why I disagree with them and ask for what I feel like I need. I find that it helps a lot to write everything down. Personally, I take 3 lists with me to every doctor appointment. A list with my medical history and all my symptoms (even the ones that don't seem related to my digestive issues), a list of all the medications & supplements I'm taking or have recently taken, and a list with all my questions - with the most important questions at the top. That way, if I get flustered or just forget, I can show the doctor my lists and then he has all the information there. If I don't bring lists with me, my mind tends to go blank during the appointment, particularly when the doctor asks if I have questions. So I highly recommend writing everything down!

Jazi, can you tell me more about how you got diagnosed with Asperger's? I have a lot of those symptoms too and I've been thinking about asking my GP if he could test me for it, but I'm kind of petrified of being told I'm normal! Asperger's would explain so much for me, and if I don't have it, then what? I'm just a crazy anti-social control freak? So anyway, can you tell me what the testing process for Asperger's was like? Did they just ask you some questions, or was there more to it than that? Maybe if I know what the process is then I'll be less terrified of going through it.

Thanks everyone for attending my pity party yesterday. I am feeling a lot better today. I still don't have answers - but so what, that means it's a typical day just like any other day of the past 4 years, right? I feel much less fatigued today. I was having some pretty wicked joint pains yesterday which have eased somewhat today, and my stomach was a mess yesterday especially after getting the MRI results back, but today it's much calmer. So all in all, I'm having a much better day, and the support of you guys helped a lot.

Thank you all so much for being there for me when I needed some understanding (virtual) shoulders to cry on.

mccindy · Jul 24, 2013

straker said:
cindy just reading your post ..WOW you have had it bad girl ..all you need now is major spine surgery !! kidding that's my problem ...,I did not know that on a colonoscopy that they could get to the terminal ileum .that's where my problem is {apparently} I am still waiting for my results too and after 3 months of frantic tests and secret phone calls from the hospital its all gone very quiet .I want my results so I can plan my life I feel like I am on hold ..and coupled with my horrible back pain this bowel issue is killing me ...... rant over !!

THe funny thing is I hae had a major spine surgery. I had a two-level fusion with diskectomy ten years agao and a partial diskectomy three years ago. This craniotomy and tumor resection were my tenth srugery since 1991. Crazy!

I hope that you can get your answers soon and feel better!:hug:

mccindy · Jul 24, 2013

Hi CAt! glad to be back!

I went to a Red Rbobin recenty and they have a quite comprehensive allergen menu that tells yo uwhat food to avoid from their menu for eac htype of food allergen, inclding lactose, dairy shellfsih, gluten nuts and others. I foud it quite helpful and enjoyed my meal there.

bozzylozzy · Jul 24, 2013

Mccindy! Glad to see that you are back

How are you healing up? Glad to see that its a good outcome from the testing too.. :hug:

I am so sorry that I have not been around again.. and welcome to all the new members to our clan!

Cat - sorry to see you didnt get a good result from your mri and rheumy... grr! *shakes fist* I havent had mri on my knees.. but bone scan and xrays showed nothing wrong. It was the steroid injection that proved it was inflammatory

I feel like utter garbage today... my guts are playing up BIG time. Didnt think it was possible to fill the toilet bowl so many times lol! I just have the worst heavy feeling in my tummy.. bleurgh.

Cat-a-Tonic · Jul 24, 2013

Thanks Bozzy, that's interesting to know. Maybe I can ask for a steroid injection when I see the rheumy in 2 months as an experiment. I was just coming off of Entocort when the arthritis first started, so I don't really know how steroids will affect my arthritis. It'd be interesting to see though! Maybe it's like my IBD - hides really well but also responds really well to steroids?

I told the hubby this morning, thank goodness for my GERD.

It's the one thing that showed up on test results like a champ. I'm kind of proud that I scored 95% out of a possible 100 on that test that measured the severity of my GERD, and I'm also oddly pleased that the hiatal hernia showed up on endoscopy. If it weren't for my GERD showing up so well on tests, I might really feel like this is all in my head and I'm just going crazy! Not that I want or like GERD, but it definitely hasn't hidden itself away like the other illnesses have. It has flaunted it's GERD-itude all over my medical record, ha ha!

Aw Bozzy, sorry to hear the tummy is being so rough on you today. I was hoping maybe things would be better in that department after the chiari surgery - or at least not worse! I believe awhile back you said that you're being referred to a new GI soon, right? I hope so and I hope they can figure some things out. Hang in there!

Hi Cindy! I saw in another thread, you mentioned that you can now eat some of the things that you weren't able to eat prior to your surgery. That's great news and very interesting also! I hope you can continue to eat what you want without having to restrict your diet quite so much. I also saw that you're not able to exercise for awhile though, which sucks. Is your recovery still going okay? On your caring bridge page, you said something about having numbness in your fingers. Is that getting any better?

Sunnybs · Jul 24, 2013

I went to my gp today and she has ordered lots of blood tests including one for celiac disease. She wants me to start a gluten free diet ASAP and of course referred me to a gi doctor (only 2months til that appt!) in the meantime I'm reading up on celiac disease and one of the pages I read said it can lead to an autoimmune disease...such as crohns? Does anybody know if celiac disease can lead to crohns or uc?! Confused...

Cat-a-Tonic · Jul 24, 2013

Sunnybs, I've heard various things about untreated celiac disease so I did some googling for you. I found this:

Untreated celiac disease can be life threatening. Celiacs are more likely to be afflicted with problems relating to malabsorption, including osteoporosis, tooth enamel defects, central and peripheral nervous system disease, pancreatic disease, internal hemorrhaging, organ disorders (gall bladder, liver, and spleen), and gynecological disorders. Untreated celiac disease has also been linked an increased risk of certain types of cancer, especially intestinal lymphoma.

I found that on this site: http://www.celiaccenter.org/faq.asp
I'm not certain if celiac can actually cause Crohn's. I know that the two are not uncommon to occur together, but I'm unsure if one is actually causing the other or not.

One thing I should note, keep in mind that the blood test for celiac is notoriously unreliable (I've heard you may as well flip a coin!). The "gold standard" for diagnosing celiac is to do an upper endoscopy (scope down the throat) with biopsies. You have to have gluten in your system at the time the biopsies are taken - if you are gluten-free at the time of the endoscopy, your body won't be producing the antibodies or attacking itself, so everything will look normal even if you do indeed have celiac. So for the best test results, you'll need to be eating gluten before having the endoscopy. It sounds like that's a little ways off though if your GI appointment isn't for 2 months, so it's fine to experiment with gluten-free while you're waiting for that appointment.

jazij87 · Jul 24, 2013

well when I went in for my appointment it was a whole learning disabilities workup. while there I was asked a series of questions about how I handle social situations. they also did a evaluation on how I interacted with the testers and there supervisor. in my report, they noticed I had a hard time holding eye contact with nervous laughs oddly placed through out my testing. I also did a series of cognitive testing( mini activities for learning disability assessment).that was pretty much it. I received my results a few weeks later where they went over there findings, and they wanted to diagnose me with a mild form of Asperger's. they said a mild form because I have learned coping mechanisms that have seemed to help.

