Undiagnosed Club Support Group

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

Thanks peeps.
@cat - a mirena coil is a like a coil but with a small amount of hormone in it. Works only locally so minimal side effects. The good things is that in most people it stops periods or you have very light infrequent ones! Your fertility returns as soon as taken out.
It is mainly used in those who have had children but also those with heavy or painful periods and can be put in if you have never had children. It is now recommended as contraception of choice in the UK. In for 5 years and then a new one.
No good if you are trying for children...I doubt anyone in the undiagnosed club is doing that right now!

Allie, I hope you get some results on monday that help you on your 'diagnostic journey".

Sunshine,Thanks. I too am hoping no ops needed. Get my blood count checked again tomorrow and really hoping it is reasonable. We have agreed no blood if my haemoglobin levels remains above 80. Before this 'flare' (not yet achieved remission but was doing much better) it was 142 and should be above 110. Its much easier to cope at work when it is a bit higher.
You are right, my doctor is really kind and although I was cross with him for making me have more tests (also mri or ct to make sure no tumours outside the gut...fright..) I can understand why he needs them doing. !Its not normal to be bleeding quite so much. (I think he must be sick of the sight of me as he is asking to see him 2 weekly...even the receptionist laughed at me and said to me to 'take my normal seat'!)
It would be so much better if this disease was in scopeable areas wouldn't it!!

Jill, I can completely understand your frustration. You don't want to have ibd but don't want to have the diagnosis and treatment taken away if you do because then you may get sick again. On the positive side at least you are aware of the relevant symptoms and both you and your GI will act early in the event of recurrence(hopefully not). This would mean treatment early before you are more unwell.

And for everyone else, I hope you are having a good day.
 
Phew, my fever's gone (96.4 when I checked it this morning, which is slightly lower than normal for me, but I'm happy with that) and I'm feeling much better today. I hacked up quite a bit of mucus during the night so my lungs and throat feel better with all that out, even though it was pretty gross waking up to expel a glob of snot every so often! I'm hoping to get a lot of work done on our Halloween costumes today - wish me luck!!

Jill, you are absolutely welcome to spend as much time in here as you need/want! Unfortunately, the more time you spend in this club, the more you realize just how many people are ill with no answers and really struggling. I swear we get new club members every day and that makes me so sad. Your story makes me really upset and frustrated too - I still can't believe that a diagnosis can be taken away so easily like that. No matter what happens, we're here to support you through it. How are you doing lately? Have you started on the Rifamaxin yet?

Sunshine, I hope the prep goes as smoothly as it can with as minimal pain as possible. And I really REALLY hope that this finally confirms things and that you don't have to do prep for a very long time after this! Hang in there, hopefully you're finally getting to the finish line of this leg of your journey and you can start a new journey soon where you're diagnosed and getting treatment. Fingers crossed for you!

Little Miss H, actually I've been going back and forth on the idea of having children. I know I'm undiagnosed, but I'm pretty much in remission and both my GP and GI have said I've got IBD, I'm just not fully diagnosed as to what type of IBD it is. I'm nearly 32 so the clock is ticking a little bit. I know my hubby wants kids but I've always been on the fence. I keep thinking things like, do I really want to create another human, one who I have to love but I may not end up liking? A person that I will worry about forever, and one who will exhaust me mentally, physically and financially? Do I want to risk worsening/flaring up my IBD again just to get fat and barf for 9 months and then have a totally helpless tiny human who needs 24/7 care? And, do I want to risk passing along these crappy IBD genes to another generation? Is it all really worth it? I don't know. I really don't. I've been married for over 9 years now and we still haven't had kids yet because I can't get off the fence and decide whether or not I actually want to, and the past 2 years have thrown IBD into the mix and made me even more leary of the whole idea. I keep trying to think of the positives, like if I have a good kid they'll hopefully take care of me in my flares and/or old age. Or maybe they'd just stick me in a home. And then I think that I'm too skeptical and cynical for my own good sometimes. I'm probably way overthinking things but that's my style.
 
I made it to my grandparents yesterday and had a great time. Paying for it now of course. It was so great going door to door- people with cars really have no idea how lucky they are!! Before it was walk, bus, train, taxi, and then the same going back. As there is no public transport from their station, and few taxis, so they were always late, eating into the time we could spend there. There is a direct bus but it takes 45 minutes. I could not do that with the ME even when I didn't have any other problems, and certainly couldn't after the tummy trouble hit! We went door to door as Grandad paid for taxis (since last time Mum went by herself on the bus, he said it wasn't fair I had to miss out). But it is alot of money and I would not want to take that very often, and can't afford to pay that much ourselves.

Have to say I got the impression the mirena coil was the old fashioned bc method here in the UK, they are really pushing the implant these days which is inserted into the arm. But every friend I know who got one has had nothing but issues! And i've been on the Pill for yonks so i'm not exactly up to date lol.

Surgery consult still seems ages away :( Think I was right when I said I would not have the op before xmas, which I was hoping to be wrong of course.

Looks like another boring xmas, can't even have a nice dinner again and no buses for over 2 days before I can sale shop! Which is the only time of the year I shop for fun.

I am 25 in March too- haven't been able to celebrate for the last 2 years and unsure what i'll be like this time. As much as I want to believe this op will the test which gives me a dx, I have been in that position so many times, for so long, that I really have lost all faith, apart from my more optimistic moods which are few and far between. At the moment I am looking at postponing any celebration until the summer I think. I'd love a party as i've never had a birthday party, but the reasons, no money, still apply, so I don't think I can have one, you know a proper party with hiring somewhere, dj/disco, bar etc. Although, thinking about it, being at my Birthday, alone, surrounded by couples isn't my idea of a good time (I beg you, please don't say I will meet someone/ it will happen!), since my friends are all in relationships. I didn't meet anyone when I could go out occasionaly; now that is a dead end haha since I don't go out socially and lucky to leave the house once a week for essential errands.

Certainly if the Laprascopy doesn't lead anywhere I had already settled on making a decison about the immuno suppressant trial early next year, assuming my Rheumy would still be willing that is. All the negatives still apply but God knows I cannot bear being in this state much longer.

Sunshine, good luck with hopefully your last prep.

Allie, hope you get the blood test results soon :)

Cat, I don't think you are over-analyzing at all, too many people rush into having kids and put their want for them above the needs of the possible children. When you're sick, you have to think even harder. I know for myself I want them very much, but looking at the big picture it would not be good for them, so I probably won't. Plenty of time to change my mind but it's very unlikely.
 
Last edited:
Thank you for all the warm welcomes.

I can't believe how many members we have in the undiagnosed club! But I guess I shouldn't be surprised. I welcome so many new members in the My Story forum who are still searching for answers. And you know what gets my goat - so many clearly have IBD! It's amazing!

@Cat - I am on day four of stopping Lialda and taking Rifamaxin. I can't say I have seen any improvement yet. I have always varied from day to day. I felt pretty good on Friday, had a good amount of abdominal pain yesterday, but less pain today. However, my BM's are more solid. Let's wait and see...
 
xjill - i still hang around and i'm diagnosed. lol

cat- i understand about the kids. we waited 8 years to have ours. and even when i got pregnant i was still kind of freaked out about it. all i'll say is that it's different when you have your own. i was never a kid person, but i do like my kid. they are work, and some days are better than others, but that's sort of true about life anyway. the first year is the hardest. they get easier as they go. having said that, 1 is enough for me! he's 3 now. he's a handful, but so is my husband. that whole gene thing... they are the sweetest boys though! :)
 
Jill, I'm so sorry you had to join us here. I cannot believe your diagnosis was taken away from you. :( I hope everything gets figured out soon.

