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... I knew something seemed fishy about zoloft. As soon as she wrote it on the pad I was thinking to myself 'that's not familiar, is that right?' I hope she isn't trying to sneak antidepressants on me, I told her straight up I have no issues with stress and will only take it as a treatment for IBS.

I will hear back tomorrow morning. It won't be pretty if I learn that she was trying to pull a fast one.

Thanks everyone,

Nathan

EDIT: Also, I've got this horrid swollen throat. Having troubles with things getting caught in my throat, gotta always have something to drink while I'm eating, and swallowing anything semi-solid generally has a bit of pain. Anyone else have that? Anything to be done for it? I mentioned it to doc, she said probably viral (are there lessons in willful ignorance in med school? There must be) and said nothing else about it.
 
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Sorry you are having a tough time Allie. I mean this in the nicest way, but perhaps you have less spoons in the drawer than you thought and you need to re-jig your activities. I understand the shutter issue can't be helped, but add in a ball and auditions, maybe you should cut down your activity for a little while until you feel a bit better. I know it's horrible, and feels like you are being defeated by the illness, and the illness is winning, but that's got to be better than such an awful day right? Sometimes the illness is better than others, and in those worse times adjusting your life to accomadate more resting would be good, just in the way I am sure you do more when it's better.

I've just realised the supplements I got (2x day) with the Pred can't be taken within 2 hours of food- so that's 8 hours a day where I can't eat. Along with an appetite increasing drug is not going to be good :(
 
so I got my jessica simpson bangs and one of my pair of bangs from China. very nice! Two friends who came over last night had no idea they were fake (the ones from china are really thick and shiny so its a slightly giveaway). I have the JS ones on at work here and no one can tell. at. all. even the women so you know its blending in well. I can't seem to take a picture for anything, but I'll try to get some up to show all of you. The bangs I am still waiting for are side swept. The two I have now are blunt cut (china) and basic bangs with long sides (JS).

If you are suffering from thinning hair on top I really recommend looking at clip in bangs. the ones I got are synthetic hair.

eta: they're not expensive either. the ones I got on ebay were like... $3 plus $2 shipping, the ones on amazon were $13 with prime shipping.
 
You are absolutely right star. I am doing way too much. Now that its all over, i've been resting all day. And I plan to rest this weekend other than going and getting our puppy. :) I always try way too hard to beat this! Lets just hope this flare will be worth it and they can figure out what is inflammed.

Is it the supplements you can't take with food or the pred? I have to take my pred with food or milk or I get sick (throw up/ d). It even says on the bottle to take with food. So I wouldn't take it on an empty stomach! I really hope it helps you get to remission.
 
Yeah I have to take the pred with food, and the supplements have to be timed. So is tricky to figure out. Have to take the Pred at 8am which will make it easier. Will be getting a call back from Pharmacy (end of next week, due to public holidays) to advise me so until then I will do the 4 hour window just to be safe.
 
Wow this thread has been uber busy lately. I have skimmed it.

Allie - so sorry your in-laws are like that and that your husband is so negatively influenced by them. Also sorry that you haven't improved much health-wise.

Carrie - I've eyed that Jessica Simpson hair before. That's cool that it looks so good. I'm still hanging on to hope that now that my ferritin is in the range of where it's supposed to be that I'll get some regrowth going here eventually. I'm going to give it a few more months. That's one thing that stinks about hair - it takes months to know if something is working or not. I also bought a Henna block from LUSH b/c I read a zillion reviews and lots of people say that it makes their hair a lot thicker b/c it coats the strands or something. I like LUSH products anyway, so I am giving it a try. It promises to be a messy process, but I've wanted to dye my hair darker anyway, and this is supposed to actually be good for hair as opposed to damaging. I think I'm going to do my strand test later on today, if I have time.

Star - really sorry about the PET scan. I hope the med trial will bring you some relief. Everyone has given you very good advice. Maybe when you're feeling better from the pred (I'm gonna be positive about that for you), things won't look so bad. Chin up!

Cat - Hi! Sorry about your GERD. Hope it gets under control soon.

And hi to everyone else as well.

I am still having D in the mornings a lot. I got my probiotics yesterday. After reading the thread that David so nicely organized, I went with Garden of Life. Took one yesterday. I'm also on my period, though, so everything is crazy anyway. Yesterday I felt miserable (first real day of my period). Diarrhea in the morning and then by the late afternoon was painfully constipated. Lovely! Anyway, maybe this probiotic thing will help sort things out for me. Otherwise, I'm going to see someone, and I can't decide if it'll be my GI or not. Pretty sure that even though my symptoms are totally different now, he'll just slap me on another round of Xifaxan. Or that horrible drug for IBS-D which has "colitis" listed as a side effect...?!??

Okay, well, everyone try and have a decent weekend.
 
Leebie, thanks for checking in - how are you doing? Any closer to a diagnosis?

Allie, don't worry about what strangers think of you in a wheelchair. The only time I questioned someone's need to be in a wheelchair was when I was in Chicago once and I saw a young guy in a wheelchair, pushing it with his own feet. :p He just seemed to be goofing around. But anyone else, even someone as young as you, I wouldn't question - particularly if I also noticed your med alert bracelet! So don't worry about strangers, if they give you weird looks it's their problem, not yours, and they should just be happy that they have NO idea what it's like to live in your world/body! And, I agree with Star, perhaps it's time to re-evaluate the daily spoon allottment (how do you spell that word?) and maybe re-prioritize which activities you want to do and which ones can go on the backburner for now. I've had to do that plenty of times when I was really ill too, it's not fun but it is necessary sometimes. I'd send you some of my spoons if I could!

Nathan, I think you're on to something with the lessons in willful ignorance in med school! Like how in retail they say "the customer is always right" - maybe in med school they say "the patient is always wrong", ha ha. Have you heard anything back about the Zoloft issue? If you haven't yet, when you do talk to the doc, perhaps ask about something like Amitriptyine (that's the generic, I think the brand name is Elavil) as something like that would work on IBS (assuming you have IBS, which I think you don't, but it is worth a try - my GI swears Amitriptyline should work on IBD too but I don't really believe him).

Star, can I ask what the supplements are? I take a pile of supps every day and it seems like all of mine say on the labels that they work better if taken with food. So I take a few with each meal (except fish oil, I don't want fish burps so I take that just before bed - if I get fish burps, I have them when I'm sleeping!). Maybe you could switch to a similar supp that can be taken with food? Because yeah, on pred you'll likely have an appetite AND feel well enough to eat so it might be a difficult time if you aren't able to eat for long stretches!

Carrie, so the bangs match your hair color pretty well too? Do you color your hair? I color my hair regularly but I stay away from permanent dye and use the "level 2" 28 days type of hair dye as it's less damaging, so as a result my color tends to fade fairly quickly. I wonder how noticeable it'd be if my hair color started fading but my bangs stayed the same color.

May, have you tried psyllium? There's a long thread about it in the diet & fitness part of the forum. Dusty's daughter has been using it for awhile with great results, so a few months ago I decided to give it a try myself, and it's excellent for both firming up and cutting down on the number of bowel movements. Even in remission, I was having solid poos but was still going anywhere from 4 to 10+ times per day. I now take a teaspoon of psyllium once per day and I have 2 to 4 BMs daily, still formed and solid, no constipation and no d. It's good stuff! If the probiotics don't help then you might want to look into psyllium. It's pretty cheap, doesn't really taste like anything, is easy to take (just mix a teaspoon or so into a glass of water) and that's it! It's been wonderful for me and there's a few others in that thread who have tried it with great results too. It should work for IBD or IBS - it is fiber, but even with IBD it's easy on me, I think that's because it's soluble fiber (insoluble fiber is really rough on me). If you decide to try it, you can get it as Metamucil (contains additives though which can cause cramping) or just as plain old psyllium husks (less risk of cramping although you will cramp/bloat if you take too much at once - can be found in health food stores or online).

As for me, I'm doing better than expected, feeling great actually! I ate even more peanut butter cups after I wrote my post yesterday, I probably had 15 of them (at least they're the mini ones and not full-size, but still)! And my GERD is quiet today, which is shocking as peanut butter usually riles it up quite a lot. So, I'm eating safer foods today just to be safe (no peanut butter!), but I feel good and have a fairly busy weekend planned. Really looking forward to the bike ride! So I probably won't be around the forum much this weekend, but even if I don't post, I will try to check in and read when I can - I particularly want to know all about Allie's new puppy and Star's experience with pred! Have a good weekend everyone, I hope your tummies behave themselves.
 
I do color my hair, usually red, but I've gone back to brown for a couple reasons. 1. to use the semi-perm hair color, 2. easier to match fake hair to brown!, 3. even if my hair grows out it shouldn't look too bad.. I hope :)

honestly, I know the color on these bangs isn't exact, but no one else notices at all. They'd have to really be looking at it. It would really depend on how many shades you change your hair color. Each of my bangs is a slightly different color, but they all look ok. Sure, someone will notice when I switch from one type to another, but unless they see me in both, they'd never know they were fake. I don't really care if anyone knows it's fake. lots of people probably think I'm malingering so maybe it's a clue that everything isn't perfect in carrielandia.
 
Star, could you take the supplements with milk? I try and not eat when I take my tramadol (my body has a hard time absorbing both the food and the tramadol for some reason), so if I need to take it around the same time as my pred I take it with milk and it does just fine. I hate having to schedule food with meds like that...not fun!

Carrie, I'm glad the clip-in bangs are working for you! I've got some bald spots towards the front of my head, but they are not visible thank goodness (unless I put my hair in a ponytail). One of my sorority sisters and best friends had ALL of her hair fall out while trying to figure out which illness she was suffering from...she started using weaves when it started to fall out, and then when it was almost all gone she moved to full wigs. We could tell with the wigs, but the weaves always looked real. She was convinced she had lupus, and her ANA was never positive....I tried to calmly explain to her that if her hair was completely falling out, meaning she was very sick, and her ANA was still not positive, she needed to look a different way. She has been diagnosed with fibro and doing much better now though. Anyway, I got off track...I'm sorry you are off the plaquenil, and I'm sorry you are doing worse because of it. Do you have any routes or plans to try and figure out exactly whats going on??

Cat, you are right, I never thought of the whole wheelchair thing that way. They would assume that it was suppose to be that way unless I did something really weird to make them question it. One time I was in wallmart, during a pretty bad flare, and I was watching this woman about my age push up a cart a little bit, go to the electric wheelchair, get in it, move it up along the cart, over and over again to move up in line...I wanted to go, "excuse me, doesn't that defeat the purpose??". Then her mom comes from the other side of the store and gets back in the chair. ~.~ If you are going to commit to using one of those, you shouldn't get out of it to walk across the entire store, even if you want to save a spot in line like that.

I am re-evaluating my spoon rations at the moment, and I should be ok for now. This past month has just been so bad health-wise, then life got in the way of healing. The kidney infection, then the flare bc of the infection, then the in-laws....it was just all too much. Things will be slowing down for me starting this week. I will probably be in the play, but they explained that there is only going to be about 6 rehearsals since it is a murder mystery, and most of it you can't prepare for because it is interactive with the audience. Other than that we have no vacations planned, no people coming, nothing big coming up....so I should be ok. Just the puppy to look forward to. :) I got new pictures of him today and he is going to be a BIG corgi.....he is only 8 weeks old and he will barely fit in my arms. He is going to be my big doggy companion. :) I can already picture him laying down next to me full grown while I'm sick, keeping me company. :) Stuart isn't happy that he is going to be so much bigger than Kallie, but Kallie's corgi side must have been a show sized corgi (they are in the 20 pound range while the bigger corgis are in the 30 pound range). Adrian's mom is 37 pounds, so he is going to be big! The only think about that that makes me sad is not getting to hold him for very long. :(

I hope everyone has a great weekend!
 