Cat-a-Tonic · Jul 24, 2013

Thanks Jazi! That's very helpful. I've learned some coping mechanisms too (I like talking to people who wear glasses, because I can look at their glasses and it gives the impression that I'm making eye contact). And I'm also a nervous laugher! Can I also ask you, did they do anything for your Asperger's? Therapy or anything like that? I guess that's my other big concern, if I do get diagnosed with it, is there anything they can really do to help me to not be so quirky & awkward?

jazij87 · Jul 24, 2013

Cat
I have been referred to a counselor of a psychologist, but that was when I was in Baltimore. since then, well I've kind of let that go. I guess I feel like I am doing fine without help, plus it was just for support just in case I would find something difficult. I guess the further you are on the scale the more life counseling you will need. I learned,and in some ways mocked what to do in certain situations. that is how I've learned to function in a lot of stressful social situations over the years.

I have had to explain to employers my diagnosis. they were having a hard time understanding why I can't be around the insanely loud ( at least to me) vacuum they use at night and so forth,because they were starting to think I was weird. at one point my manager told me he miss-read the not being able to hold eye contact as an attitude... so I had come forth with everything.as for treatment it really depends on the person.

personally I feel like I've managed well over the years without social counseling , so why should I have any need for it now. I may not always get the joke

because I tend to take things very literal, but I'll live and I'll lean what to expect next time.

jazij87 · Jul 24, 2013

sunnybs-
Cat is right,they would need to have you on a gluten diet in order to get a positive test. my big in my sorority was diagnosed earlier this year with celiac disease, and she told me it took them a long time to come to that diagnosis. her blood came back normal until they did the endoscopy. I wish you the best at your GI appointment in two months

. I hope you get some answers.

BluebirdInLove · Jul 25, 2013

@Cat:

Poor you hun :/ I guess you could always try tanning? That would add some colour? But I dunno I'm not too keen on the effects so maybe not lol

Yeah I wanted to hang out with a friend so we went there but I must say that they where very nice and I got the same waitress as last time, when ordering I always start off with "So I'm going to be a pain in your arse right now..." Ha but she was like "you said that last time and you weren't!"

I ended up having the avovacardo salad but I took off a lot of the stuff and ended up with lettuce,avocado,grilled chicken, bacon bits (was a little ickle bit naughty) and egg.

Then last night omg I was in the worst pain I had felt and I honestly was starting to black out and ended up having really bad D.

Now I dunno if it was something I had eat but I doubt it was the tiny bit of bacon :/ but either way it hurt so much but woke up today and I'm okay but not to jinx it since the day is young LOL

Seeing my GI next Thurs thank god!!! I don't think she's going to listen to my GP and my husband is getting fed up of seeing me like this so he's said he's going to tell her "if you can't help us then just tell us" because even though my GI is fun I think she is one of these Drs who won't take your ideas on board, I even told her I was on skin meds that are now being sued as countless patients have developed Crohn's disease after taking them and she was like "nah" I dunno but hey ho fingers crossed!!

Hope your feeling okay today Cat? Xx

Cat-a-Tonic · Jul 25, 2013

Thanks Jazi, that's an interesting point about telling your employers about it. In my job, I mostly work by myself and can be in my own little world, but my boss has been trying to get me to get more involved in group projects, and that just makes me anxious. I've told my boss, look, clearly I do just fine by myself, I get everything done accurately and in a timely manner, and I'm just not able to get those same results when others are involved. But she wants me to "put myself out there more" which just freaks me out.

So if I do get diagnosed with Asperger's, then I'd have more evidence to be able to tell my boss that I'm just much better working by myself!

Bluebird, I'm doing okay today, the guts are okay-ish and I'm not so pale like I was. I don't go tanning like in tanning beds, but I know that it's beneficial to get vitamin D from sunlight on the skin, so I usually don't put on sunblock if I'm going to be outside for a bit and I don't shy away from sun exposure either. I'm caucasian but I have sort of an olive skin tone, I'm slightly darker in skin tone than the average caucasian, so when my face goes all pale it looks really odd. My skin just looks wrong when it gets that pale!

But yeah, I definitely get sun exposure, I love to go sit outside and just read a book for awhile and soak up some rays in the summer months.

Good luck at the GI next week, I hope you can either get somewhere with her or that you can find a new, better GI soon. As for the pain after your salad, personally lettuce and bacon are both problematic for me. Lettuce is hard to break down, and sometimes it just passes through me undigested and I see pieces of lettuce in my poo later - and of course it causes pain and cramping as it passes through undigested. Bacon, well I don't really do beef or pork, but on the few times I've tried turkey bacon, it made me feel horrible. I read that a lot of bacon has nitrates in it which can cause a lot of stomach upset, pain, bleeding, etc. I'm not sure if it could cause such a bad episode if you only ate such a small amount, but it's worth considering the next time you eat bacon. If you cook bacon at home, look for "nitrate-free" on the packaging, and that might go a lot better.

mccindy · Jul 25, 2013

CAt - so far I've been able to handle some gluten, some cherries and venison. I don't know if its possible the tumor was causing some of the GI stuff? It seems odd. I know I've read that tumors can cause some GI stuff like nausea and vomiting. I'm still going to have the colonoscopy on the odds taht it was a flare that has calmed down now.
I am missing working out. I can do some light walking, squats and calf raises and thats abotu it.
The numbness in my fingers they think is from senory seizures. There is stilll a lot of blood in my brain from the srugery and that iriritates the brain apparently. I have an EEG scheduled for Tuesday adn that might show something. in the meantime my anti-seizure meds have been increased to 2500 mg, which is only 500 mg from the maxdose. so hoipefully that keeps things under control.

BluebirdInLove · Jul 25, 2013

Cat-a-Tonic said:
Bluebird, I'm doing okay today, the guts are okay-ish and I'm not so pale like I was. I don't go tanning like in tanning beds, but I know that it's beneficial to get vitamin D from sunlight on the skin, so I usually don't put on sunblock if I'm going to be outside for a bit and I don't shy away from sun exposure either. I'm caucasian but I have sort of an olive skin tone, I'm slightly darker in skin tone than the average caucasian, so when my face goes all pale it looks really odd. My skin just looks wrong when it gets that pale! But yeah, I definitely get sun exposure, I love to go sit outside and just read a book for awhile and soak up some rays in the summer months.

