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Alisa you are beautiful! I don't know what these girls are talking about- I have bags under my eyes and I am thin. I know exactly what you are saying. I am in two clubs and over commit way too much but when I dont feel good everyone knows its because of whatever crazy condition I have. This semester it has been god awful chest pains and migraines. I explained to everyone before the semester started what I was going through during a meeting and I told them that if I wasnt able to attend an event or do something that it wasnt because I wasnt dedicated or committed but because I am going through some freaky weird illness that I dont have a name to. They understand and even go out of their way to help me carry m back pack when we have to climb stairs or walk a long way. I am very assertive and I when I cant do something or back out and start to get that look i make it damn clear. It makes me so mad that this girl treated you this way:ymad: I wish I was there to say whats on my mind ArGGHHH! I hope she gets her somehow and learns her lesson. All of these engagements/events/ or activities are not worth you risking your health. Do they have an idea of what is going on as far as what it is your battling?
 
allie - try to hand in there. i know it's tough when people don't understand. at least it sounds like you have a few people there who support you. only do as much as you feel able, and when you can't do it, don't. and don't feel bad.
and don't think of it as looking sick. my friend tells me this is my supermodel phase. :ylol:

space - you need to ask for some tests. the passing gas thru another hole - sounds like a fistula. i don't think that happens with IBS> i have one, and it's not fun. and i know that it's not comfortable to talk about with your dr, but they need to know. the more they know, the more likely they are to figure out what you have.
 
Thanks Dayz and flowergirl. I do have girls that understand, thank god. Its just this one who is in charge of this dance. I have participated in this dance 100% since 2007. I just can't do it anymore, and it killed me to decide not to do it. I'm one of those people that when I commit to something, I COMMIT. I have been President, two other exec positions, and countless other positions for this sorority. I'm Fraternity Heritage chair right now! I have only said NO twice in being in this sorority, and this event is one of them. Because of how much I commit, not doing this is really hard, but I am putting my health #1 right now. That and school. I can't practice this dance for hours a day like everyone else. I've done it three years prior anyway. And if I can't do that, why would I sit there for hours a day pressing a button on a computer...I would have done it if she hadn't completely insulted me while trying to get me to do it, but now there is no way.
 
@Allie...Just remember there are some people who are sympathetic of the condition. These people will support you and your fight. Just keep on going and do what you can, you are the only one who make the judgements!
 
@flower, I agree. Which is why I made an appointment with the GI doc. It has taken me 5 weeks to get into see her and I am still 2 weeks out from my appointment! So frustrating.
 
Hi SpaceC06 (your username isn't an homage to Space Channel 5, is it?) and welcome. I agree with everyone else, it sure sounds like a fistula to me. Here's a link, see if this sounds like what you've got going on:
http://www.mayoclinic.com/health/rectovaginal-fistula/DS01065

Allie, that sucks that some of your sorority sisters are so awful, but I'm glad to hear that there's at least one good one in the bunch who understands you're ill and not able to fully participate in everything. Not much longer now till you get the blood work results back, right? And then hopefully you can try at least a trial of pred?

I still haven't heard back from my GI yet - surprise, surprise! I left another message this morning reminding them that I'm still upset and still waiting on a call back from him. The receptionist looked up my file and said that the nurse is once again dilligently trying to get ahold of my GI. If I get a call back from the nurse rather than the GI, then I'm going to use that home/cell/? number I've got for him to try to reach him directly. I'm beyond sick of this. Having a lot more abdo cramping and LRQ pains in spite of eating safe foods. At this point I'm almost tempted to take the Pepto just to feel better! Ha ha! (Hey, if I can't laugh about this ridiculous situation then I'm gonna end up crying!) The weather's making me grumpy today too - it went from warm and sunny to cold and rainy, which always gives me a horrible headache. I'm trying to look on the bright side though. These weather-related headaches never go away until the weather changes, so I'm stuck with this until it gets sunny out again. And eating sugar tends to give me a headache too. So since I've already got a headache, I say bring on the candy! :p
 
I just had an "aha moment"! I found my GI's phone #, the one that I'm thinking could be his cell, in my phone. So I did a reverse phone lookup, and it looks like it's his home phone. Jackpot!

Also, on a really odd/funny note, for some reason the site that I did the reverse lookup on says where my GI previously lived - Roswell, NM! That would explain why my GI's such a weirdo, he's an alien!!
 
Allie, so sorry to hear that your sorority girls are so mean to you... that really makes me upset! I only live 9 hours away, but with pit stops because of the tummy, I could be there in 14! hahaha! Let them know that you have a big community of people to help them understand what's going on with you, if they can't understand themselves. We are like a family here, and no one messes with our family! :( Hope things get better!

Cat, I like your "aha moment", I have many of those! hah :)
 
@Cat, I definitely pass gas that way. I have yet to see any fecal matter thank goodness, that probably totally freak me out!

@Flower, I haven't tried that. I've been this way for months whats another two weeks?
 
Cat-a-Tonic said:
I just had an "aha moment"! I found my GI's phone #, the one that I'm thinking could be his cell, in my phone. So I did a reverse phone lookup, and it looks like it's his home phone. Jackpot!

Also, on a really odd/funny note, for some reason the site that I did the reverse lookup on says where my GI previously lived - Roswell, NM! That would explain why my GI's such a weirdo, he's an alien!!
Click to expand...

lol

alien. that's awesome.
 
Space, My GI is Dr. Mason at Southwest Gastroenterology. I'm not sure if they take Pres but they take United, which is usually accepted where pres is. I don't know about the other doctors they have there, but I assume they are as good as Mason. He's a nice guy and on my first visit, I told him all of my symptoms and he ordered a colonoscopy an endoscopy and a slew of blood tests. If your GI doesn't want to run these tests, I would suggest giving them a call, because I got them without even asking for them. And if you have a fistula, you need these tests. I haven't been at this long, but so far I really like Mason. He can make me laugh and is very thorough and seems very smart.
 
Space..you guys are silly lol

Thanks Cat and Sunshine. :) Its just her thank goodness, well at least that I know of. The rest understand. I'm the oldest person here...its their turn to do this! :p Sunshine we do live close by...but 14 hours? :p

Cat, I have no idea on the trial of pred. My Rheumy appt was so short, he didn't even discuss treatment. I'm guessing pred or something similar would be used if I am ANA positive but I'm not sure. For the possible fibro DX..I'm not sure. I try not to think about that possible DX, because I know it doesn't match my symptoms.

The weekend is almost here!
 
Relationship Troubles

Sunshine and Allie-

I posted a couple of months ago that my illness ruined my relationship. My boyfriend of two years got tired of my being sick all the time, not wanting to kiss him much and of course no sex, and not wanting to go out or hang out with his family because I couldn't stand being around food (the smell of food made me hurl and it was embarassing) to the point that I was like, ya know what, I gotta think about me before I can think about "us". It was a mutual agreement that I would move out and we would break up. Since then he has been calling me and coming over SO much- and doing all the things I needed him to do before- stay up with me when I am too sick to go to bed, helping me in and out of the bathtub when I am too weak to do it myself, and just "being there". The other night he called at 2 am, and of course I was up from having vomited for two hours, and he brought over his Wii and we played Jeopardy and he just made me feel so much better. Now that we are broken up, he is the "boyfriend" he never was before. He has been asking me just about every other day to take him back- NO, it is too late.Why couldn't he do this before now? :yfaint:

I do love him, but I am too sick and too tired to try to be his girlfriend when I am just trying to make myself well again. I just want to be friends now. He wants to marry me :yrolleyes: I can't even go there. So I totally understand how you two feel. I hope you guys can make your significant others understand NOW before it is too late. Most people do not understand what is like to be chronically ill. Really there is no way they can unless there are in our shoes :eek: One time he had a terrible stomach bug with horrible D and vomiting like every 10 minutes- lasted for 12 hours, and he thought he was gonna die. I had to put it to him like this, "Remember that bug you had? That is me- every other day of my life." He was like... Oh :ybatty:

Both of you, remember this... Take care of YOU- let God take care of the rest. Love you guys :ghug:
 
Happy Friday everyone. I hope it is a better day for all of us! Just being Friday is usually an uptick for me.
 