I don't have anything going to try to figure out what's wrong. I'm trying to pay off the bill for the insulin tolerance test, and I still need to schedule my gastric emptying study, if I can ever afford it. part of me thinks that I'll probably continue to go downhill while off the plaquenil so maybe something will finally show the eff up.
 
I havent even went to go see a doc, but I get a little blood when I wipe. I dont really have any other side effects, this has been happening on and off for a year, my sister has crohn's. should I probably go see a doc? I went to the ER about 5 weeks ago with chest pains/arm numbness (left side) they said it was a pinched nerve, they said all was fine. They took blood out and it showed I had a slighty higher white blood cell count due to my heart pounding since I was so nervous. The doctor told me I shouldnt be worried. But should I actually be worried?
 
Yeppers, welcome to the club. What color is the blood? If it is bright red, and just when you wipe (so on the TP), its probably hemmeroids (internal or external). External ones are like a pea sized bulge on your anus, and you won't be able to feel internal ones. I bleed bright red sometimes because of my hemmie. If it is on the stool in the toilet, or if the blood is black, that is a completely different story.

Are you having any other symptoms? Diarrhea, pain, etc? If not I don't think you have much to worry about.

Let me just say this though hun, we aren't doctors, so if you feel the need to go to your GP about any of this, you should go. Just sayin'. :)




Carrie, I'm so sorry. :( I feel very lucky that I have insurance that pays everything 100% (go US Army...). But that still doesn't mean everything gets found. I really hope you don't decline like that though. :(
 
allieinwonder said:
Yeppers, welcome to the club. What color is the blood? If it is bright red, and just when you wipe (so on the TP), its probably hemmeroids (internal or external). External ones are like a pea sized bulge on your anus, and you won't be able to feel internal ones. I bleed bright red sometimes because of my hemmie. If it is on the stool in the toilet, or if the blood is black, that is a completely different story.

Are you having any other symptoms? Diarrhea, pain, etc? If not I don't think you have much to worry about.

Let me just say this though hun, we aren't doctors, so if you feel the need to go to your GP about any of this, you should go. Just sayin'. :)




Carrie, I'm so sorry. :( I feel very lucky that I have insurance that pays everything 100% (go US Army...). But that still doesn't mean everything gets found. I really hope you don't decline like that though. :(
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Yea its bright red, and it only happens when I have pretty hard stools, and it is only when I wipe. And I've been having back pains but I've always had that from sports work etc. I also do feel pain shooting up the left and right side of my back, but its not constant, it could be from moving heavy things and such at work. Thanks a lot! :)
 
Carrie, I don't change my hair color by very many shades. My natural hair color is sort of medium golden brown, and I dye it slightly darker and redder. It's probably only a shade or two darker than my natural hair color and it's more red than golden when I color it. So I think the clip-in hair would work for me! I normally either have no bangs or long side-swept bangs, so having the option of regular bangs is intriguing too. I need to place an Amazon order soon anyway so I think I will be adding some bangs to my order. :)

Allie, yep, that sounds like Walmart to me, ha ha. :p I don't like shopping there, I prefer Target, but sometimes I have to go to Walmart because they're the only place that carries multi-packs of my favorite flavor of Gatorade (Rain Berry, although it's purple-colored and I can never remember the name so I always ending up calling it Purple Rain like the Prince song! And I don't like Prince either! :p ). But yeah, I really don't think most people would question you being in a wheelchair unless you got up and started tap-dancing or something. And even then it might not be questioned if you were at Walmart. ;)

And as someone who owns a very large corgi both in body frame size and fatness (she's down to 42 lbs, she was 50 when we got her in Dec 2010!), I think you'll be happy with him in spite of or because of his size. Lily sometimes seems to think she's a human (like when we're eating and she's wondering why we're not sharing our human food with her), she sometimes thinks she's a large dog (like when we're at the dog park and she feels the need to try to convince all the other dogs that she's taller), and sometimes she thinks she's a small dog (like when it's thundering outside and she suddenly needs to sit with her full body weight on my feet). :p She's a silly goof and I wouldn't trade her for a smaller corgi, although she does still need to lose a little more weight. She can be tough like a big dog and adorable like a small dog, she's sort of in-between. She's a good size for us - I didn't want a yappy little purse-sized dog but I also didn't want a big brute that we would go bankrupt feeding, either.
 
allie - sometimes its really nice having nothing planned. no reason to rush :) ps: what is the talk about "spoons"? lol..

carrie - really wish i could have more fun with my hair. im naturally blonde - but its only light blonde due to the sun. so underneath its much darker.. so if i dye my hair, ill never get it back the same colour :(

cat - hows your S-I-L? are her and her husband still trying to work things out?

Ive got my follow up appointment with my urologist on 13th june. so will get my MRI results then. im pretty confident everything will be fine and they can just give me meds that stop my kidneys from producing urine at night. and i guess if my MRI is fine, all my other symptoms are related to anxiety. i am pretty stressed with work

my boss has been negotiating another role for me in another department. so i will be in admin rather than claims. which is great - so much less stress! but im also slightly concerned as to why my boss is doing this (i know for a FACT she doesnt like me) and im pretty sure shes just trying to get rid of me... because i didnt ask for a different job.. she has orchestrated all of this behind my back and its happened very quickly.
but.. i do want this other job.. i cant stand to be around her anymore!

anyway.. everyone have a great weekend.. and a FAB 4 DAY WEEKEND for us british folk! whoop whoop!
 
Yeppers, welcome. I agree with Allie, it could be hemorrhoids. Or, it could be anal fissures, which are also not very worrisome and not necessarily indicative of a larger problem going on. I would especially think fissures because you said they only happen when you have hard stools - fissures are like little tears or cuts in the anal area, and they can happen fairly easily if you pass a hard stool. I had fissures for years off and on before I got really ill with IBD or whatever it is. So, keep an eye on it, but if you don't have any other symptoms then I wouldn't worry too much about it. Probably just hemmies and/or fissures.
 
Bozzy, yeah, my S-I-L and her hubby still have the divorce paperwork filed, but they're working on reconciling. They never really dated - she got pregnant with their first kid 3 months into the relationship, and they got married another 3 months after that. Then she had 3 more kids, one about every 2 years, so they've always had a baby/toddler around and just never had time for each other. So now they're getting babysitters and going on regular dates and acting like a dating couple and that seems to be going well for them. They're enjoying it and it's something they haven't had a chance to do, so I hope it continues working for them!

And I hope the new job goes well - I do admin type stuff too and I like it, it is fairly low-stress and I can usually make it through the workday even when I'm not feeling so great. I like my boss too although I'm actually also getting a new boss, someone was promoted recently and I'll be working under her. I don't know her well but she seems very nice. So, wish me luck with my new boss - I wish you lots of luck with your new job and I hope your new boss is much better than the current one!
 
Cat, our Kallie pretty much sounds just like Lily in personality. :p She is now down to a healthy weight at 22 pounds, and I love being able to pick her up when I need to, and she can sit in my lap on the couch or in my office chair. My husband was the one who really wanted a corgi (I wanted a cavalier king charles spaniel), and now he is dissapointed that he is going to be so big, and that he's a boy, lol. Its not like I'm backing out now, I have fallen hard for the little guy. :)

Yeppers, Cat is right, it might be anal fissures as well, but my anal fissures I have had in the past were extremely painful, so I didn't think about it before.

Bozzy, our "spoons" talk is a reference to the "spoon theory"...its a story written by someone with lupus to explain how people with chronic illnesses live their life. Its a very powerful story and can completely change how you look at your life and your "spoons". Here's a link to it: http://www.butyoudontlooksick.com/a...poon-theory-written-by-christine-miserandino/
 
that seems like a good idea then that they try dating. and wow that was a bit of a whirlwind into marriage! we got married when i was 20wks pregnant, but we had been together 4 and a half years at that point :)

and im definitely wishing you lots of luck!
 
Allie, I know you've had some awful fissures - I'm fortunate, mine have never been nearly that bad. At worst, it feels like a papercut on my anus and will bleed some bright red blood when I go to the bathroom. Mine have always healed on their own within a few days to a week, and they almost always happen when I pass a hard/constipated poo, so that makes me think that might be what Yeppers has going on too. Passing hard stools can contribute to hemmies too though, so it could feasibly also be that. And internal hemmies tend to bleed more but don't cause pain and aren't as easily detected as external hemmies, so Yeppers, you may have hemmies and not even realize it because they are internal.

And Allie, for what it's worth, I have a friend who had several cavalier king charles spaniels, she was crazy about the breed and spent way too much money buying two of them. But she ended up not liking them much, and when she split with her husband, he kept the dogs. Now she's got a new boyfriend and they got a beagle together, and she is just absolutely in love with this beagle even though it isn't her favorite breed. So who knows! Hopefully your hubby will fall in love with the new corgi just as much as you already have, and it sounds like you adore the little pup even though he maybe isn't the breed you had in mind. I got lucky, both hubby and I really wanted a corgi and Lily just sort of fell into our laps. :) I hope your hubby ends up adoring Adrian! My hubby grew up with dogs and he often says that Lily is the best dog he's ever had.
 
Oh, and I can pick Lily up too, but it's a bit of a strain! I don't think I'd be able to lift or hold her if I hadn't been lifting weights regularly for a year now! I finally have some muscles though and I can lift and hold her for a short time. She's still really heavy though! And she won't voluntarily go into the bathtub on her own so I have to lift her and put her in the tub whenever it's bath time, which is usually once a week.
 
I can't switch supplements Cat as they have been prescribed by Rheumy to take alongside of the Pred, high strength Vitamin D and Calcium since the Pred is so harsh on the bones. They are huge and I need to take 2 a day until I finish the pred.

Milk is a good idea Allie, I will think about that :)
 
Well I got a two letters today (no follow up Rheumy appointment, see this is why I didn't want to leave reception to send it in the post, they always screw up, even though I understand they needed permission to book in a slot for me and that person wasn't there to ask).

One was about accessing my medical records, by law they are able to charge up to £50 ($76), I made clear on the form I didn't need the whole file, scan pictures, just wanted to look through the notes and photocopy/print a few standard pages. I assumed it would be less than £50 but the reply was "£50 to supply copies of your medical records". I will have to have a re-think because since my welfare is finally being reviewed i'm not spending a penny more than I have to so I can save up for the money going down when they fail me and I have to appeal.

The second one was from Rheumy, in response to my email sent early in the week (he is really good at replying quickly), I asked for a second opinion on me PET scan and a review by someone senior at the Rheumy Dept of my case. He seemed very ameanable and said he will try to faciliate my requests, and he would be very happy to ask a colleague to look over my notes (I asked for someone senior- while saying I was fully satisfied with his care/he had done all he could for me, but that the inflammation was being caused by something).

Feeling a bit better about things today :)

Feeling a bit
 
Cat- Yeah, nothing back yet, will get an appointment this week and get it straightened. I can figure that amitriptyline would work on IBD. IBD (or at least Crohn's) causes damage throughout the intestine wall which would cause nerve damage in the effected areas. Therefore a drug to improve nerve signalling would lead to a reduction in symptoms from that damage. As well it is used for chronic pain, so with that you have some symptom reduction. It wouldn't stop the effects, but it'd help the symptoms. For a doctor, that's as good as a cure!

As for me, I am feeling like freaking magic since Friday afternoon. The horrid undescribable feeling has lifted, I'm not exhausted anymore, and the pain is not of the type that makes you just want to stop everything.

At the same time I'm in more pain than I was last week and every bite makes my stomach turn, but I feel great! How flipping odd.

Nathan
 
Hi all, just skim read most of the thread, hope you're all doing okay.

So, I've been on the Ami for a week or so now, and I can honestly say I dislike it. So tired all the time, joint pains, and the worst headaches I've had in a long time, and dizziness and nausea that my anti- nausea meds can't even touch.
It's just another thing that hasn't worked :(
Scared that I'm going to go to my GP and she'll just refer me for that stupid councelling and ignore me.

