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Oh my goodness, what in the world? That doesn't make any sense. I am so sorry. That must be mentally so difficult, aside from the fact you are still suffering physically for some unexplained reason. Whatever it ends up being, I sure hope you can get some kind of relief here shortly.
 
Sunshine- I don't understand that! :yfaint:

Can't they see how much weight you've lost, that you can't eat, can't sleep, can't stay out of the bathroom? WTH??? :yfrown: This just doesn't make sense. I mean, I have gotten the same response from all my tests, but I am nowhere near as sick as you. They need to figure this out- you cannot go on like this. You're gonna waste away to nothing. Can you still not eat anything? Did they give you ANY meds??:ywow:

I am so so sorry- I just knew you were gonna find the answers soon. :frown:
Try to hang in there.
 
Thank you for your thoughts <3

I am so confused because this goes way back... Like the more I think about it the more i get confused and frustrated...

Like i remember 2 doctors back with dr. ruderman, he did an endoscopy and found lots of acid and bile in my stomach and said my stomach was on fire with gastritis, and not only him but also his nurses that were in there with him looking at it... and then my next doctor Dr. Hilal did the pill cam and when he placed the pill in my stomach through an endoscopy he saw the same thing lots of redness and he even BIOPSIED a piece of the redness because he was worried about it... then I get to do the pill cam with him and the pill cam pics in my stomach look red just like it's always been, and then crohn's pictures... then i go to the mayo clinic and they don't see any redness or crohn's?????!!! I JUST DON'T UNDERSTAND! and i can feel my tummy with all the acid and "gastritis" feeling... but yet they say nothing is wrong in my tummy let alone my intestines that go through most of the pain. but it's my stomach that keeps me up... I just do not understand. VERY puzzled....... gosh what a mess.... i don't know what to do except trust the mayo clinic... :( :( :(
 
oh sunshine. <hugs>. i don't know what to say. have you had your lady parts scanned? maybe endometriosis that's traveled up? i saw this mystery diagnosis show where this chick had her intestines coming up through a hole in her diaphragm. they did this test on her where they were basically doing a ct scan while she ate, and showed the meal as it went down to see exactly what her stomach/intestines were doing. just trying to throw out ideas for you. :(
 
@Sunshine - I was told by my GI that the pill cam is highly sensative and can make nothing look like something. For example, my pill cam made it look like I had "smooth areas" or villi damage in my small intestine as though I have Celiac, but I do not have Celiac. So, perhaps there were errors with the first pill cam.

I am sorry you didn't get any answers. But if the Mayo clinic is telling you you don't have Crohn's, I think this is a good thing. Of course, you want to feel better, and I get that. But whatever is going on, it is most likely less serious. So, do they have any insight as to what is going on??
 
@Sunshine that is so frustrating. Maybe a second opinion? I mean I know the Mayo has a great track record, but labs have been known to mix up lab results or lose them altogether. I am keeping you in my thoughts.

I am off for my CT Scan...Hopefully it will show something, because like many others on this forum I am tired of being undiagnosed knowing there is something wrong.
 
Sunshine, that sucks, I don't even know what to say :( Did the GI say anything else like how it could be so radically different in results and what they can do to help you feel a little better in the interim? I'd put my foot down and demand some medication.
 
Kind of makes me wonder about whether or not there was some kind of whoopsie with the first pill cam - and then they "lost" the results to cover their mistake? What if they mixed up Sunshine's results and someone else's and then realized it after they called and told her she had Crohn's? That whole "we lost it" thing is just a little suspicious (and possibly convenient) in my book. Esp since they knew she was going to get checked out at Mayo. Sorry, that's the conspiracy theorist in me.

Whatever the case, I am most frustrated for you, Sunshine.
 
Sunshine, I'm so sorry. You've been through such a rough patch lately and to have this happen is just awful. I would go back to your doctor and question, question, question. Ask to see the images from your small intestine. Ask about how there could be such a discrepancy from one pill cam to the next. Write down all your questions and make sure you get some answers. And like Carrie said, demand some meds! Don't worry about being annoying or nosy - it's YOUR health and you need to know what's going on! Sorry if I sound mean, I am just so mad that you've been through all this and are right back to square one again. It sucks! Sending you big hugs and happy thoughts.