Today is another bad day over here! I've been running a fever for the past three days and its taken it out of me. :( I did go get a new ipod touch today which is exciting. Yay music and games! I was glad to get home though. My best friend is taking me back out though, she works at micheals and wants to get me my next set of yarn with her discount, which is 50% off. Kind of exciting too, but I can't wait until I can just sit for the rest of the day....
 
Yeah, its a special weekend for them. I ended up not using her discount because all I got was on sale, but I still got an amazing deal. first it was on sale for 3.49 when I usually buy it for 3.72 (at walmart, not micheals)....and on top of that I got everything 25% off for 2.62 a skein! So these two blankets coming up are $7 cheaper than the others, so thats 7 more dollars that is profit. Yay!

I just finished a blanket tonight that I am so very proud of. :) Its soft pink with a light green border and light green embroidered flowers! I'm using it right now to test it out and it is soooo soft and warm...I kind of want to keep it for myself lol. I'm happy I made one for Stuart so I can use it when I get back to Germany. :p If you want to look at it heres the link (if it doesn't show up its on my Facebook too):
http://www.etsy.com/listing/84526167/beautiful-afghan-throw-in-soft-pink-with
 
That's really pretty, Allie. Hope you hear something today from the rheumy. You just have to call them back to get the message, right? In any case, hope you get news which leads to treatment.
 
Off to the doctors again today. Hopefully she will run more test, funny how I am requesting that...I hate the doctors...lol! But I hate more the fact that I just feel crappy all the time.:ybatty:

Anyways, if I don't like what she has to say then I might try a different GI. I'll keep you posted. Have a great day everyone!
 
I don't remember the last time I was this excited or happy....

They called back because I am ANA positive, meaning I have something autoimmune, most likely Lupus. They want me to come in on my own time in the next week for more testing.

WE HAVE FINALLY FOUND THE ANSWER!!!!

:dance: :dance: :dance:
 
Woo hoo Allie! Congrats!!!!! I am SO glad that they FINALLY found something! :D Hopefully this means you can get some treatment ASAP and get to feeling better already! Do you know what other tests they're going to do?
 
They didn't tell me what tests they are running, but they said they were tests to narrow down whats wrong. I read on a lupus site that they can pinpoint why you have a positive ANA and it helps determine whats wrong.

To get diagnosed with Lupus you have to have atleast 4 of the 11 criteria, and I have 5 at this point. o_O http://www.thelupussite.com/dxlupus.html
 
Oh Allie, I hope they figure it out. It must be so great to feel like you are making progress. If nothing else hopefully they will be able to treat you for the cause and not the effects :)
 
Wow, I read that link you posted - very interesting. I definitely don't fit the criteria for Lupus - I don't even fit the arthritis one anymore since that diagnosis was recently taken away. Interestingly enough, I just joined a website through my doctors' offices where I can see all my lab results online. I didn't realize it, but apparently my GP had run my ANA back in March (he ran a few blood tests back then but I hadn't realized that ANA was one of them). Mine was negative. I think it's usually negative with IBD though (?).

So when are you getting the other blood tests done? I'll be thinking of you and hoping for some solid answers!
 
I'm going to go ahead and go in tomorrow morning and get it over with. The sooner I do it the sooner the tests can come back to give me a solid diagnosis. My Rheumy said if my ANA was positive he was diagnosing Lupus and starting treatment, so hopefully he will stick with that and get me started on meds. I'm so freaking happy to say this...I KNOW WHATS WRONG!!!! :D :dance:

I think you are right, IBD does not give a positive ANA. For IBD they look at CRP, and for Lupus they look at ANA (CRP is 0 for Lupus...isn't that interesting?). I wish someone had tested me for ANA at the beginning...a lot of the horrid mess would have never happened...

That really sucks that they took the diagnosis of arthritis away. :(
 
All the best Allie, great to hear that you're finally on the road to some kind of relevant treatment. Let's hope that whatever the outcome is, it happens quickly and with as little stress as possible for you. Good luck with everything.
 
yay allie!!!! i mean, it stinks that it's lupus, but it's great that you finally have an answer!!! once you get treatment you'll be great!

my mom has a host of autoimmunes, lupus being one of them, and she's doing much better now that they know everything that's wrong.
 
That makes sense, further proof for me that I've got IBD, since I've got negative ANA and have had slightly raised CRP at times. Is ANA positive if you've got rheumatoid arthritis? Back in March is when my GP had tested my ANA, and I believe March was when I had gone to him and gotten the arthritis diagnosis in the first place. So perhaps he was looking for RA?

It's not a bad thing that my arthritis dx was taken away. I've been told by an orthopedic surgeon that it's actually bursitis (inflammation of the fluid filled sac around the joint), which makes sense as my pain has never been down in the joint itself but more off to the side of the hip. It's good news because it means my joint isn't degenerating or anything like that. I may have to go back to physical therapy - the PT for arthritis is strengthening exercises, which I've been doing, and the PT for bursitis is stretching. So I'm going to try some stretches on my own and I'll go back to PT in 2012 if need be.
 
Yeah, RA gives you a positive ANA. They tested me for RA in different ways as well, and they didn't say that it came back positive.

I really don't know how to explain it well, lol, here is what I read: http://www.thelupussite.com/ana.html.

I'm not happy that it's lupus per say of course, but I am so excited that something has come back showing that this IS NOT all in my head. Every normal test just brought me more and more down. Finally, here is proof of why I am so ill. I am so happy that soon I will be able to say "I have lupus, that is why I can't do XXX" instead of "I'm in the middle of being diagnosed with a chronic illness, I can't do XXX"...I felt like a complete loser. I felt like a lazy liar. The guilt of taking narcotic pains meds, of resting all the time, etc and not knowing if I'm really sick is really unbearable. I'm sure you guys understand. Today some of that guilt has lifted, and when I get my official diagnosis the entire amount of guilt will be lifted.

I have so many questions for my Rheumy about lifestyle changes. Obviously my lifestyle changed when I became sick, but I want advice on how to deal with the illness now that know its this. I especially want to ask about a handicapped tag. I know I don't need it for a wheelchair or an obvious handicap, but on my bad days my pain is so bad its hard to walk. I know lupus qualifies for one, so I would really like to have one for the really bad days. I feel guilty for saying that, but I know I shouldn't feel guilty. I believe invisible illnesses qualify too. Other than that I just hope he can suggest ways to keep my quality of life as high as possible. Maybe after treatment I will be healthy enough to even have a full time job! O.O

I have been sick for 7 years....7 years of not knowing...finally we are going the right direction!!!!
 
Allie, I'm not sure if the laws vary state by state, but I know that here in WI it's very easy to get a handicapped tag for your car. I had a friend in school who was born with a birth defect. She has no fingers on her left hand and uses a prosthesis. That hasn't affected her ability to do anything though. She ties her own shoes, does her own hair, types and plays video games, etc with five fingers and a prosthesis. So when she got her drivers license, they tried to give her a handicapped tag! She said no thanks, my ability to walk isn't impeded whatsoever. They tried to force her to take it! She had to say no several times. So if it's like that where you are, I would think that you'd be able to get a handicapped tag no problem.