Carrie, hear hear! This has been such a long week, I'm glad it's almost over.

I *still* haven't heard back from my GI. I was going to call him on his home # last night but then I found out that the original Ghostbusters was playing in theaters for some reason, so hubby and I just had to go. I called his office again this morning and said I'm still waiting to hear back and I want to hear from my GI directly, and I reiterated my questions - about the Pepto thing and about the long term side effects of Asacol. The nurse was really nice and said she's paged him again and she's made sure all of my questions are in the computer for him to see. She also said he's been the on-call GI doctor at the hospital all week which is probably why he's been so busy. Well, it would have been nice if somebody would have told me that sooner! I'm hoping he calls me today, if not I may try calling his home phone tonight or tomorrow.

Shan, how odd that your ex became the man you needed him to be only after you broke up! I think you're right not to take him back, if you did he may well slip back into his old ways again. You're totally right, you need to focus on yourself and take care of you right now. And if he's there to help then that's a bonus!

Allie, I really hope it's not a fibro diagnosis that you end up with. If it were me, I'd beg to just try pred no matter what, just to see if you respond at all. Like I've said, that's what I did - put my foot down and said I want to try pred!! And, if this rheumy says it's fibro and no pred for you and that's that, you could always see a different Rheumy back in Germany, right?

Dahlface, that's another funny thing - my GI is not a native of New Mexico, I know for a fact that he is originally from India. So I wonder what brought him to Roswell in the first place!
 
so i've discovered that even on remicade, yogurt (or probiotics in general) are just not my friend. it's like my body is saying, i have enough problems, i don't need you introducing bacteria (even though it's supposed to be the good kind).
so weird.
 
@flower: Which kinds of probiotics did you take? I took Align for a while but saw no difference at all. I have heard the refrigerated ones are better, but never have gotten around to getting any.

@Cat: Well, I guess that makes it slightly more understandable that he hasn't called you back, but still. When did he tell you to get off Asacol?

@Allie: When are you supposed to get results back from your blood tests? Hope you hear something soon.
 
May, if I'm remembering right, he told me to stop taking Asacol exactly one week ago, last Friday. But then he never sent over a prescription for the new med I was supposed to take and I was also not specifically told that it was Pepto, so I stayed on Asacol over the weekend. I actually stopped taking it on Tuesday when I found out I was supposed to be taking Pepto - I didn't start taking Pepto though, because that's ridiculous, so I'm currently on day 4 of no gut meds. And I'm noticeably worse - having more cramping & LRQ pain off of the Asacol. I certainly hope he calls me back today or I'll be ringing his house phone soon!

Flower and May, I also had no luck with probiotics - no difference in my guts at all, and in fact my acid reflux got worse the longer I was on probiotics! I did some googling and found that in some people, probiotics can make GERD worse, so I immediately stopped. I was using a medium quality refrigerated kind of probiotics so they weren't the cheapest ones either. My reflux has somewhat improved, but that may be due to a bit of a change-up with my reflux meds. I would only take probiotics again if I were on antibiotics - I can tell my gut flora gets all messed up when I'm on antibiotics, I get much crampier, more pain, more d, etc. I do eat soy yogurt a couple times a week and that doesn't seem to bother me, but I'm probably not eating it often enough for it to affect my GERD.
 
i've tried about half a dozen brands of acidophilus, almost all refrigerated. i've tried culturelle, and couple others that had multiple strains of different stuff.

it makes me go to the bathroom more (like i need that) and it makes me pass a lot of gas and mucus (and it's not the herxeimer thing). my gut just doesn't like foreign bacteria.
 
Yeah, my GP told me that they are not in the "it can't hurt" realm of remedies. They do hurt some people. My theory is that the rounds of Xifaxan have allowed my gut bacteria to recolonize and maybe it's the way it should be right now, if that's what was giving me my problems. I am hesitant to do anything that might mess up that balance. That's interesting about it affecting your reflux, Cat. Since I have reflux that I mostly don't feel, then probably I should stay off of them, too. Fine with me, the texture of yogurt makes me gag sometimes.

Weather is great here today. It's definitely getting cooler. I hope everyone has a decent weekend.
 
Flower, I've read that there are different "gut bacteria types" just like there are blood types. It's apparently a pretty new discovery that there are these different types of gut flora that people can have. So not a lot of research has been done on this yet, but I wouldn't be surprised if people with, say, Type A gut flora don't respond well to probiotics, or something along those lines. Here's an article that explains the gut flora types way better than I can:
http://www.sciencedaily.com/releases/2011/04/110420143620.htm
(Am I the only one who cracked up at the "artist's interpretation"? Hmm, are my guts red, blue, or green? ;) )
 
ShanBanana, I'm sorry your illness affected your relationship that way. It sounds like he knows that he made a mistake. I understand why you haven't taken him back though.

My blood results are suppose to be in next monday. They have a website I go to or a phone number I can call to get the results. I'm really hoping one comes back positive.

I've tried probiotics as well. When I had predominantly IBS symptoms, Activia yogurt helped. I tried the pills a couple months ago, and they did nothing.
 
Major bummer. We just found out a family friend of ours has pancreatic cancer. So that's not good. I don't think hearing that is ever anything but a death sentence, even if it takes a few years for it to come to that. He just started having symptoms about 5 weeks ago. Crazy what can be lurking inside a person and you don't even know it.
 
You guys! I get to go back on Asacol!!!!!!!!!!!!!!!!!!!!!!!!!!!
:thumleft: :biggrin: :dance: :ycool: :mario2: :banana::emot-dance: :luigi: :headbang:

My GI happened to call me back just after I had left the gym. So I was kind of pumped up and feeling a little more aggressive than usual and I put my foot down with him. He explained that he wanted me to try Pepto because it can work well for certain people with microscopic colitis. He then reiterated that because no inflammation or anything else was seen on any tests or biopsies, that it's just purely guesswork but that Pepto is generally safer and Asacol can cause kidney issues or pancreatitis in a small percentage of the population - that was the long term side effects he was concerned about. I told him that I've tried Pepto and it does nothing for me, that I did really well on Asacol and that I've not done so well since I've stopped Asacol, and that I really want to go back on Asacol. I pretty much demanded it! He relented and said he feels it's pretty safe for me to go back on Asacol, with the caveat that I call him after 6 weeks, and then 3 months after that to let him know how Asacol is doing and if I've got any new symptoms and so on.

So, woot! At the very least this means I get to go back on Asacol for 6 weeks and then re-assess with GI. The even better news is, I was optimistic and brought my Asacol with me to work just in case he said I could go back on it. So I'm officially back on it as of... now! Bottoms up! :D
 
May, I am so so sorry to hear about your friend. That has got to be one of the worst ever diagnoses to get. I hope he's not in a lot of pain and still has a lot of good days left ahead of him. Thinking of you and your friend. Hang in there. How are you doing? Still having that pain?
 
YAYY CAT!!! HOW EXCITING!! :) Now you can start feeling better again!!! So happy for you!! What great news to get, and it's FRIDAY! Even better news :)

Today is the last day of my fat diet, THANK GOODNESS!! woohooo! :)
But is it weird that I haven't had D AT ALL the past 4 days of this diet, when normally I always do no matter what I eat??? I kinda feel like I failed the test lol... My mom thinks it's just that my body isn't used to having SO MUCH food in it and having to do anything with it.. It's not D it's just soft and still is gross and no normal colored though. but just not D. But I'm sure after today I will go back with having D just because, there's no pressure anymore, that's always how it is. When you NEED to have D for a test, you can't get it... then when you're done BAM it all comes back again. I don't get it... but I'm not complaining. It's just that he needed specifically ONLY D for this test... so i haven't gotten any samples except for the first day. Weird, right?!
 
He is in tons of pain, but at least now they can devise a treatment plan. I haven't heard anything other than that they found out it was cancer. I don't know if it's the kind you die in a couple months from or the kind where you have 5 years. How awful. We were just over at their house a few months ago, and he and I talked for a long time about this and that. And to think that at that exact moment, that tumor was probably in there already. Scary. He is a truly genuinely, nice guy. We are actually friends with the whole family - his kids are my husband's and my age. Just terrible.