Space, best of luck with the CT scan! If they make you drink contrast, make sure you get yourself near a bathroom right after the scan is done. Apparently for "most" (meaning, healthy) people, the contrast tends to cause some constipation. But for me it caused watery d, the "pee out your butt" kind of d. I felt the urge come on as I was driving home and I almost didn't make it to the bathroom in time! So be aware, it may have the same effect on you. Good luck and I hope this gets you some answers!

How's everyone else today? Carrie, how are you dealing with the stuff that's been going on with you? I hope things are getting a little better. Allie, any word yet on the blood tests? Fingers are still crossed for you! Shan, how've you been doing?

I won't be on the forum much over the next few days. Halloween is a very busy time for me! Tonight we'll be putting the final touches on our costumes, Saturday is the big downtown party, Sunday I'll put up the photos from Saturday on my facebook (PM me if you aren't already my facebook friend but would like to be) and clean up the mess from all the costuming, and Monday I'll be carving my pumpkins and handing out candy to trick-or-treaters and baking pumpkin pie and who knows what else! Tuesday I'll go shopping for discounted Halloween decor - I love shopping just after holidays! And after all that I'll probably collapse from exhaustion, ha ha.
 
Hi Cat, Health-wise not much has changed. We had our first frost last night so my knees aren't working very well and they hurt a lot. Family-wise I am still entirely unable to deal with the situation. It's making bad insomnia even worse. It's affecting my ability to think clearly. I'm pretty sure everyone back home now knows that I have at least one person's part of the story, because all of the passive-aggressive bad-mouthing was removed from facebook walls. No one else has offered up their side of the story which makes me wonder if they even give a shit about what I think.

I hope you have a great Halloween!! I'm pretty much planning to spend the entire weekend at home rolling paper and gluing it to cardstock. I splurged and used my new bill-me-later credit limit to buy a cricut expression. now I just have to wait,wait,wait, for it to ship!

space, good luck with your ct-scan.

everyone else, sorry I'm being so flaky about replying. I am reading, but replying (without second/third/tenth guessing everything I try to write) can be difficult when I'm having emotional issues.
 
Enjoy your Halloween festivities, Cat! I used to LOVE throwing Halloween parties, but I haven't had one in over two years. This year were are spending the weekend watching horror flicks. My husband hates horror movies, and so I only get to see them once a year!


My daily update is a good one in that I didn't have any blood today. So, I am going to see how the weekend plays out before touching base with my GI. However, my period is the worse I've had in forever. I forgot Tuesday & Wednesday's pills, but took both on Wednesday night. But it was too late, and my period arrived (which it was due on Sunday anways). I am so crampy! Ugh!
 
Jill, what horror movies are you going to watch? Personally I am mildly obsessed with the "Saw" films. Even though they're kind of cheesy and ridiculous I still love them, it's a guilty pleasure to watch them. :) I see that the first two "Paranormal Activity" movies are on Netflix instant and I haven't seen those yet, so I may be watching them while I'm costuming or carving my pumpkin. That's too bad that your husband doesn't like horror movies - my hubby fortunately likes the Saw films almost as much as I do and we'd go to the theater on opening night every year to see the latest Saw sequel. The franchise is done now which makes me kind of sad. Yeah, it needed to end, they were just dragging it out and the final film tied up some of the loose ends so it was good. I'm just sad that a yearly tradition had to end.

Carrie, don't worry if you're not feeling up to replying, we all understand that you're going through some really tough stuff right now. Take care of yourself and enjoy your glue and paper projects. Sending a big hug your way!
 
Cat, I bought a cricut expression machine off overstock last night, and I just bought a ton of cheapie stamps from pat catans. I'll be gluing and stamping and papering all weekend :D :ghug:

p.s. unrelated: someone at work has WICKED body odor. :stinks:
 
I want new veins...besides being stabbed 4 times beofre finally getting a vein the CT Scan went smoothly, now we just wait.

@Carrie maybe some soap for christmas, might do the trick for them?
 