You shouldn't feel guilty about not being able to do things, regardless of having a diagnosis or not. You *know* you're ill and you *know* it's not all in your head! You knew that even before the ANA came back positive. I know these sorority girls have put some pressure on you lately to do things, but you shouldn't feel guilty about not being able to do them. I feel really bad when I can't do things, like mad at my body for being such a sick jerk, but I don't feel guilty. I know I'm ill and I know what I can handle at any given time. You shouldn't feel guilty either. Although it would be pretty sweet revenge to wave a proper diagnosis in the faces of those sorority girls who were mean to you. ;)

So you go in tomorrow for the other blood work - do you think you'll get the results back this same week? Just think, by Halloween you could potentially be fully diagnosed, started on pred (or whatever other treatment) and be on the road to feeling better again! How exciting! :D
 
Allie I am SOOOOOOO HAPPY FOR YOU! I know it's not good that you have Lupus, but at least you KNOW now what is making you so sick!! :) Ahhhh! So happy for you with relief that you know what's wrong. Gosh that's great Allie!! :) keep us updated!!!

Prep started today. Ughhhh. :( my appointment to get anesthesia with endoscopy to push the pill down isn't until 9am tomorrow. Ahh. Its hard enough waiting for 6am, now I gotta wait 3 more hours. After not sleeping I'm sure at all tonight. I never can sleep when I do preps. :( I brought lots of christmas movies and nail polish though. So I'll have somethings to do. And I still haven't gotten my period yet. I wonder if I'm late because of all the stress my body has been through. The doctor said if I get my period today I'm NOT allowed to take anything for it because I'm on the prep which doesn't surprise me but I'm just tired of everyone never letting me take Meds when I don't feel well. :( I feel like I'm the only one that is dealing with excruciating pain and not been given anything while they are trying to figure what's going on. So frustrating. Oh well. This test better go the way it's suppose to tomorrow. And Wednesday I better have a final diagnosis or I'm going to cry. :'(

*hugs to everyone!
 
Wow, that's interesting that they tried to shove it in her face! I have done some research and it shouldn't be too hard, I would just have to get a form signed by my Rheumy then take it to the DMV. Walking makes my pain much worse. Walking from the sorority house to class is SO hard, sometimes I drive to the parking deck, which only cuts the walk in half, but it takes out a bunch of stairs. On the bad days I would love to be able to have it just in case I need to go do something and the pain is so bad I'm limping.

I know I shouldn't feel guilty. I do because I use to be a workaholic, and I guess that part of me hates my body, the sick jerk. :p That part of me is like "no, keep going, we need to work!" So when I don't guilt sets in. I'm trying to get out of that.

The sorority sister that yelled at me was actually in the living room this morning when I came out of my room jumping around telling everyone my news. She hugged me and had a huge smile on her face. We were able to get over what happened, and shes happy for me. :) Everywhere you go they say people with Lupus can't do as much as normal people...so there! :p

Ha ha I wish that could happen. I doubt they will officially diagnose me before my next Rheumy appt, which is November 10th. It would be nice if they would get things started before then!
 
Sunshine, good luck with the prep and pill cam do-over. Have fun with your nail polish too. :) I love to paint my nails, and I'm sure I've probably told you this already, but for the longest time whenever I had to go to the doctor or pharmacy or have another test done, I'd buy myself nail polish as a little "cheer myself up" treat. (Side note - do you watch Parks and Rec? They had an episode where two of the characters had a "Treat Yourself" day and they kept saying "Treat yo self!" I think of that now when I think of my nail polish addiction!) So yeah, I have waaaaaayyyy too much nail polish now. ;) Anyway, have fun with the nail polish, I hope the prep isn't horrible, and I hope you are able to sleep at least a little bit. Best of luck tomorrow!

Allie, I hope you don't have to wait until the 10th to get diagnosed. Still, I guess that's not too far off. It just seems sucky to make you wait just a little longer though. It seems like you and Sunshine in particular are both so very close to a diagnosis but yet just have to wait a little bit longer. The anticipation is driving me nuts so I'm sure it's not easy on you two!
 
I know you won't take this the wrong way allie but I am so pleased for you :) Do you know what they want to do next yet? I really hope this is nearly the end for you :hug:

Sadly my ANA always comes back normal as far as I know, they do mine every few months. And they did a bunch of other Lupus bloods which had to be sent to another lab they were so specialised.

Still, hopefully my surgery will find something. If not I am pretty sure that will be the end of searching for an answer for me. Since I figure if they can't find anything then, I will take the immuno-suppressants trial (will beg Rheumy to have it as not sure if he still wants me to try) as I don't see how another test would find anything if that one doesn't. I mean, if biopsies from all around where I am having problems and a very close look at my insides can't dx me, what can. And I can't take much more. Unless they would put me near the front of the queue for more tests, which won't happen. So either way things will be resolved for me soon I think. Assuming the drug trial works. If it doesn't then don't know what on earth I will do.

Allie, I am sorry to write all this when you must be so relieved. Been a rough couple of days and it all had to come out lol...
 
Last edited:
@Cat - How's the fever today? Any better?

@Allie - I am glad you got some answers today, but I am sorry that it is looking like you may have Lupus. Like everyone else has said, I hope you can start appropriate treatment and start to feel better soon.

@Sunshine - Good luck with your prep and tests tomorrow. Let us know how it goes!

@Star - I hope immuno-suppressants do the trick for you. How soon do you think you may be able to start taking them?
 
Star, there is no reason to apologize! Goodness. :p I hope the immuno trial helps. If it does you would be closer to a diagnosis!
 
Jill, thanks for asking - my fever fortunately only lasted maybe 4 or 5 hours. I've still got a nasty cold (still coughing up mucus and some of it's bloody - yuck!) but I'm feeling a lot better than I was.

Star, if you end up doing the immuno-supressant trial, like Allie said it could get you a step closer to diagnosis if you end up responding well to it. Just like how my doctors started taking me a lot more seriously after I responded well to pred. I'm assuming that the immuno-suppressant in question only works on certain illnesses? So if it worked, at least you could narrow it down and say it's definitely got to be one of these and you could essentially rule everything else out. After I responded to pred my GI put me on Entocort, which also worked well, at which time he started saying it's probably either Crohn's or microscopic colitis (Entocort works on both of those illnesses and pretty much nothing else). So just my two cents, it's definitely not a bad idea to be a bit of a guinea pig and try out some meds to see what works and what doesn't. So far I'm 3 for 3 on IBD meds and none of the IBS meds work for me, and I think that says a lot to both myself and my doctors about what's going on in my body!
 
I have no idea when, Rheumy suggested it if a test (I was denied funding for it anyway) didn't show up anything, before the other set of inflammation tests came back abnormal, and then they decided on the Laprascopy/ surgery direction. Surgery consult is 11/11 and I don't think I will get the test before xmas. Have to see how that goes first, if something, anything comes up on that I will have to follow it through. But if it is another normal test I am done and will beg for the trial, unless they want to do anything else (bone marrow biopsy is currently the stand by test) in a very timely manner.

But I have really had enough now, even though the reasons I was against taking them still apply :-/ Will have to just wait and see again.

I don't even know what I would do if a trial worked- would I agree to more tests or just ask to carry on with the drugs not knowing what was wrong, and start a life for myself, hoping the benefits of the drugs would last.

Been waking with horrid abdo pains in the mornings which always sets the mood for the day!
 
So the doc visit was interesting, I don't really like her style but appearantly I don't have any other options (according to my insurance). She basically wanted to write off everything as celiac and IBS. I tested for celiac and it came back negative, so I don't get that. She was writing out a prescription when I asked her to hold on a second and hear me out...Well she did for a little bit anyways, until she heard about my colovaginal fistula...Immediately the prescription pad came out along with the lab form...She actually mentioned the words "Crohn's Disease and diverculitis" as she was writing up the order for a CAT Scan...