On the GP thing, does anyone know the best way to change GP without causing too many problems? My doctors surgery is quite near to me, and I don't want to leave the surgery, just change.

I ate some pineapple accidentally on Saturday... I've lost six pounds :(
 
Hi Chell, the Ami does take 4-6 weeks to work, and usually once your body adjusts the side effects go, once I hit the 4 week mark mine vanished, even though my dose was then increased.

When you ring up for a GP appointment, just ask for someone else. It's that simple. You can speak to Reception about changing your official GP, but when my GP left, and I asked whose list I was now on, I was told that had been phased out and I was to put down just the Surgery, not any named GP for the Hospital. If I need to I can name any GP I wish if there is something needing to be sent from Rheumy.

So i'd just see another GP, and if you like them tell the Hospital to send any letters to them instead of the previous one.
 
Chell, sorry the ami isn't working for you! I didn't have terrible side effects from it when I was on it, but it didn't help my symptoms either. They tried another anitdepressant after that one one me, from the same family of meds, nortryptiline, and it didn't work either. But my GI already knew at that point something more than IBS was going on (I had an ulcer that ate THROUGH my tongue....yes, a hole through my tongue).

So, Bentley is a handful! He is adorable, but a freakin' handful. He was so quiet when we met him and picked him at the breeder....and then as soon as we got in the car, he started whining, and he hasn't stopped yet. I'm only petting him, feeding him, etc when he quiets down, so he is starting to learn, but still, I'm a little tired of the whining. :p We had him in his crate last night, and he hated it at first. I then went down to the floor with him and stayed with him until he fell asleep, then closed the crate door and he was fine. He only had me up in the middle of the night once to go potty, which I thought was amazing. Today has been a day of playing and learning...for everyone! My husband is at work so its just me and the animals. We are all stressed from this...its actually kind of funny. But he is adorable, and I already love him, so its not all bad. :p

Actually one of the things that I found interesting was that yesterday once we got him, I didn't take tramadol the rest of the day! I was in pain, but I was so distracted with this cute little puppy running around that I didn't even think to take some. At first I was thinking "wait, if this made me not take tramadol, what if the pred was the same thing...just a giant distraction?"..then I remembered that with the pred I had no pain at all. I'm still in just as much pain, just not as focused on it. :p

Oh, and something crappy ended up happening. We left our camera on the table at the military ball! :( We didn't realize it until we went to take pictures on Bentley last night. :( Hoping someone picked it up....we have been taking photos with my iphone instead, but its just not as good!
 
Well 2 days into Pred and I am rather dissapointed, still exhausted, in pain etc, noticed a slight improvement in joint pain at times, but I can't say whether it is the Pred or just one of the more settled periods. Tummy seems as normal, again sometimes it settles for awhile and other times it is bad.
Am I judging this too soon? I sure am hungry and moody so it is doing something to me. My inflammation numbers are high, maybe it'll take more time to see any improvement. I start tapering in 12 days. If this doesn't work of course I am worried i'll be told it's all in my head/ibs/fibro :( And I am not doing another trial at a higher dose!!
Am having bloods done post trial (and did some pre) so maybe that will be a better way to tell if it has brought those down, maybe it might show I need a more agressive dose :( Which I really don't want to do!
 
Star, it takes 72 hours from starting pred for me to start feeling better. I think you are judging it too soon! Give it a little bit to work its magic. :) I was only on 10mg and by 72 hours into I was feeling MUCH better, and thats a low dose! So just try to give it some time. :) Hang in there!
 
Hi everyone...I hope that everyone is doing well. Sounds like the club could use a break!

I figured I'd update. I alot has been going on and it's been an emotional roller coaster for me. I'm still in the hospital with no clue when I'll be discharged as I've yet to really improve. I'm still throwing up but thankfully no blood. The pain is a little better but I believe thats because of better pain managment. They started me on a Fentanyl patch in addition to Fentanyl IV & Norco. I'm still on Flagyl & Vanco for the c diff.

My newest symptom is red bumps on my tongue. When I googled it, it appears to maybe be "strawberry tongue". I also have these rough cut/bump things on the roof of my mouth and inside of my cheeks. It hurts to talk, eat, and swallow. I can still do all of these things but its certainly uncomfortable. So they're wanting to do some kind of diagnostic test to make sure I don't have anything stuck in my throat I guess I dunno. I was thinking maybe it was the start of thrush since I'm on so many antibiotics but the doctor said it didn't look like thrush. My Mom said she had the same thing during her cemo...but I'm not doing cemo and have no clue what this is.

*sigh* I'm just so stressed out and ready to go home! I'm still having issues with the staff here but I talked about it with the OB who made me feel a bit better about things. Thats it on me I guess. Hope everyone enjoyed their weekend and is ffeelino
 
Aww txarmywife... im so sorry that you're still in hosp with no answers :(
Is flagyl.. the same as metronidazole? i hated that stuff made me sleep all day and my urine went really strange. glad your OB is being supportive and putting your mind at rest.

star - im sure it took 3days minimum for pred to work for me. i was having very high IV doses too. so jopefully should work soon!! Xx
 
TXArmyWife, I'm so sorry you are still in the hospital. But as my husband always says when I'm there, you are there for a reason! I am always mad being there too....look at it this way, you've got access to a variety of meds to heal everything thats wrong, including meds to keep you more comfortable. I hope they figure all this out soon and get you home ASAP though!
 
Bozzylozzy...yes that's the same thing as flagyl. I'm now taking that by IV and vancomycin by mouth and enema. They're hoping by switching the flagyl by IV that it'll be a little easier on my stomach and hopefully won't have me throw up as much. Im on so many meds now it's hard to keep track.

Thanks Allie. I kno I'm in the right place but it's hard especially when the staff is so rude! I did talk with the OB about it though and he told me to write down names of the people who are doing that and not to pay attention to them. They arent OBs and don't know what will and won't effect my baby like the OB team does, he assured me everything in on has been approved by OB and all tests have been too. And I sum what stood up for myself with the mean dr this morning and told her I thought she was being very mean to me. She apologized and spent more time with me to answer questions I had. It's hard enough dealing with this, trying to keep up with school work and a lot of stress because of my husbands job I don't need the staff here adding to it yunno? Just praying it gets better soon
 
Allie! That ulcer saved you a trip to the piercers! :tongue: Wow, that stuff is harsh.

TX: Rude staff are the worst. Flat out the worst. When I was scheduled for my first colonoscopy by my GP then, the GI I was referred to scheduled me for a sigmoidoscopy only. I was having pain on the lower right side, otherwise known as not in the sigmoid colon. I phoned down there, begging for at least them to leave a message for the doctor to call me back to tell me the reason, nope, no chance of even leaving the message, and by this time, (a week or two before the test) it my GP said just go through with it and go from there.

By the time I finally got a colonoscopy booked it had been months later and my symptoms had dissipated almost entirely. Now they're back, and I can't help but think if everything was done right the first time, I wouldn't be in a state this time 'round.

That said, as I mentioned last time, I'm doing freaking amazing. My energy levels are off the freaking wall. Such a contrast from last week, where I could barely get out of bed. I am still in pain all the time (especially if I eat the wrong stuff, had a salad today - bad flipping idea), and still get stomach sick, but I don't feel terrible. The pain is, though worse in severity, more bearable (weird concept right? But that's how it is), and the nausea is only very intermittent.

I feel great. My joints are aching, but who freaking cares? I can up and move around like I own the world again

I feel like myself again for the first time in almost three months.

Have a good one,

Nathan

EDIT:

One wierd thing I wanna ask about. Hard to explain. Ok, so I get this bloating in the bottom right, like it's clogged there, an hour or so after my first meal of the day. It doesn't go away at all during the day, just gets worse with each meal. Then, the next morning, it's still there, I get up, go to the bathoom, the bloating/clog feels like it moves, and I start going (Oh, past time I said TMI), first few inches are constipated, then the rest progressively gets less and less solid till it's pure D. One bowel movement a day.

I've had this almost every day for the last week, and it's like the days stuff is getting clogged and not moving until the next morning, then it all gets started off again.

Any one else get anything similar?
 
Nathan I've been having a similar feeling to what you describe...like my rectum is inflamed and preventing anything further up from moving steadily. When I go it's a small amount of solid stool (like the part that was stuck feeling) and the rest is d. I normally always have d but just recently started with this constipation thing. I'm thinking it could be a sign of proctiris but I'm not entirely sure. I'm glad you're feeling better :) I had a good day today myself and for the first time in a month feel like i may be improving...maybe :)
 
Yeah, that's pretty much how I feel. Just farther up and around the bend.

Ooh, sounds good you've got a good day. Hope it keeps up! Nothing like having a day in the sun after a few months in the rain, am I right?
 
Okay so just took fourth dose of Pred, still nothing... really p'eed off, since everyone has told me how fabulous it is and how quick it works!

So of course I thought, wow i've been prescribed the wonder drug and I will feel better really quick- not happening lol.

I have a wedding next week so I really could use a boost, don't see how I can manage a haircut and outfit shopping like this.
 
Star...how much pred are you on? I've had different experiences with pred and different flares. Some flares get better after a few doses and others takes weeks on prednisone before i notice any change. Initially too the side effects of the drug itself make it hard sometimes to gage how you're feeling. So I would give it more time. Also sometimes the dose may not be high enough....and of course there are people who do not respond to it. But I wouldn't give up hope on it just yet.

As for me...I think I'm finally on the mend :) I feel a little better for once. I havent thrown up in 36 hrs. I'm still not having a bm on my own but the drs don't seem too concerned with it since I am on pain meds. My mouth/throat sores are the same but the barium swallow didnt show any abnormalities...so it just feels like stuff is getting stuck rather than it actually getting stuck i guess. The Crohns GI came by and said the sores looked like the beginning of ulcers and he ordered a mouthwash to help with the discomfort. So there was talk I may be able to go home tommorrow if things continue to go well. I'm sooo ready!! I'm not real sure what the plan will be once I'm out of the hospital but I plan to ask those questions tomorrow.

One thing that is odd is my magnesium has been low? Anyone have experience with that? They started me on supplements which werent working I guess so they've been giving me IV magnesium. I've been having twitches which is a symptom I guess I just dont know what the cause is? IBD?


Anyways hope everyone starts doing better soon!!
 
Thats great news TXArmyWife! I'm sure you are more than ready to get home in your own bed. I have mouth ulcers like that all the time, and the mouthwash they use helps.

Star, I don't really know what to say about the pred. :( How much are you on again? Maybe it just needs more time. Thats what I hope atleast!

I'm doing alright. Super busy with the puppy though! Illness wise I'm doing about the same. This morning my digestive system decided to just eject everything, so I was in the bathroom most of the morning from pure liquid d. Not fun! Bentley has been a blessing though. I'm still the same health wise, but there is never a dull moment in this house. I was afraid I might be miserable with being so busy with a baby dog, but he has actually made it easier for me to get through the day and not focus on the pain. My quality of life has actually gotten better! I don't know if it will continue to be this way the entire time, since we have only had him three days, but I really hope so. :)
 
I'm on 30mg for 14 days (so another 10) then I taper down by taking 5mg less for 5 days at a time, so another 25 days on top of the 14.

I'm just telling myself that my C3/C4 markers were so high that it'll probably take time to feel better, but everyone told me how great it is and i'm just very dissapointed not to be feeling better yet :( Although reluctant to do the trial I fully embraced and recognised the benefits of feeling better for awhile! :tongue:

Mum says i've had more colour, and I have been feeling brighter at times, but to be honest I am pretty sure it's from getting high/low mood swings as a side effect lol rather than it working on my inflammation. I get mood swings anyway but these are more extreme and they just feel artificial.