Glad you get to stay on Asacol! That is great news. I feel somewhat better. Urgent care closes at 8 PM so if it comes back I know where to go. But this is the longest it's let up yet, so I think it might be going away.

Incidentally, this urgent care place was instrumental in getting the ball rolling with my friend. He had had some pain, and couldn't get an appointment with his GP very quickly so his daughter recommended he go there and they did a CT scan right there on site. They saw the inflammation of his pancreas and sent him on somewhere else for further testing. Same thing happened with this girl's grandfather-in-law: he had some minor indigestion issues and had trouble eating - they did a CT and saw he had tumors on his stomach and esophagus. His was caught too late, too, though, so it's been rough for this set of friends lately. She had great things to say about this place's thoroughness.
 
I'm so sorry about your friend May. :(

Cat I'm glad you stood up for yourself!!! That's great you can stay on a med that is working for you.

Today has been good and bad. Pain was alright today, so I went shopping because the weather is great here. But when I got back everything went downhill. I got an email from the FRG (Family Readiness Group, army thing) stating Stuart will be deploying. I am heartbroken. One, he didn't tell me himself, which really hurts. I called him frantic and he said he didn't want to tell me until it was more final. Two, I will be in Germany alone for a long time. We have a year left in Germany after I get back, and more than half of it I will be alone. This is a nightmare. I cannot wait until he can get out, because the stress of being alone in a foreign country is just going to make my illness worse. They told him after the last deployment they were guaranteed no deployment for three years. THEY LIED.

I'm sorry that my anger has nothing to do with illnesses...I just had to get that out. I cannot believe this has happened. These nasty surprises just keep happening.....
 
Mayflower537 said:
He is in tons of pain, but at least now they can devise a treatment plan. I haven't heard anything other than that they found out it was cancer. I don't know if it's the kind you die in a couple months from or the kind where you have 5 years. How awful. We were just over at their house a few months ago, and he and I talked for a long time about this and that. And to think that at that exact moment, that tumor was probably in there already. Scary. He is a truly genuinely, nice guy. We are actually friends with the whole family - his kids are my husband's and my age. Just terrible.
Click to expand...

That is terrible. :( Steve Jobs died recently of pancreatic cancer. He was diagnosed in 2003.
 
I know, and I understand his was the kind with the higher and longer survival rate. At least that's what I read online. I know also in one of the tests he had, another mass was seen around his stomach, so if it's already metastasized, then that could probably be even worse news. These poor people...

So sorry to hear about your husband's deployment. Will you get to see him at all before he leaves? Where does he have to go? I am sorry you'll be alone for so long. Hopefully you'll have some sort of treatment options in place before you go back so you won't be super sick by yourself and in a foreign country. My husband has a lot of family in the military. One cousin in particular is in the Navy and he's always off somewhere it seems. I don't know how you wives do it. That would be most difficult.
 
It is very difficult. The only benefit to it is seeing the world, the pay (he makes plenty to where I don't have to work and we put tons in savings and retirement), and the medical insurance. We have decided that the pay isn't worth it. It is very painful. People have tried to convince me to lie to him, to say that I support him staying in because of how bad the economy is. It was so insulting and degrading.

The email didn't say where he is going, but it is most likely Afghanistan. Iraq deployments end this year. I will have about 5 months with him before he goes, but there will be training that will take up most of that time. Then he will be gone until he gets out of the Army, which is the end of 2012. They say he has to be back 90 days before we leave Germany, but I have seen rules like that ignored before. So I will be alone anywhere from 3.5 months to 6.5......I don't know how I'm going to handle it.

I had had some doubts over the whole getting out thing, but those are gone now. These situations never get any easier. And being sick is really just making them that much harder.
 
Oh Allie, I'm sorry to hear about your husband's deployment. My hubby was in the army too but thankfully he got out just before we met and started dating. I don't know if I could handle repeated deployments. Plus hubby served during peace time, 1995 thru 98. I imagine it's a very different army nowadays! Hubby did go to Kuwait, but there was no fighting involved. Hubby was a cook in the army and pretty much only did cooking, he never saw any battles. But I totally know what you mean about how the army lies. Apparently they told him that his 3 year stint would pay for college totally (that was the only reason he joined up in the first place), but that was a lie. Hubby racked up over $30,000 in student loans that we've been making payments on - the army only paid a fraction of his schooling. Stupid liars.

May, I'm so sorry to hear that your friend is in pain! But glad that he can at least get some sort of treatment, hopefully including some strong painkillers. I hope they caught it early enough to be able to do some effective treatments and get him some good quality time back. It's scary to think about Steve Jobs too - he had the less horrible type of pancreatic cancer, and all the money in the world and access to the best doctors, but he still didn't beat it. That's frightening to think about, what the implications are for those who don't have boatloads of money or the top doctors at their disposal. So sad.

In spite of all the crappiness everyone's going through, I hope everyone manages to have a good weekend anyway! I'm going to work on my Halloween costume, get some pumpkins to carve (and maybe another to make a pie with), and hang out with my Crohnie bestie. I hope I can cheer her up - she's got kidney stones (for the 3rd time, ouch!) so she's been feeling some pain lately. Oh yeah, and I'm gonna take Asacol and hopefully once again feel like I'm in full remission! :)
 
Yeah, my husband has 25,000 dollars in debt too, and he joined to pay for school. What really got me is today is exactly one year since he was deployed to Afghanistan last minute, the same day I flew to Germany. So this really kicked me down while I was already kinda bummed. Stuart is an ordinance officer, so he doesn't battle like infantry, but he does throw explosives and get into firefights. They are training right now, and he watched one of his buddies get shot in the butt (fake bullet of course). He is a platoon leader, so he is in charge of men, and he is responsible in keeping them alive. So I know I will be thoroughly worried while he is deployed. :'(
 
I'm sorry, Allie. I wish there were a way to make this deployment easier on you. As we all know stress can make the guts even worse! :( We'll be here for you during the hard times to come. Hopefully by then you'll have a diagnosis and can be on treatment, that will make things a lot easier for you. Hang in there, not long now until you get those blood work results! I really, really hope it gets you a diagnosis (not fibro).

How's everyone else today? Enjoying the weekend I hope?
 
I called my pharmacy today and I had not only my tramadol approved but also my Entocort. Only it's not Entocort but Budesonide, which I didn't think was available in the US. No matter, I'm just glad I got it and can start. Hopefully I will respond and in time before my next appointment. And not only that, but it only cost me $10! I will start taking it tomorrow.

Allie, I'm sorry about your husband's deployment. I can't imagine how stressful that must be.

May, I'm sorry about your friend. A poet from the national community was diagnosed with pancreatic cancer, after having back pain. She went from diagnosed to 1st round of chemo to hospice to passing in less than six months. The out-pouring support and love for her was inspiring and kept her going and loving and laughing til the end. I didn't know her personally, but I witnessed the emotion and love sent her way, there is power in it.
 
Cat-a-Tonic said:
You guys! I get to go back on Asacol!!!!!!!!!!!!!!!!!!!!!!!!!!!
:
Hi Cat,
Happy for you and hope you do well.
Did your GI order bloodwork to monitor while you are taking the Asacol?
Very important to maintain a schedule for this.
Trysha
Click to expand...
 
I never sleep anymore o_O
All this pain and discomfort just really doesn't go away no matter what I try, and unfortunately when I do fall asleep it's only for like 30 minutes and then I wake up with like a morning sickness feeling. Mornings have always been the worst nausea wise. It's 6:20 in the morning... this is ridiculous. I could try to work on school stuff because I have a paper to write that's due tomorrow, but I don't have the concentration for that. It stinks, when you don't feel well, you don't feel like doing anything.
I went to the mall today with my friend thinking maybe I could do it, since i've been wanting to go shopping for so long now... but that kinda back fired. Ended up in the bathroom most of the time of the mall trip. Oh well, at least I got out, right?!
 
Cat, so thrilled you get to go back on Asacol!!

Allie, I am so sorry to hear about your hubby's deployment :(

Sunshine, when do you get the test results and what is planned for you next?

Dahl, glad you got your meds (and at a great price!), hope they work for you.

