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Crohn's Disease Forum

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Allie, if your painful spot is already swollen and distended again then I would imagine the CT would have to find something, right? Now, I may be remembering wrong, but I thought that CT is better for seeing bony structures and MRI is better at seeing soft tissue. If the CT sees nothing it might not be a bad idea to ask for an MRI of the inflamed area. When do you stop taking pred altogether? I would imagine that you're not at a high enough dose or on it for a long enough time for it to heal much of the inflammation, especially since it's back already, so I wouldn't worry too much about pred masking things that would otherwise be seen on the CT. Good luck with it!

Carrie, how funny! You work at a card company and make cards as a hobby - that just makes me laugh. Who knows, maybe your boss will see your work and put you on the artists' team. There might be legal issues, but if you're just doing it for fun and not selling the cards then I wouldn't think it'd be a problem. (Disclaimer - that is just my layperson advice, I am not a lawyer and although I am related to several lawyers that does not mean I have any knowledge whatsoever about legal stuff.) Enjoy your relaxing weekend, as far as I'm concerned that's the best kind of weekend! :)

So I have a serious decision to make. I am not sure what color yarn to buy for my cousin's blanket! I googled her university as I had the idea to make a blanket in her school's team colors, and it looks like the colors are green and red. Like a medium/slightly dark green and a slightly dark, borderline maroonish red. It frankly looks too xmas-y to me and I don't think those colors would look good together as stripes on a blanket. So I am thinking I might just do one solid color. What do you guys think would look better, green or red? I'm leaning towards green but not sure.
 
@Cat - I hope I don't get too bad either. I am worried about that. But, as you said, it may pay off. All question will be put to rest.


@Allie - Boy, it sounds like you have a long road ahead of you with loads of tests before actual treatment will be started.


I am glad to hear the movie was good. You are making me more excited to see it! I agree, the other 3 movies were pretty awful. I crinched at several scenes ( ex: "You're like my own personal brand of heroine"). They don't do the books justice, but I still watched them. I just loved the books, so it's tough to live up to them. I have read the whole series 3 times. Is that pathetic or what?! It's the only book/books I have read more than once.
 
My bosses and any coworker who pays attention to my facebook knows I make cards, but I haven't sold any. I think thats where the issue could come in :)

You could go green with a small border in red?
 
I think a green blanket would look great. My next blanket I'm making for my etsy shop is a dark green blanket with dark green fringe. :p
 
6 years of GI symtpoms of something!

Hi! New here. looking for advice.In a nutshell I have had "flare ups" of severe stomach pain with fatigue,diarrhea.hx of unexplained joint pain in wrists hands and shoulders, ankles. This year I had 2-3"flares".. The episodes are getting longer( 2-3 weeks) and now inability to eat w/o pain and diarrhea after eating.i have had endoscopy, lab work, cbc diff is always somewhat abnormal,leukocytosis low lymphs, up neuts eosinophils etc.thrombocytosis due to iron defec.(ferritin was 7, now 42)On iron now so it is up.Sed rate has been slightly up in the past.So, this last episode was so bad I lost 17 lbs in just a little less than 3 weeks. went back to GI AGAIN,had another gallbladder u/s hida scan endoscopy barium/IV contrast CT.and all came back normal. Becasue my GI knows I started having panic attcks this year( due to changes from the start of THE CHANGE ( missed 3 periods this year) he told me maybe I should see a psychiatrist. Instead I got a second opinion set up and am in that process now. Thoughts anyone? I am very frustarted. I have lost12 days of work this year specifically due to these flare ups. I was also told it was IBS or visceral hypersensity. i am having a colonoscopy in FEB! Why hasn't he suggested one sooner? Who knows! I had to ask him for it! I know that IBS in general usually do not have abnormal lab work. It is not a hallmark sign . I have tried antisposmodics with no relief and am not relieved after BM( another hallmark of IBS). Thanks everyone.....
 
Hi Erin, welcome to the club. I'm glad you're getting a second opinion as it sounds like your old GI was a jerk! That sucks that you have to wait until Feb though for your c-scope. You might want to call and see if they've had any cancellations and can get you in sooner. I did that - when I first had my c-scope, I called in March and their soonest opening was June. I waited about a month but just felt I couldn't stand it any longer. I called back, in tears, and asked if they had anything sooner because I was so ill and didn't know how I was going to wait another few months. The nurse I spoke with too pity on me and scheduled me for the following week. So, that may not work for everyone, but it did work for me to cry on the phone.

And you're right, with IBS the blood work would be completely normal, you wouldn't lose weight, etc. Have you had any blood in your stool, fevers, or nocturnal diarrhea (being awakened in the night to run to the bathroom)? Those are all also red flag signs indicating that it's not IBS.

With regards to taking so many sick days from work, you might want to apply for Family Medical Leave (FMLA). You can get approved for it even if you're undiagnosed - my HR rep explained to me that basically all they need to see on the paperwork is that you have a serious, ongoing medical condition that will require you to take more sick days than the average person. And when you take a sick day on FMLA, they can't punish you or fire you for it. It's like a security blanket for those of us who are sick but have to work.

When do you see your new GI? I hope that's sooner than Feb as well. Good luck, hang in there, and just know that you're not alone. We're all here with you!
 
Hi guys. This is probably a really stupid question but...
When you have a barium follow through, do they put a circle around something on the x ray when it's a cause for concern? They circled something on mine but they didn't say anything about it to me.
 
i have been woken up in the night yes. no fevers however.No blood. I have done the hemoccults as well. i have easy access as i am a nurse in a hospital and they were negative.now since my last episode I am CONSTIPATED! It is not hard poo but I cannot get it out! I know these are gross topics but everyone here is kind of in the same boat so I know people would understand.
I have another appt w/ the second next week I am bringing all my test results with me.My 1st GI sceduled the COl. Maybe I will get one sooner with the second. But I do not have the lower abd pain? It is right in the center of my stomach so I don't think they are convinced that I may have an IBD.MY GP thinks somethng is being missed and agrees with me that this is not IBS.Whatever it is, it is painful enough to double me over and THAT is not in my head

As for the FMLA. I tried to apply and I was told I did not work the minimum required amount of hours. I am a 24 hr a week employee. 1248 a year. Supposedly you need to be working at least 1250!!!!! I need to check into it on a closer level as I actually picked up hours this year when I was feeling good....... Thanks! Oh and I get vague nausea at times as well and that is still going on since the attack.
 
14 Girl, I haven't had a barium follow-thru myself, but it's my understanding that radiology techs aren't allowed to say anything to patients about what they may or may not see on x-rays. When I had my ultrasound I asked the tech if she saw anything and she said she wasn't allowed to say. I would think that circling might just mean that it's something the doctor might want to look further at, but it doesn't necessarily mean anything.

Erin, no worries - no subject is TMI on the forum! We all talk about poo, blood, etc. As for where your pain is located, it sounds like it might be higher up in the small intestine or maybe in the stomach? But you said you've had upper endoscopies that didn't see anything in the stomach, right? There is a whole lot of small intestine that can't be seen via scope so after your c-scope, if that doesn't see anything, you might want to ask for the pill cam (capsule endoscopy). Although pill cam can't take biopsies, it can see the entirety of the small intestine. It's one of the better tests to get for diagnosing Crohn's.

I hope everybody else is doing okay and is having a good weekend. I did some errands and cleaned a bit. Now I have to figure out what to make for dinner. I hope to relax at some point today! Feeling good though. I hope everyone else is too. :)
 
thanks cat-a-tonic. i have thought about the pill cam as well. i have told my GP i want every test under the sun and i am telling the new GI this as well.I will not be told this is nothing.My labs have been abnormal for a year straight now. I am always told it is a stress reaction. with the physical symptoms I don't think so.I have always had a hard time losing weight, and i would not be having a issue in my head with NOT eating due to this. Ilove to eat and I love to cook bake etc.ah well will wait and see until the next serious flare up or maybe the new GI will find something. At thi spoint I hope they do so I know what I am dealing with. will be back after i see her next week. Thanks alot for your advice and support!
 
I've been reading the posts but haven't posted back in a while, sorry! I can't believe everyone is doing so poorly lately. :( I watched mystery diagnosis the other night, and it's crazy. It's my favorite show now. I just can't believe how many doctors either don't take the patient seriously, or don't listen to them. But at the end of each story, there is a happy ending... the patient finds out what's wrong, and they get feeling better and have good care! So, I'm hoping that all of us get our mystery diagnosis happy ending soon! :)
 
Does anyone get chest pains???!!
I've been having chest pains that feel deep and heavy every few minutes for the past 4 hours.. :( I've had chest pains before, but i just didn't know if anyone else has had it and if they know what can cause that?? Is it from the stomach/intestinal pains? :(
 
as with any CP one would rec. you call the doctor, go to an emergency room. It is also symptom of panic attack, gallbladder issue, or gut issues . you just never know. I have been having panic attacks since JUly and they start out very similar to what you are describing but progress to tingly feeling and elevated heart rate. Always get checked out with CP! Did it go away?!?!
 
Sunshine - I had a lot of chest pain a few months ago. I honestly was convinced I was going to have a heart attack. However, after visiting with my GP, it was clear it was stress related. Of course, chest pain isn't to be messed with. So, even though I think it is most likely due to anxiety, it wouldn't hurt to see your doctor. I hope you feel better soon.
 
Sunshine, I get chest pains but it's my ulcer/gastritis. I know the GI said you didn't have any last time, but didn't you have it bad the time before?

I've been coloring and making cards. Trying to block out how yucky I feel. I started randomly throwing up this weekend. I don't think my ulcer is getting better. At least my tooth was fixed, yay!

eta: wow, somewhere in the office someone is playing the benny hill theme song.
 
I also get chest pains, but mine are a bit different. they only last a few minutes, but they are sharp and usually send me to the floor. I have to breathe short shallow breaths when it happens. I've brought it up to doctors many times, and they have never explained what it could be.
 
They come and go, and don't really have any trigger to them. and yeah 2 doctors ago, they said i had gastritis, but then the mayo said no... but the mayo also said i didn't have crohn's and my primary seems to think differently still.. so who knows. :/ I think it's gut related. I heard that when you have gut issues it can cause chest pain, so that's probably it. I'll definitely mention it to my doctor on my appointment on december 1st.