Still taking the same amount of pain relief for joints, am certainly not any less exhausted yet and abdo pain/tummy issues not improved.

Fingers crossed it will work soon, or maybe if there is no physical improvement the inflammation markers post-trial will be down (had some done pre-trial for comparison).

I am glad both of you ladies are doing better, one physically and one mentally! Bet talk of coming out of Hospital has given you a boost and life with pets (especially baby ones) is always great for mental health!

:ghug:
 
Thanks for the update Star. Please keep us posted on the pred effect. My son got MUCH worse by the 3rd day on 30mg of pred ... there has only been one other poster with such a negative effect that I've read about. Nobody really knows for sure why there was such a negative reaction. He's been on pred many times when he was younger and had bad asthma ... it worked like a charm then.

Has there been any update on Sunshine? (I may have missed it here)
 
Txarmywife said:
My newest symptom is red bumps on my tongue. When I googled it, it appears to maybe be "strawberry tongue". I also have these rough cut/bump things on the roof of my mouth and inside of my cheeks. It hurts to talk, eat, and swallow. I can still do all of these things but its certainly uncomfortable. So they're wanting to do some kind of diagnostic test to make sure I don't have anything stuck in my throat I guess I dunno. I was thinking maybe it was the start of thrush since I'm on so many antibiotics but the doctor said it didn't look like thrush. My Mom said she had the same thing during her cemo...but I'm not doing cemo and have no clue what this is.
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My son had the red bumps on tongue for about a month when he first became sick. The doctor said it looked like strawberry tongue too. They cultured it for strep several times but that came back negative. His eventually went away ... but it all led to his ongoing unknown illness. Did the doctors ever figure out what caused your strawberry tongue?
 
I'm here! Sorry, I've had such a busy week - we had a big election here in Wisconsin and then I've been busy at work too. I check in when I have a moment, just didn't have time to write out a post. I'm going to try to respond to everyone who has posted recently...

Dannysmom, Sunshine posts fairly regulary on facebook. No good news though, she's tried several meds now with bad results (Humira failed and gave her very bad side effects, now she's on methotrexate which is giving bad side effects too and doesn't seem to be working either). Her IBD has not let up at all and that combined with the meds/side effects are really doing a number on her. The poor thing just can't catch a break. :(

Star, I hope the pred kicks in soon. My experience was that it worked right away (and I started on only 10 mg) but I'm not necessarily the norm. In fact my GI was pretty surprised to hear that I responded so well and so quickly so I don't think I am the norm at all! Give it awhile longer. And good luck, I hope it starts working a lot better very soon!

Allie, I'm glad to hear that having the puppy around is doing good things for you and distracting you from the pain. It sucks that you're still in pain, but it's good that you're not able to dwell on it too much with a little pup to take care of! :) He's an absolute beauty too, I love all the photos you've been posting on FB. How's Kallie adjusting to the puppy?

TXarmywife, sorry to hear you're still in the hospital but glad to hear that you may be going home soon! :) As for low magnesium, personally I tend to get low sodium particularly when I'm flaring but as far as I know my magnesium has always been fine. When I get really dehydrated (in which case I'm losing sodium), I do tend to twitch or tingle particularly in my hands & arms. I'm guessing you're no longer dehydrated seeing as how you've been in the hospital for awhile now so I don't know! I hope your doctors can figure it out, and you can go home soon!

Nathan, with regards to the bloating/clogging feeling, I get that even in remission. My first poo of the morning is always more hard and the rest of my BMs for the day are a bit softer (they're still all formed and solid though). And I start out with a flat stomach in the morning and then slowly bloat out a little bit more with everything I eat or drink throughout the day, and by evening I have an ugly protruding gut. I have not figured out why or how this happens. It just seems to be an IBD thing I guess because it happens to me even in remission!

Bozzy, how's your job situation going? Any better/less stressful? Hang in there, hopefully it'll work out okay.

I think that's everyone... hi to anyone I may have missed! As for me, I'm doing okay. Guts are fine, GERD is quiet. Arthritis/bursitis has been acting up a bit more lately, I'm not sure why. I got a jump rope and have been trying to add a bit of jumping rope into my workout regimen. Holy cow, it's difficult! I could jump rope for ages as a kid but as an adult I can only go for about 30 seconds before I'm totally exhausted and need to stop & rest. My guts don't really like it either, all the jolting of jumping up and down doesn't make the tummy area particularly happy so I just do a minute or so for now and am hoping my body adjusts. That might be why my hip is acting up too, I don't know. It seems like a really good exercise if I can just get my body to cooperate with it, ha ha. So yeah, that's me lately. How's everybody else feeling today?
 
Star, I really hope the pred starts to help soon. I don't even want to think about what your docs would think of the pred not working....I mean, pred should work for ANY inflammation, autoimmune or not. So I really hope for your sake it kicks in.

Thanks Cat. :) He is such a cutie....I love him so much. I just get so happy when I hold him in my arms...even when I'm having to get up in the middle of the night to take him to go potty, I'm happy because I have this warm puppy in my arms. :) My husband has noticed the change in my demeanor as well, and he agrees with me that the decision of getting Bentley was a good one. Even though he has me using a lot more spoons than I used to, I am happier because I'm not spending 9 to 5 waiting on my husband....I'm taking care of him and working on my business.

Kallie is NOT adjusting well to Bentley. :( She is extremely jealous. We didn't expect her to be this way at all. I mean, one of the main reasons we got Bentley was because we knew she would be better off with another dog. But Bentley is taking so much of my attention, so she is extremely upset. She plays with him, but yesterday she started to bite and hurt him out of anger. We were outside playing, and she did not want to play with Bentley, and he came up to her and tackled her the way she was tackling him the day before. She bared her teeth and bit down at his side...I freaked out and got really upset when it happened. Since then she has bit him another three times, mostly when Bentley is trying to take a bone away from her. I know she will settle down and get used to this, but it saddens me that she is so upset. She still plays with him, but if he barely crosses a line she turns into a very mean dog. I'm sure the age difference isn't helping either. We have changed a few things to show her she is alpha between them (feeding her first, letting her take his bones if she wants them, etc), so I hope it will get better as time goes on.

Cat, I'm glad you are doing good health wise! I'm so glad you have been able to stay in remission for so long. :) Thats crazy with the jump rope...I remember doing it for a long time as a kid too. I wouldn't try it now because of my arthritis though. :p

Health wise I'm doing about the same. Pain is the same, inflammation can still be felt by hand, etc. I go see my GP tomorrow morning (REALLY early...7:40 in the morning...YUCK!), and I will be telling her what the rheumy said. I will be insisting on getting proof of this inflammation...enough is enough. Its been inflamed for TWO YEARS. I don't care what the past tests have shown. I'm also going to be putting my foot down on pain management. I'm not going to let her make me bargain for my pain pills. There is nothing wrong with using pain pills for its CORRECT USE. I am not an addict, trust me! I also have to get blood drawn because I have not had blood drawn since I left Georgia...need to check my ANA, my CRP, etc. So I'm hoping the appointment goes well!
 
dannysmom---txarmywife---
Have you had your B12 levels checked recently.
Strawberry tongue can be a symptom of pernicious anemia and you should have at least a CBC and vitamin B12 level checked.
 
Allie, that's too bad about Kallie being so aggressive with the puppy. :( That's probably how Lily would react if I got a puppy too. I think I mentioned this before, but Lily even likes to knock over puppies if she sees one at the dog park! She likes picking on them for some reason. She leaves my cat alone for the most part though, they get along as well as a cat and dog can be expected to. They don't snuggle or anything, and when we first got Lily the cat HATED her and there was much hissing and swatting and the cat wouldn't let Lily within a few feet of her. Now, though, they sniff each other and can share the same space and are generally friendly (the cat even steals Lily's tennis balls and drinks water out of her dish!). Ocassionally Lily tries to assert her dominance over the cat but the cat just hops up on the couch or somewhere high that Lily can't get to her, so it all works out. Having the dog has made my cat more social, too. She's not the queen of the house anymore so she actually has to seek out attention because it's not all lavished on her like it was when we just had the cat and no dog. We've had the cat for 9 years and some of our friends didn't even realize we had a cat until recently! She'd always go hide when people came over, but now she comes out and greets them and accepts petting. So, although my cat hated the dog at first, it worked out for the best and my cat actually behaves better now than she did before. Hopefully that'll be the situation with Kallie too! Good luck.

And good luck at the GP tomorrow too! I'm glad you're putting your foot down and demanding answers, meds, and tests. Is this GP local (German?) or is she at the army place that's 3+ hours away? If she's local, I hope there's no language barrier issues because I know you need meds, answers and tests! Best of luck with it!
 
I'm glad Lily and your cat were able to get along (somewhat) eventually. I know Kallie will get over it eventually, it just breaks my heart that she is so upset. :(

My GP is on base here in Bamberg. :) Only my GI is at the Army hospital, and I haven't seen him in awhile. My rheumy is German, and it only 5 minutes from the base.
 
Sorry to hear about your puppy problems! My cat was like that with my dog when we first got her, the cat had been in the house for something like 10 years before the dog, so dominance issues! The cat used to scratch the dog on the nose! But they got over it soon enough, and became quite friendly!

I got my appointment for the dietician. They've asked me to keep a food diary, I'm sure that'll amuse them. Plain pasta and cupa soups every day? They'll love that.

I'm still waiting for news regarding possible pill camera, though I'm tempted just to phone up the hospital directly as my GP is about as good as a chocolate tea pot right now.
Feeling so ill today, took all of my dosages before three o clock today, and despite not eating much, have been to bathroom about ten times :( Weekend, please. :(
 
Thanks cat. Its been ok at work recently but my boss is on holiday lol!! ;)
I get my MRi results on wednesday. i see an opthalmologist next friday and see a podiatrist at the end of the month. so busy busy!.. ive started to feel generally unwell again and im getting a "stinging/sore sensation" on my LRQ again too :(
Im on my mobile phone - so havent had chance to read everyones messages
but i hope you're all ok!
 
Hi Everyone

I am sorry I have not popped in for a while I have been very unwell.
My GI said that he thinks I have Crohns maybe Crohns Colitis so I have had a fecal calprotectin test. I have a script for pred and my GI will call when the last test is back to give me instructions on how to take the pred. I am very nervous about the pred but if it gets me better then I am all for it.
He said I am having extraintestinal manifestations of ibd like my mouth and back end is covered in ulcers more often than not, my eyes are so dry and the joint pain is really bad.
He has given me a information shhet on 6-MP as that is what I will be taking after the pred.
Hope you are all ok and having some symptom/pain free days xx
Oh I also have a gut motility problem does anyone else have this?
 
Hi Sunny Days, so it sounds like you've definitely got some form of IBD and they're just trying to figure out which one? Pred should work for any type of IBD so that's good news that you get to start it soon, and I wish you good luck with it. It worked wonders for me so I hope it does similarly well with you! I don't know much about 6MP but there should be lots more info about it in the "Treatment" section of the forum. Keep us posted on when you get officially diagnosed and how the medications go - good luck!

Bozzy, good luck with the MRI results and the upcoming appointments. I hope your LRQ pain goes away soon and that it isn't a flare! Feel better soon and I hope your boss stays on vacation for a long time. ;) Ha ha. Keep us posted on those MRI results, fingers crossed for you that it's nothing (or at least nothing major).

Chell, it wouldn't be a bad idea to keep a food diary anyway even if you always eat the same thing, you'd be surprised at what you find. Spaghetti has always been a pretty safe food for me, but one day I felt awful after eating it. I wrote down everything that was in it, and lo and behold, we had used a different sauce which contained garlic, and my usual sauce did not contain garlic. So it seemed that garlic is a trigger for me, and I wouldn't have known that if I hadn't written things down and looked at all the ingredients. Sometimes it's picky little spices or ingredients that you wouldn't think of that can cause issues. Anyway, good luck with it! And I hope you can get the pill cam approved soon!