I'm not doing so good. done far too much (boring stuff) over the last few days and going to pay for it... but no-one to help me out so I have to do it myself. Just sick of feeling like you-know-what the whole time and being in so much pain. I am waking with abdo pains in the morning which I hate. Just can't see past what I am lacking at the moment; a life, money, a partner, a car, a job etc. As I get worse I can use the bus less and less. Limited funds for taxis and there really is no-one who can give me lifts. I end up being too ill to go out for days so by the time I can, I have a list of errands as long as my arm, and it is hard to get them all done.

I am not looking forward to adjusting my diet but it is the only way I can try and lose weight for the surgery, so I have to do it. I have now told Rheumy and GI things are not good, and I really hope they can get me seen at surgery sooner, or come up with another test I can do in the meantime. I always feel like i'm moving forward when I am having tests you know, even though I have lost faith one will diagnose me some day!!

And Mum just came back from holiday as you know, she needed and deserved it but doesn't stop me feeling envious. She really talked down to me the other day, saying "maybe you'll be ready for a little holiday next year" (since I was saying no faith next year I will get a dx since last year I thought I would this year etc). So I said rather tartly I was well ready for a holiday now, but I could not take a break from my life/illness. She didn't have a reply!
 
Thanks everyone. Its been a rough few days, I have to admit it. I have pretty much cried the entire weekend. Whenever I think "OMG, my husband is deploying next summer" (I can't say a specific date, its against Army rules), I just break down. I don't know how I'm going to handle it, but I am not as upset right now. Maybe because I've watched a ton of Army Wives and they have the same $%#^ issues, LOL. The shock is over. Another thing is my husband sent me a txt saying I don't have the right date. I also read in the news that a couple days ago they started a plan to get all of the surge troops out by September 2012. I also read an article that obama wants to deploy soldiers to Africa for other missions, but Congress is pissed because he hasn't talked to them about it. Long story short, things are most likely going to change. He might deploy later, he might deploy earlier, he might not deploy at all. So I shouldn't start making plans. I do know that I have to get a job as soon as I get back, and to get involved with the other spouses, to have people to talk to and things to keep me busy when he does deploy. OY!

Sunshine, I am so sorry you couldn't sleep. I had the same night...my pain seeped into my dreams, I was crying in some random place begging for it to end. I woke up and the pain was SO BAD! Then I was on the toilet for 2 hours peeing out my butt. ~.~ It was awful!

Hope everyone had a good weekend!
 
It must be catching allie, since it's 1:30 am here and after I get done this time I am going to give in and take some Immodium. Rarely take them when i'm home but need sleep! And I really hate having dreams where I feel pain. I feel enough pain when I am awake, sleep is supposed to be my only break lol.
 
Flowergirl, great job!!!! Glad the meds are helping!! :) I love that dancing banana!

Cat, so sorry you're not doing well! Gosh that's so frustrating I'm sure... :( I hope that your tests are sooner than later so that if the tests do show something that you will know sooner! Crossing fingers for you!!

Allie, gosh sooo sorry! I really wish I could do something to help you, but I know it's such a tough thing to take in and deal with on top of everything else you're dealing with... :( I really wish I could help...

I will be going back to the mayo clinic Tuesday night! Not sure how long I'll be there, but I'll be doing the prep for the pill cam wednesday and then thursday the actually pill cam with the push upper endoscopy. maybe friday he will look at it and recommend treatments? I don't know, I'll keep you guys posted!
OH! I'm going to the zoo on TUESDAY!!! YAYYY!!! SO HAPPY, I hope the giraffes are out so I can pet them a feed them!! I'll definitely take pictures if it's a successful giraffe visiting time! :)
Hope the tummy holds up so I can enjoy the zoo with my love!! :)
 
I've slept pretty much all weekend. these daily migraines are just killing me. now tonight I have ridiculous allergies going on with my nose. just feeling off I guess. I went to a halloween party for a couple hours last night, but it was tough because of migraine.

Allie, I'm sorry to hear your hubby is going to deploy again. I have other friends with husbands in the military, and it must be so nervewracking :( my first experience with this was when I was in high school, and my best friend's brother was in Iraq (before, during, after gulf war). *hugs* I feel for you.

Sunshine, how are you doing after the fat diet is over? good luck with your next pill cam!

Cat, I thought of you last night when I was putting on my 'costume'. I didn't have the energy I needed to go all out, but I did have on my long haired black wig, teenie small har, feather masquerade mask, and cloak. it worked. Especially since the wig was throwing everyone off. hee.

so glad to hear your meds were approved, dahlface.

sucks that you feel like shit (literally) star. I used to have lomotil because immodium didnt' work, but lomotil was like taking concrete.

Sorry to hear about your friend, May. I hope the treatment is helpful.

I'm sure I missed people, I'm sorry.. I couldn't really keep it together for this, I had to keep looking back :D

grats on your weight gain, flowergirl.

edited some of the goofier stuff that managed to get typed in.
 
Carrie, glad to hear you're getting in the Halloween spirit! I worked on my costume over the weekend but it isn't done yet. Hubby's is coming along slowly but surely as well. I need to get in gear though because it's less than 2 weeks until the big downtown Halloween party (it's always the Saturday before Halloween, so it's the 29th this year).

How's everyone today? Sunshine, tomorrow is prep day, right? And then Wednesday is the pill cam do-over? I really hope they figure things out once and for all, get those results to you quickly (and don't throw them away!), and can get you on proper treatment so that you can start feeling better already! I hope the next few days go smoothly and that the prep isn't too awful.

Allie, did you get the blood work results? Any news?

Star, I hope you can take a vacation next year. Who knows, maybe you'll have more answers by then, or you'll have done that immunosuppresant trial, maybe the laprascopy will find something. After being so ill for so long, I would have laughed if you'd told me I'd be in remission now. And I went on vacation back in April (with my parents, talk about stressful!) before I was in remission - I was still having a minimum of 1 to 2 bad days per week back then, and I did have a couple bad days on vacation. But I got through it and I'm glad I went. I'm hoping you can get on the mend soon too and go somewhere fun, you deserve it! Hang in there, life won't be like this forever and remission can happen (even without a proper diagnosis!).

Flowergirl, glad to hear you're putting on some weight! The weight just fell off of me too when I was so ill, and as soon as I started Entocort I pretty rapidly gained it all back plus a little extra (oops!).

Dahl, so glad to hear you get your meds! I wasn't aware that budesonide was available, I was told that name-brand Entocort was my only option back when I was on it. How exciting, I hope it does good things for you! It bumped me out of a flare and on the road to remission. Keep us posted on how you're doing, and I hope you get a lot of relief and into remission!
 
Nope, don't get my results for another week!

Star, I agree with Cat, I hope you are able to vacation. Even as ill as I am I have been taking holidays (like Paris) but by the end of the vacation I was so wiped and sick it was very hard. But we can't not take advantage of being in Europe, so I had to suck it up!

I am doing ok today. Its a normal sicky day, but not too bad.

I hope everyone is doing well!
 
Day 2 on Budesonide, no changes so far, but I am happy to have my tramadol back. My work gave me extra hours this week because we lost a staff member. I'm happy for the money, and I think I can do it. My shoulder has been so bad today and last night. My range of motion has become more limited as the day goes on. I hate the joint pain. Last night, my back was hurting so I heated my bed buddy, but by the time it was done heating, my shoulder started to hurt for no reason, so I used the bed buddy for that, but it hasn't really helped.

My friend sent me some pages of this book she has, it says some interesting things about crohn's. Especially that crohn's is not found in any milk drinking parts of the world.

How is everyone else doing?
I went to a wedding this weekend. My inlaws looked at me like I was a sick puppy with three legs while they stood in the food line. It was italian, and I definitely can't have alfredo sauce.
 
dahlfacepoet said:
My friend sent me some pages of this book she has, it says some interesting things about crohn's. Especially that crohn's is not found in any milk drinking parts of the world.
Click to expand...

Do you mean non-milk drinking? I don't understand. B/c Crohns exists in the US and we definitely drink milk.
 
Dahl, it took 9 days for me to feel a difference on Entocort. I've heard that it can take up to a month for Entocort to kick in, so it's not surprising that you haven't felt a difference yet. Give it time, at least a few weeks. It's not like prednisone - pred literally kicked in within the first hour for me!