I don't know if i told you all this or not, but my friend works at the hospital, and she was talking to one of the surgeons about me being sick and everything, and he (a surgeon for IBD patients) was SO interested in my case. He wants to talk to me and not give me any care or anything, just wants to talk to me and look at my tests and give me any advice and/or refer me to someone he thinks can help me. So, I thought it was crazy that a doctor actually wanted to see me haha, usually they give up on me! but he wants to chat with me, and then my primary care doctor will see me on december 1st (next week!) and we'll see what she says about the next steps for testings and such. Feels good to have doctors actually care and want to help you... very refreshing, gosh I needed that.
On the other hand the mayo clinic is slacking big time... they have had my fat diet test results and 24 hours sample results for the past 2 weeks... and I call them everyday asking for a doctor to call me and tell me the results, and they always say "yes, he will call you when he's done with his appointment", but no one ever calls me... so today i called twice, and still no one called me back about results!! I'm like... HELLO!!! I need help!!! WHY DON'T YOU UNDERSTAND!! :( So i'm going to continue to call them tomorrow and hopefully they can give me some results tomorrow, because this is ridiculous!! it takes 5 minutes to make a call. I feel like they don't even care... :( if they tell me results tomorrow i'll definitely let you all know, but who knows.. no one ever calls me back :(

Sorry I wrote so much!! I hope everyone is doing okay. <3 *HUGS
 
That's so awesome that the doc wants to just chat with you Sunshine. :) It really shows how much he cares if he wants to help you off the clock like that. Take advantage of that as best you can!

Those of you that my friend on facebook (I hope I got all of you), I added you to a group I have been a part of for a while with people with invisible illnesses. They are a tight-nit group that aren't undiagnosed, but they talk about daily struggles and treatment.

Did anyone watch mystery diagnosis tonight? It has really upset me. :( The second patient was told all she had was asthma, and she deteriorated to the point where she had to give up her son, her home, and become homeless because she couldn't work. Then a doctor went "hey, something isn't right" and found masses on her lungs.

I'm deteriorating like that too. With my bloods starting to show evidence, why am I still being told its nothing? Blood: Chronic b12 deficiency, low potassium, and positive ANA.... physical: nasty rashes, and the point where I'm in pain is very warm and hard? And I responded very well to Prednisone. I just don't know how this is going to end and it really hurts to not know. Will I have to get so bad I can't walk? How can this get worse? When will a doctor listen? When will I stop feeling crazy and stupid?
 
Aww Allie, I feel the same way!! This is so frustrating and everyday I just feel like what's going on with me?! And what is going to happen, and it scares me so bad. and i feel like i'm going crazy lol :( I really really really hate that we have to rely on doctors to help us, because quite honestly a lot of doctors are not willing to think outside of the box, and that's what you need sometimes. How are you feeling, what is your next step??!!
 
Heard from Rheumys secretary, he is thinking things over given recent events and will be in touch, probably end of next week as he is away at the moment.

I am just terrified of being told they can't/won't do any more for me and i'm on my own, or I must take the drugs trial. The drugs trail to me is last resort and there are still tests I should have before that you know. Even Rheumy admitted such trials can do more harm than good, since if I got worse they wouldn't know if it was the drugs or the underlying problem.

Hospital complaints service say they should get back to me by December 29th.
 
You are very right.

My next steps are: rheumy's assistant appt today, CT scan Dec 8th, and then I'm going to my GP soon to figure out if I need to be put on B12 injections. Then its off to Germany....so I will be going to my GP there asking for a referral to the rheumy at the american hospital 3.5 hours away. >.<
 
I'm sorry to hear everyone's doing rather poorly today. :( Sunshine, how much weight have you lost? I lost about 20 lbs over the first year of my illness (gained it all back and then some when I was put on Entocort). I hope this new doctor and your GP are able to help you out. And what's up with Mayo not returning your calls? I thought they were supposed to be the best! I hope they get their act together soon!

Allie, good luck with that appointment today! Make sure to let the assistant know just how much pred helped you! Hopefully this guy at least knows that pred works for some illnesses but not others (not IBS!). Let us know how it goes - fingers crossed for you that it's a productive appointment.

Star, I hope your rheumy can do something for you - even if it is a drug trial. It's not the end of the world, believe me. I can't even remember how many different drugs they tried on me, both for IBS and IBD. Of course the IBD ones (pred, Entocort, Asacol) worked well and the IBS ones (Dicyclomine, Hyoscyamine, probably others I'm forgetting) didn't work. I did feel kind of like an experimental guinea pig when I was trying all these various meds, but it's good to know what works and what doesn't. And that helped my doctors narrow their focus to IBD - especially when I tried pred and it worked, that was the real turning point for me. At that point in my illness, I would have drank battery acid if there was a chance it would have gotten me some relief, so I was happy to take pred. Anyway, if it comes down to a drug trial rather than more tests, it's a bit of a risk yes, but sooo worth it if you can get some relief and/or if it helps you towards a diagnosis.

So, I'm still doing okay but am a bit confused. I went to the dentist yesterday, and the dental hygienist basically yelled at me for not flossing every day. I floss when I remember to, which is maybe a couple times a week. She told me she could see inflammation in my gums that wasn't there the last time I was at the dentist (6 months ago). That freaked me out because I know Crohn's can manifest in the mouth. I still feel like I'm in remission and I'm definitely going to try to floss more. Has anyone else been told that you've got gum inflammation? I haven't had mouth sores or any other mouth symptoms so maybe it's just something that will clear up by flossing more. Oh, and this was just the hygienist who was so concerned - when my actual dentist came in to check on things, he said it wouldn't hurt to floss more but overall things look fine and that they pretty much tell everybody to floss more so it's not a big deal. He was just so easygoing about it but the hygienist was the opposite. I don't quite know what to think - guess I'll just floss as often as I can and hope for the best in another 6 months?
 
See, the thing is with my Hospital, a successful drug trial would not make them focus on IBD. They would just say "oh you have some kind of auto immune disease. The drugs work so we are not giving you any more tests" "still unlikely to be CD not enough evidence" etc etc. They would even still argue for IBS and say I did start out with IBS 5 years ago and got something else in the meantime (as thus far they have been content to ignore the red flags that happened when I first got sick, so a successful drug trial wouldn't change things). I would bet money on it the way I have been and am being treated by all but one department at the Hospital.

I'm not keen on the drug trial i'll be honest; but in no way do I want to be forced into it which is how I feel right now. If I had all the tests I have been denied and they were all 100% normal, in a few months time i'd likely decide to go ahead. But I am not in that position now.
 
I've had different hygienists say different things to me. I am a terribly UNregular flosser. I had one tell me the same thing a couple of years ago, that my gums were inflamed and receding. Then the next one I saw at a different dentist's office said she didn't think anything about it when I asked her specifically. Neither dentist expressed it as a concern. I'm going to go with the dentist's recommendation personally. I know that I need to floss more regularly - my grandmother (approaching 80) is religious about flossing, and her dentist told her that she had the gums of a 30 year old. So I know it is beneficial, it's just a matter of doing it in my case.

Sorry everyone is feeling poorly. I felt all gassy and bloated yesterday and today feel like I actually have heartburn.
 
That sucks, Star. :( Well, maybe a successful drug trial would get you to feeling well enough to where you could travel to a better hospital? I believe awhile back you mentioned the possibility of going to a gastro-specialty hospital in London - maybe that'd be an option again if you did a drug trial and got well enough to where you were able to travel without awful repercussions. Just thinking out loud and trying to be optimistic for you. Hugs!
 
My appointment went alright. I told her my story all over again, and she didn't have much to say about it. I have been put on yet another muscle relaxer (this is #3) to see if it helps my sleep. I have an appt with my actual rheumy on the 13th to discuss the CT scan results. She also wants me to stay on the tramadol. She could tell I was in a lot of pain.

I'm REALLY hoping the CT scan shows something. With it being constantly warm to the touch I don't see how it couldn't. She said there are a number of things the CT could show, and she thinks it will help shed light on whats going on. Trying not to get my hopes up though.

As for my mouth, I have terrible habits with brushing and flossing. I floss maybe a few times a month, and I brush once a day. The thing is every time I brush my gums bleed. I'm not quite sure why, I've always assumed its since I don't brush as often as I should. Every time go to the dentist they say my teeth are great. Never even had a cavity!
 
Allie, whenever I start to floss again after a long hiatus, my gums always bleed until they get used to it. Then they're good to go. Until I get lazy and don't do it for a month and have to start all over again.

Hope the muscle relaxer helps and that the CT shows something.
 
Allie, I really really really hope this CT can give you some answers! :) Hang in there! <3

My fat diet tests came back "normal" of course, which doesn't make any sense if i'm losing weight (20 pounds so far)... and do you know what the mayo clinic told me? They said we are going to put you on antidepressants so you need to make the trip up here so we can tell you the side effects and risks. I said, soooo what's the next test? And the lady said my doctor doesn't have any more tests to do.... so what does that mean!?! This is ridiculous.
I went and saw my friends friend the surgeon, and he said he thinks it could be crohn's still too, and that the hard part is going to be getting a real diagnosis on it because apparently you need a biopsy from an ulcer... So i have no idea how they would do that.
My primary care doctor's appointment is next thursday and I think she is talking with my first pill cam doctor about what he found and everything and to see what they should do about that, and then she hopefully will have more news of what she may think it is. I love this doctor and I think she will be the one to help the most. :) Just hanging in there, and been feeling really tired and feverish after I eat. :(
 
@Allie - Crossing my fingers that this CT scan shows something! But I know how you feel; you don't want to get your hopes up.

@Sunshine - I can't believe the Mayo Clinic has no more tests for you, and they want to start you on antidepressants?! Well, jeez, if you're a little depressed, I think it is justified! You're ill and no one can tell you why. And it sounds like they taking the same approach as my GI - wait and see. You'd think in this day in age there'd be a better approach! I think your friend's father is right; doctors rely heavily on biopsies. I have plenty of symptoms that align with Crohn's, but since biopsies have been normal, I've been stripped of my diagnosis. I sure hope your awesome new GP will be able to truly help you.
 