Allie, how'd the GP appointment go? Did you get all the things you asked for med-wise and test-wise and so on?

I'm doing good today, allergies are acting up a bit but really no complaints here. :) Although I have noticed something strange lately. Can I ask, have you guys noticed that your tolerance for pain has gone up since you've been ill? I am klutzy and regularly bump into stuff and will get a bruise but never actually register having pain. I just did that today, smashed my wrist into the gym locker door as I was getting ready to work out, and I was just like, meh, didn't hurt. And now I notice a big bruise and a lump on my wrist - it looks painful but I am still not really registering any pain from it. Also, the other day, at one point in the afternoon I was like, hm, do I have a headache? I do, huh, it seems like I had it all day but it didn't really register with me. It's like I have pain but as long as it's not awful, it doesn't even register in my brain anymore. That's kind of cool but kind of worrying too, like having this IBD has changed my brain! I notice certain pains, like if my arthritis/bursitis is acting up or if my LRQ is unhappy, but I guess "regular" pains like headaches and bruises can just be totally and automatically ignored by my brain at this point. Anyone else notice something similar?
 
I think the Pred is kind of working, since Thursday afternoon felt much brighter and it doesn't feel artificial. Possibly some symptom improvement. Maybe the joint pain is getting better for longer periods, and maybe bm's are better-seem to be at 1 or 2 normal in the morning which was my normal before getting sick. Even in a "good" spell of this illness I would have those in the morning and a couple more during the day, although again not D but normal movements. Also at times I have felt extremly tired rather than exhausted- quite a clear difference I have found. I also have a great colour in my face (instead of vampire pale) and my fingernails are so long I can't believe it- mine have never grown past stubs before breaking and they look fab! Think this may be the calcium supplements and I can't stop admiring them lol :tongue:

Side effects hitting though :( Awful insomnia, I never worry about not sleeping, and is usual for me not to sleep until the early hours- but now I am wide awake at that time rather than on the way to sleep. Seemed to have gained some water weight too :( With a wedding next week this is the last thing I wanted to happen, going to see everyone and being really fat. I've been so so careful about not eating more , I will just have to cut back again and hope I don't get too big for next week :( Vision is a bit blurry at times. If the situation hasn't changed in a few days I may contact Rheumy because I feel the negatives are outweighting the postives right now.

So hoping I improve more and the side effects do not increase! Confident now there will be a fall in the inflammation markers which is a relief.
 
Im glad its starting to work star.. but im totally with you on the side effects. i got awful skin, couldnt sleep and had mean mood swings! Especially after id tapered from 60mg to 20mg, on the day of my laparoscopy they injected me with high dose of steroids.. and boy did i go off my rocker!! Lol the poor hospital staff didnt know what to do with me haha!
Its totally up to you if u continue taking it or not. but the side effects will stop when u finish the course.. but most importantly a proper course of pred might settle your bowels for a long time after you've finished taking it
 
Thanks hun. Am going to see how I am in a few days (because right now I am convined I have blurry vision as a side effect and can't see past it- need to stop thinking about it then see if I notice it still), there is an advice line at the Rheumy department, think I just need some reassurance and support!

Because it's only just started to work, and the side effects have now started, I had convinced myself I wouldn't get any, know that is silly, and now am a bit dismayed.

I am at 30mg for 7 more days then I start tapering down to 25mg for 5 days, then 20mg for 5 days, and then so on until I have no pills left. Another 32 days seems like along time right now.

I can gain weight as long as it's after the wedding lol, I get out so rarely!
 
Definately seek some advice though, even if its just to put your mind at rest :)
And pred doesnt suit everyone. i hope i never have to go back on the stuff! Good luck :)
 
Hi Everyone

I had to share :)
The things our partners put up with some times. My husband is amazing with me so I had to share something funny. I was laying in in bed this morning because I was not feeling great and he came in to see how I was and give me a hug and well I passed wind on him and he said " Thats the mating call of the female crohns sufferer" I am still laughing :)
 
Hi! I promised these pictures a bit ago. I didn't take pics of the other hair pieces, because in the end this is the one I wear daily. I got it from Amazon for $14.00 so it's very reasonable. It has three clips on it. two in the front and one in the back. It's a small triangle shaped piece of wig net. They come much longer, and I have another pair coming Monday so that I can experiment with a longer bang style for a wedding I'm going to. They're great. You forget you have them on, they don't move because of the pressure clips. No one at all has known they were fake. at all. it's been fairly amazing. You can kind of tell from the top if you look straight down, but I didn't do anything to my hair, I just clipped them straight in to dirty/messy hair.

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front view:
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Carrie630 said:
Hi! I promised these pictures a bit ago. I didn't take pics of the other hair pieces, because in the end this is the one I wear daily. I got it from Amazon for $14.00 so it's very reasonable. It has three clips on it. two in the front and one in the back. It's a small triangle shaped piece of wig net. They come much longer, and I have another pair coming Monday so that I can experiment with a longer bang style for a wedding I'm going to. They're great. You forget you have them on, they don't move because of the pressure clips. No one at all has known they were fake. at all. it's been fairly amazing. You can kind of tell from the top if you look straight down, but I didn't do anything to my hair, I just clipped them straight in to dirty/messy hair.

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They really do look fantastic, very natural!
 
Carrie, thanks for the photos! I can just barely notice a difference in the top view but I can't tell at all in the front view. It looks nice! Are those the Jessica Simpson ones or the other ones?

Star, if you're gaining water weight, try avoiding sodium as much as you can. Sodium makes you hold on to water weight even more. The weight loss should be temporary - I lost a lot of weight when I was ill, and gained it all back and then some when I was on steroids, but now I'm back to right around the weight I was before I became ill - my "healthy" weight if you will. At any rate, if it's water weight then it'll go away soon. Don't worry about the wedding too much - the important thing is that you're starting to feel better. I hope the side effects alleviate soon, but it sounds like pred is working and that's great! :)

How's everyone's weekend going? I've been busy busy busy! Having one of those weekends where I try to do it all, and am mostly succeeding. I got up at 6:30 today and walked the dog (it was supposed to be almost 90 today so I wanted to walk her really early before it got too hot). Then I went to a bunch of garage sales and an estate sale, ran some other errands, ate pizza for lunch and didn't pay for it! Then I cleaned, did dishes and laundry, baked brownies and cooked dinner for hubby. Phew, so busy! Tomorrow I want to vaccuum, and that's really the only thing I didn't get done today. :p So I think I'll sleep in and not do nearly as much tomorrow! And possibly I'll have a brownie for breakfast. ;)
 
Cat: I'm doing great, me and two friends went for a hike yesterday, went to dinner with my gf last night, got a new part time job for later in the summer when I have few classes. I found what triggers the pain, anything with insoluble fibre (lettuce, peppers, onions, what have you). I haven't had any of that in two weeks, except a bit here and there and I've been feeling great. No clogged feeling, bowel movements not regular, but getting there, pain less constant, no nausea (thank god, that was getting tiresome).

That earlier discovery also explains why I was doing so horrible a week ago. The week before that I always ate at the chinese place at school, all veggies and a bit of chicken or beef. The connection was confirmed when I had a salad with lunch this week and I had pain that evening.

Sadly, as regularity comes, so does the evident bloody mucus. I am not cured, just symptom relief. My throat is still swollen and my joints were really bothering me last week.

That said, I have energy and feel great. How the hell can I complain?

Get anything nice at the sales?

Also, wrt weight, same story, when I flared last time I lost about 10 pounds or so over that time (not much, but I don't have much to lose), I gained most of it back just in time for this flare!

Hopefully I'll get one of the GI letters in the mail this week.

Nathan
 
Okay, so back to square one symptom wise.
Joint pain flared up really badly Sat evening, kicked me right back into exhausted, spent the next day marking time until the next pain pill and maxing out. I don't expect to be better instantly but neither do I expect to flare so badly while I am supposedly having the illness treated.
I still feel brighter overall but that's pretty useless with not much improvement in symptoms...

I start to taper in 6 days and am panicking slightly here, if there are no tests left for a diagnosis and steroids are not working, what the hell am I supposed to do?? If it's not working at 30mg for 14 days will things change once I taper downwards for 25 days? Would Aza work where Pred hasn't?

Of course the side effects are quite lovely, I have an endo appointment in a couple weeks and I am not letting them weigh me, they do it as part of the health check but I am going to refuse, I do not need to know the number I can see how big my stomach is getting, and i'm going to a wedding Friday, just the state I want to be in :(

Everyone told me how good this drug was, I could cry about it really I could :confused2:

All I can hope for now is some improvement in the post-trial blood tests, so at least they don't tell me I am insane for not responding to the steroids :(
 
Just out of interest star.. have u had your appendix out?
Because the pred worked for me, but started to get D and pain again after 2wks. my ultrasound said my appendix looked normal. but when they did a laparoscopy, my appendix was in such a mess!
 
No I still have it. Did see about a diagnostic laparoscopy a while back but the surgeon refused, and now with the normal PET/CT scan the chances of getting one are nil I should think.

So unless I get rushed to A&E and end up having it taken out as an emergency I think that's another dead end lol.

Tummy seems reasonably good at the moment, but I can't tell if the Pred is improving or if it's just one of the more settled times with it.
 
Hi everyone. I'm sorry we're all here with the shits, pain etc. I have always had pain from age 7 (I'm 28 now). When I was 8 I had my appendix removed, Pain came back. When I 16 I had my gallbladder removed, pain came back. When I was 17 I had my bile duct cut and stunted , pain came back. I developed pancreatitis (they where sure this time this was my issue) NOPE , pain came back. I was then told I had GERD, gastritis, ibs, it was in my head and the list can go on.

I suffer from bloating, fatigue (big time), nausea sometimes vomiting, off and on fevers, mouth ulcers, stomach pain (usually bely button down but lately all over), loss of apprtite (but yet I don't loose much weight), headaches, direhha (that sometimes contain lots of blood).

My colonoscopy showed patchy inflammation in the descending colon as well as several erosions with granularity and erythema in the descending and sigmoid colon. I go for my endoscope today (6-11) for further dx.

So hard to deal with all this with a toddler. Just wish to be normal!
 
estrella409, I am SO glad I saw this!!! I received blood work last week that points directly to lupus, at least from the research I've done. My ANA was positive, titer was 1:160 with a homogeneous pattern. After getting a 2nd opinion from a fabulous GI doctor at Vandy (my first one threw some pills at me and said it was IBS HA!) , an endoscopy and lots of other tests, she said she was concerned with those, high levels of inflammation, and a 10-month long low grade fever (almost EVERY day for almost a year!) and needed to see a rheumatologist. So I am almost back to square one. Has anyone else in the grouphad similar results, and been dx with lupus when doctors thought it was crohns????
 
Just sat in my GP's office waiting for an emergancy appt.
since 4pm ive had none stop big D.. which turned into a LOT of blood. its scared me so much as ive never had the bleeding before :-(
I had noticed my stomach starting to hurt more recently.. and now this.
i was completely content with the diagnosis of IBS (and was just waiting for MS to be ruled out too) but now i dont know at all.. i feel so unwell. after doing so well for 3-4months :(
 
Hannah....My story is almost EXACTLY like yours!

I spent years going through test after test looking for Crohn's based on my symptoms (upper left quadrant pain, extreme diarrhea, weight loss, weakness, mouth ulcers, etc), with ALL of them coming back normal. The last test I had with my GI was a pill cam, because they insisted it was crohn's in the small bowel. Well, once that came back normal, I took matters in my own hands and saw a rheumy. My rheumy did a ANA test, and it was positive!