So I left the office with an order for BUN and Creatinine blood test, a CT scan for Friday of my pelvic area and prescription for amoxocyllin. I have no idea how this all realates but I guess I will find out.
 
@Allie, boo for Lupus but yay for getting closer to the diagnosis!

@Sunshine, keeping my fingers crossed for you and your test.
 
That does sound interesting, hmmm!

I wouldn't rely on the blood tests for cealic, they are useful but very unreliable. THe only way to be sure are biopsies from an upper endoscopy.
 
Space, I'm glad you got that doctor to listen and change her tune! Wow, she was about to say you've got celiac even though the test came back normal! That's pretty bad, I'm glad she ordered a CT scan. If she does anything iffy again though I'd definitely say start looking for a new doctor because it sounds like this one was completely blowing you off up until you mentioned the fistula. Did she say why she wrote you a prescription for amoxicillin? That's a pretty general anti-biotic but you shouldn't actually take it unless you've got a bacterial infection of some sort. Maybe she thinks you have an infection because of the fistula? Did she say anything like that?

Star, as you say - blindly taking meds, starting a life and hoping the benefits will last - isn't all that bad! That's essentially what I've been doing, and I'm much happier being in remission and being undiagnosed than I was being ill and having test after test. Sure, Asacol is very mild and I may flare up tomorrow or a year from now or 10 years from now - I'll deal with that if/when it happens. In the meantime though, I can work and go shopping and go out to dinner with hubby and go to movies with my friends and not have to worry too terribly much about what my guts are going to do or where the nearest bathroom is. Believe me, although there's still a question mark hanging over my head, being able to live life relatively normally again is a huge blessing. You're young, you deserve to be happy, to be able to leave your home without worry or tons of planning, to go on vacation and find love and all the other stuff you've said that you want to do. I know you've got a lot of reservations about trying the immuno-suppresants - I guess I'm just saying, keep an open mind about it. Remission without diagnosis is still pretty darn good and I can say that from personal experience!
 
Sunshine, I hope tomorrow goes ok! I really really hope he sees something.

Allie, some people with ANA have rheumatoid arthritis, but there's also a separate check for it - RH factor. You probably also had that test. I'm not sure if I mentioned this ever, but positive ANA is rather interesting. Different auto-immune diseases tend to present with a positive ANA in specific titer ranges. They also tend to have different patterns when looked at under a microscope.

I got a handicap tag real easy. My endocrinologist wrote me a prescription, and I went and got it from the BMV/DMV. $3 here in Ohio!

I hurt a lot today. I think the numbness in my hand is potentially lessening. I'm starting to feel pain towards the tip of my thumb where the numbness kind of ends.

I think I got really discouraged with the colonoscopy results. I cancelled my endo appt because I never got in to do my blood work, and now I just have a pile of doctors appts and tests to schedule but meh. it just seems like a waste of time.
 
Allie, I am glad that you are a step closer to some decent and appropriate treatment. Let's hope you can get your life on track / back asap.

Hang in there Starr the last couple of weeks Pre appointments always drags so much, and hopefully he will book you in urgently when he hears your history.you need a spot of luck.

Space , I hope your meds make you feel better and your tests show something.

Cat- is the asacol still working for you?

Sunshine, good luck with the rest of your prep and let's hope your pillcam has beady eyes!
Carrie, what do you take for your joints? I'm sorry they are giving you so much grief.
Everyone else. :)
I start prep today. Bit cheesed as my gp rang last night as my hb has dropped again to 75 and asked me to contact GI about setting up another blood transfusion.
I get fed up doing the chasing so I said unless I see any more blood I will try and avoid another transfusion. I hope the prep doesn't stir things up too much as I will be on my own in the hotel tonight and don't fancy bleeding to death! I shouldn't joke, I know but enoughs enough .. You all know what it's like!
 
Thanks Littlemish. I certainly have never questioned the priority I am given with tests but let's say that is something I will be "discussing" with the surgery dept!

Good luck with your prep and I hope it isn't too rough on you :hug:
 
Thanks everyone!
Going in to the hospital now to get hooked up and everything.

Little Miss H, I hope your prep is going well!! Thinking of you!! wishing good thoughts for your prep day and hope you don't lose anymore blood!!

<3
 
littlemish, I take plaquenil (and tramadol) for my joints. it seemed to make a slight difference all around, but not a huge difference.

I'm nauseous today (go figure). I brought in some of my flowers to show my coworkers. They're always like, why do you make these? Well.. I'm sitting at home all the time. a person gets bored, ya know?

My thumb is still numb. not sure if I should call the doc.

edit: here's a link to some of the flowers. http://flic.kr/p/ayX8xq
There are a few more in my photostream.

I've been hiccuping for almost 15 minutes now.
 
Last edited:
Sunshine and LMH,

Just wanted to wish you both the best of luck with your pill cam procedures, I hope that the prep wasn't too torturous for you and that it gives you both the answers you seek. There's people all over the world thinking of you both and sending their warmest thoughts and I be one of them too, good luck and look after yourselves.
 
littlemissh and sunshine - Thinking of you two today. Keep us posted on how your procedures went.


A little update about me: I have been off Lialda and taking Rixfahan for 5 days. I have little ab pain and feel pretty good. Also, I have been having one solid BM per day, similar to before my issues began. For over a year, I have had loose/thin stools. I apologize if I am being to graphic, but I have a point... After today's BM, I had a good amount of bright red blood on the TP; I didn't see any on the BM or in toilet. Of course, I was immediately alarmed. Blood is never a good sign. However, I am wondering if it was caused by passing such a large/hard BM (it was a little difficult to pass), which my rectum isn't used to dealing with. What do you think? Am I making excuses? I figure I'll see how the next day or so goes before calling my GI in a panic, and I thought I'd see waht you guys thought first.
 
Jill, in my personal experience, if I have blood on the TP it always comes from an anal fissure. That would make sense too because you said it was a large/hard BM and those usually tear open a fissure for me. My fissures are usually pretty small and heal on their own after a couple of days. I hope that's all it is for you too!

Sunshine and Little Miss H, best of luck with your pill cams!

I'm doing blah again today. I've had this cold for like 2 weeks now and it smacked me down again. I apparently had mucus dripping from my sinuses into my stomach when I was asleep last night - I woke up at about 3 AM with horrible nausea and I could feel that I'm full of mucus. How do you know if you're developing pneumonia? I've hocked up a fair amount of mucus from my throat and some of it has been bloody. I checked the webmd description of pneumonia, and it says that nausea and diarrhea are common - well, I've got that anyway, not sure if it's just that this is a cold riling up my immune system and my guts, or if this is something worse. What would you guys do? I think I'm going to give it another day or so and then call my GP if I don't improve.
 
@Cat - I was thinking the blood was caused by a tear, as well. It was bright red (like from a fresh cut), and it was only on the TP. I am glad the Rifaximin seems to be making my BM's solid, but I think it's now gone too far the other way.


I am sorry you have been feeling so crumby. I certainly don't like hearing you have been coughing up bloody mucus. If you fear pneumonia, I wouldn't mess around. A chest x-ray would determine that in a jiffy. If you have another bad night, I'd phone your GP in the AM. It's better safe than sorry.
 
Hi Cat, It could be something other than pneumonia like bronchitis as well. From what I understand, bronchitis is more common. I'd go to the doctor if you've been fighting it for two weeks.
 