Wow, that stinks, Sunshine! Hopefully b/t the doc with the initial pill cam results and your GP, something can be done for you! What was the story with the doctor who did your initial pill cam? I remember you had at least one doctor that was kind of through with you once you said you were going to Mayo, if I am even remembering correctly. Was that him or a different one? Is he willing to treat you at this point since he is the one who diagnosed you with Crohns? Is that a possibility at all?
 
Sunshine....no, not the antidepressants route! Ugh! I was put on them too by one of my GPs...she literally said all my pain was in my head and that I would be fine in three weeks. >.< That really sucks that the mayo clinic is going that route...they are suppose to be so good...


So I have a new dilemma on my hands. My hair loss has gotten to the point where my hair is so thin when I try and put my hair in a ponytail there are bald spots all over the place....you see more scalp than hair. I'm devastated. I don't know what to do about it. I'm afraid in the next few months I will just keep losing it to the point where I have no hair at all. I haven't gotten a hair cut since July, and my hair has only grown a little bit. It just really saddens me...I don't want to be some undiagnosed person that looks like a cancer patient, but thats the road its going towards. >.<
 
Allie, I have had hair issues also. I didn't have a lot of hair to begin with, and I've been shedding like crazy for a long time. Unfortunately there are a ton of reasons that you can lose hair, so without knowing the reason it's hard to know what to do treatment-wise. Can lupus make your hair fall out? I don't know much about lupus.

I think a medication I was on exacerbated the problem and I got off of it, but the shed has yet to slow down to a normal level. I know I also have low ferritin which probably contributes in my case. Have you been checked for that? I would have your GP do an alopecia work-up on you for sure, especially since she seems to be a very thorough, helpful doctor. When I mentioned hair-loss to my dermatologist, she immediately ordered a TON of bloodwork since there are so many possible causes. That's how I found out about the ferritin.

I have visited a hair-loss forum, too - www.heralopecia.com. A lot of brave ladies there - and a lot of possible treatment options you can read about (probably better to decide once you can pinpoint exactly what is causing it). Also they have lots of info on methods to make what you have look like more than what it is. Recently I got a pretty drastic haircut that has made a huge difference both in the way my hair looks and also how I feel about it. I also use a dry shampoo by Bumble and Bumble to camouflage my scalp show-through. It's a little pricey, but it's lasted me several months, plus I think it's worth it. There are ways of at least making it feel not so obvious. It is a depressing problem, though, that is for sure.:hug: I am sorry you are going through that on top of everything else.
 
@Jill- Thanks, yeah it's crazy how hard it is to diagnose someone... The medical field is ridiculous most of the time! I really believe the whole antidepressant thing is just something that they want me to take because they can't do anything else... but I don't want a band aid, i want to know exactly what's going on. :( Is that a lot to ask for? If 2 other doctors think that I still may have crohn's it just needs biopsies, than obviously we shouldn't be throwing that out of the loop yet. Did they go threw the entire small intestine to look for biopsies with you, Jill?
I hope my GP can help! :) I'm really actually excited about seeing her next thursday. I hope she has a lot to tell me about what she thinks is going on. :)

@Mayflower, it's a different doctor, this one's awesome, (the one before this one is the one that kinda gave up on me), the weird thing about the pill cams were that the very first one showed ulcerations throughout my small intestine, and the 2nd one i did with the mayo clinic didn't show anything, so everyone was skeptical of the first one. Oh also because the first pill cam dr didn't keep the CD with all the pics he only kept 8. So, everyone was freaking out with which one is accurate, and then when the mayo clinic told me they don't think i have crohn's, we are all confused because my GP told me that ulcers can go away and come back depending on if your in a flare or not... so idk why the mayo clinic threw out the idea so fast.. that's all. just confused about it all. :( He wanted to treat me, but I think they want to MAKE SURE it's crohn's before I get into the meds. So, idk what him and my GP are going to talk about on the phone. but hopefully they can put together some plan to get an official diagnosis or keep figuring out what's happening.

@Allie, I don't know what the mayo clinic is doing at this point with me... kinda disappointed with them. When the lady on the phone told me to take antidepressants, i said until what tests can be done? and she said he doesn't have anymore, he did them. And then I mentioned how come the first pill cam showed crohns and the one i did with you guys showed nothing, and then i went back to my GP which is what you told me to do, and she told me that they can appear and disappear if your in a flare or not. and she responded well that's possible if you were feeling worse the first time than the second time, and I said, I WAS!! I went to the hopsital and could barely hold anything down or in me, and I thought I was going to pass out that the flare was so terrible. she was like.. oh well that door isn't neccessarily closed (probably just to get me to be quiet). and then she just kept talkinga bout the antidepressant to get my brain to not notice the pains i'm feeling... yeah, like that's gonna help figure out what's wrong with me... >_< that's just ignoring the real problems... so frustrating. but at least my GP is amazing and seems to be 'not giving up very fast'. so next thursday i hope she has some things to tell me.
Allie, i'm so sorry you are losing hair... isn't that a sign of lupus too? are they completing booting out the lupus diagnosis yet, or are they still just trying to figure out things?
the surgeon i talked to yesterday for a little bit just as an opinion told me that the reason why i've lost hair and that my period was irregular (was 3 weeks late and spotting) was because i've lost so much weight. he told me that's a big sign that i'm unhealthy and that the doctors should be seeing this, but he thinks they are just overlooking me. So maybe that's why you are losing hair too? I don't know just an idea.
 
Yeah one of the main symptoms of Lupus is hair loss. :( My hair started falling out the same time the joint pain, abdominal pain, and D started. I mean all my symptoms started at the same time really. It isn't just the hair on my head either...I have bald patches on my legs, arms, my eyebrows, and even my pubic hair (sorry TMI). I have to brush eyebrow and eyelash hairs off my face all the time. I've gone on the Lupus foundation website to see if they had any suggestions (that might work for lupus and other things) and they said it has to run its course and to get wigs. :(

Sunshine, I have heard that weight loss can cause hair loss too, but I haven't been losing weight lately. Not drastically anyway. I have stayed around 115 the past couple months. And my hair loss is getting worse...I didn't have my scalp showing before! :(
 
Hey guys. I know I'm a little late in joining the conversation, but stumbled across this and can really relate to the stories here.

I'm undiagnosed as well. I am 20 years old. I was anorexic for four years and have been recovered for three years now. I've had persistent crohns-like symptoms for just less than a year... Diarrhea, loss of appetite, nausea with occasional vomiting, stomach cramps, pain in my lower right abdomen, joint pain, blood in stool, and night sweats.
I've been through every test in the book - upper and lower scopes with biopsies, plenty of blood work, stool studies, CT scan, and barium followthrough, not to mention all the other obscure ones. All the tests came back normal, except for the colonoscopy. My ileum was "a mess" as the doctor put it - completely torn up and bloody.
However, literally nothing has been done to treat it, I have no answers, and it seems as if I've been written off as a crazy person. They now say they've done every test they can and still can't seem to find anything. (I wonder... should I really be trusting a doctor who sees my insides bleeding and later tells me he "can't find anything"?)

I'm at the end of my rope, I guess. And the thought of waiting years for a diagnosis makes me want to cry. I'm just... tired of feeling sick, tired of feeling like a crazy person, and tired of getting the runaround from doctors who really don't seem to care. Not sure what to do next or where to turn. So, if anyone has any suggestions - or a hug to give me - it would be much appreciated.
 
Allie, so sorry that you have been losing so much hair everywhere, this is very sad :( a doctor should see that and be like "OH! I know what it is!", but for some reason all the doctors seem to just write it off like it's nothing for you :( so upsetting...

K-berry, welcome! Everyone here is very supportive! :) It really helps us all to talk to each other.. it makes us feel "less crazy" about how we feel! I love this forum! :)

I have the same problem kinda. had a pill cam and it was a mess, and then had another one and it was fine, but my new GP doctor said that she is still thinking it's crohn's possibly. so i would get another opinion if I were you, that's what I did and am still doing with my new GP. It may or may not be crohn's for me still, but my new GP is trying to get to the bottom of it and is also thinking of other tests to do for other things besides crohn's just in case to check everything else. But i would consider another opinion! :)
But we all understand how much it stinks to trust doctors... like how do you trust them when you get 2 totally different results? craziness, but yeah hang in here and we are always here for you! :)
 
Hi everybody, I'm here. Had a busy few days - a short work week means I need to cram 5 days of work into 3 days. I usually have time to post here when I'm at work but not so much last week! And then of course Thanksgiving and Black Friday and then a party last night, phew! I'm glad I have no plans for the actual weekend because I need to rest. I hope everyone else had a good turkey day and didn't get sick from all the food. I think the stress of work and then the stress of the holiday had an effect on me, I don't feel particularly bad but I think I lost a little weight because of it - my pants felt looser instead of tighter after Thanksgiving!

K-berry, welcome to the club. If I were you, I'd definitely seek out a second opinion. Any doctor who sees your ileum looking the way you describe, but then ignores it - that's not a good doctor! Was it a primary care doc or a gastroenterologist? Either way, please start looking for a new one! You're obviously not crazy (and don't have "just IBS") if your ileum looked like that. Make sure to get a copy of your records to show to the new doctor, especially if there are photos of your ileum.

Sunshine, it sounds like the Mayo has given up on you and that's awful! I'm so glad your GP and this surgeon are taking you seriously. And I agree with Allie, don't let them push antidepressants on you! That's like putting a band-aid on a broken leg. Sure, you probably are depressed - who wouldn't be after being so ill for so long and not being taken seriously and not having answers? That would make the most cheery and optimistic person become depressed! But they need to treat the underlying cause, the gut illness, not the depression itself. How frustrating. I really hope your GP and this surgeon can help you a lot. Good luck and please keep us posted - I'll keep you in my thoughts, and am sending a great big hug and happy thoughts your way!