Lupus is an autoimmune disease that can affect ANY organ in the body. For me, my Lupus is attacking the connective tissue or outer layers of the intestines, causing IBS symptoms on top of the Lupus symptoms. I also have joint pain/inflammation, mouth ulcers, and other symptoms that fall into the criteria of lupus. So yes, it IS possible! Just be prepared for a long road to diagnosis....I was diagnosed with MCTD (mixed connective tissue disease, a type of Lupus mixed with several other autoimmune diseases) once I had a positive ANA and I responded well to both prednisone and plaquenil.

Feel free to PM me if you want to talk! Our story is not very common...its great to meet someone in a similar situation!
 
Ok to reply to everyone else (sorry, I got so excited to reply to Hannah...)

Star, I can't believe you aren't responding to pred. Even if you have IBS, your shoulder should be responding to pred, right? I am just so confused and my heart is breaking for you. :(

Bozzy, I hope your D and blood slows down! I really hope you were able to be seen and they were able to see what was going on and either put it in your records (records of this stuff is so important when you are undiagnosed) and that they were able to help.

Well, I haven't had a good past few days. My GP appointment went TERRIBLE. When I told her my rheumy could feel my inflammation by hand, she looked at me like I was crazy. She said Germans did medicine differently and to basically just ignore it. She is ordering the MRI like he suggested, but she said she has never seen an MRI used for an autoimmune disease and that none of this made sense. She also decided that that rheumy shouldn't be my rheumy anymore, and personally called the army hospital 3.5 hours away and assigned me a rheumy there. So I have to go see him (or her) in the next month.

Oh, and it gets better. I then talk about pain meds, and she tells me she can't RX me as much anymore. That they are getting much more strict on tramadol use, becuase "it is an opiod after all", and that she will only RX a month a time. I look at her and go "I am not an addict, I need this medication", and she told me "you would say that if you were an addict". I was so insulted. :( She then said she is enrolling me in a program called the "Sole provider program" to carefully watch my tramadol use...I don't know the entire program completely, but from what she told me I have to see a councilor and I have to be watched like a hawk to get my pain meds. And tramadol doesn't even really help anymore!!!!! She gave me a months worth and told me to come back in a month to get more.

The last point of the terrible appointment is the lecture she gave me on my entire situation. She doesn't believe my MCTD diagnosis, and she wanted me to not get my hopes up for actually having a disease with a name. She said the MRI will probably show nothing, and that they will probably never figure out whats really wrong with me. Then she said if they can't figure it out they will just have to try and keep me "as comfortable as possible" for the rest of my life. EXCUSE ME?? How can you keep me "comfortable" when you are REFUSING to give me proper pain meds?!?!?!

I am so angry it isn't even funny. My stomach has been inflammed in a very specific spot for almost exactly two years now, and the longer it isn't being properly treated, the worse it gets. My joints are being attacked now too. Am I going to have to end up like Sunshine to get the proper treatment I need? So sick that they don't even have anything strong enough to fix it? I'm already so sick that at my worst I need to be in a WHEELCHAIR. How is that not a disease with a name?!?! UGH!!!!

Thanks for letting me rant.....I needed that. Last night I freaked out over all of this, had a HUGE panic attack....and I'm not really proud of this....well, I hurt myself. I know, I know, that is NOT the right answer...I have had panic attacks since this illness started, and part of the attacks is wanting to scratch at myself because I feel like I am crawling out of my own skin....well, the attack started on out way home from the movies...and to keep a long story short, because of the attack and the way my husband handled it (yelling at me to grow up, telling me the dogs need him more than me, and watching me cry without any emotion, and angrily trying to shove medicine down my throat), I took a knife to my leg. I have never actually hurt myself...but this time I created a gash so deep that I cut through the muscle. I can't believe I am telling you guys all of this, but I am so devastated. I have found ways to keep myself from hurting myself, but I just couldn't hold it together yesterday with the way I was being treated. I am NOT blaming my husband...it was both of us. It took two xanax to calm me down after the ordeal, and I have been crying all day. We should have gone to the ER to get stitches, but my panic attack was so bad that I told my husband I would kill myself before going to the ER, so we didn't go. My panic attacks are BECAUSE of my illness...and because I am not being treated seriously by my doctors, I refuse to tell them about it, because I'm afraid they will tell me my physical illness is because of my anxiety. This is just a huge mess....I'm going to ask about anti-anxiety treatment at my new rheumy, but thats it. I'm only telling you guys because I know you will understand...I'm really hoping these nasty gashes heal fast.... :(
 
Hello everyone,

I have been riveted to your posts, thank you so much for sharing all of this.

I have a bizarre story, that I don't know if I actually have Chron's disease or not. It started with a chest infection, antibiotics, vaginal discharge = flagyl, then a 10 week bout of D between 5 and 10 times every day. I had open sores on my bottom, and ended up having to shower after every BM as I just couldn't touch it with anything. When I went to the hospital whilst on holiday in the UK they told me to take ibrufrofen and use sudocreme for the sores.

When I returned to France where I live, I went to my GP who immediately referred me to a GI. He saw me 5 days later, and scheduled me in for the following morning for a stigmoidoscopy. We have family history of Chron's disease and the pain in my tummy and my other side effects were all pointing towards that.

Following the stigmoidoscopy, I was told I had CD by the GI, and put onto prednisane and water retention. The D cleared up and I started to feel better than I had for a long long time. A week later when I went back to my GP he confirmed that the results of the sigmoidoscopy showed that 'the appearance was consistent to that of Chron's disease'.

But during the sigmoidoscopy he wasn't able to check me out properly, because the inflamation was causing too much pain, so he scheduled in a colonoscopy 10 days later. My experience was actually that it happened all a bit too quickly, I had no idea really what was going on and what questions I needed to ask.

Immediately after the colonoscopy when I came around from the anaesthetic, my GI said that there was no sign of bowel cancer, and the inflammation had gone so I could stop taking the prednisone (gradually come off it in a few days). I asked about the Chron's disease, but that is when it started to get a bit strange. He said that he had given my GP a letter in case I have problems for more medication, but that he would do other tests another time in the following years. The results of the blood tests came back as non-specific collitis.

When I returned to my GP, he gave me some protein things for the fatigue, and told me to eat horse and rabbit and no raw fruit (plus a bit of other information about diet!). But last week I went to see him again, as I am still totally exhausted and my GP just doesn't seem interested now. I am having trouble keeping weight on.

This week I have terrible pain in my stomach, no D but I have been vomiting and generally feel pretty rough, just not sure if it's a general bug from my kids school or a 'flare up'.

I have an appointment on Friday with our company doctor who wants to review the entire file, blood tests, results of colonoscopy etc. But I don't know if this is a flare up, or whether I even have it (does appearance of chron's disease mean you definitely have it even if it goes in 10 days?). I told my boss that I had been diagnosed with Chron's disease and I would feel really stupid if I have to go back and say, actually, I don't have it anymore, or actually it was just a misunderstanding due to the language barrier.

My problem is I don't speak French, so this is all being done with a combination of pigeon english and French.

Phew, I've shared it finally, and I'll let you know how it goes with the company doctor and whether my diagnosis was a false alarm or real...

Thanks for listening!
 
allie,
Please , please find someone that you trust to talk to about your ordeal. Chronic diseases come with huge mental health challenges.

This is the way I see the situation. I suspect that the doctor has caused you to really doubt yourself and that is what brought on the self-harming. What she is doing to you is a form of abuse--if someone else kept telling you that you were exaggerating or making up the symptoms that you were reporting, you would have nothing to do with that person. I believe that because she has so much power over your situation she is making you feel helpless.

Stop listening to her and trying to prove her wrong. Think only of yourself and what you need to be doing to get well. That starts with finding someone who will be on your side-- a counsellor, a minister/priest/pastor, a nurse, a support worker--anyone who will give you support. Tell them what has happened and what you need from them and get them to help you get a different doctor and someone who can support you with the mental health stress of living with a partially diagnosed chronic disease.

Please seek help now allie. You have been struggling with health problems a long time--it takes a toll. You don't want the situation to escalate. :hug:
 
Oh my goodness - Allie - can you change your GP? If she is not happy about dispensing you Tramadol anymore then she needs to at least refer you to a pain clinic - she can't just leave you in pain I would think that is against the hippocratic oath (I may have spelt that wrong). Demand to see a pain specialist as things are going too far. I bear the scars from self harm and I urge you to get help for it before it goes any further - please - for your sake, for your husbands sake. Also you should feel very proud of yourself for having the amazing strength to share your story - I really hope things improve for you soon xx

Living in a bubble - what an ordeal you have been through - I am no expert but maybe it is possible that the pred has reduced the inflammation enough to give confusing results, Is your company Dr English? maybe you will get better answers once they have reviewed the files? It sounds like you are still very ill and need to go back to the GP again (can you see a different one?). With a history of crohn's in the family it all sounds a bit suspicious. - I really hope you feel better soon xx
 
Gosh, the forum has been quite busy lately!!!! I've been all over the board with symptoms, plus a teething toddler....sigh.

Allie and Hannah, we could form a trilogy with our stories! Hopefully we'll all arrive at solid, correct diagnosis soon and start feeling better. I have my first colonoscopy scheduled in a week, and I really really really hope it gives some answers.

Today's been a particularly rough day for me. Worse pain than usual, worse d than usual, nausea, low fever....my poor bottom is so raw from all the "overuse!" counting down the minutes until my husband gets home from work so I can go get some much needed rest.
 
allie, please go see a different doctor if you can. your current GP sounds awful! :(
her quote of "making you feel as comfortable as possible" is what they say to terminally ill patients. her approach is all wrong - a complete bitch if you ask me! (excuse my language)
i feel so enraged for you!!! (i would totally punch her in the boob for you lol!)

as for my D - it has stopped now. but i dont think there is anything left! it just got to the point were i was literally "peeing" blood out of my rear end.. with lots of mucous too
(sorry for the grim description)
my GP wasnt too concerned because this is the first time ive ever had this - and only had a colonoscopy in feb. he wants to see me in the morning to discuss arranging more tests.. blood tests etc. so will see how that goes. but im hoping he might refer me back to a gastroenterologist or something lol
 
Living in a bubble, welcome to our little club here. It sounds like you were on the right track...I'm really sorry that treatment stopped you in the middle of your diagnosis and treatment. It makes NO sense when doctors do that...of course the inflammation is gone, you were given meds that stop any kind of inflammation! :( I understand what you mean with the language barrier....I live in Germany, but I'm an american, and my German is horrible. Medically I have had two specialists that were german, one was a GI, another a rheumy, and the language barrier was always awkward. I try and keep to doctors that are connected to the U.S. Army (why we are here). With your situation at work...I would say you have Crohn's Disease. You were diagnosed, given a treatment for it that worked....I just don't understand why they would say you don't after that. I am so sorry you are going through this!

Estrella, I agree with you! Man, I wish I had known others like this when I was in the beginning of my journey. Our situations are so strange, no one seems to understand! At least we can help eachother keep believing we aren't crazy. :p

Happy and Suzy, thank you so much for your responses about my situation. I am still very upset with myself over the entire thing....it all happened so fast, and I actually don't even remember cutting my leg..my memory goes from grabbing the knife to sitting on the floor in a pool of blood. :( Like I said before, this has never gotten this bad...bruises, scratches from nails, thats it...not gashes like this, and I NEVER want this to happen again. The more I think about it, the more I want to talk to my rheumy the next time I go. It will be my first time meeting this new rheumy, but I feel like he/she will understand more than my GP. Either way, I'm getting help, I just want to make sure I don't get help in a way that will make me look like I'm crazy, and that I'm a hypochrondriac....because it is the other way, the anxiety is from my illness. I wish I could go to a pain clinic, but here in Germany I don't think I have the option of seeing one. My GP told me that if I tried to go to a different doctor they probably wouldn't even give me tramadol...like she was being nice for giving me what she was giving me. I get they are getting strict because people can abuse it, but I'm not. Even my husband told her that most of the pain medication I take is when I absolutely have to, and he is the one giving it to me. Suzy, she actually did mention the hypochratic oath to me during my visit...but it was that if she continued to treat me for a disease that I'm not completely diagnosed with she would be "doing me harm". >.< Anyway, back to the situation...in the past, when the urge to hurt myself got really bad and I could feel myself spiraling out of control, I would take a xanax, and it helps, a lot. But bc my husband was yelling at me as he tried to shove it down my throat, I didn't take it. It was just a REALLY bad situation where the combination of events just made it even worse. :( I was RXed the xanax by my old GP, by mistake actually (I was suppose to be RXed Xanaflex, a muscle relaxer...typo's >.<). So I do not have many left. I intend to ask my rheumy to see if this can become a long term treatment for when I need it.