Hi Cat I was just reading your post and I too have just recovered from a severe chest infection / pneumonia. I foolishly didn't go to the doc until I became really bad and my mum dragged me, It took 3 lots of antibiotics to shift and TBH I'm still coughing up stuff. 3 weeks ago I was really feverish with it and couldn't get a breath in it was def my right lower lobe it wouldn't expand, and my CRP was 130 and WCC 15, anyways i'm not sure if it was pneumonia but i've never had a chest infection as bad. My advice is go and get some treatment as it could get worse like mine did, and yes I put it down to having a crappy immune system also!! clarithromycin and doxycycline have seemed to do the trick, oh and lots of chest physio. good luck
 
Archie, I'm not having trouble breathing. I did have a fever which topped out at 100.3 on Saturday evening, but it's been gone for a couple of days now. I was hoping that the fever ending meant that I was getting on the mend, my big problem now is just that I'm still so full of mucus! I've been resting today and hopefully I'll be doing better tomorrow. Of course, I rested on Saturday too and felt a bit better Sunday & Monday so who knows! I hate going to the doctor so often but I suppose it's probably got to be done. I'll call my GP in the morning and see what he has to say.
 
Jill, I have had the same bleeding, bright red during a BM. I also have a hemmie. At times the blood is all over the stool, and my bum hurts quite a bit afterwards! I'm sorry you are going through the same thing. :(

I'm doing not so good today. :( Tons of pain. I'm still having the hardest trouble getting up in the morning....I go to bed around midnight, then can't seem to wake up until around 10, the latest noon. Today my alarm went off at 8:30, I changed it to 9:30, then at 9:30 I got up, but was so tired I was falling asleep sitting up. My husband texted me saying he was coming home (YAY! He has been in the field for a month) and we was getting on Skype. So I decided to not go to the Rheumy for the blood tests, and instead welcome my hubby home. Well, he got on skype, and I fell asleep on skype with him. :( I woke up and he told me to go back to bed, so I slept while he was on skype until noon (it was really nice having him there). When I finally woke up I started to get upset about not being able to wake up in the morning, he said "Alisa, you have untreated Lupus, you are very sick and your body is weak and needs more rest than a normal person. Don't feel bad and just let it happen." I'm having a hard time accepting it. I just want to be normal and sleep 8 hours and get a bunch done during the day, but I don't think that is going to happen anytime soon. I could go back to sleep very easily right now...

My pain is also very high today. I'm limping due to it. Yuck. :(
 
@Allie - I never had a hemmie, but I am hoping it was just a tear or something caused by the BM. I am praying it isn't the start of something more serious.

Oh, Allie, I am so sorry you are in such pain. I can't wait until you can start treatment and feel better.

Please don't beat yourself up over needing extra sleep. You husband is 100% right, you deserve your rest. Sounds like you got a great man there. Congrats on his return home!
 
Thanks Jill. He is a great guy, and helps me a lot with getting through this. Its much nicer to be able to talk to him on skype, even though he is still in Germany. :) 53 days until he comes here to see me graduate college! :)
 
Allie, he's right, you need to let yourself rest. I always feel guilty and upset about needing to sleep, and Kelly tells me the same thing. Sometimes (most days) I have to nap while I am at work. it's embarrassing, but necessary. hopefully you'll start treatment soon and feel a little better!!


so does anyone have livejournal?
 
Today they got the pill down yayy! I had a weird reaction to all the meds they gave me though. like where my IV was, they put the sleepy medicine in and it stung a little bit which is normal, but then she put another drug and it hurt sooo bad, and then they put lydocane or whatever to numb it because it was hurting so bad. And then they were confused because around my IV my skin was red and had little dots. Weird.. but yeah after they got me to sleep I was much better. The pill was done recording at about 7pm. I had dinner and of course it went through me, but at least I got to eat something. Tomorrow morning my appointment is at 11:20 to talk to my doctor about the results and see what's next. I'm hoping for a true concrete diagnosis tomorrow... ahhh I sure hope he knows what's going on after he sees this! I don't know what i'm going to do if for some reason he doesn't think it's crohn's. I don't want crohn's but just like everyone, I just want a diagnosis and get treatment started, because then I will know for sure what's wrong and why i'm always in pain so much.

Little Miss H, hope your prep went well and hope that your procedure goes well also!! Lots of hugs!

Allie, you poor thing :( hopefully you can go to the doctors soon so they can investigate more into the autoimmune route with Lupus.

Thinking of you all!
 
Finally a club i can feel home at!:luigi:

^ are you talking about the pill scope thing that can look through the small bowel? I think my GI is ordering one of those after he sees the results of my CT.
 
I almost had a nervous breakdown last night due to issues I can't talk about in such a public forum. I'm devastated by it, it's consuming me. I don't know what to do about it. needless to say, everything in my body is exploding.
 
@Sunshine - Wow, your GI is going through the pill cam results so fast! Usually it takes at least a week or two for results. I hope you get the answers you need.

@Star - I am sorry you had a tough day. Hopefully, you'll be well for your concert.


Well, normal BM but with more blood today. Again, it was bright red, this time with some on the stool and very little on the TP. Do you think the blood is from stopping the Lialda? That is my worst fear. Should I give it a few more days before I get really upset and phone my GI?
 
Sounds like everyone is having trouble lately. Maybe it's the time of year? Hope everyone gets through all these troubles soon.

I even had D for the last two days, and that is super unusual for me.

Jill, I don't know. What, other than time, heals fissures? And will they heal if the stool keeps ripping them back open? I hate to say the F word (fiber) but do you think if your stools were softer it would help? Good grief, I can't believe I am saying that to another adult. :) When my GI put me on Xifaxan the first time, he also put me on Fibercon (some type of bulking something rather laxative). It didn't seem to help me, but what if you took some stool softeners? You said you were kind of backed up, right? Maybe if it could pass easier, your fissure could heal, and then you might know that was actually the problem.
 
Jill- i'd phone your GI now to see what they say. To put your mind at rest if nothing else.

I'm so sorry to hear that Carrie :( Believe me when I say I know how you feel. The only reason I have not had a breakdown is I hold it all in. If I start crying i'll never stop. And if I start thinking about how bad things are I stop as soon as possible.
 
I hope everyone's day goes well today. Sunshine, I really hope the doctors appt goes well!

I also have fissures almost chronically. putting salve on them, never using toilet paper only wet wipes, patting dry, those are the things that help keep them from getting worse and healing quicker.

Star - thank you. I've been crying for a whole day now. If I hadn't promised my boss I'd be in today I think I would have called off and slept all day.
 
@May - I can't believe the things I so easily say on the forum! Yes, I do think the Xifaxan could be making my stool too hard (they have been like a type 2 on the bristol scale), which could have caused a tear. I was thinking about a softener, actually. I am going to give it one more day. If more blood tomorrow, I'll phone my GI, tell her my thoughts and see what she suggests.

@Star - I have such a phobia about reaching out to my GI. She isn't very approachable and makes me feel like I am a nuisance. So, though it would make me feel better to talk to her, I get all worked up beforehand.
 
they're really hard to see, and you probably won't be able to see your own unless they're severe. They tend to look like raw little scratches, paper cuts, etc, if you look real close. I can tell where the ones on the outside are by touch. once I know exactly where they are I clean and salve them.
 