Good luck at the GI next week, I hope you can either get somewhere with her or that you can find a new, better GI soon. As for the pain after your salad, personally lettuce and bacon are both problematic for me. Lettuce is hard to break down, and sometimes it just passes through me undigested and I see pieces of lettuce in my poo later - and of course it causes pain and cramping as it passes through undigested. Bacon, well I don't really do beef or pork, but on the few times I've tried turkey bacon, it made me feel horrible. I read that a lot of bacon has nitrates in it which can cause a lot of stomach upset, pain, bleeding, etc. I'm not sure if it could cause such a bad episode if you only ate such a small amount, but it's worth considering the next time you eat bacon. If you cook bacon at home, look for "nitrate-free" on the packaging, and that might go a lot better.

That's really interesting about Salad!! There's me thinking I had done right by picking it *rolls eyes* lol god dammit!

Glad you're doing okay today

Cat-a-Tonic · Jul 25, 2013

Bluebird, it's so difficult to know what to eat sometimes. It seems like the "rules" change over time too. For me, I used to be able to eat a *small* salad every so often - if I ate salad two days in a row, or if I had a larger/meal-sized salad, then I was in trouble. But now I can't even get away with a small salad anymore. The last one I had was around New Year's. We had some friends over so we prepared a bunch of food, including a big beautiful incredible-looking salad. I thought, just a little bit might be okay? Nope! Literally a few minutes later I was in pain, and about 2 hours later I was seeing my salad again come out the other end, undigested. I haven't dared try salad again since that incident.

And unfortunately it seems that the "healthy" foods tend to cause a lot of the trouble. Anything high in fiber or not easily digested like that just seems to do me more harm than good. And things with seeds or skins do not break down for me either - I tried eating some grapes a few months back, and then for like a week I was pooing undigested grape skins. Sesame seeds also pass right through me undigested and make funny little "plink" sounds when they hit the toilet, ha ha.

I stick mostly to safe foods lately - for me, that's stuff like rice, baked chicken or fish, turkey, pasta, white bread, tuna, potatoes, juice & smoothies, etc. Not very healthy, but it doesn't make my symptoms worse to eat that stuff.

Cindy, wow, I'm impressed that you even tried gluten, let alone were able to eat it! That's kind of awesome but also strange that the tumor might have produced such effects on your digestive abilities. I hope the increase in your med dosage helps the issues with your fingers and keeps everything under control. How are you feeling besides the finger numbness? Do you feel like you're getting back to your old self again?

bozzylozzy · Jul 25, 2013

Do you know.. I think this is why my symptoms are mild in comparison to others. I have an awful diet.. and I always have. It wasnt difficult for me to go onto a low residue diet.. because its practically all I eat anyway!
I hate veg.. and very rarely eat salads. I eat lots of pasta.. rice.. cheese.. chicken.. chocolate.. crisps.. chips.. yorkshire puddings.. gravy and so on.

perfectly.frank · Jul 25, 2013

WOO-HOO !!!

Third night in a row that I have taken one Lorazepam tablet, and third night in a row without a single night sweat !!!

Have decided that I am not going to take another Lorazepam for a while, to see whether or not the Lorazepam has lowered my Cortisol levels not just for a 24 hour time period, but hopefully for maybe a week at least, or maybe even a month or more, if I am lucky.

I actually feel better physically, and definitely have a lot more "Get Up and Go" than I did a few days ago, as I had been feeling, both physically and psychologically, like I was trying to drag my weary arse through a paddock full of waist high mud and slush.

Still have the conjunctivitis and sore tummy, but am hoping that those might dissipate over the next week or so.

I am not a Doctor, and I dont like giving advice to people, becos every person is different, however, it appears that due to the chronic constant stress I have been under for the past three years, although especially the past six months, my Adrenal Glands have been working overtime trying to cope with the almost all-day-every-day stress and anxiety, but a single 1mg Lorazepam brought my Cortisol levels down to a more normal level, and stopped my night sweats.

Today, I feel like there is light at the end of the tunnel for me, and I am going to focus upon making sure I get good decent basic healthy food into me, and drink caffeine and alcohol in moderation, and keep taking my Multi-Vitamins and Cal.D.Forte etcetera for as long as I have to, at least until I see the bald patches on my head starting to grow back in a more normal fashion.

Love from Frankie xox

mccindy · Jul 26, 2013

cat - still having the finger numbness and starting yeserday I'm aving some numbness on the tip of my tongue. hoefully the EEG will show something Tuesday.

I'm thinking I went too far too fast, last night I tried a salad and had the mostumbly belly and more pain than the last few days. I've decided to take a couple days off and stick to what I know works for now! Since the colonoscopy is onl a couple of weeks away I might as well wait and see what it shows. Seems like the more I push and try to eat the worse I feel!

BluebirdInLove · Jul 26, 2013

Cat: haha you make me laugh

hmm well I seem to get bad after bread (but who really knows lol) but I was losing weight like crazy over 2/3 weeks, I lost about 12 lbs and I then tried maintaining my weight by eating things I shouldn't really just to kinda stop such the fast loss and I can't do it anymore. The options are even more pain or pain and weight loss so after deciding to now eat "correctly" I've lost another 2lbs in a couple of days, now I do eat healthy but still and I probs could stand to lose more but what happens when you get to the point where your a skinny minnie and you can't afford to lose anymore?

I mean if it was just salads I wouldn't be too bothered but its the rest of the stuff, Christmas is going to be shit LOL

You know you have it bad when food commercials used to practically turn you on and now you view them as some sort of enemy ha.

Ironically I don't like healthy food.... Well the jokes on me now LOL dammit!!

Cat-a-Tonic · Jul 26, 2013

Bozzy, sometimes in flares I have admittedly lived on potato chips (or crisps as you Brits would say) and gatorade and not much else.

That actually didn't cause me trouble at all either - I can digest potatoes just fine, the greasy-ness didn't seem to bother me, and I tend to lose sodium when flaring so the high sodium content of the chips was good for me, plus both the gatorade and chips gave me a lot of calories which I needed, and the gatorade gave me some electrolytes too. I'm not the hugest fan of health food either, but I really do miss salads. But I can also survive on junk food indefinitely.

Bluebird, I know what you mean about food commercials! When you're not able to eat is when they seem to show you the most delicious foods possible. I think Red Lobster commercials should be outlawed because the food in their ads just looks too incredible (and the sad part is, if you actually go there to eat, the food sucks and looks nothing like in the commercial!). And you know you're ill when even the Mcdonalds commercials start looking good! Ha ha.