Whats crazy is I have been told this GP is the best at our clinic. I just don't see how that is anymore. My old GP at this clinic was scatter brained and talked really fast, but at least she gave me pain meds no question and ensured I was comfortable. Too bad switching back is pretty much impossible...the only reason I got this new GP is bc I left for four months and came back.

Again, thank you both for the words for encouragement...it always amazes me how strangers with a common ground can come together like this!
 
I know this is a radical suggestion, and I don't know if your circumstances mean it is even possible, but to an outsider like me you seem to be in an untenable situation, with your health and it doesn't seem like it's doing your marriage any good. Would it be possible for you to go home to the states, alone for a few months, to see if you can get a handle on things, get a decent standard of medical care and to have a break from this awful situation?

I hope the new Rheumy turns out good (do you have an appointment yet?) but your GP is probably going to give some kind of referral letter, and who knows what she will put down about you- I don't mean to freak you out here sweetie, but she is doing far more harm than good.

Giving you pain relief that you need is not treating you for something that you don't have ffs!

Happy's advice about finding an advocate is an excellent idea.
 
Allie - If they didn't give you Tramadol at a pain clinic they may be able to find something to control the pain better - Fentanyl patches or Gabapentin - there are so many different options. Also they would be able to help you with the mental and psycological effects of being in constant pain - Either way you need to see a different GP - this woman does not sound like she is going to help you Emotionally or physically. - Fingers crossed things improve soon xx
 
My marriage is actually doing very well...I'm sorry if I made it sound like it isn't. We have worked really hard to get into a groove where we can both handle this illness together. At first we did have a really tough time at it...we had only been married 15 days when my first big flare started. :( At first it was terrible...even some abuse. When I went back to the states last year to finish college it showed both of us what it would be like without each other...one thing my husband said to me that I will never forget is "I realized I would rather be with you, my best friend and wife, with this illness than be alone". He went through counciling while I was gone, and since I have gotten back things have been thousands times better. Last night, like I said, was just very bad events that combined to a VERY bad outcome. And I would have to be in the states for a VERY long time to get any kind of progress on this diagnosis, like you guys know in your own experiences...I'm really hoping this american GP at the hospital 3.5 hours away can help me figure this out, even just a little bit more. I'll have to delve into pain management with him, and anxiety management as well!
 
Allie & Estrella, how long did it take for a dx of lupus/MCTD? I think it's odd that our issues are so uncommon, but I am SOOOO glad to know it's not in my head, not JUST IBS, and that there are others out there like me!!!! I got married last June 25th, and all of my problems started 3 months after that. At first, I thought it was a virus, and then some of my close friends and family started asking if I was pregnant! :O While my hubby and I are not planning on kids for another 4 years or so, I almost wish it had been a baby instead of all this awfulness! Estrella, I am right there with you on the fever, pain, and sore bottom :( I see a rheumatologist July 25th...seems so far away. I am hoping & praying she can help me! And Allie, I completely empathize with you on feeling so down! There are some days I don't even want to get up. It's difficult sometimes to explain to my sweet husband, friends and other family why I feel so down some days, but I think after I got the "everything's normal and you need to see another specialist" news and he saw how much it upset me not to have an answer, he understood more. I went to visit family last week after the news, and when I got home, I had a dozen coral roses and Jadeite (my favorite dish-ware) and supper waiting for me. :) This has been especially hard for us because we dated long distance for 3 years (4 hours away and different time zones, only seeing each other once a month), and felt so happy to finally be together. Some days it feels like this disease is taking me away from him in some aspects and I hate it.

I want to end by saying a HUGE thank you to every single person in this group who has read, responded and listened to my (and everyone else's) stories, complaints, and vents. I can't say enough how much it really does help to have others who can relate! Hope everyone is having a good day (despite how yucky most of us feel :( )
 
@Hannah: I have Crohns and have a positive ANA but no Lupus. I have had 3 different doctors: from a rhuemie to a internist to a GI tell me a positive ANA does not equal Lupus. Apparently a ton of people have a positive ANA and they see it a lot in mono patients. You do have some Lupus sy,proms so it wouldn't shock me if you still had it though. Unfortunately, Lupus is one of those devastating diseases that NEEDS to be diagnosed early but doctors are reluctant to just hand out a DX due to the serious medications.

@Star: It could be possible to have Crohns and respond to pred. I am in the hospital now and am about to get my IV prednisone. Apparently, I have a lot of issues with absorption and my inflammation is so wide spread it just doesn't work. I only get benefits of Prednisone at 50-60 mg and it has to be IV. Even if you have IBS, it should help that shoulder, right? :kiss: I think of you often!! You deserve some rest and a break.
 
Keepingfaith: what doctor diagnosed your crohns?

When I was born, I got a staff infection in my spinal cord and had to be in the NICU for a few months. The doctors told my parents I'd always have a weak immune system from that. When I was 8, I began breaking out in severe hives every night. I had allergy testing which showed allergies to lots of things. I had sever growing pains when i was 7. In highschool I had severe female problems. I started going to a chiropractor when I was 13 and went until last year. October 2011 is when everything else started. The rheumatologist will be my 5th doctor to see since November, 3rd specialist. My GI specialist at Vanderbilt told me if all my results came back normal, the rheumatologist was next. I may not have lupus, but she said there was definitely some sort of autoimmune problem going on and that she didn't think it was crohns or u.c. anymore. For nearly a year, my quality of life has become so bad, I can barely grocery shop. I'm to the point that I won't be surprised at any diagnosed I get; I just need to be diagnosed with something so I can get help and hopefully back to living normally.
 
Allie is there any way you can see another GP in another surgery I just worry that she has made her mind up and wont look deeper for you.

When I had my last colonoscopy my nurse told me that her friend had symptoms ( all cronhs related ones ) for a 3 years and the doctors told her IBS to its all in your head and everything in between. She had a colonoscopy last June and it was CLEAR then symptoms back 6 months later and she was riddled in crohns and the told her when she came out that she needed her colon removed, she refused and went on pred and has saved her colon. You know your body better than anyone else don't give up or allow anyone to make you question yourself xx
 
I got diagnosed by my GI at Childen's Hospital of Alabama in Birmingham. Biopsies confirm taste duodenal Crohn's as well as Ileocolitis Crohn's. I was diagnosed by my Rhuematologists with Arthritis :smile

My longest hospital stay was in November & I was there for a month. I am in the hospital again now. I started out on 60 mg IV prednisone in October & finally got off in April. Now I'm in the hospital & I'm back up to 60 mg. Prednisone is evil but when given through an IV, I feel amazing!!! I've been on all the medications with the exception of Tysabri & Imuran(too mild of a drug for me) since my DX in October. I'll do anything to keep all of my body for as long as possible. I agree it sucks to have no quality of life. I deffinately know what it's like to be undiagnosed & frustrated. As you can see, being DX doesn't necessarily mean you'll get better. I honestly think this is why my disease is as bad as it is- late diagnosis
 
Hannah, I started getting sick in June of 2010 (had symptoms since I was 15, but my first major flare started then)...went to several ER's the first few months, got diagnosed with a hernia, had surgery where they found NO hernia July of 2010, then started the journey of test after test for crohn's...tests went from December of 2010 to August of 2011. In there was a hospitilization for "bowel inflammation" for one week. After all the tests came back normal I went to a rheumy Septermber of 2011, then it was found that my ANA was positive, pred trial in October, then loose MCTD diagnosis December of 2011. So, it was a little less than two years to get this VERY loose diagnosis. They have tested my ANA two different ways, and the second way it was negative...this does NOT mean I do not have lupus (it even says so in my records), but that negative test has hurt my chances of a solid diagnosis anytime soon.
 
Keeping faith, you are right, a positive ANA does NOT immediately mean you have Lupus. BUT, crohn's patients DO NOT usually have a positive ANA. In my experience, if you have a positive ANA it is not crohn's disease. My diagnosis was based on more than just my positive ANA, but the positive ANA is what led my doctors to steer away from crohn's disease and try and peice it together as something else. After that it was my response to prednisone, then my response to plaquenil, a lupus medication, that led to my diagnosis. Thank you for reminding us to make that clear, a positive ANA does NOT mean lupus, it just means you have autoimmune antibodies in your blood.
 
So guess who is back in hospital? Lol.. im just sat waiting for blood results before they decide what to do with me. i hardly have any pain. its just the bleeding and feeling ill after eating theyre concerned about. everybody remembers me from being here last september which is nice
i think theyre going to try and do a sigmoidoscopy at some point.
guess ill keep u posted..
 
Wow, this thread has been super busy! I'm going to do my best to reply to everyone.

Carrie, thanks! I actually just got my hair chopped off today (it's super cute!). I got side-swept bangs cut and a short slightly angled bob above my shoulders. So I think I am going to get the straight-across clip-in bangs like you got, that way I could do either kind of bangs depending on my mood. :)

Star, oh dear, I'm so sorry to hear pred isn't working. :( That's so frustrating! I think Dannysmom mentioned something similar with her son, I believe she said he took pred at times over the years for other issues and it worked great, then he took it for presumed IBD but it stopped working and/or he had a bad reaction more recently? Hopefully she sees this and can give you more details as I may not be remembering it right. But anyway, apparently pred can sometimes just spontaneously fail, I'm not sure why that is. It sure is frustrating, I was so hopeful that this was going to be magical for you like it was for me. :( Poor thing. I don't suppose you're doing any better today? Big hugs to you either way! I hope you can figure out what to do next - I know Aza was on the table, are you still considering it?

Hi FosterFamily2303, welcome to the club. Wow, it sounds like you've been through a fair amount of surgeries with no luck! I hope the endoscopy went well - I see you posted yesterday so I'm guessing you've already had it done today? How did it go, did they find anything?

HannahN, I'm glad you found us and because Allie's story does indeed sound very similar to yours! I had my ANA tested and it was normal/negative - I had it tested when I was first diagnosed with arthritis, they wanted to see if it was Rheumatoid arthritis or not (it was not). I didn't know until I started following Allie's story that stuff like Lupus can mimic Crohn's-like symptoms. Good luck, I hope you can get a proper diagnosis and some treatment and relief soon!

Bozzy, I replied to your other thread but will say that I hope they can find the cause of your bleeding and other symptoms! I don't usually bleed, only when I get a fissure or a hemmie, and I can say as a non-bleeder that it is pretty scary to see blood on those few ocassions that I have it, so it must have been really scary for you! Good luck with the sigmoidoscopy tomorrow, please keep us posted on how it goes and what they find.

Living in a Bubble, welcome to the club. Being on pred could definitely mask your symptoms and make Crohn's essentially "disappear" (visually at least) on a scope. I am glad you're having what sounds like a thorough investigation of your files soon - if it were me, I'd explain that I was on pred at the time of the scope and would request a re-do of the colonoscopy (and make sure they take lots of biopsies too). Stories like yours frustrate me especially so, how awful that they saw evidence of Crohn's and diagnosed you, then yanked the diagnosis a short time later while you were on meds that specifically and quickly heal and mask the signs of Crohn's! Ugh. Good luck on Friday with the appointment, please keep us posted on how it goes.