I'm still dealing with this cold and it hasn't gotten any better. Nausea is a little better but I have a very low appetite so I'm not out of the woods tummy-wise. Called my GP's office first thing this morning - he can't see me today, but a different GP there can. I hope she's good. My appointment is at 2 PM today. Meanwhile, it's only 10:30 here and I've already mostly filled my trash can with snotty used kleenex. I've lost a bit of weight and it's probably equally due to both nausea and mucus loss! Ha ha. I feel like I've expelled my body weight in mucus over the course of this cold (2 weeks and counting). I really hope it's not something more serious (or if it is, I hope I can start treatment today). I *need* to be better by Saturday - that's the big Halloween party downtown! My costume is ready and there's no way I'm missing this!

Jill, I've never been able to see my own fissures. All the ideas you've been given are good - stool softeners (drink a lot of water too as that'll soften up your hard stools a bit), barrier creams like Calmoseptine (it'll keep the bad stuff out and it soothes too), wet wipes and pat dry, and just give it a little time. I've had a few fissures over the years that lasted weeks or months, but even those eventually healed on their own over time. And as I said, mine usually heal on their own after a few days. If it's a hemorrhoid, you might not even know it - there are both external and internal hemmies. I had a bad external one that didn't bleed but hurt a lot. I haven't had any internal ones as far as I know, but my understanding is that they're the opposite - they tend to not hurt but they can bleed. As someone else said (sorry, cold meds fogging my ability to remember things), bright red blood usually indicates hemmie or fissure. Since you said the blood was only on the TP, that sounds more like a fissure than a hemmie to me.

Carrie, I'm so sorry to hear that you're dealing with such awfulness. :( Sending you a big old virtual hug (the best kind right now, since you can't catch my cold from it!) I hope things are able to improve so that your body doesn't crumble from stress any more than it has already. Easier said than done, but try to take care of yourself as much as you are able to. Deep breaths, hot tea, a hot bath, some new nail polish, whatever helps you de-stress. Thinking of you!

Sunshine, I think you're in one time zone ahead of me which means you should be getting your pill cam results right about now-ish? I'm on pins and needles waiting to hear what you find out!

Gdhillon: Welcome to the club and I'm sorry that your post got a bit lost in a sea of conversation. Would you mind telling us a little bit more about yourself? How long you've been ill, what your symptoms are, what tests you've had, etc.

Star, I hope you're able to go to that concert. That sounds fun, I haven't been to a concert in ages. I know I haven't been to one since I've been ill. Oh, and I thought of you the other day - my best friend is getting married on 11/11/11 and I remembered that is the date of your next appointment. So I'll be thinking of you then! (Please think of me too - this wedding is going to be *ahem* interesting to say the least. There's only about 10 people total including bride, groom, and guests. I'm the only bridesmaid and my hubby is the only groomsman. But the couple is getting married in a sort of weird place and then they're taking us all out to lunch - at a truck stop! Eek!)

Cold meds getting to me. Did I forget anyone? May, I think I forgot you. Sorry to hear that you've been having some issues lately too! That's no good. :( I hope things clear up soon!

Allie, have you gotten those other blood tests done yet? I'm also on pins & needles for you! I hope this is finally the answer you've been looking for!
 
Thanks Cat, It's not going to get better, but I'll figure out how to cope with it. it's not a health issue although I kind of wish it was. I know, sort of, how to deal with those.
 
Last edited:
Just went to the appointment he didn't get the results back yet. So he said go home and he'll call me either tonight or tomorrow with the results of the pill cam. He said if it shows crohns then he has to have me do another double balloon endoscopy and they will have to go to the parts that are affected to get biopsies... :( which could be like going in 15 feet.. And if the pill cam shows normal then they have to do lots of more tests to find what's going on he said. So I'm on my way home. Just informing you all on what I was told. No answers. :(
 
ugh, gah! I'm sorry Sunshine, that sucks! I guess I'm not surprised he doesn't have the results back, but I'm impressed that he's still pushing to view them asap.

the additional DBE sucks a lot though :(
 
Oh my god Sunshine....I cannot believe you still have that much to do...:(.

I went to my Rheumy's office this morning and got the tests done. They didn't tell me anything, and the blood tests were for the autoimmune diseases that cause positive ANA including Lupus. The diagnosis code they used was "abnormal test results" so that didn't help me either lol. Now I get to try and be patient until the 10th of November...fat chance lol. Oy waiting is the worst!
 
My, what a night.
Prep made me sick ++ and pain. Didn't stop being sick and even throwing up just before swallowing capsule. Stomach so full of blood, they tried iv metoclopramide which did't help.
Ended up with local gastro consultant (not my own)having a word....likely blood washing back from small bowel and possible stricture meaning that it wasn't emptying so capsule sitting in stomach.
Choices were endoscopy to retrieve capsule and then different Ix or push capsule through and risk reasonable chance of it getting stuck but possible to see some of small bowel.
He feels most likley still crohns and he agrees would put me on a biological agent...blah blah -as already on high dose pred and azathioprine dose that I can cope with which isn't much as low white counts.
So I went for the latter but had to have with no sedation as came alone (didn't know endoscopy would be on the cards!)and hubbie at the seaside...also work tomorrow.

It was hideous as it took forever due to the amount of blood and he kept netting clots of blood instaed of capsule and could n't see where he was going. Found a big gastric ulcer and a small one...possibly crohns, possibly not.Not actively bleeding though so unlikeyly the source of bleeding...shame.
Had to drive back home, was in so much pain and still being sick so throwing up in the lay bys but my pain is just starting to settle now.
They have said they will have results by tomorrow.Will ring me. Must show something other than lots of blood.The consultant said he realised I am at end of my tether and he even said that something needs doing asap 'just by eyeballing' me whilst talking to me...great.
Fingers crossed.
Have to have repeat endoscopy in 12 weeks to make sure GU has healed. Also still awaiting CT of small bowel. Can't have MRI unless capsule passed.
See my own gastro on monday to go through results.Looks like another transfusion though as hb 75 before this prep made me bleed again. Am doing emu impresssion though and will get hb check monday instead of tomorrow as working and had enough frankly.

Sunshine , so sorry no nearer for you. Why did he say he would have results when he wouldn't. He seems to be insisting on a tissue diagnosis. Luckily my gastro and also the one at the pillcam hospital agree for me that the further tests and time will just end up with me being worse.

Better shut up now as this is very long and rambly...
 
@Cat - Thanks for the advice. I really hope it is only a fissure or hemmie. I am just not too sure. Praying it isn't something worse.

I am sorry you still are so sick! I hope the GP you see today will fix you up in time for your party this weekend. Let us know how it goes; I amcrossing my fingers it isn't pneumonia.



@Sunshine - I am sorry you didn't get any answers today, but at least you know they are coming soon! Keep us posted.
 
Thank you everyone. Yeah hopefully tomorrow my mayo clinic doctor calls me with answers! *Crossing fingers, as always*

SO SORRY you are so sick little miss h. :( so sad! :( hope you feel a little better soon.

Allie, hope this autoimmune route is the way to go!
 
I just got back from the GP. She listened to my lungs and looked in my ears and nose, and she doesn't think it's pneumonia. Not enough gunk in my lungs for that I guess. She thinks it's bronchitis, so she gave me some antibiotics (Azithromycin or something like that) and also an inhaler and codeine cough syrup. Good stuff, I've been wheezing in the mornings with this cold so the inhaler will be lovely, and I've been coughing all through the night so the codeine cough syrup will be good too. I'm not so sure about the antibiotics though - I hate taking them unless I know that there's a bacterial infection, and the doc didn't run any tests to see if this is viral or bacterial. I guess I'll take them because I need to get better, but I'm not super happy about it. This also means I have to take probiotics while I'm on the antibiotics, and I dislike taking those too - they seem to worsen my GERD. Hmmph. I guess I can't complain too much, it's only 5 days of antibiotics. And if they help then I guess it's worth it.