Allie, I'm sorry to hear about the hair loss. That's awful that the Lupus foundation says it just has to run its course - I would imagine it can't finish running its course until you can get some treatment/ put it in remission? Did the pred help any or make it worse? When I was on Entocort it seemed to make my hair fall out more, and like May said I also have very fine/thin hair and can't really afford to lose any. May suggested I try Biotin and that worked pretty well for me. I still take even though I've been off of Entocort since April, I figure it can't hurt and might help. I don't know if it'd work for Lupus though. I hope things get better soon. I would imagine proper diagnosis, treatment, and remission would help - I hope that happens soon!

How's everyone else today? Having a relaxing start to the weekend, I hope. It's a rainy day here (and tomorrow it might snow!) so I'm staying in, cleaning, relaxing, crocheting, etc. I hope everyone else is doing well.
 
I hope everyone had a great Thanksgiving!! I hope everyone had all the turkey and sides even with the guts complaining. :)

Cat, I've heard good things about Biotin as well, but I haven't tried it yet. I didn't notice a difference when I was on the pred, but I have heard pred can cause hair loss as well. I couldn't imagine my short course of it would cause anything though. I actually found a bald spot the night after the conversation we had about it....I can't put my hair in a ponytail anymore because the bald spot is right at my hairline on my left side. It was really upsetting. Atleast I have something to show the rheumy on the 14th...of course it doesn't mean lupus exactly but it shows that something is wrong...
 
My period is due and the weekend before is always worst for PMT is all I will say... oh and next week my contraceptive pill is being changed, I am not happy about it and the last thing I need at the moment is to worry about side effects of a new pill and bleeding all over the place... but i've no choice! Hopsing to hear from Rheumy next week.

I did a little more walking Thursday and it pretty much sent me to bed for 2 days. I need more exercise and to lose some weight but am really stumped as to how I can do this. I am going to increase fruit where I find it works and decrease the potato chips but other than that I am at a loss as to how to do it. I really don't understand why I am not losing weight at the moment, it's something I may bring up with Rheumy when I see him next.
 
Cat, I am very disappointed in the mayo clinic too! :/ Also, my GP as I think I told you all, still thinks it could be crohn's as part of the problem, and she kept mentioning how you need a biopsy to get a real diagnosis... so I was wondering if they could do a biopsy of the intestine from the outside of it, laparscopically? and I wrote on a thread on this forum and David quoted from a source that said YES, it's possible to get a good thick biopsy from the outside to diagnose crohn's if it is suspected. But of course I'm not going to think about doing that, unless that was something my GP and GI were thinking because it is surgery. Maybe that's something for someone to think about though for any of you. What do you guys think?!
I kinda have a feeling that this GP will figure it all out, she just seems very open minded and ready to get things done! :) I kinda have a feeling as well that maybe my pancreas is involved some way, because that pain that i sometimes talk about that is under my right rib and radiates to my right backside is a symptom of the pancreas. But, who knows at this point, it could really be anything! Since i've been sick for so long. :/ All i care about is that we find the answers (the RIGHT diagnosis) and then get treated so i can be having my life back! That's what I hope for everyone on here!! <3

I hope everyone had a good thanksgiving! I ate some turkey, mashed potatoes, and green beans, and then 20 minutes later was in the bathroom... :( Oh well, i tried! lol But it was a good time with the family even though the tummy got the best of me. :)
 
hope everyone had a good thanksgiving. thanks to the holiday i'm up to 101 lbs! going for my 3rd dose of remicade on tuesday.

sorry to hear about everyone's goings-on. i seem to be a bit more sheddy in the hair department as well, but i have pretty thick hair, and it doesn't seem to be coming out in patches, more of an all over thing. just more hair in the brush than i used to. hair loss can be hormonal, too.

sunshine. sorry about mayo. sometimes doctors do all their standard tests, and if it doesn't match up with anything they give up. if your GP doesn't get anywhere (although it sounds like they're trying hard) give UF a try. i only saw the crohn's guy once and had a CT there (been seeing someone in my hometown since), but it took going there to get a pretty sure dx and then my dr here to concur. and he was also willing to dx on symptoms.
and as far as tests go, my 1st colonoscopy i had inflammation in about 6 different small spots, and my 2nd colonoscopy only the last inch of my rectum was inflammed. of course, by then i had figured out a few things i shouldn't be eating.
 
Allie, My hair loss got better after I went on plaquenil, but it took more than 6 months to show any improvement. I actually take the plaquenil for my joints, but its also used for sle.

Sunshine, I hope you're doing better and that your GP is able to help you!

Nothing much has changed over here. I ate thanksgiving dinner okay, but then felt like crap and couldn't eat most of the next day. not really surprising. I was also traveling. I haven't been on the boards because I've been off the computer working on christmas cards. I've been thinking about all of you though. I tried doing both at the same time, but that so does not work.
 
Carrie, I saw your pics on your profile with the difference. I wish they would just diagnose me and put me on a med so I don't have to continue to watch my hair fall out. :(

I don't care whats wrong, I just want to know WHAT it is so I have a NAME and TREATMENT. Doctors think I'm refusing the IBS and fibro crap because I want something wrong with me...what?!?! NO, Something is already wrong and I know its not syndromes that have no actual test to confirm that's it. This CT scan better show something....it has to...

As you can see from the above, I haven't been doing well lately. My pain has skyrocketed, so I'm not able to taper off the tramadol, which really pisses me off. I still try and take as little as possible but yesterday the pain was so bad it took 100mg every 4 hours to keep it at bay. If I let the pain linger I get really cranky and I can't concentrate. :( I feel like this entire situation is completely hopeless.
 
I'm having a bad morning. Overdid it yesterday - cleaned like mad and put up the xmas tree and walked the dog in the frigid cold. It was in the low 30s but 20+ mph winds so it was sooo cold yesterday (of course, my dog loves when it's that cold, she's weird that way!). Laundry, dishes, vacuuming, cleaning & organizing, ran errands - during all of this, I forgot to eat, so when I finally did eat I had what was quick & sounded good, which was french fries! Needless to say, my stomach did not like all that grease. Not good! And today my period started, so my guts are crampy too. At least my house looks good and my dog is happy, so hopefully once I get my guts back under control again I can enjoy that. Ha ha.

On a happy note, as part of my spree of housework, I actually had to do the dishes myself, but that's a good thing. My brother usually does the dishes, that's the one chore around the house that he reliably has done since he's lived with us. But, he recently got a better job and he's finally moving out! I overheard him making a phone call the other day, and he said "Hi, I'm calling about the apartment." When I heard that I did a little dance of joy! After nearly a year and a half, he's finally moving out! I'll miss the extra money that we get from him paying rent, but he hasn't been paying very much so it's not a huge deal, and I'd rather have my space and sanity back. Yay! :D

Star, I'm also guilty of eating too many potato chips and not enough fruit or veggies. Have you tried juicing? We've got a juicer, and fresh home-made juice never bothers me. Store bought juice does bother me - I think it might be the added sugar? And sometimes regular fruit & veg bothers me, seems to be the skins and/or seeds that is problematic. Like, whenever I eat tomatoes, always I see the skins in my poo later. But when I juice fruits & veggies, it sits really well in my tummy and doesn't cause d later and my poo looks normal. If you've got access to a juicer, I would highly recommend giving it a try.

Sunshine, if it is Crohn's, they should be able to see it laprascopically. My understanding is that Crohn's affects the entire thickness of the bowel wall, so if it's there it should be seen from the outside of the bowel as well as the inside. It certainly sounds like it's worth a shot - it's not an invasive surgery and I believe the recovery time isn't too bad either. I know that Crohn's Mom had laprascopy a few months ago so you might want to ask her more about it.

Allie, how's the stress level? Only, what, less than 3 weeks to go until you graduate? And then you go back to Germany? What's the plan after that - are you going to get a referral to a rheumy in Germany? I hope you're able to rest a bit when you get back but I also hope they can finally get you a firm diagnosis quickly. Are you still on 5mg of pred or are you all done with it now?

Flowergirl, glad to hear that you're still doing well on Remicade and are gaining some of your weight back! Just be careful with that, I gained a bit too much back when I was on Entocort, ha ha. And now that I'm in remission, it's harder to lose weight than when I was sick all the time. Of course I'd rather lose weight the proper way, with diet and exercise, rather than though illness, so I'm pretty happy with things even though I've got 5 or 10 lbs to lose. And frankly a part of me would rather have a few extra pounds on me just in case I do flare up again, like a little buffer zone.

Carrie, I totally understand, it's hard to do crafts and be on the forum at the same time. I sometimes crocheting and checking the forum at the same time but it just can't be done! One or the other gets totally neglected. How many xmas cards are you making? And, I guess this question is for everybody, would you guys be interested in sending xmas cards to each other this year? I wouldn't mind PM'ing my address to the regulars in this thread if you'd all like to exchange cards. What do you guys think?
 
Boy, what a hectic weekend! Luckily, I didn't feel too awful. I was able to enjoy Thanksgiving dinner, Black Friday shopping, and Christmas decorating. I am still having issues with rectal pressure and mucus, but it is actual almost non-existent today. It's so wonderful.

@Allie - I am sorry to hear about your hair loss. I have been losing a lot more hair than usual, too, so I know how upsetting it can be. I have always lost a lot of hair, but I think it has gotten worse lately. I lose so much in the shower. It's hard to imagine this can keep up without making a noticeable difference. So, if you find something that helps, please let me know!
 
Goodness, I just want to send everyone Feel better balloons this week! lol I really wish someone could help all of us! It's scary being undiagnosed because you never know what's going to happen next, and every little thing your body does or shows is always in concern... :/ Sorry everyone, i really hope everyone has a better day today. *HUGS HUGS HUGS*

Cat, Thanks for the info about laparoscopy. I'll have to see what my GP's next steps are! Hopefully THIS THURSDAY she'll have some info for me or some direction of what she's thinking of doing to figure this all out!

I don't understand how my body can have so much D when I don't even eat a lot! I'll never understand it lol. and again, pieces of undigested foods in my stool this morning :/

By the way, everytime I watch mystery diagnosis, I think of all of us. I think we should all be on the show haha, make a group story. :p
 
xJillx said:
@Allie - I am sorry to hear about your hair loss. I have been losing a lot more hair than usual, too, so I know how upsetting it can be. I have always lost a lot of hair, but I think it has gotten worse lately. I lose so much in the shower. It's hard to imagine this can keep up without making a noticeable difference. So, if you find something that helps, please let me know!
Click to expand...