That's interesting about the non milk-drinking thing. Although I had heard that Canada currently has more cases of IBD than anywhere else. I also read somewhere on the forum that, the higher north you go, the more cases of IBD. So the southern US has less IBD than the northern states, and Canada has more than the US.

Ugh. Hubby and I have colds. I can barely feel mine though, I've got a bit of the sniffles and an intermittent cough and that's it. I don't really feel miserable or sick though. I can tell my immune system is messed up, usually I at least need Dayquil/Nyquil. I feel fine though with the exception of having a bit of a hard time at the gym - I tried jogging on the treadmill today, and after a couple of minutes my lungs hurt. That usually doesn't happen so I can tell I'm a bit under the weather.
 
It was interesting. They were suggesting that there is correlation between Crohn's and (mycobacterium paratuberculosis) MAP, a pathogen in milk that in cattle, causes Johne's disease, which is almost identical to CD. Apparently the FDA does not require testing for this pathogen and it is often found in our milk supply.
I don't know how old this information is, so Canada may have more cases now. My friend who sent me the pages lives in Canada. She also has mysterious tummy issues.
 
I have heard milk implicated on this site before as a MAP bacteria source. Interesting stuff. It's interesting too that antibiotics are sometimes effective for treating CD.
 
Wednesday is prep day. Thursday is pill cam day. I've lost 5 more pounds. At 98 now! Scary losing weight without having control over it.
 
It's a 100% chance of rain today.. Guess I'm not gonna be seeing giraffes before I go to the mayo clinic :'( so sad. It's 5:30 am. Still hVent slept And feeling terrible. But that's not new... :(
 
Sunshine! I'm sorry you're having such a hard time of it :( I hope the GI will give you something, anything, after the pill cam is done!
 
Sunshine, I'm with Carrie, I hope they give you SOMETHING to help with the pain & lack of sleep as soon as the pill cam is over with! This has been going on for way too long now! You need rest, relief, and to put some weight back on. I hope that comes soon.

I'm feeling crappy today. I feel like I'm in a mini-flare. I think my immune system got turned on to fight this cold and it's decided to fight my guts again a little bit too. I called in sick and am taking a spoon day today, I'm hoping that gets me on the mend again and this doesn't turn into anything worse. I feel weak, my face is pale, I'm having d, and I'm exhausted even though I got 8 hours of sleep. My joints hurt more than usual too. And I can feel like, a throbbing coming from my guts. That's got to be inflammation, right? I hope it goes away when this cold does!
 
Sunshine, I am so sorry that you are still having issues with sleeping. I agree with Cat, this needs to be fixed. If I were you I would DEMAND that I be given pain meds and a better way to sleep. Just because you are undiagnosed does not mean you can't get SOMETHING to treat the symptoms!!! I've been given every pain med known to man since I got ill....if you were closer I would gladly share my tramadol...you seem to need it more than me!!

Cat, I'm sorry your tummy issues are back. :( That really sucks. I hope it all resolves itself once you get over this cold.

Anyone here have sleep issues? I am having the worst time getting up in the morning, and today I have decided I am tired of it. I go to bed at midnight and I don't get out of bed until 10/11 am....and to me this is pathetic. I know its because I have nothing to do in the morning, and I've never been a morning person...but still, I feel like a complete loser. The muscle relaxers make me groggy so I just roll over when I wake up until it is so late I feel guilty. :( Anyone else have this issue? How do you fix it? Now that I think about it, I think I'm going to start a thread on this forum about it...

One of my mouth sores is giving me lots of trouble. It was tiny during my rheumy appt, but it swelled shortly after, and twice now I've bitten into it while eating...which created more sores around it because my immune system attacked the cuts. So now I've got three sores in a cluster, and the main one is three times the original size. Yuck. :( When they got this big in high school I would stop eating and go on a liquid diet to see if they would go away if I didn't move my mouth. >.<
 
Allie, when do you take the muscle relaxant at night? I have trouble with sleep, of all manner. Sometimes I can't stay awake, sometimes I can't stay asleep. I try to take the muscle relaxant just after dinner so it doesn't cause trouble in the morning, but I also need the tramadol for te pain and I've heard that can help keep you up.
 
cat- so sorry you're sick. that stinks. try to relax and let your body heal. what is a spoon day?

allie - mouth ulcers suck! i've had them since i was a teenager. i've tried so many things. orabase helps to put a paste over it that stays for a while, especially good while you're eating and right before you go to bed. i used to use this great mouthwash. you have to order it, but the base is peroxide and zinc, so you could always rinse with peroxide and take zinc supplements. i also took l-lysine. when you have a flare up, take 1000-1200 mg a day. helps them to go away faster.
 
I take my muscle relaxer in the evening around 9 or 10pm. I don't think its causing the extra sleeping as much because I did this before I started taking the muscle relaxers. :p

I've had the mouth ulcers since I was a teenager too! I have tried EVERYTHING to help them, even the little canker covers. Nothing helps. I use kanka to numb them for eating and kissing, and I had a prescription mouthwash I use that my GI gave me (not the magic mouthwash, a really strong mouthwash for people with gingivitis). They still keep coming though! I'm hoping that when I get treatment (if it is Lupus) that these things will stop coming.
 
Flower, a spoon day is a reference to the Spoon Theory (there's a stickied thread in the Undiagnosed Club sub-forum with the link to the Spoon Theory - it's a short essay and a very good read if you haven't already read it!). Basically a day where you're just not able to do anything but sit on the couch or lay in bed. I've been playing The Sims and watching TV so far today and I might do a bit of crocheting in the evening. That's my spoon day. The good news is, it's helping - I've had a bit more d but nothing awful, and I feel less weak and a little better. I think taking a spoon day definitely helped me get on the mend and avoid a flare.
 
Carrie, thank you! All I'm 'excited' about with this pill cam is that since they are doing the upper endoscopy to push the pill to my stomach, I will get anesthesia and will be able to sleep and go away from the pain while they do it. then when I wake up I can HOPEFULLY sleep most of the day while the pill cam is taking a photo shoot and video of my intestines. that's prob the only good thing about this whole trip lol... :/ *sigh...

Cat, I'm glad you are feeling a little better, I hope you keep getting better as the day and night goes on. Maybe cuddle with your pup! :)

Allie, so sorry you have mouth ulcers!! Gosh, those are terrible :( I hope you can get something to help those a little faster. I wish you could share 'the good stuff' hahah, I need some sleep!!!

I am at the mayo clinic, and have the prep all day tomorrow. Then pill cam Thursday. I talked to the registration people at the mayo clinic today and they said that Friday I have an appointment with my doctor and he will go over the results of the pill cam on Friday! That's so fast to get results! So then hopefully Friday at the appointment he will let me know what the pill cam showed and then hoping for him to start mentioning treatment plans. I know he won't start me on anything on Friday, but maybe he will talk to me about all the treatment plans, and then let me talk about it with my parents, and make some decisions on which treatments to start on first. But, we will see, I'll keep you all updated on what's going on.
 
sunshine - good luck with your tests. and then hopefully you can do your treatments where you live instead of in jacksonville. anything they put you on you should be able to just have called in.
 
I'm doing somewhat better today. Still having some d and weakness, but feel like I'm on the mend. Also, I got some good news today. I probably do not have arthritis in my hip after all! My GI thought that I should get my hip arthritis diagnosed so that we would know if it was related to my IBD or not. So my GP sent me to an orthopedic surgeon (I would have rather gone to a rheumy). The ortho was awesome, though. I was afraid he'd say sugery and/or try to stick me with a shot of cortisone. He didn't do either - he took new x-rays, as he wanted to see if anything had changed in the 7 months since my GP initially diagnosed me with arthritis. He said that although one side of my hip looks ever so slightly different than the other, that could just be natural - he said humans aren't totally symmetrical. He said that if there is any arthritis, it's exceedingly mild, and based on where my pain is located (more to the outside of the hip) that it's most likely bursitis. He said that more physical therapy might help, specifically stretching, as the PT I've already had was focused on strengthening the hip, not stretching it. So I'm going to try to incorporate more yoga into my exercise routine and I'll go back to PT if it gets worse or doesn't improve. Since I "graduated" from PT (and my physical therapist is on maternity leave), I need a new referral to go back to PT, and the ortho doc said he'd be happy to write me a new referral if I want it. I'm going to try doing some stretches on my own for now - my physical therapist comes back in January, so if by then I'm not doing better on my own, I'll call the ortho guy and ask to go back to PT.