Sunshine, you poor thing, I can't believe they're trying to make you undergo even more tests before they give you any treatment! :( If it were me, and if they do indeed find the Crohn's on the pill cam results, I'd put my foot down and say no more tests, no more suffering - start treatment! Could your mom perhaps speak up on your behalf if you're not up to it? She goes with you to the appointments, right? I mean, if they find Crohn's then they should be able to start treatment - it's so frustrating what they've been putting you through. Test after test and prep after prep - enough is enough and I think you really need to tell them that! You're going to waste away from lack of food and lack of sleep before too long. :(

Little Miss H, that pill cam experience sounds awful! :( I'm so sorry to hear that you had to go through all that, especially with everything you've been through already this year. It sounds just miserable, and I really hope the capsule doesn't get stuck because that sounds awful too. My gosh, the things we go through just to get information about what's going on in our guts! Sometimes it really seems not worth it! I hope that capsule comes out of you so that at least you don't have that to worry about. I've probably mentioned this before (my memory sucks lately!) but I know a couple of radiology techs, and they said they've heard that sometimes the final images on pill cams is of the patient looking down into the toilet bowl. I'm thinking mine might have been one of those, because I never saw the capsule come out and I was also scheduled for an MRI. I wanted to make sure the capsule was out of me before I had the MRI, but the gastro nurse told me something to the effect of "You definitely expelled the capsule, it got... all the way to the end." Something like that anyway. Eek, to think there are photos of me in existence of my face looking into the toilet trying to see the capsule! I didn't see it but it must have seen me! So anyway, although that's creepy it's a much better result than the capsule getting stuck. I hope yours gets "all the way to the end" too!

Allie, I hope they get that blood work back soon and can call you with the results sooner than the 10th. 2 weeks is a long time to wait and surely they'll get the results in sooner than that. Hopefully they can call you like they did when the ANA came back positive? At least then you'd know and you could discuss treatment, prognosis, etc on the 10th. Fingers crossed for you - I feel odd saying this, but I hope it's Lupus! (Well I don't really, but I hope it's SOMETHING so that you can get treatment and feel better!)

Jill, how are you doing today? Still having some blood? Is it getting any better? How are you doing emotion-wise, are you dealing okay with having your diagnosis taken away? I can imagine that's really tough and a lot of emotions would come up. Keep on hanging in there, we're all here for you. And I hope the Rifamaxin (I almost wrote Ranitidine but that's Zantac! Wow my brain is really turning into mush with this cold) is indeed helping things.
 
Oh, I forgot to mention the best part of my GP visit today - the doc said that if the antibiotics, inhaler and cough syrup don't make me better and/or if I'm still wheezing in 3 or 4 days, that I should call her back and she'll put me on prednisone! I was like, WOW! My GI won't let me touch the stuff anymore for my guts, but I get a bad cold or whatever and suddenly I'm in pred city??? That just seems crazy to me!
 
hah Cat. I always get pred when I have bronchitis. Your GP probably doesn't give your guts a second thought. Even though I'm supposed to be no NSAIDs my GP will still try to suggest them.
 
Cat, my son had bronchitis when he was 18 months old, and he was on a similar regimen as you: prednisone for a few days, antibiotic (i want to say they said that was preventative as much as anything), and also nebulizer breathing treatments until his cough went away. I've got a friend who has asthma and she's often on pred. I guess it knocks out lung inflammation too.
 
Carrie, I had mentioned that I've been having some nausea and a bit of d with this cold, and she said that if she does put me on pred that of course it'll help with the tummy stuff as well. I mentioned to her several times that I have probable IBD so she knew full well, and she didn't try to suggest any NSAIDs.

May, yeah that makes sense, pred is systemic and it seems it'll knock out inflammation wherever it is in the body. When my hubby had kidney stones, one of the stones was impacted in his kidney or in the ureter maybe, anyway it was stuck and they put him on 10 mg pred for 3 days to try to reduce inflammation in that area and get the stone to move. It didn't work but it was an interesting thought. For as many side effects as pred has, it apparently also has a zillion uses!
 
@gd, sounds like I may be on a similar track to find out whats wrong. Did you have a scope yet? My first real test, not just a blood test is on Friday, and its a CT Scan.

I swear they are trying to freak me out over it because on two separate occassions the radiology dept has called to ask about my emergency contact, if I have living will, and if its ok to be listed in the directory during my stay. I think its a bit much for a short little test :p
 
@sunshine, so frustrating. Hopefully the cam comes back with something.

@cat feel better soon!

@little, I wish these test went smoother for you! It has to be frustrating.
 
@Sunshine...have you set up your online account with the Mayo clinic? You're able to see your test results on there; well most of them, possibly not the pill cam, but it just reminded me to ask you :)

I hope you get some results soon! I know it's so hard on you with all the testing, but you are in the best place to be with them; truly. I told you they take action very quickly, and you would go through a lot at first, but then it will all calm down and you will get treatment and feel so much better ! They have to find out the problem first though. Hang in there girl you're doing great !

@Allie...Congrats on finally getting somewhere with your doctors !! :)
@Cat...get better quick dear! Glad you got some meds to treat the bronchitis. And ya, pred is a norm if chest doesn't clear up...it'll probably be like a 7 day taper :)

@Little...my goodness you must be one tough cookie !! you poor thing :(

hope everyone starts getting some results and feels better soon!
 
@Cat - I am glad you don't have pneumonia! I sure hope the antibiotics do the trick, and you feel better soon.

Yes, I had blood again today when I went to the bathroom. This has me a bit upset, and I am not doing too great emotionally. I really didn't believe my GI's new theory, and I knew better not to get my hopes up. But after stopping Lialda & starting Rifamaxin, I immediately saw an improvement with my BM's. I was starting to think maybe she was right. But now with the blood yesterday & today, I am getting worried what's going on in there. I mean, I guess it could be a fissure causing the bleeding, but I have never had one before. I am worried.
 
sunshine, littlemiss, allie - that sucks bofa for all you guys!!

my gi didn't want to do a pill cam on me because with crohnies there's always the risk of it getting stuck. that, and i didn't really have any symptoms to suggest small bowel stuff going on.

cat-glad it's not pneumonia. if they do put you on pred, might want to ask for nystatin or other anti-fungal. after antibiotics and steroids, that will wipe you out, fungus-wise.
 
Crohn's mom, yes you are 100% right! I am in the best place I can be to get help. I'm just in a lot of pain and things keep getting worse, so it's just hard. But I am being as strong as I can through everything. I know that there is a light at the end of the tunnel! :) Gotta stay positive even though i'm not feeling well.
 
Dealing with two issues today. The first issue is I forgot my birth control on Tuesday & Wednesday morning. I remembered last night, since I started getting bad cramps and took both pills. But I woke this morning to spotting and feeling like crap. I am not sure if I should take today's pill or just let my period come. I have never forgotten a pill before in 5 years.

Second issue is, of course, my GI issues. One, my guts feel like crap, which could be due to my screwed up period. But the main issue is the darned blood. There was mucus with traces of blood with my BM today. So, I don't think the blood is from a fissure since it was among the mucus. And we all know blood isn't a symptom of IBS. I think it is safe to say my GI's theory is wrong. I just don't think there is any reasonable explanation for blood and mucus other than IBD. I knew my GI's theory was off, so why am I so disappointed?
 