@Cat - Actually, I have Paranormal Activity 2 in my Q on Netflix! I saw the first one; it was soooooooooooooooo scary! Seriously, it was one of the scariest movies I have ever seen. I had trouble sleeping a few nights after. But I am going to torture myself and watch the second. I also plan on renting Scream 4. I loved the original, but to be honest, I can't really remember the second or third movie. I don't have high hopes for it, but I'll give it a go. Apparently it will be a great weekend for movies. It's supposed to snow tomorrow in the northeast! It NEVER snows this early in the season.
 
Gosh, I am sooooooooooo frustrated and upset. I don't know what to do! :( I have so many mixed emotions... :( I called the mayo clinic and talked to my doctor's nurse practitioner and she said that they sent the blood work to be done at my local lab and also he ordered another stool test for me to do. So I'm going on Monday to get the blood work done and to pick up my stool sample directions... wonder how complicated this one is. She told me to just be patient and that the doctor will get to the bottom of this. :'( djaf;oiejaflkjasf :( I don't like this. I feel like I'm basically starting over... and if he says IBS at the end of all this i think I'm going to scream. He mentioned to my mom it "could" be a severe case of IBS... what the hell is IBS! I'm going to cry. and my boyfriend keeps telling me to be stronger, and that I'm not be strong enough... and i'm sorry! It's hard to have thought i was diagnosed and that this was all over, and then be hit with a big rainstorm of everything my other doctor said was apparently a lie... :( and I'm back to being undiagnosed again... and I can't ever do anything, and the holidays are coming up and I was supposed to go with my boyfriend and his parents to tennessee for thanksgiving, but they are driving up... so that's definitely not happening. my stomach would never handle that. I can barely drive to go pick up my friend that lives 5 minutes from me... :( I just keep getting worse and I'm feeling so jfeioafjaeowi;fj :( I hope they figure out what's wrong soon!!! I'm trying to live a normal life, but it hurts to do it. and everyone keeps saying just still go on with your life and be happy and I am, but it's not that simple. Sorry for the rant, it's just so hectic and I have no idea what to think anymore.
 
I found this quote:

"Friends complain to therapists about how their bfs/gfs don't understand them. We complain about our doctors not understanding us."
 
Sunshine, I just saw your other thread. Are you having the ACTH test to check for Addison's disease? I had that test done last year, so if you have any questions about it, feel free to ask me.

I'm sorry that things are so up in the air right now. And who is your boyfriend to judge how "strong" you are??? Obviously you're very strong and we all know that! If somebody told me I wasn't being strong enough, I'd probably snap back that they're not being supportive enough! I know this situation has got to be tough on him, but I also know that it's a LOT tougher on you! So don't listen to things like that, you're very strong. You've been through so much and you still seem like a very positive person with a good sense of humor in spite of all the crap that life has thrown at you lately. You're one strong woman and don't let that boyfriend tell you otherwise!

Space, when do you find out the CT results? I think they usually come back pretty quickly so hopefully you don't have to wait too long. When I had mine I was told the results are ready the same day (but it takes a little longer because the doctor actually has to look at them). Good luck!

Jill, eek - snow! It hasn't snowed here yet but there was this weird ice/hail combo happening yesterday. Brrr! Enjoy your movies and drink some hot chocolate or hot tea or whatever your tummy can handle. I also vaguely recall having seen Scream 2 and 3 but I also don't remember much about them. I haven't seen the 4th one so I can't comment on that one. I'm glad to hear the first Paranormal Activity is good and scary, I could use a dose of that right now. I told hubby to put on "something Halloweeny" on TV for us to watch while we're putting the finishing touches on our costumes. He put on some Shrek Halloween special which is just lame. Ha ha! I'll take super scary over this any day! :p

Of course my period had to rear its ugly head today just in time for Halloween. I am going to wear a fanny pack under my dress and I was trying to pack light but I just keep adding more meds and things, and now I guess I'll be adding tampons too. I can never seem to pack light!
 
Oh Sunshine, I'm so sorry. No one has any right to tell you how strong you have to be. Your feelings are more than validated. And you are no less strong for having them.

Space, I'm sorry about your veins. Lately I've had good luck, but I have rolling veins, and it can get pretty painful when I have to get stuck.

Cat, I hope you have fun this weekend! I'm missing a costume slam right now, I wanted to come dressed as my father, or maybe just go and watch, but I just can't go, you know how it is.