Jill, I added a liquid B vitamin to my supplement regime about 6 weeks ago, and I think that's helping with my hair loss. Some days I barely lose any in the shower and that is so amazing for me. Even before I became aware of there being a problem, I would shed a lot, but it has been really bad in the last few months.

Here is what I take. I still take biotin most days in addition to this. I mix the liquid stuff with orange juice and it doesn't taste too bad.

HTH.

Cat, that's great about your brother. :applause: Glad you're getting your house back.
 
Yay! Carrie, I'll PM you my address. Anybody else interested in exchanging xmas cards?

I haven't been on here as much lately and I'm sorry for that. Work has been pretty busy for me lately so I haven't had as much time to check in on things. I've been reading as much as I can but haven't had a whole lot of chances to respond. Other than being busy though, I'm doing okay. Recovered from the holiday and the bad day I had the other day, back to feeling mostly normal again (aside from the period cramps which are now in day 3, so hopefully they'll be gone very soon).

Oh, I did put in a call to my GI - he had asked me to follow-up with him after I had been on Asacol for 6 weeks. As you all may recall, the first time he put me on Asacol, he had asked me to follow-up with him after a short time, I think it was 2 weeks or so. And that time, when I called to say things were going great, he spontaneously pulled me off of Asacol and insultingly tried to put me on Pepto Bismol instead. I had to fight to go back on Asacol. So yeah, after that first experience, I wasn't super keen on calling my GI and saying things are still great on Asacol - don't want a repeat of the Pepto thing! I left a message with his receptionist yesterday saying all is well, no side effects, feeling fine, and that I would like more refills. I haven't heard anything back yet but I'm hoping that he will just write me more refills and not try doing another med switcheroo. I still have most of a bottle left of Asacol but no refills so I've got like 3 weeks for him to decide whether or not to keep me on Asacol for a longer period of time. Wish me luck!

Sunshine, you have a GP appointment tomorrow, right? GOOD LUCK and I hope her dilligence pays off and gets you some answers. I'll be thinking of you! I hope you can get something in the way of testing as it sure sounds like Mayo is done with that. Well, I guess on the bright side, if Mayo is done with you then that at least means no more long car trips? It sucks, but at least there are SOME doctors who are listening to you and taking you seriously, even though they're not Mayo docs. Anyway, good luck!

How's everyone else doing? I hope all is well and that your guts (and joints, skin, etc) are behaving themselves.
 
Cat, GOOD LUCK!! :) I'm glad that what your taking is working well still. If it keeps working, i say don't change it! :) the doctor needs to listen to you about what is working well for you, and not what he thinks. :)
And thank you my appointment is tomorrow!! Thank goodness... I think I'm back in another terrible flare... :( the last 4 days, anything I eat or drink, goes right through, causes lots of pains and cramps, and i just feel sick and nauseous all day everyday. and my stools are ONLY WATER (sounds gross, sorry) but it's ALL liquid all the time and it's orange and reddish, not normal at all. normally i have D all the time, but at least sometimes it's trying to form but it's just messy.. but this is just complete liquid like i'm urinating :( ughhh.. I've felt AWFUL. :(
just trying to stay hydrated and not eating solids at all...
I hope my doctor tomorrow is proactive and productive with my appointment! Let's get some testings done! get some answers! pleaseeeee! lol
 
good luck at your appointment, Sunshine! I hope you start to feel better. watery stool sucks in so many ways.
 
I've had the "pee out my butt" type d in a bad flare as well - it's just as if I had been drinking prep. It sucks because it's so easy to get dangerously dehydrated when you're peeing out your butt like that. When I get really dehydrated, I just cannot seem to drink enough to rehydrate myself and IV fluids are necessary - it seems to me that my bowels must be too inflamed at those times to properly absorb water or something like that. When I get really dehydrated, my hands & feet start to go tingly or numb, I get really dizzy and light-headed, and at times even my vision goes blurry. It's awful! So Sunshine, if you get anything like that, please think about going to the ER or urgent care for IV fluids. Another test of dehydration is to pinch the skin on the back of your hand - if it snaps right back into place when you let go, then you're probably fine. But if it takes a second for your skin to go back, then you're really dehydrated and probably need IV fluids.

I hope everyone else is doing well today. And that the holiday stress isn't getting to you too much! I'm starting to stress a little bit. I haven't made or bought any cards yet, and I still have a lot of gifts to buy and it's already December! Eek! How's everyone's crafts going? I started on a blanket for my cousin - I went with green yarn and may do a red border - and I've already done 3 skiens. It usually takes about 8ish skiens of yarn for me to make a full blanket so I feel like that's pretty good progress, although I do stress out a bit when I think that I've still got 5 skiens to go and only a little over 3 weeks. Yikes!
 
Good luck at your appointment today Sunshine!!!

Sorry I haven't been around lately guys. I have been feeling at my worse due to the stress of the end of the semester. The past couple of days I have felt like I am going to pass out at any moment, and my pain is so high tramadol won't touch it. I'm very glad I only have one final and one presentation left for my degree, because I think this is literally killing me. :(

I've been working a bunch on my business as well lately, and it is going really well. I am always busy with custom orders. Right now I have two blankets to do and a scarf. For November I had a net profit of $100...which is not bad for my first month! Especially since I am not doing this for the money.

I wanted to let you guys know that I am doing a discount for the undiagnosed club here. If you want an item thats on etsy, put in the coupon code UNDIAGNOSED for 20% off. If you request a custom item from me I will automatically put in the discount, so the code won't do anything. I know you guys are crafty, but I wanted to offer it anyway.

Cat, that's awesome about the blanket! I'm timing myself with my crocheting and it takes me about 5 hours to get through one skein right now (each skein is 6 ounces of yarn). I only use 6 skeins to make a blanket though...they end up being about 60" X 47". I'm trying to do one blanket a week right now, which is 35 hours of crocheting...about a full time job I guess...where I make like $1 an hour. ~.~ Oh well, I do it because I enjoy it, thank goodness!
 
Allie, sorry things are so horrible for you. Are you off the pred? Hopefully graduation will be here soon. Do you go back to Germany right after that?

Sunshine, I hope your appt went well and that your GP has a direction to go in.

Hi, everyone else! :)
 
@Cat - I hope your GI doesn't give you an issue with Asocal. If you are doing well, I don't see why he'd pull you off. The side effects are so minimal, you know? As far as cards, I usually always do them, but I wasn't planning on it this year. I send out so many (large family) and I hardly got any in return. So, I figured I'd save the expense this year. I am being a bit of a Scrooge, I guess!


@Sunshine - Any news??


I am still taking it day by day dealing with all my random symptoms: mouth ulcers, mucus (with small traces of blood), rectal pressure, etc. Also, a few weeks ago I had pain in my right leg. I panicked thinking it was a blood clot. But my GP assured me it wasn't, and it went away after a few weeks. Now it's back. So odd...
 
Well, I'm happy! :) Got a call from my GI's nurse, she said that my GI just sent through some refills - about 20 minutes later, my pharmacy called and said my Asacol is ready. Wow, that was fast and easy! I was expecting to have to have another discussion with my GI about side effects (which he was concerned about but I haven't experienced any), but he didn't even need to speak to me himself, the nurse just conveyed the message that I get more refills. Yay! I forgot to ask how many refills he wrote for me, but I'll find out as soon as I pick it up (which won't be for a little bit because I've still got most of a bottle of Asacol still). If he only wrote me a couple refills, I can probably talk him into giving me more when I go to my next GI appointment in January. So I should be set for a little while longer at least.

Sunshine, we're all waiting anxiously to hear how your GP appointment went! Got my fingers crossed for you!

Jill, you're not alone, I've heard other friends of mine say they're not so much in the xmas spirit this year either. One friend said she's not doing a tree nor presents, nothing! I do feel rather xmas-y this year and already have my tree up, and I don't usually do cards but I am going to do them this year. I don't have a huge family and probably won't send out a lot of cards.

I hope your leg is okay! I remember you posted awhile back, maybe during the summer? about how you thought you might have a blood clot in your leg. This seems to be a recurring issue - have you had any tests on your leg? Is it the same leg that was bothering you awhile back? I hope you can figure out what's causing it!

Hi May! How are you doing lately? How's your brother and his wife?

Allie, I hope you can get through your finals and graduation without getting any worse. I hope you've got a nice stretch of relaxing time ahead of you after graduation? How is your blanket selling going to work when you're back in Germany - will you ship overseas? As for my blankets, yeah, I probably could get away with making them smaller and using 6ish skiens of yarn, but we get such cold winters here that I like to make blankets really big so that you can get all bundled up in them. The one I'm making now is for my cousin who is about 6 foot tall (she's quite tall for a girl, and yes she does play basketball!). So I'm trying to make it extra long for her. I made a really long blanket for my brother a few years ago too, he's 6 foot 6 so that one took (I think) 11 skiens of yarn! Ha ha, I'm the shortest one in my family and I'm 5 foot 8. I'm fairly tall but still a shorty to them - not fair!
 
Hi, Cat! I'm doing pretty well. Had some unexplained cramping and D the other morning, and figured it was the cabbage in the soup I had had the night before. Since we'd be eating it two days in a row, I figured I could test the theory, but the second time, I was fine. This is always my issue with foods - any theories I have about what causes me problems go out the window when I test them. Remember when I thought milk bothered me? Not anymore! The only thing that even remotely seems to bother me is really fatty stuff, but even that is inconsistent.

Glad your GI didn't give you grief about Asacol refills. Whoo hoo!!

I think my brother and his wife are fine (=still married) although I haven't heard anything lately. He's been kind of a jerk to my parents, so I am annoyed with him about that. This is his pattern, though - he turns on the "I need you" crap when things are bad for him, then when things are good (his wife is very successful and prosperous), he basically tells us all to go to hell. So unfortunately in that regard it doesn't seem anything has changed for the time being. Hopefully his near death experience will keep him off of drugs. But who knows? Supposedly he flatlined in the hospital a while back before the latest episode in August. He is a mystery to me.