As for losing weight, I was ill for a full year (Oct 09 - Oct '10) before my GI finally decided to actually put me on meds and try to get me into remission. During that initial year of uncontrolled illness, I lost about 20 lbs. I went from 136 lbs to about 115 lbs, which was borderline scary skinny for me (I'm 5'8"). I was really starting to panic every time I'd lose more weight, because I just could not put any weight on, and like you I was starting to wonder what would happen if I just kept losing. I knew it was terrible but there was nothing I could do about it! Fortunately, when my GI put me on steroid treatment (Entocort), that allowed me to heal inside and it also gave me a big appetite and allowed me to gain weight again. I got up to about 145 at my heaviest thanks to steroid treatment! So I gained a little too much weight back, but I'm now back in the mid 130s and have maintained that for a couple years now. So, long story short, yes, it's incredibly scary when you start to lose too much weight and can't maintain or gain weight back. But if you can go on steroid treatment, you might turn into an eating and weight-gaining machine! And if you can achieve remission, you should be able to maintain your weight. That's my experience anyway. As with everything in this illness, your experience may vary.

Cindy, I'm sorry to hear you had a bad salad experience too! I hope the EEG shows why you're having numbness, and that it's nothing major. For what it's worth, your typing seems to get a little better with each post you write, so it seems to me that you are improving bit by bit.

Your scope is on the 7th, right? I have a GI appointment on the 7th so I'll be thinking of you when I'm at my appt! Good luck with the scope and EEG!

Hey Frankie, glad to hear you've found something that's working for symptom relief, and I hope it continues to work! And I hope your theory is right about the underlying cause being stress - that would be so much better than IBD being the cause. Have you tried anything else for stress relief? Personally, I find exercise to be the best stress relief for me - the more intense the exercise, the better I feel. I can leave all my anxieties and sadness and anger in the gym and tire myself out to the point where I don't have the energy to worry or be mad anymore.

Just a thought for you, and of course only if you're well enough to be able to exercise.

How's everybody else doing? I'm so-so. My left shoulder/bicep area has been hurting for 2 days now - I think I pulled a muscle. I tried putting in a call to my massage therapist to see if I could get a massage, but he's not answering his phone and his voicemail is full, so I'm just going to have to deal with the pain until it heals I guess. I've also had a massive sinus headache for 2 days, although it finally feels like it's easing up now. So between the shoulder and the headache, I haven't been so great. The arthritis isn't too bad today though and the guts could certainly be worse, so I'm fairly functional. I'm looking foward to the weekend (mostly) so that I can rest up. I said mostly because I have to see my family on Sunday for my brother's birthday. I do not like my brother, he does drugs and has mental issues and is very manipulative and is just basically a jerk. And my mom will be there too and lately she's been trying this guilt trip thing on both me and my brother ("Oh sigh, I was a terrible mother when you two were growing up" and if we don't say anything then she gets mad that we didn't say no you weren't - but I'm not going to take the bait, I'd rather just ignore her stupid comments like that and say nothing). So the family dynamic lately is, my brother mentions something from like 10 years ago that my parents did to him that supposedly just ruined his life for realsies, then my mom does the guilt trip thing, then nobody says anything, then she storms out angry, then I send my brother away for being a jerk. So I'm trying to mentally prepare for the stress-storm that is my family.

I'm kind of grateful for my dad - he's kind of a doofus (he's basically a lot like Homer Simpson), but at least he tries to be understanding about my illness and asks me if I'm feeling okay, what did the doctor say, what would I like to eat, etc. I hated my dad when I was growing up because he was super mean, but he's mellowed so much that he's actually become the one person in my immediate family who doesn't drive me insane. So anyway, wish me luck for Sunday because that's what I'll be dealing with!

mccindy · Jul 26, 2013

Thanks Cat, I do feel like I'm seeing some improvements wit hthe typing. I think the fine motor control in my fingers is slowly getting better and that is helping.
I was bummed about the salad experience! buti the weight loss think can really be scary. After my surgery I couldn't eat for four days and I lost eight pounds! I've manageed to put about six back on, but needing to keep the eating down will not hlpe that . boo. Im hoping that I am able ot at least maintain.

BluebirdInLove · Jul 26, 2013

@Cat - yeah I was 162 I'm now 148 but I'm 5 ft 5.5 but I'm thick built, so like I said I probably could lose another 14 lbs but after that I thick for my body shape which is a pear (I wish I had more boobage

) I think I would be a little too thin.
Like you said though what can you do? I mean I would be happy to stay at this weight but who knows hey? Will see what the GI says.
As far as food I just had to pay $17 for a peice of chicken and half a small avocado because I could eat anything else on the menu at the bar/restaurant I go too

boo!!

Good luck with your family! My mum is very similar she wants everything to be about her and does guilt trips etc I recently fell out with my mum she said done very very hurtful things and denied abusing me but I ended up just swallowing my pride because I'm far too tired to fight. Think we just have to make that choice do we want a mum or not because people very rarely change and people like our mums so I dunno but I'm still saying my idea bout the desert island is a goodun.

@Cindy- bloody hell love

I hope things start looking better soon for you xxx

Gabi · Jul 26, 2013

Hi everyone
I hope you are all in high spirits. Just a wee update on my recent progress. Since the faecal calprotectin came back elevated a lot has changed my GI wants to see me again for another colonoscopy and to start treatment for IBD. When I first heard this I was elated but now I'm slowly realising the reality of what I have. Even my doctors have said to me they can't promise me that I will be pain free. I found this hard to take. Gettin diagnosed has been the most traumatic thing that has ever happened to me in my life and now that I am diagnosed I feel weird I thought it would be good things would get better and I could go in to remission but the reality is no body wins over IBD. Was as all losing to it. I really wana go back into hospital so my worries of the day is when to close the blinds or when to get my drip changed. I feel now I though getting a diagnosis would be amazing but now I see even less hope. Having a really tough time with family an work so this doesn't help either and I find my partner doesn't give me any physical support which wears me out so much. I've admited that I do need more rest as I never do. But I just can't stop cleaning etc !
Sorry for the moan I'm jut at a very dark painful place right now xxx

mccindy · Jul 26, 2013

Gabi, how unfortunate that you are not able to get family support. I'm sorry to hear that. Why not? Have you started any medication or any dietary changes to manage the disease/pain? There are peopel who mnage to live for quite a while without flaring or paon. HOpefully you can get into remission and feel better.

waitinggame32 · Jul 26, 2013

I've been having stomach issues on and off for years, but since february its been bad! I had to wait til April for my appointment with gastronentologist then I had to wait til last week to have colonoscopy and gastroscopy(sp?). I got results within a week, did not see any inflammation in the colon walls but Dr. took biopsy and it came back as inflammed?, she sent it to get a second opinion, she said sometimes the prep for the colonoscopy can cause inflammation,? Has anyone else heard this?
She started me on Pentasa 4g, to see if I get any relief while we wait for results, it has made me feel worst! tired, going to bathroom more(didn't think was possible) and stomach pain as well as a bad headahe and a foggy feeling(can't concentrate, taking long time for me to type this).
I really want some relief from all this and a diagnosis, but i'm so worried at the same time!
question? has most people expereinced weight lost? i've only gained weight since Feburary(37lbs!) which doctors are worried about the huge weight gain

mccindy · Jul 26, 2013

Thanks Bluebird! I'm hopeful. THe brain surgery recover is slow but they do think I'l get better in a month or two. HOpefully the colonoscopy shows something good and I can get some info. I'm glad ot have so many of you to come to with all of this going on!