Sunshine, I'm so glad that they're going to look at your pill cam results immediately! I hope the prep goes okay today and I really hope you're able to get some sleep. Hopefully by Friday they'll know for sure the specifics of your Crohn's and can start you on treatment right away! Hang in there, not much longer to go now, and hopefully relief and sleep are just around the corner. I'll keep you in my thoughts and hope for some good news!
 
@Sunshine! Good luck :)

@Allie, sorry that your husband has to deploy, he is making a great sacrifice for his country.

@Dahl, your GI doc doesn't accept pres. I talked to the insurance and they won't cover it as a second opinion either! GRRR.
 
Good luck Sunshine, we will all be waiting with you!

I heard from Rheumy today, he still feels the bone marrow biopsy may be useful but is holding it as a reserve test, he wants to see where we get with the surgery for now. Which is fine.

Feeling crappy again today, the virus I had left with me alot of gunk in my tubes and my ears have been bothering me again. But I have gone on a nasal spray and decongestant tablets which should do the trick.

I am excited for Saturday to go over and see my Grandparents finally, signs are good that I will make it! Honestly am really not up to it and it will wipe me out after but i've learnt you just gotta find some energy for the important things no matter how impossible it seems.
 
Hi there,

I posted a thread yesterday called "Help. Could this be the beginning of Chron's?" in Undiagnosed Club. My issues have only started in the past year or so.

I received a phone call today from the gastrointerologist to come in to get looked at for IBD or Crohn's. I feel really overwhelmed. Soonest they could get me in is 3 weeks.

The symptoms I have been experiencing are:
anal leakage
bladder leakage
constipation (but not very often, mainly my stools are normal)
mucus in my stools, blood as well (from hemorrhoids)
exhaustion
swelling in my rectum after bowel movements that is so painful!
and now i am sure my hair is starting to fall out.

My primary care Dr is stumped because I do not have diarrhea.

I feel really hopeless. I was first told it was food allergies so I cut out everything. But no changes. I was then tested for Celiac -- came back negative.

Part of me feels like I have been dealing with this stuff for so long that maybe I am just imagining it now. :confused2:
 
Hi ruby, welcome to our big thread :ghug:

As I said in your other topic, blood tests for cealic are unreliable and the only way to know for sure is an upper endoscopy with biopsies. Also were you eating any gluten at the time of the tests? As if not, your body wouldn't be producing antibodies against gluten and the test result would be normal. Although as I said the bloods are unreliable anyway.

Have you had any scans, like CT or MRI? It sounds as though your problems are all in one area and a scan may be an idea to get an in-depth look. Hopefully the GI will sort you out. Be sure to come back and let us know how you got on.
 
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ruby- i don't have diarrhea either. there are people here who have constipation instead of diarrhea. my inflammation is only in my rectal/perianal area, ergo, i don't really have any upper abdominal pain or diarrhea.

mucus and blood are common in crohns, sorry to say. although it could be colitis. what kinds of tests are they doing? i assume a colonoscopy. if you haven't had one, don't worry. it's easy-peasy. the worst part is the prep.

good luck on your testing. we all hope you don't have crohn's, but if you do this is a great board with lots of good people.
 
Sunshine, I hope everything went well today! And I hope that tomorrow you get some solid answers and a good plan about how to proceed with treatment.

Hi Ruby, as Star said, the blood test for celiac is not very reliable at all. The "gold standard" for diagnosing celiac is to have an upper endoscopy with biopsies taken. But again, as Star said, you have to be eating gluten in your diet at the time, otherwise the biopsies will come back normal (even if you do actually have celiac, all the signs of it, even in biopsy form, go away and are not detectable if you have been gluten-free for a little while). As soon as you start eating gluten again, you'll get more accurate results.

It sounds like you've cut out most everything from your diet but are still having problems? If so, you should definitely be seen by a GI, I hope the one you end up with is good. As Flowergirl said, not all people with IBD (Crohn's or colitis) have diarrhea. Some people have constipation and some have normal stools but will get other symptoms like pain, fatigue, etc. Hopefully at your upcoming GI appointment you can get more information and some tests scheduled.

How's everybody else today? Allie, are you still hanging in there? May, did your gastritis or whatever it was finally clear up? Flowergirl, how's Remicade going? Dahl, how's the Budesonide treating you? Star, I'm glad to hear you are going to visit your grandparents - when you go, you might want to ask them about their health history and the health of their parents, if you don't already know that stuff. I learned a lot when I talked with my grandfather a little while ago, and found out he's got some digestive troubles too which I didn't know about. Unfortunately he never got his bowel issues diagnosed either, but it sounds like he's got some similar issues to mine.
 
Sooo, this morning I was supposed to have the endoscopy with the push of the pill cam. but they tried the sedating medicine and like 4 others, and none of them were letting the tube go down my throat, becase my refulx was so bad and wasn't relaxing so they could do it... so after 2 hours of them trying with different meds and stuff, I wake up from it all and they said they couldn't do it... they said they need me to come back and do the prep and everything AGAIN but this time when they do the endoscopy they need me to go to the hospital part of the mayo clinic and they have the bigger drugs and anesthesia that will completely knock me out so that they can get the pill down safely. So I bursted into tears after I woke up from that news, because I thought that was the last prep I was gonna have to do for a while... but turns out I gotta do it all over again. So the new plan is my appointment is Tuesday. Prep on Monday. and answers from doctor with results on Wednesday.
Can't believe I have to do that prep again... :( and I can't believe my body was being so stubborn and not letting them do what they needed to do. The nurses said that it isn't that common for the sedation meds to not work, but sometimes it does happen. and I guess I'm one of those few cases that it happened to, so on Tuesday they're gonna give me the big guns.
I'm home now. Just gonna have to live up the weekend because monday is my prep... :( ughhh. *sigh :(
OH by the way I was so dehydrated this morning that they had to prick me 4 times before getting the IV started in one of my veins. craziness and ouchie!
Just giving you guys an update! Thanks for being so supportive through all this.
 
Sunshine, honest to God, when I read your Facebook my heart dropped and I was so upset for you :( Hopefully with the proper drugs they can get it done. Try and think of a great meal as a treat for afterwards.

I've got another of my monster mouth ulcers, I can feel how gross it is, daren't look with the mirror! It's on my top jaw and has attached itself my gum and it's about 6 teeth in length, a tiny part has gone down onto one tooth, hoping to stop it getting any worse. Been hitting my remedy all day lol as it's even been throbbing, making me feel physically sick. Ick ick ick.

Cat, all 4 of my grandparents have been quizzed lol. One great aunt has colitis and one 3rd or 4th cousin (my grandad's great niece) around my age has Crohns. For the other side of the family, one or two cases of bowel cancer.
 
sunshine - you poor thing. i am so sorry. you just can't catch a break can you???:stinks:

remicade is going well. had my 2nd infusion on tuesday. went fine. i'm still doing well. getting less and less stool and discharge coming thru the fistula hole, so i'm assuming it's healing. just taking its sweet time. i figured it would take a while anyway. i'd rather it heal up the right way, and not like closing up the hole too quick and get an abscess or something.
 
Yes, poor you, Sunshine. I am so sorry that happened. Yet another strike against that doctor who "lost" your initial pillcam results.
 
Hi everyone, Sunshine, I'm so upset for you. I'm sorry you have to go through the prep again!

Star, I've had mouth ulcers since I was little. They are awful and I've suffered with them for many years. I've heard they were common in CD patients. I had a Dentist once tell me that they meant I was a genius since they were a form of virus that is activated under times of stress, and that it's my brain that causes them. I've always attributed them to tomatoes and citrus, so I don't eat that stuff, though it hasn't really stopped them. Anyway, I dab either mylanta or milk of magnesia right on top of the ulcer a couple times a day. It takes out some of the sting and helps them heal quicker, I swear by it.