Yes, Jill, I hope your leg is alright too.

Can't wait to hear from Sunshine!
 
May, I hope your brother grows up soon and stops playing emotional games with your parents like that. My brother, as you know, had been doing some similar stuff, but it seems like he's finally coming around. He recently got a good job (computer programming, which he taught himself to do - and it's pretty amazing that he got hired considering he dropped out of college and has no degree and is self-taught) and he appears to have stopped doing drugs!! He's been a lot less hostile to me lately, well, he barely talks to me, but when he does it's civil. And he's actively apartment hunting so that's great. I hope your brother gets his act together too - and I hope my brother continues this way!

Sunshine, where are you? Still got my fingers crossed!
 
Yeah, I'm off the pred (I need to change my siggy). As soon as I went from 10mg to 5 all my symptoms came back. Once I graduate my husband and I will be spending time with family, and then I will be back in Germany on New Year's Eve.

Cat, yeah....I'm hoping I make it too. All I have left at this point is my capstone presentation on Tuesday, but once Stuart gets here we will be running around visiting his family and mine. Today I got an email from my mother in law...it made me so mad, it was a plan of every day when Stuart is here. I sent back a very angry email telling her we are a family and we can manage our own time. She had left no time to visit my family, and she also said that we would be very busy because "we are all healthy and we can handle it". Um, excuse me, I cannot handle being busy all the time for over two weeks. I am not healthy. I am now regretting deciding we would stay with them while he is here....
 
Allie, I can not believe you m-i-l! I'm glad you put your foot down as people like that can just walk all over you.

I'm doing ok, hoping to hear from Rheumy soon. Honestly am scared to even open the envelope when the letter comes, I am so afraid of reading "not going to help you any more, go away". If it feels thin then no blood test forms in etc which would be a bad sign :( What a state to be in hey?

Started my new contraception pill this week and signs are promising. I swear after the first pill my tummy was less bloated the next day. And amazingly when I changed clothes earlier, my legs were bare (i know this sound strange but read on). At least a week before my period I would get so bloated and retain so much water, that for example, a thin seam on my trousers would create an indent down my leg which was actually painful. And I will come on tomorrow or Saturday, which is amazing, there is nothing there! The only marks that are there don't hurt and since I left my trousers on late and have been sat in bed for a few hours in the same position, that explains that.

I hope this is a sign that this pill will be good for me. Of course I expect disruption to my cycle and some side effects but that should all settle in time. Just scared of gaining weight, in which case i will be straight back to the Nurse demanding something else lol.

Other than that have got yet another virus, not too bothersome but really fed up of all these bugs. I swear I haven't been virus free since late August. Another throat bug but the last one went in a few days and this one doesn't seem to be coming to much.

Speaking of xmas crafts, I haven't been crafty in so long because of being ill, but doing 2crafty gifts and can't wait to get started, I am decorating a cake carry case and sweetie jar with gems and different beads for two of my friends.
 
Well Thanksgiving sucked

Hey Guys,

Had to share with all of you my wonderful holiday. Granted, Thanksgiving Day itself was fine- went to see my parents and had a great meal. It wasn't until Thanksgiving night that it all happened... :frown:

I went home, and as soon as I got there, around 5:30, I started to get a headache. I took some Tylenol and changed clothes. About an hour later, my head was pounding- you guys know about my Blood Pressure problems (?)... yeah I am still fighting that. I took my BP- it was 160/140- OMG!! :ywow:My heart rate was 130. Took my emergency BP pills, and some Imitrex for my pounding migraine that was coming, turned off all the lights and TV and layed down to rest.

About an our later, I sat straight up in bed, ran to the bathroom, and vomited for I swear 10-15 mintues. It hurt so bad. That was the beginning... I threw up about every hour from then until the following Wednesday morning- almost straight (6 days). I burst the blood vessels in my eyes. And to add to that, on Friday, I thought I would make some sweet tea to try to settle my stomach, so I went to the kitchen. As I was making it, I got REALLY hot and sweaty and the room started to spin. I put my head down on the counter for a moment. When I thought it was over, I lifted my head and everything went black. I passed out in my kitchen, having hit my face on my kitchen counter and I bruised and scraped up my knee- don't ask me how. :yfaint: Now I have a beautiful bruise on my cheek- adding insult to injury.

Well Wednesday morning, after suffering for days with no relief in sight, I finally got up the strength to drive myself to the doctor. She asked me to pee in a cup, and when I couldn't and when she saw my heart rate- it was 145- she sent me to the ER. I was there 6hrs. (But the way, this a new GP who is awesome) They gave me two bags of fluids and some Zofran and Phenergan to stop my vomiting. Then I finally went home. I have now lost 30 lbs.

Now I am somewhat better, but I hurt all over still from being so dehyrdrated. And I am still having my headaches and my heart rate is still high. I just don't know why the BP meds won't work- ugh. :yfrown: So annoying. I go back on Wed 12/7/11 for a follow-up with my GP. I will keep you guys updated. Wish me luck.:ybiggrin:
 
Oh noooooooooo I missed a call on home phone from Rheumy's secretary! Really cross she didn't phone my mobile since they have it on file. Now she is off on leave until Thursday but she is leaving the message with another secretary, but still will have to wait until Monday until I can speak with her.

Really worried it sounds like a "go away we're not going to help you any more" message since he has always been happy to deal with me by letter in the past. But nothing I can do until Monday so I will try not to worry. Maybe a "still thinking of how best to help" message, I hope so. Really glad I am seeing MP in a weeks time to discuss complaint now. I am getting no help fast that's for sure. And passing again today thick black mucus doesn't help me feel better. Something is drastically wrong yet the people who have the power to help me just do not see it :( I think in my more depressed moments that if I should die, they can cut me open and at least tell my mother what was wrong with me!

I am already so paranoid about being fobbed off and refused help the last thing I needed was a weeknd to think about what I might be told Monday, I will be setting my alarm clock!

EDIT: Maybe the message wasn't urgent or bad enough to phone my mobile... I hope so!
 
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Shan, that sounds horrible! I hope they can figure out what caused this episode and why your BP won't go down. Glad to hear that you have a good GP! Good luck on Wednesday and please do keep us posted. Sending you a great big hug! Hope you can hang in there until Wed - if not, please go back to the ER. What you went through sounds really scary and not something to mess around with!

Star, sorry to hear that you missed the call, I hope it's like you said and maybe wasn't urgent or bad enough to call your cell. I am glad to hear that a change of birth control is doing you some good - I experienced the same thing when I switched from the pill to the nuva ring. I suddenly felt tons better, and it was like I hadn't even realized that I felt all that bad to begin with. I had been ill for about 6 months at the time I made the switch, so I was used to feeling bad most of the time, and it was like a little weight had lifted. I certainly still had flares and lots of bad days at that time, but at least there was one less thing making me feel worse, you know? I hope the weekend goes by quickly and smoothly for you and that the call on Monday is a good one.

Allie, that sounds like some "plan" your m-i-l has cooked up! If it were me, I'd come up with my own "plan" and email it right back to her. Maybe with some information about Lupus attached to the email too. Where does she get off, saying everyone's healthy??? I had similar issues with my father-in-law when I first became ill. In a nutshell, at easter in 2010, he had too much to drink and proceeded to tell me I'm either faking or not as sick as I say I am, that I should just eat normal food with the rest of the family, and that my marriage will fall apart if I'm not able to cook normal food with my husband, etc. Even when I started crying, he kept lecturing me, said he couldn't imagine being ill (so therefore it wasn't possible for me to be so ill if he couldn't picture it?). Things have fortunately gotten a lot better between us since then, he even defended me at a more recent family gathering when my hubby made a joke about how I can't eat many foods - my f-i-l immediately jumped to my defense and said that my hubby should not joke about that and that it must be really hard not to be able to eat what I want. So anyway, I hope your m-i-l comes around too and realizes that you're ill and what that means. Sometimes it just takes some time. My mother-in-law had been super supportive the whole time I've been ill, so after the easter incident, I emailed her some info about Crohn's (as that's always what I've suspected I've got). She wrote back saying she had no idea it was so painful and debilitating and she shared that info with my f-i-l and I think that's what got him to start to change his thinking. So, if your m-i-l is married, perhaps send some Lupus info to your f-i-l if he's more caring about your illness, and he could share it with his wife. Like my in-laws, they probably have no clue as to how horrible and painful your illness can be. They might know some basics but I would wager that they probably don't know the full scope of it. Good luck, I hope she doesn't stress you out too much. If all else fails, can your husband stand up to her and say something like "We can't do what you want right now, Allie's really sick and needs to rest"?
 
Yes I hope so too.

I know exactly what you mean Cat. I took all the bloating etc to be quite normal as part of my cycle. It's great something is making me feel better even in a small way, and anything that soothes my tummy is even better.

I reckon the Rheumy call was just to say he is still thinking on things or something like that, as she did say last time he would be in touch end of this week. Just frustrating to have to wait until Monday!

Does anyone remember I started having tests again 2 years ago on a swollen arm, and things went downhill from there? Well it still is swollen and gross looking. 2 years later and I still don't know why. Worse this time of year as on top of the pain there, when I wear a sweater and coat, that side is so much tighter in all my winter clothes, I am constantly pulling at sleeve etc to try and release the pressure/strain it really is horribly annoying.
 