Gabi · Jul 27, 2013

I think because my partner has dealt with me like this for so long he's so used to me being sick for so long it's kind of the norm now and he works a lot of hours so when he comes home he is very tired. My family live far away so unfortunately I don't have any help from them. I've applied for careers as help from disability but no luck at all. I feel people see me as a really strong person who just goes on through the pain but it starting to catch up on me and people don't seem to understand that stress can trigger IBD. Feeling really lonely I wish I'd more support xxx

BluebirdInLove · Jul 27, 2013

@Jaz- thanks Jaz I may look that up!!! Apparently there is a health food store around here somewhere, I'm sick of not having a proper cup of tea!!!

xx

Chickadee · Jul 27, 2013

ColoradoGrrrl-- Do you get mouth sores too? Mouth sores plus genital sores can be a sign of Behcet's disease, which can also affect the intestines.

Carrie630 · Jul 27, 2013

hi friends. long time, no see. I haven't been this sick in a long time. I've had diarrhea since July 9. I've been out of work for two weeks. if I miss taking lomotil I have huge problems. I'm always sick in the morning after it has worn off. My GP has done stool and blood tests. As is usual, nearly everything came back normal. The only abnormalities were from my limited diet. I'm going to see the GI this Tuesday, but I'm cynical. I guess the good? news is that if I am out of work I can spend days having tests.

Apparently I have "colitis" on both sides of my family. My family gives up medical history in tiny drops. What kind of colitis? I don't know for most except that at least three people on my mom's side had resections (cousin, grandmother, great grandmother). I know the doctors have me in the "it's all in my head" camp, but it's not! argh

if it was I'd make it stop. ugh.

lsgs · Jul 28, 2013

Gabi said:
Hi everyone
I hope you are all in high spirits. Just a wee update on my recent progress. Since the faecal calprotectin came back elevated a lot has changed my GI wants to see me again for another colonoscopy and to start treatment for IBD. When I first heard this I was elated but now I'm slowly realising the reality of what I have. Even my doctors have said to me they can't promise me that I will be pain free. I found this hard to take. Gettin diagnosed has been the most traumatic thing that has ever happened to me in my life and now that I am diagnosed I feel weird I thought it would be good things would get better and I could go in to remission but the reality is no body wins over IBD. Was as all losing to it. I really wana go back into hospital so my worries of the day is when to close the blinds or when to get my drip changed. I feel now I though getting a diagnosis would be amazing but now I see even less hope. Having a really tough time with family an work so this doesn't help either and I find my partner doesn't give me any physical support which wears me out so much. I've admited that I do need more rest as I never do. But I just can't stop cleaning etc !
Sorry for the moan I'm jut at a very dark painful place right now xxx

Gabi I know exactly how you feel, when my FCP came back high I was so happy there finally something to justify how sick I was feeling. Then it kind of sank in that it was going to be lifelong and I would never be able to escape doctors and hospitals etc. I'm also in a similar situation in that my partner is in complete denial. The last time we had to go to hospital he moaned the whole time about how tired he was and how much hassle it was. lol.

Are they treating you on the strength of your FCP result with no other positive test result? Do you know how high it was?

perfectly.frank · Jul 28, 2013

Dear Gals'n'Guys,

I might not have Crohns Disease, becos of the fact that I have never had a number of the symptoms that are associated with it, such as, chronic lower abdominal right (or is it left) hand pain, and almost permanent diarrhoea.

However, since my birth, I have had so many Crohns Disease Signs and Symptoms, such as:-

. Unexplained Vomiting and Diarrhoea and Failure to Thrive (according to my Plunket Records)
. Susceptibility to Contracting Flue and Cold Viruses and Bacterial Bronchial Infections
. Skin and Nail Psoriasis
. Childhood and Teenage Lack of Physical Growth and Late Sexual Maturation
. Female Pattern Baldness
. Constant Daily Anxiety (Ranging from Mild to Chronic)

There are probably other ones, but they dont matter.

What I have found to be extremely interesting and helpful to me, since I joined here several weeks ago, are the "Supposedly Un-Associated Un-Documented Symptoms" that so many of you, including myself, have talked about in our posts here.

For Example:-

. Sudden Saturating Sweats that are seemingly unexplained in origin that have been suffered for months and years
. Countless Inconclusive/Negative Blood and Urine and Surgical Tests
. Family and Friend Relationships Fraught With Difficulties (especially between Birth Mother and Child)

Over the past few days, I have done some more goggling, and found out that the medication that I was prescribed and started taking about six weeks ago, affects Adrenal Gland Cortisol secretion and levels, and that it also causes Cholestrol and Blood Pressure levels to rise, and can lead to Diabetes.

Within three days of starting to take 25mg of Quetiapine (Seraquel) nightly, my chronic saturating night sweats began, and became progressively worse and worse, until the point in time came, whereby I recognised the fact that my physical and psychological health was definitely in a down-hill decline, that my body and immune system was apparently incapable of counter-acting it.

I then goggled the arse out of the internet, and I found this forum, for which I will always be eternally grateful for having the privilege of joining and being a part of.

Shortly after which, I got in touch with my GP, for the first time in about 18 months, to voice my concerns and fears about the sudden onset of these saturating night sweats, and the marked effect they were having upon my quantity and quality of restorative sleep, not to mention other negative aspects, such as, dehydration from the excessive body fluid loss etc.

I will never take another Quetiapine Tablet ever again in my life, becos if a single nightly dose of just 25mg is capable of causing my Adrenal Gland Cortisol levels to be affected so quickly and drastically within such a small space of time, and raise my Cholestrol level sharply, then I believe that Quetiapine (Seraquel) is a dangerous and life threatening drug for someone like me to have been prescribed.

The last thing I am going to write here tonight, and share with you all, is the fact that my eldest Son (aged 24) has been verbally and emotionally and physically abusing me for at least the past three years.

I am not happy disclosing this information about myself to you all, becos I am ashamed and embarrassed admitting it.

However, I was verbally and emotionally and physically abused by my own Mother as a child and teenager, and even during my adulthood, in spite of the fact that we didnt live in the same house together, and were often estranged for many months and sometimes even years from one another.