As for me, it's day 12 on Budesonide and I don't know what the heck is going on with my body. I've had awful joint pain, which is no change, but my BM are way erratic. One day I will pass almost nothing but mucus, the other day I will have blood on the tp, next I will pass very thin stool, and then I will have d that looks like I'm at the end of a prep, it's so weird! I don't understand it, and I don't know if it's the Budesonide starting to take effect, because I never have passed formed stool so often before.
The last two days I've been having awful cramp pain. I've been coughing a lot, and I don't know if that could be effecting it. Whenever I move, it hurts. I'm putting heat on it now, because even the tramadol is not working on it. I hope it stops soon.
Also I don't know if it's a side effect or the weather, but the outer layer of skin on the tips of my fingers are peeling, it's odd.

I'm staying in this weekend. We don't even have money to buy candy for the trick or treaters this year, so we won't be doing a pumpkin. That kind of makes me really sad, since we had a tradition of carving one together every year, and we planned really unique pumpkins, since he's the artist. Last year we did a nuclear fall out pumpkin, with glow sticks instead of candles. It was fun!
 
Also, I'm so glad I don't have my period anymore. I feel so bad for you guys, because my period was a real problem when I was younger, I had awful thigh cramps that made me so nauseated I could hardly stand. But my birth control stopped my periods and I haven't had one in five years! I'm so thankful for that now, though I still do have a cycle, and I could probably get worse during that time and just not know it, since I have know way of knowing.
 
Cat and Dahlface, thank you! When he told me that, because the situation was this... The mayo clinic doctor called me and told me that the pill cam was normal. so you can imagine how upset i was and how confused I was. so i started crying... and i started saying how i don't understand how this could happen and stuff like that and how it's taking a toll on how i live my life and stuff. and he said you have to be strong. and i said i am being strong, and he said you have to be strongER! I'm like... oh my gosh, I freaked out. and then I told him how I was upset about all these holidays and how it's gonna be hard for me, and he just keeps saying to be strong and don't let it bother me. but it is bothering me because it's happening to me! and it really is a serious thing and it's taking forever. but I still remain patient and to get through everyday with a smile like everythings fine, but sometimes things just aren't fine... sometimes it's far apart from fine. but I keep myself positive as much as i can. I hate when he says that stuff because he has no idea what it's really like to be the one going through it. and he is my boyfriend for almost 2 years now, so he's seen this progress and get worse, but I just wish he would help me feel like i'm not stupid for crying. Other than that, he's the sweetest guy in the world. but I just don't get it, that really makes me upset. Oh well. sorry for the rant again haha :p hope you all don't hate me! :)

Cat, I hope he does that test for addisons, but i'll talk to him monday on the phone about how my grandma had it, and we'll see what he says! Sorry you got your period :( no fun. halloween is a very fun holiday so im sad that this "very not fun" thing is happening at the same time. I bet your so excited to wear your costumes you made! Bet they look amazing!

Dahlface, you're very lucky you don't get your actual period. that's awesome! :)

I still haven't gotten mine which is VERY odd for me. I'm not sexually active so there's no chance of anything like that. I've had some spotting but that's it... I was suppose to get it like 8 days ago. and again this is not normal for me... they still haven't checked for endometriosis by the way. Wonder what's going on! If by monday i still haven't gotten it yet, I'll mention it to the doctor as well.

You both really lifted my mood up. Thank you for just being there when I needed someone to talk to. Wonderful people! <3
 
@cat, my doctor will see the results next tuesday. So I am guessing I will start the harassment on Wednesday.

@dahl that nuclear pumpkin sounds cool do you have a pic? Hope you start feeling better soon!
 
@Sunshine I think you are being really brave. It's a lot to go through when you know that something is wrong with you and the test keep coming back without a solution. What a toll emotionally!

PS - Whats a fat test?
 
Sunshine, I am so sorry your pill cam came back normal. :( That is DEVASTATING. I agree with you, how could one be abnormal and the other be normal?

Have they hinted at what this could be? I know you hate the idea of it possibly being IBS, but it could be another illness making your IBS worse. You know that that is how it is with me, Lupus is causing IBS and possibly fibro.