Jill, since you only missed two pills, not three, you should continue to take your pills. You have, however, put yourself in a precarious position fertility wise and should use backup protection for at least 7 days. Skipping two or more pills can cause spotting or the period to come early so don't be too worried about that.

You could stop taking the pills then start up again on Sunday with a new pack, but then you lose the rest of this current pack.
 
Thank you, Carrie! I actually just got off the phone with my doctor and your advice was exactly what she told me. You know your stuff, girl!
 
Jill, with regards to the blood mixed with mucus in the toilet - this is going to sound really gross, but, if it happens again, take a photo of it and show it/email it to your GI. Maybe visual proof will sway her opinion of what's going on with you, I've heard stories like that before on the forum. Surely she knows that blood is not part of IBS. You had a flexi-sig recently, right? And she didn't see any internal hemorrhoids at that time? If that's the case, then she can't blame the blood on hemmies. And if it's a fissure, the blood wouldn't be mixed in with the mucus like that. It sounds to me like something else is going on and your GI really needs to know about it.

Sunshine, have you heard anything yet regarding the pill cam results? I'm thinking happy giraffe-y thoughts for you! :)

I'm happy to report that I'm doing a LOT better today. The antibiotics are screwing with my guts of course, so I had some watery d yesterday evening, but then before bed I took the codeine cough syrup and that seemed to help quite a bit. I slept through the whole night which was very much needed! I think the codeine is helping slow down my gut quite a bit too as I haven't "gone" since yesterday. I was wheezing again this morning but the inhaler cleared that right up. My head and chest both feel a lot clearer and less full of mucus. I'm still sick and my voice still sounds like that of an 80 year-old chain smoker, but I feel tons better today than I've been feeling. :)
 
codeine cough syrup is a lovely thing.

with my stress through the roof, I've been clenching my teeth more. Well now, it seems as though I broke the skin that stretches in the back of your mouth when you open your jaw. Do you know what a mean? between cheek and back teeth. It hurts so much. I'm assuming I did it trying to stretch my jaw out. it was bad yesterday, but worse today.

Sunshine, I hope the doctor calls you back early today!
Cat, glad you're starting to feel a little better.

I love the picture idea. I might have to do that to my GI.
 
@Cat - Yes, I had a full colonsocpy on September 22nd. There were no hemorrhoids. The only abnormality was slight erythema in my rectum. All else was clear and biopsies were normal. I sure hope it doesn't take me needing a photo for my GI to listen to my concerns, but I will if I have to, I guess. I just don't know how she can argue when blood is present.
 
Jill, she probably thinks you are overstating the blood symptom. I know my GI has to think I overstate my symptoms even though I don't. He says its all caused by my fibro.
 
It's 1:15 and still haven't heard from the doctor!! this anticipation is killing me!! hope he calls soon! As soon as I find out, I will tell you all what he said.

hope you all have a good tummy day!
 
Sunshine, any word yet? If not, call that doctor now or first thing in the morning, light a fire under his butt and let him know you're in desperate need of those results. Sometimes my GI takes his sweet time returning my calls, so I'm persistent and I call his office at least once per day, sometimes twice per day until I hear back from him. I'm sure his receptionists and nurses hate me but I could care less what they think - they're not the ones who are sick and suffering. So call that doctor and tell him you're suffering and need those results so you can do whatever is next!

I'm still feeling much better than yesterday, but my voice sounds horrible today - it's like a squeaky rasp and at times it's barely a whisper, this bronchitis apparently comes with a helping of laryngitis. So all my co-workers are really concerned and think that because I sound horrible I must feel horrible too. I have to keep explaining that actually I feel a lot better today but I just sound worse. Nobody seems convinced - one co-worker even offered to drive to Walgreens and pick up meds for me - in order to convince her not to go, I had to tell her the list of meds I've already got plus the fact that I was already at Walgreens twice yesterday. It's like, I wish IBD gave me laryngitis so people would understand that I'm ill and people would be nice to me! Not really but it's just interesting how differently I'm treated when I've got an obvious illness going on vs an invisible one. I guess also people can understand laryngitis and bronchitis because most everyone has had those at some point, but nobody really understands IBD unless they've got it too (I do have a co-worker with UC and he's been so great and understanding but I believe he's the only other person in the office with IBD).
 
I've been fobbed off now about passing (dark) blood by 2 GI's, I don't even bother bringing it up anymore, unless it is a serious departure from my norm (which I did have a little while ago). One said it was normal for everyone to pass a little blood (!) and the other said he would only be concerned if 100% of the stool was bloody, wtf, no wonder I prefer Rheumy dept these days!

I had black, bloody mucus in stool and tp a few weeks ago and heard zip from GI when I emailed him...

I'm better today, it was one of my mini-flares yesterday, I get a couple of these a year it seems, my guts suddenly decide they don't want any food in them, you know the rest... happily by day 2 all I have is intense nausea, can eat again and by day 3 I am usually back to normal bm's. I am really hungry right now which is quite unusual and a good sign.

Really want to make the concert Wednesday. I am rather in love/lust with this performer!! :dance:
 
glad you're feeling better cat.

sunshine, i hope you hear something soon.

i'm getting a little frustrated. i've been doing really well on the remicade. it's been just over 3 weeks. my rectal pressure has gone away, my acne has cleared up, my fistula hole is healing up pretty well. the mucus had been gradually lessening. then a few days ago i started getting a little more mucus, then the last couple of days i've had like twice the # of bowel movements i normally have. then i started having a lot more mucus. not as much as pre-remicade, but enough that it's starting to come through my fistula hole again, which is fantastically frustrating, as i'm hoping that it doesn't hinder my healing there.
i'm pretty sure it's hormonal. PMS. and i know that PMS can make symptoms worse. can all the extra muscle contractions be making my intestines produce more mucus? i know it's making me gassy. is it the gas? i just don't want my fistula hole to get bigger again after it's gotten so much smaller.
i don't think the remicade has stopped working, as my other symptoms have been kept at bay.
i've been taking gas-x all day. any other suggestions? blegh. sorry to vent. i'm just so worried about going back to feeling cruddy again.
 
Well I don't know much about Remacide, but it could be not that it's stopped working, more that the benefits have worn off. I do know Drs have to tinker with the frequency of infusions according to when the symptoms come back.

I don't think PMS helps any medical situation!
 
i haven't been on it long enough for it to just stop working already. i had my second loading dose last week. maybe i need a few more infusions to really kick it in gear. i've only had 2.
 
hey everyone... doctor called earlier. He said my pill cam was normal... :/ I DON'T UNDERSTAND!!!! :( basically have to start from square 1 again!!! :( Starting with more blood tests soon... then idk what else. I don't get it... how can one pill cam say I have all these ulcers and crohn's disease and then do another one and it has nothing wrong... this is just hard to comprehend really... i don't understand. someone messed up. I totally believe the mayo clinic though, they are the real professionals. so i know that if they say i don't have crohn's then i don't... it's just all so weird... :( now I don't know what to think, i wonder what really is wrong... *sigh :(
 

Similar threads

K
Possible Crohn’s disease
Replies
10
Views
1K
musicalwiz
M
R
Nearly 4.5 years in with Crohn's.
Replies
2
Views
935
ras96mg
R
C
Your thoughts, please. 10 yr old.
Replies
9
Views
509
Maya142
Maya142
N
Advice on diagnosis
Replies
1
Views
966
Scipio
Scipio
K
So confused after apparent relapse
Replies
6
Views
1K
Opieshuffle13
O

Latest posts

Back
Top