I gravitated towards, and ended up marrying a man who was also an emotional verbal physical abuser, and my next partner was an emotional and verbal abuser (minus the physical), and my eldest son morphed into an emotional verbal physical abuser following onset of puberty, and increased male testosterone production.

One day, when I win Lotto, I will be able to afford to have a private hospital surgical procedure done, that might definitively prove one way or another, whether or not I was born with a genetic predisposition towards developing Crohns Disease.

Until then, I am just gonna focus on doing my best to stay alive, and keep things like my anxiety and night sweats and psoriasis and stomach pains and alopecia and lack of BMI under control and in check.

A few pages ago, someone wrote a post that contained lots of stuff in it, and they said that they were worried that their post contained TMI, but admin responded by saying that there was no such thing as Too Much Information in here.

Shit, I hope that this is true, becos this post of mine, is definitely about to put the whole TMI theory to the test, as, one of the "Usual Social Un-Said No-No's" is that peep-holes shouldnt raise the ugly subject of domestic violence and abuse.

Whilst typing this post, I have been half-pie watching a repeat screening of the movie "Avatar".

Guess it wont be long before its sequel gets released.

Love from Frankie xox :kiss:

allieinwonder · Jul 28, 2013

Hey Everyone!

I cannot believe it has been many months since I have dropped by. I feel like the worst person right now.

I used to come here while at work, then left my job and somehow just forgot about my old routine. Then my disease has been causing chaos, and we are moving...ugh. Bad Allie for forgetting the forum!!!!

I hope everyone is doing well...I keep up with Cat, Star, and Carrie on Facebook, but I hope everyone else is doing good too!

So as far as my disease goes, I am in a major flare right now. I seem to only be surviving because of my muscle relaxers for my chest pain, tramadol to take the edge off my stomach pain, and caffiene for the fatigue. On June 25th I had a procedure called a plexus nerve block, where they put a large needle in my spine and injected numbing meds into the area of my abdomen where my chronic pain is. Basically they are trying EVERYTHING to try and keep me away from pain meds, and it is driving me crazy. I keep telling them my pain is not being helped by the tramadol anymore, and they literally told me it wasn't their problem. WHAT?!? They are a PAIN management clinic! Its not like I am saying I have a pain they can't explain and that they should give me pain meds even though they don't know whats causing it...we know what is causing it now. My behcets has attacked the main artery in my abdomen, and it and the area around it are extremely inflamed. You can feel the inflammation by hand and it is warm to the touch. Yet they won't help me. When I told them it was affecting my quality of life, that I have a hard time being normal, they told me that was a mental health issue, NOT a pain med issue. I was SO insulted. Don't I deserve to be comfortable?!?! It is NOT normal to want to check myself into the hospital. I know it isn't.

Anyway, the procedure has put me into a major flare. My German rheumy put me on 30mg pred and doubled my immunosuppressants, but it is not working as fast as I would like. We are in the middle of moving from Germany to Atlanta, GA, so I have a lot of stress keeping me from getting better.

Anyone know of a good pain doc in Atlanta? Anyone know the magic words to say to a pain doc so they will stop all these crazy prodedures and watching me in extreme pain and finally let me be comfortable? I am getting really desperate here.

You would think being diagnosed would make it where they would stop treating you like a drug seeker....well, I thought WRONG. Would they do this to a lupus patient? To a Crohn's patient? I feel like they wouldn't.

Anyway, sorry for the rant, but thats how things are going over here. I saw at the top of this page that someone is asking about behcets... I would be happy to answer any questions if someone undiagnosed is looking into the disease. None of my american doctors are even taught about it, they google my disease every time they see me, so I always feel like I know a lot, lol.

bozzylozzy · Jul 28, 2013

Frankie - that is awful about the history of abuse you have received, and I can understand why it would be hard to talk about. But don't feel ashamed or embarrassed about it.. and I am so glad that we make you feel comfortable enough to do so :hug: we are all here for you. Has your son ever apologised for his behaviour? Or is he not aware that he does this?

Carrie - sorry to hear your doctors are doing the whole "its all in your head" thing... it is so frustrating - im guessing you've told them about your family history?

Allie! - welcome back! Dont worry about not being here lately, you need to look after yourself first and foremost. That sucks you are in a bad flare

what other pain meds have you tried? I cant stand tramadol (makes me so ill.. I have to lay flat or else I'll pass out)
Moving is stressful at the best of times let alone when you're moving countries and very ill

Hopefully your new docs can offer some different treatment for you xx

allieinwonder · Jul 29, 2013

Before I was diagnosed and running around a ton of ER's during my first big flare in 2010, I was put on hydrocodiene, oxycodiene, and even diluadid in the hospital. They all worked very well. When they thought it was a hernia, I was put on percocet (oxycodeine) from diagnosis till the outpatient surgery. I was able to plan my wedding (which was 5 days after the surgery) and continue working because of the pain meds. And no, I obviously did NOT get addicted. Tramadol did work very well in the beginning, but like I said, I've been on it for THREE YEARS. Its time to move up. I'll go back down to it once I'm off of it for awhile and my tolerance goes down, I really will. And now that I'm on gabapentin (nerve pain med), they won't have to use as much of whatever pain med they put me on. They obviously don't understand that and think I just want the drugs to get high or something, which is insane..I hate the feeling of being intoxicated or feeling "out of it", which is why I don't drink alcohol. I won't even take cold meds because of the side effects like that. But my pain is keeping me from walking my dogs, from hanging outside the house with my husband....basically everything but being on the couch. And it is NOT a mental block. If I take enough pain meds I do what I need to do. Oy. Oh, and I understand what you mean about the nausea with tramadol....I don't eat when on tramadol. I usually take more tramadol at night, because my pain gets worse as the day goes on, and I rarely eat dinner because of it. It frustrates my husband so much and I am underweight. I try to eat more food in the morning, or food with more calories, to counteract it.

Cat-a-Tonic · Jul 29, 2013

Allie and Carrie! Long time no see (on here anyway) you two! I know from your FB posts that both of you haven't been doing well lately - you probably know from my posts that I haven't, either. After 2 lovely years in remission, I seem to be flaring again. In May I started passing blood sporadically, something that hasn't been a symptom for me in the past. I'm getting other new symptoms too which are not the norm, and I'm not getting a lot of my "typical" flare symptoms (no night sweats, no chills, no weight loss, I'm having some d but only like 2x a day instead of 20x). But I am getting some of my typical flare symptoms, paleness and fatigue and nausea, and I've had one episode of having to get up in the night to run to the bathroom. So I really don't know if this is the presumed IBD flaring up or if it's something new. I see my GI on the 7th so I am going to ask for his opinion and a colonoscopy. On top of this flare, my arthritis has also been getting worse lately. I saw a rheumy, who sent me for an MRI. The MRI of course came back normal so now the rheumy doesn't know what to do with me - he suggested more physical therapy and for me to follow-up with my GP. So I'm back to square one with the arthritis and I'm completely puzzled as to what my guts are up to. Yay.