Cat, I can't tell much if the Budesonide is working yet. I have a strange taste in my mouth, for the past few days. My food is hinted with burning plastic, no matter what I eat. Also, I can't figure out my body. I've been eating what I think are safe foods, and I might have one good stool every three days, and straight back to d. I've been working full time all week, and usually in the morning I'm in the bathroom for 20 mins, convinced I'm passing blood, or going to faint again, and always with a pounding headache. I'm always tempted to take another tramadol at this point, but I try to withhold. This is evil, no one should go through this every day and work with preschool children, it's just cruel.

On the upside, it's my anniversary today. My honey and I have been together for 6 years! We are so poor, since he's still looking for a job, that we can't do much, but we might take a drive and go to a museum this weekend if I feel up to it. The city is about 45 mins away, with plenty of rest stops on the way. It should be a nice day.

Space, Darn! I'm so sorry, that stinks. I hate insurance.
 
SunshineSmile said:
Sooo, this morning I was supposed to have the endoscopy with the push of the pill cam. but they tried the sedating medicine and like 4 others, and none of them were letting the tube go down my throat, becase my refulx was so bad and wasn't relaxing so they could do it... so after 2 hours of them trying with different meds and stuff, I wake up from it all and they said they couldn't do it... they said they need me to come back and do the prep and everything AGAIN but this time when they do the endoscopy they need me to go to the hospital part of the mayo clinic and they have the bigger drugs and anesthesia that will completely knock me out so that they can get the pill down safely. So I bursted into tears after I woke up from that news, because I thought that was the last prep I was gonna have to do for a while... but turns out I gotta do it all over again. So the new plan is my appointment is Tuesday. Prep on Monday. and answers from doctor with results on Wednesday.
Can't believe I have to do that prep again... :( and I can't believe my body was being so stubborn and not letting them do what they needed to do. The nurses said that it isn't that common for the sedation meds to not work, but sometimes it does happen. and I guess I'm one of those few cases that it happened to, so on Tuesday they're gonna give me the big guns.
I'm home now. Just gonna have to live up the weekend because monday is my prep... :( ughhh. *sigh :(
OH by the way I was so dehydrated this morning that they had to prick me 4 times before getting the IV started in one of my veins. craziness and ouchie!
Just giving you guys an update! Thanks for being so supportive through all this.
Click to expand...

@Sunshine, we can be pillcam buddies as I have my second pillcam on wednesday so prep tuesday. No painkillers 7 days before as they are opiates so slow the gut down...ouch, that bit is hard already. Not looking forward to 2litres of prep, I'm not convinced it will stay down but we will see. I am staying over at a local motel as I have to be there at 8.30 and I am not travelling a longdistance mid prep!
My last pillcam took 4 weeks to get the results as the doc was on hols but this time they have said 24-48 hours for results. Fingers crossed for us both that they can see the problem.
 
Sunshine, that's just awful. It seems like it's taking so long and with so much prep/pain involved just to confirm your diagnosis. I really hope they are able to get it right next week. Third try's the charm, right?

Little Miss H, sorry to hear you have to do prep & pill cam too! How is your leg doing, are you all healed up? I hope things go as smoothly as possible (which is never too smoothly when prep is involved) and that the pill cam doesn't find anything too awful. You're already diagnosed so for you no news is good news, right? Thanks for checking in on us. :)

Dahl, I hope the Budesonide kicks in soon and that what you're experiencing isn't side effects. I did get chronic headaches as a side effect when I was on Entocort, but 25 mg of Amitriptyline stopped that in its tracks. I think the common side effects of Entocort are things like headache and nausea, I am not aware of it affecting the way food tastes. If it continues, please do mention it to your doctor.

Flower, I'm so glad to hear that Remicade is working for you, and I hope it continues to work for a very long time! Glad to hear that the fistula is starting to heal too, that's excellent. Are your symptoms starting to ease too?

I'm doing better today, bowels have gone back to normal, no more d or nausea thankfully. I still have this cold though and have been congested and coughing. I didn't go to the gym on Wednesday because I was feeling awful then, so I've been thrown off my regular exercise schedule. I'm going to attempt to work out today, wish me luck!
 
Thank you everyone for the thoughts and concerns. Like Cat said, "Third try's the charm!" hopefully!

Still can't believe that happened, but oh well, just gotta keep looking forward and get ready for the prep and everything this week. Little Miss H, that's crazy that we both have our pill cams this week. Maybe that'll be good luck for us! We can get through it together! There is strength in numbers, right?! :)
 
Sunshine, at least you don't have to wait too long for this third pill cam attempt. Do you always react like that to sedation or was it just this time? It's amazing how little some doctors know about sedation or how much to give. When we thought our hedgehog might be sick, we took him to the veterinary teaching hospital (our regular vet is clueless about exotics like hedgies). They had to sedate our hedgie to examine him, but even they didn't know how much sedation to give a hedgie! So they gave him enough sedation to knock out a guinea pig, and he woke right back up. Then they gave him enough to knock out a ferret, but again he woke right back up. Same when they gave him the rabbit dosage. He's way smaller than a rabbit so that was kind of scary, but once again he was out for a second and then was instantly awake again. Finally they realized they just couldn't sedate him properly and they put him under anesthesia and that worked. Poor little guy (fortunately he ended up being fine, but I'm sure the multiple sedations weren't pleasant for him). So, I've been through something similar with a pet - it sounds like they came to the same conclusion for you too, anesthesia. I hope that works for you! It worked for my hedgehog. :)

I spoke too soon earlier. I said I was feeling better. Well, I went to the gym this afternoon, and now I feel crappy again! Bowels are angry and the d is back, and my cold feels much worse now too. Can an hour of exercise make my immune system so angry so quickly? Sheesh! I felt great while I was exercising, I didn't cough once and my guts felt fine. But now a couple hours later I feel yucky. I was going to do some yoga over the weekend, but at this rate I'll be lucky if I can even walk the dog. I think I'll be resting as much as I can! Yuck! I hope everyone else is doing okay and has a good weekend.
 
haha awww Cat that's so sad about your hedgie! :( Poor little guy... I love animals, so that's just gotta be so hard on you to watch your little guy go through that. Yeah, I don't remember being up at all when they put me under sedation, but they told my mom that I kept moving around just like your hedgehog. They said they gave me a pretty good amount of sedation, but it just wasn't working. They said they tried many times, but it just wasn't working. :( At least they know now, and that they know using anesthesia will work, because I've been under anesthesia many times and it always works. So that's the good news... that this third attempt should work and be fine. Just upset I have to go through this nasty prep again and all the pain. :( This little pill better show those doctors what they need to know, because I can't keep going through a million tests. I'm just getting worse and worse with no treatments and no pain meds to hold me over. Going to keep staying positive and just try to think good thoughts. because in the end, this pill cam will only help me get treatment and help know more info about my crohn's disease. So in the end, it's just better for me. Gotta keep thinking that. It's hard, but I have to try to get through this the best that I can.

Hope you feel a little better as the night goes on Cat. :( That happens to me when I exercise, I feel find, but then after I just get a tummy ache and feel terrible. Hope your gastritis is doing okay, I know that can flare up a little when exercising and such. *hugs
 
I'm reading. I'm sorry I'm not responding, but I'm thinking of you guys (seriously! I think about you all the time.) My period came like 4-5 days early with a vengence. I can't stop making huuuge moaning noises, it's ridiculous. I couldn't find the mini-vents thread, and I'm in too much pain to keep looking. I tried to eat homemade pizza, but that sent my body off into insanity. I don't know about you, but when my period causes me to cramp, my bowels go, "OH HEY, WE WANNA COME TO THE PARTY" :stinks: so now everything is cramping, the D has started, but it's one of those times where I'm probably fairly full of poop so the absolute pain of the cramps and pressure from above pushing on the stuff below it.... ugh. i feel so whiny, I am, it hurts so much. I really really would like to go into menopause and be done with it.

in other news, I've been making paper flowers. origami lotus flowers, construction paper layered flowers, and new today - quilling flowers! I think the quilling flowers are my favorites. (here's a link if you wonder what quilling is: http://www.giveneyestosee.com/m/creative/quilling.html)
 
Carrie, oh gosh! I know how you feel! Having your period and D is terrible! I'm due for mine soon too, and I think it's going to come on Monday which is the day of my prep!!! :( but anyway, hope it lightens up a bit for you so you can feel a little bit better. *hugs
 
@Cat,
I am having this done to decide what next. Had a lot of melaena neeeding lots of transfusions etc.I'm not sure what I want him to see! Diagnosed on pill cam - highly suspicious of crohn's. I have no histological diagnosis. If major bleeding point he said I may need op, if lots inflammation then Humira; if something 'nasty' - don't want to think about that but he is worried about this due to the amount of blood loss.
I did ask what if all looks fine as I am on aza and pred 30mg at moment. I have a fear all meds will be stopped like so many on here if nothing seen even if previous diagnosis. He said lots will be masked and the only way to get true picture would be to stop all meds and then repeat 'but that would be cruel'...thank goodness. If all clear I think it would be gradual pred taper and increase aza when my white count improves.