Sorry to hear that, Star. That sounds really uncomfortable, at the very least. I hope those of you who are suffering so badly get sorted out soon!! Ugh! I feel so badly for you all.
 
yeah hi, i am in the undiagnosed club lol for sure...
I am 27.. i havnt been able to work for 9 months... i have an anal fistula and perennial abscess... also have a skin rash/sores on my lower abdomen (the skin) it is painful. I have goe to the hospital like 6 times cause of a blood on my toilet tissue when i was 18 - 20 ( i didnt know what it was.. i just knew it was bad... they stuck their fingers in my bum didnt feel anything then sent me home...)
my earliest memory of something bad like blood in my stool was when i was 5/ my dad took me to a dr and i did a poop at his practice and they checked it and they didnt see anything in there and said "she must have eaten something red"... then again when i was like 10 when i told my doctor my bum hurt... (she asked me if i stuck my fingers in t here and looked at it and that was it) then like i said when i was 12 i started coughing up blood and pooping blood... (endoscopy and they found scar tissue of a ulcer in my stomach) then they said it was cause of stress.. then no more about it.... 13/14 got boils.. boils boils... between legs.... enlarged lymph nodes under arms.... yeah that kept happening boils got bigger.... (i still get them regularly and multiple) hidredenitis supperativa.... still undiagnosed and crohn's disease.. but i am finally goin to a GI.... yay! the right dr! finally.. i am getting a endoscopy and colonoscopy... so yeah now im 27 and i feel isolated and im a hermit pretty much... now im to the point where i get regular incontinance, skin sores, i have sleep apnea cause i have ulcers behind my throat.... i have depression.... bloody stools, polyp tail (skin tag) outside my bum that looks like an elephant ear (hubby took a pic of it so i could see it) cause he just said it was extra skin.... i have a fissure next to it and i have things inside my bum... im in pain all the time and have joint pain 24.7... ulcers in my mouth and bony growths.... i cant walk more than 100 ft and my ankles cant take my weight anymore... but oh well .... everytime i asked someone for help they sent me home... i have been to numerous dr's... even the gp over here wouldnt look at it and kept telling me it was a hemorroid... i seen an ecrone dr and he tested my thyroid and tested me for cushings.. yeah i dont have them... i told him about my butt he said oh you just have a hemorrid... wtf? why wont people help me?... i go there bleeding and crying in pain and they give me prep H? i tel them i have a perianal skin tag... they told me how you you know the word perianal geez like i cant learn about my own symtoms?... man anyways physical symptoms just showed up like the rash/sores/scar things that are huge and look like holes.. and the fact that i told the dr that i would sue for malpractice if he didnt help me get better and keep misdiagnosing me... so now like i said sucess on a gi appointment finally!... oh dont forget the family and friends that think your a hypocondriact and isolate you cause you cant go out cause you are sick... blah... anyways.. i thought id type something .... im new nice to meet you all..... will keep posted about the endoscopy and colonoscapy results
 
Wow, you have really been through it!! I hope that a GI doc will fix you right up. I can't believe that no one ever referred you to a GI before with all your symptoms. Makes me appreciate my GP big time. I hope you get some help soon! ((hugs))
 
I hope you find some answers, and good on you getting someone to help you, shocking isn't it when you have to make such threats just to get help and be listened to. Kind of what I am having to do right now too. Do pop back and let us know how you get on.

I am still doing good on my new contraceptive pill, just 4 days in and I have lost weight! I did put alot on with the predecessor so was hoping to lose some but didn't realise it would happen so quick. My jeans slid on, did up easily and so comfortable even when sitting down. A few weeks ago they were so tight I have been living in my "lounge" trousers. Been eating better too but again that's only 4 days.

So hopefully I will maintain this and it will be kind to my cycle. It really is too early to call it but looks like i'm onto a winner with this one. Am bloated, but being on my period I would be, not painful bloated though which is great, and only my belly, no "train tracks" on legs still either. If this one doesn't work out the mini pill clearly suits me in some ways so I can just ask for another brand.

Now Monday morning needs to hurry up so I can get the message from Rheumy lol.
 
Does that mean it's progesterone only since it's the mini pill? I think that is what that means, but I can't remember for sure. Maybe you have issues with estrogen sensitivity or something. I know I do.

Alright, well, I am dying to know what is going on with Sunshine. Wonder if she got admitted or something?
 
May, Sunshine's been posting on facebook - she's been admitted to the hospital but isn't sure how long she'll be there. Apparently she got diagnosed based on prior test results (her original pill cam). They prescribed her Levsin (hyoscyamine), pred (30 mg) and pentasa. But she was having trouble swallowing the pills or keeping them down, and she went to the hospital this morning and was admitted. (Sunshine, if you see this, please correct me if I got anything wrong! Just going by what I've seen you post on FB!) I'm not sure what they're doing in the hospital and she said she's not sure how long she'll be there. :(
 
Mayflower537 said:
Does that mean it's progesterone only since it's the mini pill? I think that is what that means, but I can't remember for sure. Maybe you have issues with estrogen sensitivity or something. I know I do.

Alright, well, I am dying to know what is going on with Sunshine. Wonder if she got admitted or something?
Click to expand...


I am worried about Sunshine too :(

Yep it's the progesterone only pill. Wasn't my choice to change but it was done for my benefit so I went along with it (well I didn't have much choice since they wouldn't prescribe the previous one anymore). :p The old one was fine as far as I was concerned (although not as effective as a few years ago I have to say) but I am seeing now it wasn't as good as I thought.

Will wait and see!
 
I don't want to say anything much...but I just want you all to know that Sunshine is ok :)
She is admitted to the hospital and they are working on a plan of action.
Cat, you did get what you said correct about her prescribed meds prior to admission.
I would share more, but I don't want to break any confidence with her. You all seem so worried tho that I wanted to jump in and let you know she's ok. I'm sure she'll pop in when she feels better and let everyone know herself what is going on :)
 
Well I finally got my message and of course I was worrying over nothing, but I can't help it the way I have been treated by some departments there!

Rheumy has reviewed my notes and is waiting on some opinions from other Drs. He has requested a bone scan for me on an urgent basis and then will see me in clinic to discuss (I have an appointment booked anyway for about 5 weeks). This presumably is to focus on my shoulder pain.

Now I am in two minds here. On the one side I have always thought not enough attention/tests on my shoulder have been done so that is good they are looking at that in more detail.

On the other side I don't see how a bone scan could dx any tummy issues, since we all know it isn't IBS. So I am worried in a way they will pick up something in my shoulder and just dismiss the rest of it as IBS. Really worried in fact.

So I see GI in a weeks time but I don't see how he will be helpful. And MP on Friday. I am really hoping he can help me get one or more of the tests I have been turned down for.
 
I guess my only advice is to try and be positive. It's easy not to be when you've been blocked at every corner it seems. You've definitely got a conscientious doctor in your camp who's getting you a test maybe you didn't even plan on, so try to focus on that instead of what may or may not happen with someone dismissing tummy issues as IBS. Maybe he is looking at things from an entirely different viewpoint and with different possibilities in mind, which could be beneficial. In any case, I'm glad you are getting some testing done, no matter what it's for. And you never know how the results of this bone scan could open doors to other tests that you might need.
 
Mayflower537 said:
I guess my only advice is to try and be positive. It's easy not to be when you've been blocked at every corner it seems. You've definitely got a conscientious doctor in your camp who's getting you a test maybe you didn't even plan on, so try to focus on that instead of what may or may not happen with someone dismissing tummy issues as IBS. Maybe he is looking at things from an entirely different viewpoint and with different possibilities in mind, which could be beneficial. In any case, I'm glad you are getting some testing done, no matter what it's for. And you never know how the results of this bone scan could open doors to other tests that you might need.
Click to expand...

Yep I am trying to be positive and focus on the things you say. I am certainly pleased for a more in depth look at my shoulder, since from the pain it affects the bone, no way is it just the muscles! Although I have to say ironically, I haven't had a painkiller in months as it hasn't been bad enough, been needing them daily for 2 years lol, but the underlying problem is still there I can feel it, is just not so bad right now.

Didn't expect any more tests this soon either so quite pleased about that, sounds as if it *may* happen before Christmas which has really shocked me.
 
Star, the shoulder and the guts may be unrelated - or they may be related, who knows. Maybe finding out the cause of your shoulder pain will give you more clues as to what's going on in your guts. Maybe some type of arthritis (reactive? Ankylosing Spondylitis?) that's commonly found in conjunction with IBD or something like that. Or, maybe once they find out the cause, it will be a relatively easy fix. Physical therapy helped my hip quite a bit, and now that they've determined it's not arthritis after all but bursitis instead, I know that stretching is the best exercise for my hips and I feel nearly normal again, very little pain. At any rate, I don't think testing your shoulder is going to lead them back to an IBS diagnosis. At least I hope not!

I haven't seen much in the way of updates from Sunshine. She hasn't posted on facebook in several days. I hope she's on the mend!

How's everyone else doing? I'm pretty well, still stressed about the holidays and busy with work, but otherwise feeling pretty good. I'm about a third of the way through skien #5 on the blanket I'm making for my cousin so I should have it done by xmas. I still have to make and send cards though! Eek! Plus I have to finish my shopping and wrap everything... stress! I enjoy the holidays, but I also enjoy when they're over and I can relax again. Hubby's stressed too, he's technically part-time at the portrait place but he is working 40 hours this week (and that's assuming they actually let him leave on time - often, they're still really busy when it's time for him to leave and they sometimes keep him an hour or two late). And of course he's got his other job teaching but that's only like 3 hours per week. Makes me kind of glad I "only" work 40 hours per week! At least my brother is moving out - he's been cleaning and organizing like a madman and seems to be packing, and he took 4 bags of stuff to Goodwill yesterday. Yay! I'm SO looking forward to when the holidays are over and I can relax in my house without my crazy brother being there. :) That'll be my xmas gift - rest and relaxation and de-stressing!
 
Cat I am pleased to hear your brother is moving out, I know how much that has been stressing you out, so he finally got his butt into gear hey?

Good news, Rheumy has asked to see me Monday, which I am really glad about, because I wondered all night where he was going with all this, because it has really come out of the blue and I am puzzled at the urgency. I did have bone markers tested in my blood in September, that is the only thing I can think of. Although they have been tested several times previously and always been normal. I am bemused anyway but really really pleased I can see him soon. So I can see why the bone test and how/if that relates to the stomach issues, and what is the current thinking in that area. If he does blood I will ask for the ferretin to be done again as had more black bloody mucus.

They told me last time they can't be 100% sure the two issues are connected. But after the shoulder pain started my stomach problems went drastically downhill, and the med that had been working became ineffective, that much I do know.