And finally, Allie, you poor dear. I read your posts several times and they just made me so sad, to the brink of tears, and I am not even quite sure how to reply. First I will say, when my illness is active it severely screws with my emotions - I cry at the drop of a hat (I can recall crying at multiple TV commercials and crying through entire conversations when my mom called me during flares, I just could not control my tears). I get very, very depressed too. My mind goes to very dark places. I haven't cut myself, but I have had thoughts about ending my life during those dark times. I never would, of course - I'm an atheist, so I don't believe there's anything like heaven or an afterlife, it seems to me that this is the only life I'm going to get, and I have to make the most of it and not waste it or end it no matter how tough things get - being alive is better than not existing, regardless of circumstances. But my thoughts have gone there at times. Anyway, my point is that I understand, when you are so ill for so long it really really wears on you mentally and it is so easy to get down and to get thoughts or urges to cause self-harm. I'm sad that you acted on the urge this time, but I am really glad that you seem to understand how terrible it is and that you don't want to do it again. I agree with what Happy said, find someone to talk to and to advocate for you. You and your husband have basically been going through this more or less alone, and it sounds like help is needed. Your hubby's answer is to shove pills down your throat and that doesn't necessarily sound like the best solution to me. Is there someone affiliated with the military that can help the both of you? Or someone involved with you in the plays/musicals maybe? I know you must have somewhat limited resources, living in a foreign country, but surely there must be someone who can help advocate for you and both your physical health and emotional/mental health. We're all here for you, although again we're limited in what we can do for you through the computer. Big hugs to you! I hope things are looking much brighter now.

Okay, so, anyway. As for me, I've been a bit stressed about my new boss so my guts haven't been super happy. I was actually a bit constipated yesterday and barely went (and when I did it was like little hard rabbit poos) and I am making up for it today by going more often than usual and having looser stools than usual, and I've been a bit crampy too. My new boss had set up a meeting for us today to talk about what I do so I was nervous about that - I hate change and didn't want my job duties to radically change! Fortunately the meeting went really well. She's really nice - I told her about my health issues and that I might need to call in sick more often than the average person, and she said no problem at all - it turns out she's got health issues too, so she totally understands. And, when we went over everything I do in my job, she said it sounds like I know what I'm doing and I should just keep on doing it with minimal changes (and the few changes that will happen sound kind of fun)! :) Yay! So that's a load off my shoulders anyway. Things are looking up.
 
Thanks cat-a-tonic ...yes lots of un needed surgerys! With my endoscopy they found inflammation where my esophagus and stomach meet-they took a biopsy of that and a biopsy off my small intestine even though that looked ok. Just waiting on results from both scopes.

And hi :bigwave:everyone else. Sounds scary with lupus scares, and all un known. EveryOne hang in there! Sorry hard to keep up with this busy thread when u have a very active toddler :):runaway:
 
So my MRI results show that i have a type 1 chiari malformation. so ive got to see a neurosurgeon. the docs dont seem too concerned. but i dont know what it is.
because im on my mobile in hospital - with limited signal - i cant be bothered to google it lol
im also still waiting for my sigmoidoscopy xxx
 
Chiari malformation (kee-AHR-ee mal-for-MAY-shun) is a condition in which brain tissue protrudes into your spinal canal. It occurs when part of your skull is abnormally small or misshapen, pressing on your brain and forcing it downward. Chiari malformation is uncommon, but improved imaging tests have led to more frequent diagnoses.

The adult form, called Chiari malformation type I, develops as the skull and brain are growing. As a result, signs and symptoms may not occur until late childhood or adulthood. The most common pediatric form, called Chiari malformation type II, is present at birth (congenital).

Treatment of Chiari malformation depends on the form, severity and associated symptoms. Regular monitoring, medications and surgery are treatment options. In some cases, no treatment is needed.
 
Thanks for this fosterfamily :)
Ill let everybody know what the neurosurgeon says. hopefully im one of the cases where no treatment is needed. so fingers crossed - im feeling hopeful!
No sign of MS as the rest of my brain and spine are fine which is awesome news :)
 
Bozzylozzy, bless your heart! I have dealt with Arnold Chiari! My mom was diagnosed with it 4 years ago. It took almost a month to diagnose her. She had decompression surgery a month after her diagnosis at St. Thomas in Nashville, Tn and the doctors there were wonderful! I know every Chiari patient's problem is different, and unique, but if I can answer any questions or you need to talk, feel free to PM me! Praying for you and your visit with the neurologist to go well! I'm sure it will!
 
Hey all

Allie: Feel better, don't be discouraged. Sounds like you're having a hard go of it (I'm gunning for understatement of the year award). Go get some real doctors, god hearing that stuff is frustrating - doctors should be here to help, but the more I read the more it seems like too many of them simply arent.

Cat: Sounds good with the new boss! Always a bit o stress, but it's the worst when new bosses are, well, you know. Pile on extra work just so they feel important. As for constipation, story of my life. Well, the last few months anyways. I usually have more than rabbit poops, but generally when I do, I'm not doing well at all.

As for me,

Still doing fine, trying to avoid roughage but you know how it is 'I'm feeling great, this little bit of green pepper won't hurt me..."

Still got mild joint pain, throat swelling, but gut pain is down to about a 1 or not pain just mild discomfort.

Am I better? Fuck no, put a salad in front of me and I'll prove it the next day. I should get a doc's appt this week or next to get her to look at my throat again "Oh is it still inflammed? Still think it's virus? Test for that so I can say I told you so?"

I really don't know where to go. I feel like if I go to my doctor's office I'll just get 'oh see, it's just IBS and it comes and goes'. Maybe it is, but I really doubt it. I bring up the blood again and I'm sure it'll be 'oh well that's hemmorhoids for you'. I only started having blood again as my stool became regular, and the blood is right in the thick of mucus most of the time, so how does that indicate hemms?

I dunno. Any suggestions?
 
I just typed a nice long post, but my computer ate it :<

Sorry some of you are doing so badly, I'm thinking of you and wishing you all well.
Saw dietician today, she has no idea what's wrong with me, in her words I'm 'puzzling'. She's sending my notes off to a specialist colleague of hers for another opinion. At my suggestion I'm trying some probiotics for a month.

Finished my packet of Ami last night..no more yay! I hate that stuff, it only gave me the side effects and minimal releif if any. Follow up with GP on Monday to discuss about it. I have a feeling that my GP is just going to ignore me again.
Family is stressing me out again. I want my own space and quiet again. My dad is being really mean and unsympathetic and things. He is getting on at me for the simplest of things and I've had enough.

I've been trying papaya enzyme, and found it works quite well, has anyone else tried it at all?
 
Hey everyone figured I'd update. I got out of the hospital last Thursday and since then it's been up and down. In many ways I'm much better but still battling with this mystery pain :( I finished my c diff antibiotics (all 3 of them!) yesterday so now we will see if its truly gone or not. My mouth appears to be better and not as bumpy or hurting so I stopped using the rinses for that. I'm not having diarrhea which is good but still having the terrible pains associated with it, without the ability to go. (I am going just not in the frequency of these pains) I'm not throwing up...another good sign although am very nauseous all the time. I'm waiting to get a follow up appointment with the GI but until then am just trying to take it easy and deal with this awful pain. I'm on fentanyl pain patch and norco for it which helps me get through the day certainly, but there are still times when I'm crying it hurts so bad. BUT over all I am doing better and thankful to be home. Two weeks was a long time!

Hope y'all r all doing well. I'll try to catch up with u when I'm feeling a bit better.
 
Thanks Cat. I haven't really had to deal with depression as much as I have had to deal with anxiety...I actually feel very blessed that I was accidently RXed the xanax, because it has saved me many times from severely hurting myself. I can remember a very specific time where my husband was away in the field and we got in a fight over the phone, and I mentioned my pain, and the fight ended up where he hung up, and I couldn't get back in touch with him, and I felt like I was spiraling out of control alone here. That was the first time I grabbed the xanax, and I'm still glad I did. Chronic illnesses really do screw with your mental health. The cuts are healing really well, thank goodness...my husband sealed them really well as soon as it happened, and he has helped me keep them clean. We got butterfly bandages on them so that the scar will be minimal. I know this can't keep happening...I do not want this to happen EVER AGAIN. I have 6 xanax left, and I plan on splitting them and seeing if half a dose still works when I need it, and then I plan on asking my rheumy about long term options. I don't know if something other than medication will work....I have tried so many things in the past, but when it boils down to it I spin out of control so fast that I cannot get my mind straight to do anything. Its not a panic attack where I feel like I'm dying...its a panic attack where I feel like I'm crawling out of my own skin, and I want out of my own skin as a result. Its really hard to describe. I'm just mentally exhausted.....I actually had panic attacks both yesterday and today, and both times ended up being too bad to handle without medication. I am just in freak out mode. Both times my husband and I rationally decided a xanax was needed before it got any worse. Today sucked being on xanax in the middle of the day...that stuff makes you really drowsy! It was better than freaking out but it was hard to chase a puppy all day when I was so tired.

Speaking about the rheumy, I called the army hospital yesterday and got bad news. They saw the order from the MRI and cancelled it and changed it to a CT scan. I will not go and have another CT scan when I've had two in the past year and a half for this problem and it has never seen anything. So, I have to find a way to contact my GP and see what she wants to do.

Bozzy, I'm sorry you are still in the hospital and that they found a problem. :( I hope they figure everything out as soon as possible so that you can go home to that cute baby of yours!
 
I wish there was some MAGIC pill that would solve ALL of our problems, and have no side effects! :) oh me, I am trying SO hard to be optimistic! I hope everyone is getting somewhere with their doctors/specialists in this constant struggle of craziness we all have!

Bozzy: My mom began with a bad headache with stomach virus-like symptoms. My family goes to a chiropractor. My dad called him after she had these symptoms for a day or 2, and he said to bring her in for an adjustment, to see if it would help. 2 hours after they got back, she started asking when they were going. She had no memory of being there. So we decided to take her to the ER after asking my chiro's advise first. Not long after we were at the ER, she started asking who I was, then my dad and so on. Her memory progressively got worse. 2 or 3 weeks after countless tests, and possible diagnoses of a brain tumor, meningitis, stroke, and many other things, a neurologist happen to catch it, and said it was fortunate that we brought her in when we did. They scheduled her surgery a month later. My mom is also a heart patient and had to have her heart closely monitored. We we're told if she didn't have the surgery, she could go blind, become paralyzed, or lose most of her memory. After they were able to give her some medicine to reduce the swelling, her memory started to come back (and this was a few days after she was admitted).

I was a freshman in college at the time, and I can't tell you how heart-breaking it was to not have my own mother not know me or the rest of my family. My mom's surgery went really well. They were able to "push her brain back up" and patch the "hole" with a special mesh material. It took her a full year to recover: my dad and I had to help feed, dress, bathe, etc. for a while. And we had lots of help and support from our church family (my dad is a minister). It apparently was a birth defect that was never discovered until 52 years later!

She has frequent "odd feelings" in her neck and head now, and some headaches. She gets tired more easily now, and also has a hard time swallowing a few things now, and has a frequent cough (apparently this is common). And recently says it feels "swishy," so my dad and I are concerned about her and want her to get another evaluation, but she doesn't want anything to do with doctors much anymore, and I can't really blame her. I am married now and don't live at home anymore, but when I do see her, it's hard to believe that was 4 years ago.

I don't mean to scare you, and I'm sorry if I have. Her's simply wasn't caught early. Yours' sounds like they have diagnosed you early and maybe your symptoms aren't as severe as my mom's was. Every Chiari patient is different, much like so many other health problems. If your's doesn't need surgery, that will be a blessing!!!! And I hope you don't need it :) My thoughts and prayers are with you!
 

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