Carrie, I know you've had some terrible symptoms in the past and there's no way it's in your head. I remember you talking about waking up to heave, which sounded absolutely nightmarish to me. I hope your doctors take you seriously (or ideally that you can find better doctors), and I wish you lots of luck for your appointment tomorrow. I hope it is worthwhile and gets you somewhere! Please keep us posted.

Allie, I know you're in a stressful time right now with the move (I saw your posts about the movers not showing up, yikes!). I hope you can get a good doctor when you move back to Atlanta. If I'm remembering right, didn't you mention that you had a doctor that you really liked in Atlanta when you first got sick years ago? Any chance you could see that doctor again? I'm not even sure what type of doctor you see with Behcets - rheumy? Or do you still see a GI too? Is your husband finished with the army now, and if so, does that mean you need to get different insurance? Yikes, so much to think about. I hope the move goes smoothly (or smoother than it has been going) and that you can relax once you get back home to the US. Hang in there!

How's everyone else doing? I'm feeling blah. I think I pulled a muscle in my left shoulder on Wed/Thurs last week, and it still hurts. And on top of that, yesterday I woke up with awful mid-back pain that hasn't gone away either. I had to spend the day with my parents & brother, which is stressful enough by itself, and I was in this terrible pain on top of the stress. As soon as my parents walked out the door to leave, I felt my guts cramp up and I had to run to the bathroom. At least I held it together until they left! So yeah, I'm not doing so well lately. Counting the days until my GI appt.

Carrie630 · Jul 29, 2013

I've been waking up in pain with diarrhea for three weeks. During this time I'd say I've heaved upon waking at least twice a week. It's particularly stressful because there isn't even any food to bring back into my stomach for the vomit. It makes it even more severe in alot of ways :/

I've also lost 10 pounds since July 9. I can stand to lose a lot of weight, but you know it'll just come back on once they control my symptoms.

The doctors have tried to tell me it's my nerves... seriously? then treat my damn nerves, because this is ridiculous.

I'm also really worried I won't get paid tomorrow since I was put on leave. That will be disastrous.

Chickadee · Jul 29, 2013

Allie-- Can you tolerate Fentanyl? I wonder if the doctors would consider a Fentanyl patch for you.

I'm doing so-so. I had an appointment with my primary care last week, and he's really concerned about the bone mass decrease (that I'm so close to osteoporosis). I'm seeing an endocrinologist tomorrow about that and going off a med. I'm really tired of doctors appointments.

Chickadee · Jul 29, 2013

Carrie-- Throwing up with an empty stomach is so painful.

I'm sorry you're feeling so awful.

mccindy · Jul 29, 2013

I've been back on my eliminatio diet for a few days. It seemed like after the surgery it was getting better, but a few days of eating stuff annoyed my gut and now I'm calimg things down again. THe colonoscopy is only a couple of days away so hopefully I find something out.

I did manage to gain back about 6 of the pounds I lost during my recovery from surgery.

Cat-a-Tonic · Jul 29, 2013

Cindy, I'm glad you were able to regain some weight, that's encouraging. That's too bad that you're back to a limited diet though, I was hoping you'd be able to keep eating what you want. Hopefully the colonoscopy will be illuminating and you can get some proper answers about what's going on. Good luck with it! What prep are you doing for your scope? I'm hoping to have a scope soon (well, hoping might be the wrong word, ha ha) and I'm curious to know what the more tolerable preps are. I did the Gatorade & Miralax prep twice, and although that was easy to get down, it made me super dehydrated and I needed IV fluids both times, so I'm not looking to repeat that experience again. Let me know if you find a prep that's easy to get down and not too dehydrating!

Carrie, nerves??? Sheesh, that's just lazy and wrong of your doctors to say that. As for the weight loss, even if you do have weight to lose, losing 10 lbs unintentionally in less than a month is a lot! And they should take that seriously - I know my GI gets worried if my weight fluctuates at all and he always asks me how my weight has been. I hope you can find some better doctors, because your current ones sound like they've given up or are just totally lazy. I hope you can get paid too! Does your work have any type of short-term disability leave?

Chickadee, that much bone loss, that's awful! I hope you don't end up with osteoperosis. What shape are you in health-wise lately, are you able to do any weight-bearing exercise? I had quite a lot of muscle mass loss and I'm assuming bone loss as well from being so sick/malnourished and also from being on steroid treatment and GERD meds. I've been lifting weights regularly for a couple years now and my muscles & bones are better than ever (well, except for the shoulder/back injuries right now anyway, and also excepting the arthritis). I know I blab on and on about exercise, but it's really helped me a lot in numerous ways. And weight-bearing exercise can add both muscle and bone mass, it's great! I don't know where you're at health-wise lately or if you're able to exercise, but if you are, I strongly recommend weight-bearing exercise as an alternative to osteoperosis medication. Just my two cents of course.

My back is feeling somewhat better this afternoon! But my shoulder is feeling worse.

Just can't win. I was reaching for something in my car and I must have moved my arm wrong or something, and suddenly there was terrible pain in my shoulder/bicep area. I can't even tell if it's the shoulder or the bicep, it's like in between the two. All I know is, if I lift something even slightly heavy (like a water bottle) then there's discomfort, and if I move it wrong then it is very painful. I'm going to attempt to do yoga tonight and I'm probably insane for that, but yoga seems safer than lifting weights (I think?). I haven't worked out for like 5 days now so I'm going a bit stir crazy, I need to do something active and cardio hasn't been my friend lately, and weights doesn't seem wise, so yoga it is I guess.

Carrie630 · Jul 29, 2013

We do have std, but I am not clear on when it kicks in, and what happens before that.
I am hoping the combination of the weight loss and being on medical leave will make them look closer. If I'm not happy with my appointment tomorrow I'm going to make an appt with a GI at Cleveland Clinic.

Gabi · Jul 29, 2013

Thanks to everyone who replied to me you all give me such strength and support.
Isgs-I'm not sure how high it was they just said elevated. My GI said I was a nightmare to scope so he said he would like to do another colonoscopy (4th one) but he might not want to put me through it again. So they have requested another Fecal test to be sure and then he said we can start treatment. He said my symptoms are far to sever for IBS and my bloods are always low on everything!
I was at my GP today apparently I look awful (thanks for the vote of confidence!) she wants my potassium levels done as they were very low a couple of weeks ago. She said if they are low again she might admit me to hospital. I kind of dread and look forward to hospital now- such a mixed bag. Does anyone else have low potassium here? I have the shakes really bad and look like a chronic alcoholic :/ it's one of the things that gives me away to people who don't know I'm sick and they always say are you cold or nervous!!! It's so embarrassing. I really want to start treatment soon, be in the hospital or out.