So I have Rheumy @1:30 and Gastro @3:15 so I expect I will have to ask to take my paper notes with me when I leave Rheumy lol (there is alot on computer but they mainly maintain a paper file at my Hospital, scanning in anything they deem neccessary I think).
 
Star, yeah, I'm so glad my bro is moving soon! He definitely has been stressing me out. Of course, the majority of the time he lived with me, he was taking drugs and working a slacker job and was pretty hostile to me at times. Just recently he got a good job, seems to have quit drugs, and is a lot nicer to me lately. Why did I have to live with the slacker/stoner version of him - why couldn't this nice mature version of him have been the one to live with me for the past year and a half??? Oh well, can't undo the past. I am glad he's moving out and hopefully finally becoming a mature adult. (He's 26, took him long enough! Ha ha)

Glad to hear you got a quick rheumy appointment, I hope he can give you some satisfactory reasons as to why he wants to do the bone scan. So by this time next week you'll have seen your MP, rheumy, and GI? I hope some forward progress can be made with all 3! Good luck and please keep us posted - in particular I hope your MP can get you some of those tests that were rejected! Fingers crossed for you!

I hope Sunshine's okay and Allie too - haven't heard from either in a little while. I worry about you guys when you don't post! Especially when I know one of you is in the hospital. :( Sunshine, keeping you in my thoughts and hoping you can get to feeling tons better now that you're diagnosed and getting care! Allie, I'm assuming you're busy with end of school stuff - hang in there, I hope the stress isn't causing too much horribleness, and I hope you can also get properly diagnosed really soon. You see your rheumy once more before going back to Germany, right? If it were me, I'd go to that appointment armed with all sorts of info about Lupus, the diagnostic criteria, info showing that pred doesn't work for IBS or fibro, etc, and demand some answers!

I hope everyone else is doing okay. It worries me when things slow down in the club - I hope that means everyone is feeling well enough to be away from the computer!
 
I'm here. I've been icky and retreating into crafty goodness so I can forget how much my body sucks. I feel bad for neglecting all of you, but I've been putting the laptop to the side when I get home from work so I haven't been around.
 
Carrie, sorry to hear that. :( You've got some upcoming appointments, right? Any tests on the horizon? I know you mentioned stuff like dentist appointments too, I hope some of your upcoming appointments are GI-related can point you in the direction of a diagnosis. It seems like you've been suffering with no end in sight. :(

I did a stupid thing today. They had a pizza day at work. I was just drooooooling over the smell, it was heavenly. So on my lunch hour I caved to temptation and went out and got a slice of real pizza. (Sometimes at home we'll make a special pizza for me, using goat cheese as I just cannot digest regular cheese.) I took a bunch of lactose enzyme pills before eating my slice of pizza, but even so my entire digestive system is unhappy with me. Immediately after finishing my pizza, I cramped up and got nauseous and my acid reflux went into overdrive. Fortunately I have plenty of Zofran and Tums which are helping quite a bit, but boy was it not a good idea for me to eat something that I know is a trigger food. I'm kind of glad that I felt the consequences immediately - hopefully that will remind my brain the next time that I smell something delicious but dangerous!
 
I'm about to be in the same boat as you I guess Cat ~ I'm attempting to make homemade pizza tonight :)
My niece made it the other day and I can't stop thinking about it haha.
Oh well...I've only been eating bite size meals like a mouse this week, so I'll probably end up not really eating it! :/

Sunshine was discharged from the hospital this afternoon, and she seems to be feeling much better than when she was admitted :)
Hopefully she will come and update you all soon!
 
Tracy, thanks for the update on Sunshine! So glad to hear she's feeling better and has been discharged, that's wonderful news. :) Enjoy your little bites of pizza, I hope it doesn't affect you like it did me. I've taken about 10 Tums now but am still experiencing some reflux, bleh!
 
oh I have pizza in my head now..

I had a bunch of blood tests this morning for my endocrinologist appt next Monday. I also have my rheumatologist and upper endoscopy on Wednesday then Thursday. I went to the ophthalmologist last week for my plaquenil check which was fine, and I got a new prescription for glasses. I saw the dentist recently and had an exposed root(?) where my gums had receded so he had to bond it. I'm not expecting much, except perhaps another follow-up endoscopy appointment :p
 
Ooh, I love getting new glasses. My vision insurance isn't the best, though. My coverage only allows me to get new frames once every two years. I got new frames in Jan 2011, so I have to wait a little over a year before I get new frames again. I do get to get new lenses next month though which is good because my current ones have a big scratch (I have no idea how, either - I try to take really good care of my glasses).

I hope one of the tests you're having can shed some light on things. Do you know what blood tests they're doing? Just typical stuff like CBC or are they looking for specific illnesses with the tests?
 
Hey everyoneeee, i've been very very sick the past week. I could not stop throwing up or having diarrhea. On Friday morning I had gone to an emergency appointment with my GI, and he gave me prednisone and pentasa to start taking for crohn's, but I started taking it and since I was so sick it wouldn't stay down.
Ended up going to the hospital on Saturday morning at about 7am to the ER, they did an Xray of my abdomen and blood work, and it showed that all of my electrolytes and blood levels were all dangerously low, so they admitted me to the hospital... put me on some nausea medicine and it didn't work. I kept throwing up.
they then put me on a potassium pump, gave me sodium, glucose, and prednisone steroid injections through my IV every few hours. I was on a liquid diet, and then everyday upgraded my diet a little bit until I could finally tolerate semi-solid foods, like eggs and a pancake for breakfast.
I'm feeling much better now. Since the prednisone steroid injections were higher than my dose that my GI doctor had originally prescribed I had to get a new prescription of it. I was only suppose to be on prednisone for about a month.. but now I will be on prednisone 40mg and tapering down for about 3 months. I'm hoping that tomorrow when I take the pill versions of pred that my tummy will be okay and not get too nauseated like it did the first time i tried last friday.
I was also prescribed from my GI doctor, Pentasa, but they are HUGE, so I need to call him about that, because my reflux is just awful with big pills. Maybe I can do shot injections or something, or even if he gives me a smaller dose of pentasa, but just have to take more pills during the day. that would work too, but i'll have to call him about that.
So anyway... just letting you all know that I am officially diagnosed with Crohn's... and my life is changed, and I'm upset about this.. but i know that now if I can't get out of a flare, that I can go to the hospital and they can help if it's out of control like it just was recently. Just have to change my lifestyle a little and the way I eat to avoid flare up type foods, and of course take my medicine regularly. God wouldn't give us more than we can handle, but I think he trusts us too much sometimes lol.. :/
The past 4 days in the hospital was sooo hard, I have bruises all over my hands and arms from them trying to get my tiny veins to work.. and then of course they had busted a few of them too... :/ but I'm alive and I'm better than I was a few days ago, so I'm thankful for that. Hope things get better from here! :)

I miss you all! I kept thinking about you guys when I was in the hospital! My boyfriend was super sweet, and stayed with me every night that I was at the hospital. :) but I wish that my undiagnosed friends were with me when I was there. I could of used a bunch of hugs! <3

How is everyone doing!!?! :)
 
after all of what i've been through the past couple days, I still feel nauseous, will this nausea feeling ever go away?! :/ Oh well, I guess one problem at a time, right? Today will be my first day taking prednisone by mouth since I got sick last friday... o_O
 
Sunshine, I am so glad to hear from you. It sucks to have Crohns but really, it's just putting a name to what you already were dealing with. It's a technicality that equates to your getting treatment to help you feel better. I hope you can keep your pills down this morning and start really feeling better. You have really been through it!!

Thinking of you,
May
xx
 
Hi Sunshine, you've had a rough week haven't you! I'm so glad you're getting proper treatment finally, and I hope you figure out a way to get the Pentasa down. I haven't been on that particular one myself but I have heard they're huge pills. I hope you can figure out something that works! Are you supposed to take it with food? I am on Asacol which is a very similar med and I'm supposed to take it 3x per day just after I eat. So maybe having food in your stomach when you take the Pentasa would help keep it down if you haven't tried that already? Personally, sometimes it's hard for me to eat 3 meals per day just to take my Asacol, but I've found that even drinking an Ensure or having a little food like toast is enough. (Supposedly Asacol can cause nausea if you take it on an empty stomach, so Pentasa might be the same.) Anyway, good luck with it, I hope you can figure out a good system for keeping it down! Did they give you anything for the nausea? I hope things continue to improve. Sending you a big hug!
 
Great to hear from you Sunshine :)

I decided to cancel my GI appointment to focus on Rheumy. Too much bother with notes etc and if I get upset or angry I am not going to want to go see GI after. I now go to see him in May which is fine with me!
 
Sunshine, what a ride you went through at the hospital! :( The good news is you are out of that prison (it feels like one anyway) and you are on proper meds. The pred should help a lot! :) And you have an official diagnosis...YAY! Remember, its not that you now have crohns...you had it all along, you just needed a name for it! I hope the bruises clear up soon...when I was hospitalized last April my veins did the same thing, but mine are big. The bruises took about a week to heal. They were so ugly!

I'm sorry I haven't been around guys. Crohnsforum usually emails me when someone posts on this thread and the emails stopped coming. O.O I have been so busy I forgot to check it myself.

So I have a new symptom...well, not really new, just now its showing. My left wrist is twice the size of my right wrist. The joint anyway. There is a huge bulge coming out of the side of my wrist. >.< It hurts a lot as well. I've tried aleve and tramadol to try and get it to go down, but it won't. None of it is really touching the pain either. Whats weird is I'm right handed, so I really don't think this is from overuse of my hand...even with crocheting its my right wrist that does most of the work (which is why I have carpel tunnel in that wrist). I'm hoping this is just more proof something is not right. I have one more rheumy appt before I go back to Germany and I am praying that a miracle gets me some kind of diagnosis or at least have them saying something is not right. I don't want to go back to Germany with nothing to show the military doctors.

My CT scan is tomorrow as well. just came back from getting the prep....and it isn't what I thought it would be. Every CT scan I've been given a clear liquid that tastes like lemonade....well, this stuff is the barium like the SBFT. YUCK....I do not want to go through the toilet issues I did last time...in a sorority house...oh well. :(
 

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