@sunshine, I will be thinking of you next week. I was lucky for my first as a different hospital which didn't require prep at all. But this hospital couldn't do til early november so he wanted done earlier at a hospital which does require prep. i'm not enjoying the no painkillers though...

For all you with period issues...get a mirena coil!
 
Sunshine, I am so sorry you have to try again. :( That just breaks my heart!!

I've been in bed the past two days straight. o_O I'm running a fever so I feel extra crappy. After goat night ended I walked from the student center to our house, crying because it was really hard to get through the event because I wasn't feeling well. I've been in bed ever since. >.<

What really sucks is my Rheumy called yesterday with my blood test results, but my phone was on silent and I caught it too late. The voicemail said to not call back that day because they were closing and to call Monday. :( They told me they weren't even going to call me with the results, so I'm wondering if I tested positive for Lupus. I wish I didn't have to wait!

Hope everyone is having a good weekend!
 
yay, allie! I put you in my circle :) I really need to set up my store soon. I need to charge my camera and take some pictures!

I'm doing ok right now with the cramps and D, but it did wake me up twice in the middle of the night. sucks. I slept part of the day today which seems to be my Saturday activity each week.

Biggest thing annoying me right now is that my left thumb/part of arm are numb/sore. Of course, I'm not supposed to take NSAIDS, but this is really annoying. I took an advil earlier, and I'll take another one with dinner. I hope it goes away so I don't need to get another EMG. I did the pin prick test just to see if I was over-reacting.. nope. I bet it's from using my scissors too much when I was making the other kind of flowers.

I really hope this last one is the trick for you, Sunshine. I can't even imagine what you have to be feeling :( :ghug:

I hope everyone is else is doing ok today. Thanks for the commiseration with the evil period! :)
 
Uggghhh. This cold is still miserable. I didn't think exercise would do this! Or maybe it's just coincidence? I don't have a fever but I do have chills and am achey. My guts are mostly behaving themselves again and I hope that lasts. But the worst part is, my throat is so sore that the pain woke me this morning. I've been sucking on losenges and taking Dayquil all day but have gotten little relief. I promised my bestie that I'd go with her to her wedding dress fitting, and I did go but I was so out of it. I feel all spacey and loopy (I felt like that before loading up on Dayquil so it seems the cold has moved into my head). I wanted to accomplish so much today, and all I did besides the fitting was play the Sims. I was going to do so much work on the Halloween costumes, but a whole day is gone now with nothing achieved. I hate that even more than being ill!

I hope everyone else is doing better. Sunshine, I saw on Facebook that you finally got to go to the zoo and see the giraffes! Good for you, I hope it was wonderful.

Allie, I hope those blood work results show something so that you can finally get out of this awful pain! I guess you and I are the spoonies today. I did see the link to your Etsy shop, very cool and I hope your blankets sell like hotcakes!

Carrie, I absolutely get worse cramping, d, etc when I'm on my time of the month. Mine's coming in a few days and I REALLY hope this cold is over with by then because I don't know if I can handle both at once.

Little Miss H, whatever the outcome of your pill cam, I hope you can get some relief and stop bleeding. It sounds horrible to have so many transfusions in such a short period of time. I'm not sure what a mirena coil is? Is that an IUD? If so, I believe that here in the US they don't really give them to women who have yet to have children and/or are still in their young child-bearing years. Personally I'm on Nuva ring and I've noticed a bit of improvement in my monthly "gift" both when I stopped taking the Pill, and when I got into remission. But my periods are still kind of painful and bad.

I hope I didn't forget anyone. This cold makes my head all goofy. I hope everyone's doing better than I am.
 
Crap. Remember when I said I don't have a fever? Yeah, so I've got one now. It's not too bad, 99.1, but my usual temp is in the mid 97s so even being a "normal" 98.6 would be a fever for me. If it sticks around tomorrow I'm going to go to urgent care. Hubby thinks I've got some sort of infection because it's not my guts causing this. Ugghhh. I tried to sleep but couldn't turn my brain off so I'm going to sit up at the computer for awhile instead. At least I'm not shivering anymore - when I was lying in bed, I had my electric blanket cranked up to 8 (the highest it goes is 10) which would normally make me uncomfortably too warm, but it felt just right with my fever. Blah. Stupid broken immune system.
 
Hi everyone! I have recently joined the club. For the full scoop, here is my thread from earlier this week.

I took some time tonight to get up to date with the recent happenings in this thread. I've got to be honest, I haven't visited the Undiagnosed Club too much in the past, because I thought I had my diagnosis. Also, I spend a lot of time in the My Story forum and don't leave enough time for much else. But I will be visiting with you guys much more frequently if you don't mind. It's kind of nice to know others are in the same boat as me, though it sure is a crappy boat to be in...
 
Goodness, everyone is just in so much pain these last few days... poor us! :( At least we all have each other to vent to and understand what we are all going through.

I went to the zoo today and it was sooo wonderful. except that I didn't sleep AT ALL last night so I was very exhausted after we were done with the zoo, but I was so happy I was able to make it there! :) When I got home, the tummy issues started kicking in again. and now I'm in my room with the heating pad on my tummy and just trying to relax but these cramps are killer. and i think i'm getting my period soon, and OF COURSE I think it's going to wait to start until Monday which is my prep day... this always happens. Gosh, I'm still shocked that I have to do this all over again... Last time I did the prep I was sitting in the hotel room crying but thinking to myself, it's okay this is the last time I have to do this for a while... and little did I know I'd have to do it again the next week. ughh. Just hope everything goes well this time... It's getting really difficult to be getting worse and worse and be getting no help, just pain. I wish you all could be there with me in the hotel room with me to talk with me when I'm in pain. It's so hard to have my mom sleeping, but I'm up ALL night in pain with no one to talk to and just feel like total crap. And i have a quiz I have to take for my online class in school on monday... Prep, quiz, pain, and period? oh my goodness, I'm gonna need a miracle! hahaha :p but atleast i got to see my wonderful and beautiful giraffes today :) that makes me smile everytime I look at the pictures and remember the memories!

Cat, I hope your fever goes down! I hate fevers :( I always get "fever-ish" feelings when I do my prep, because my immune system freaks out when I do prep and basically puts me in a flare... which is ridiculous. I like to put a cold wash cloth on my forehead. That really soothes me and makes my head feel a little better (especially when I can't take anything for a headache or anything during preps).

Carrie, that makes me so sad to hear that you are having that soreness. :( It's not fair that you are trying to do something that is fun and that makes you happy, but then it only hurts you after... :( Keep us posted on how the joint pain is, hope it lightens up soon.

Allie, I hope that you get some answers from the doctors office on monday when you call them back! That's weird that they told you that they weren't going to call you about results but then did anyway... but that could be a good thing. keep us posted! I can totally relate to you going out and then getting so much pain on your way home :( you poor thing. The other night the same thing happened to me. I was out with my boyfriend and then all of a sudden got really nauseous and light headed and felt terrible. Had to go home :( I really wish we all lived in the same city or something so we could all just have weekly meetings in person! That would be such a relief!

Little Miss H, I really hope that you are ok! I hope that you don't need to get operation or anything yet. and I hope you haven't lost too much blood as well! :( I will be thinking of you this week!! Seems like your doctor is very knowledgeable though, he's trying to definitely figure out what's happening and seems concerned, what a concept! :p If you need to vent during your prep or anything on here, don't feel bad or anything, because I'm going to be in a lot of pain just like you are, so we can vent together and get through this. We just gotta get through this stupid prep! We can do it!
 

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