Cat-a-Tonic · Jul 29, 2013

Carrie, I've heard good things about Cleveland clinic so I hope they can help you if all else fails. My understanding of short-term disability is, at my work anyway, it kicks in once you're out sick for longer than a week, but I think you have to talk to HR to let them know that you've been out sick and need to go on STD. So I'd say talk to your HR dept and let them know the situation, hopefully they can straighten things out. Good luck hun, I'm living paycheck to paycheck too and I'd become homeless pretty quickly if I suddenly stopped getting paid, so I understand that type of financial worry. Add chronic illness (and doctor bills) to that equation and it's suddenly a very bad situation. I really hope the financial stuff falls into place so that you have one less thing to worry about.

Speaking of financial stuff and health worries, (long vent coming, sorry) my hubby confronted me somewhat angrily recently, asking me, "When are we going to have a kid?" Apparently he's feeling old (he's 36, I'm 33) and he wants me to get off the fence already. But I can't, I just can't. He barely works - he does some freelance work here and there, and he works very part-time (usually 1 day a week) for minimum wage in a costume shop. He feels he needs a job where he can be artistic (he went to school to be an animator). But there aren't any art/animation jobs out there - there's fierce competition for the few jobs there are, so a person like my hubby who graduated from art school 11 years ago and isn't up to date on the latest 3D software and all that stuff, isn't even going to be considered. And he won't apparently even consider getting a regular job, like at the hardware store or whatever (even though they're hiring and pay good benefits and pay above minimum wage and pay time and a half for weekends, and yes I've mentioned it to him multiple times).

So the financial strain is all on me - I *have* to keep working or we'll lose our house, and I have to keep working for the insurance benefits too. And I've been flaring for a couple months now but have barely taken any sick days because I feel pressured to keep working. And now he wants me to have a kid? I cannot, I just can't. I'm sorry he's having a mid-life crisis or whatever but I can't put my body through more torture AND bring another human into our crappy situation. I can't risk not being able to work since he apparently won't step up in that regard. I can't put myself through what would probably be a high-risk pregnancy and likely screw my health up worse than it already is. I'm on the fence as to whether I actually want a kid, but physically and financially, I just can't do it. And if I did have a kid and they inherited some of my health problems, I would be so devastated, it's just unthinkable. Does anyone else feel like this? Like, maybe if the situation was different, you'd be all for having a kid - but there are so many compounding factors that the future looks downright bleak when you even consider pregnancy. I literally told him he can leave if he wants, but I just can't do it. He said he's not going anywhere, but I can tell he's disappointed. I'm mad though, he's basically been at home goofing off for the last few years since his freelance work mostly dried up. I've been working and working. Now he wants me to do something else so that he can play at home, with a kid. While I'll still be working I'm sure. Sorry, this is a long vent and I'm not sure where I'm going with this. I guess I'm mad both that I have to work even though he's the healthy one, and I'm mad that he thinks it's acceptable to ask me to put my health on the line just to create a person who will strain us further financially, may inherit my sicknesses, and will probably just grow up to resent us. Am I justified in being mad about that stuff? Or am I just lashing out because I'm flaring, do you think?

Cat-a-Tonic · Jul 29, 2013

Gabi, my potassium is usually borderline-low. When I sweat, it drops down into the low end, and when that happens, my feet and toes cramp up terribly sometimes. Of course I sweat when I work out, so most workouts end with bad toe/foot cramps. It's not pleasant, but it's usually okay as long as I'm not sweating. Do you know what your potassium level was last time? According to my latest bloodwork from a few weeks ago, my level was 3.6, and it says anything below 3.5 would be considered low. So I was just barely in the normal range then (and I wasn't sweating then).

I'm glad you'll be getting some treatment soon - did they say what type of treatment? I hope that either way, hospital or not, you can get some good relief soon and feel a lot better. I know it's been a long, hard road for you, but it sounds like relief should finally be on the horizon. Let us know what treatment and how you do with it!

Carrie630 · Jul 29, 2013

HR knows. I had to call this Matrix place who manages STD. It's just confusing as to what happens.. in any case today marks the first day of my third week out of work so I'd assume STD is kicking in.. I'm still waiting for the paperwork though.

All of my other doctors are Cleveland Clinic. I had a terrible experience with a GI @CC which is why I switched to another group. From what I've heard he is no longer with the clinic which is why I'll consider going back to their gastro dept.

And yeah I hate living paycheck to paycheck. It's hard to be out sick when that is the case.. no matter how sick a person is. the mortgage won't get paid if I don't get paid, thats what I'm most worried about. So if I get paid tomorrow then I should be able to relax a little about the $$$. It's not like I'm spending it on frivolous things like, oh, food. damn body. we're about to try to eat some rice.

Your hubby definitely needs to update his education. You know I work for a creative organization? We barely hire any creative folk without extensive graphics design software experience. We used to, but all of the designs are being moved into an image database and will be all on the computer.

My wifey is an adjunct english professor... she makes .. a pittance. no benefits. She can't pay the mortgage. not even in an emergency. I'll have to get a loan if it comes to that.. so I totally understand where you are coming from. I don't see how he can get on you to have a kid when a: you're pretty damn sick, and b: you make the money. What exactly does he think happens when you go on maternity leave? It's just like going on leave for being sick as far as pay and all that jazz. Not to mention the potential complications you could have during your pregnancy due to having to not take medications. You are totally justified in your last paragraph there... I didn't even read it before I wrote what I did above. I don't understand why he won't get a job... even K would get another job if she had to, despite hating office work of all kinds.

Does he not get it?

Carrie630 · Jul 29, 2013

as an aside... you know your nausea is bad when you have to leave the kitchen because the smell of cooked plain white rice is too intense for you. meh

BluebirdInLove · Jul 30, 2013

Hello my lovelies!

How's everyone today?

Cat how's you? Are you okay now with your hubby? Babies are a massive decision and you're right to not just want to "go for it" till you guys are financially okay. I don't think some men understand what a woman's body goes through during pregnancy. Xx

So I don't know if I'm alone on this but last night I had the aircon on and a fan on full blast above my husbands and my bed and he was fine but my whole body was on fire like I couldn't sleep, I didn't really sweat so I would guess that's a hot flash? Well it wasn't a flash I was hot all bloody night ha but just wondering if anyone else gets that?

I've been in very severe pain of late, so much so that I could barely stand up during a burst of incredible pain on Sunday, had to sit down at my friends party. Probs shouldn't of gone but I hate letting people down and I might of been okay.

So yeah just checking in on everyone xxxx

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