One thing I have learned these past few months is that you can't give up! Make sure you write down ALL of your symptoms, no matter how long the list is. One symptom missing can cause something to be overlooked. I didn't realize my rashes were a factor in my illness, so when I finally brought it up it helped figure out whats going on.

I'm here if you need me! Feel free to txt me or PM me anytime! *hugs*
 
As for me, I'm not doing well at all. I have hit a wall and I hurt all over. I hadn't showered in three days, so I HAD to try and shower today, but I only had the strength to sit in the bathtub and wash that way. :( I have 49 days until I graduate, and I am hoping I will get through this.....the problem is, I have not had a good day health wise since I came back to the US, and its just getting worse. I have so much that I need to do, and all I want to do is rest. >.< It really sucks.....
 
Flowergirl, the fat diet came back normal which is weird because my stool is not normal looking at all lol... but yeah it came back normal.

Space, thank you so much! and the fat test is when they make you eat only fatty foods for 4 days and collect the stool within those 4 days so they can see if fat is being absorbed or not. I've lost a lot of weight and that's why they did that test.

Allie, you have a good point. maybe whatever is going on with me is making me have IBS symptoms, kinda like how Lupus has attacked your digestive tract. makes sense! Thank you! I trust the mayo clinic and they will get to the bottom of this, it's just gonna take patience. I have blood work being done monday and have another stool test sample to be done, not sure what kind this stool sample will be but i'll know monday when i pick it up at my local lab. I still haven't gotten my period! so weird!! o_O this is not normal for me. if i don't get it by monday then i'm going to call the mayo doctor and tell him about it (and i'm not sexually active so that's a good thing). I'm also going to tell him that my grandma had addison's disease and see if he thinks that's something to check into or not. let's get this diagnosis hunt going! Allie thank you for the advice! I'll definitely start keeping better track of all my weird symptoms! I'm sorry you are having a rough day today :( Maybe just try to rest for a little while and then get somethings done and then go back to resting. You don't want to push yourself too much because that can hurt you more. be careful!

Thank you everyone for your support! You all are wonderful and I wouldn't be able to get through all of this without my friends on here!! :)
 
Hello all. Long time no post. I miss this space and think of it often. You helped me out when I was lost and needed comforting. I have been able to experience some normalcy with my gastro tract this summer. I did find hyomax helped me. However, the symptoms still persist. I finally stopped all my meds as the side effects were causing pain everywhere. I have stopped diet pop and basically drink only water now. I am also losing weight and eating more healthfully. I have taken the reigns this year as far as my health as no one was really doing anything for me.

They have been doing construction in the old building where I work, which threw my asthma into a tailspin. Mold. "Nuff said! I have gotten that under control. Iw as on a nebulizer for about 3 weeks.

I have an appointment on 11/8 with a new gynecologist. My gastro confirmed that endometriosis mimics IBS. I had that which caused the hysterectomy nine years ago. I have that lower right quadrant pain and bloating all this time. Every 2 weeks and lately everyday. I was given birth control just to see if it would work. It did. I purposely didn't take it one month to see what would happen. My "everything is covered because of all these stupid tests that came back normal" high deductible has been reached and I have until 12/31 to figure everything out and get it covered. So, I tested myself. Yep, the pain was back and worse than ever. So, what I think has happened is the endo that wasn't visibel 9 years ago has grown and maybe on my intestines. I am praying for a lap surgery soon and relief. I have finally figured what I think is the one cause for all this.

For those undiagnosed, if your cycles are bad, you may look into this. Unfortunately, laproscopic surgery is the only way to diagnose. Fortunately, its a quick recovery.

So, that's where I am. Happy Halloween and I'll check back in and get caught up on everyone soon.
 
Hi, Meg! Glad you have pretty much gotten your GI issues figured out. When I had GI testing done last year, we met our deductible too, and took the opportunity to get all sorts of things checked out that we wouldn't normally. So I hope you can get your lap surgery before the end of the year. You should get something out of your HDHP, right? That's how I felt anyway. It's still expensive.

Best wishes to you!
 
Hi, I wasn't sure if I should post here as I am no longer a member of the undiagnosed club but was for a long while, but as I was sunshines pillcam buddy I had mentioned it on here.

Well the endoscopy required to get it down showed gastric ulcers which my GI thinks are highly suspicious of gastric crohn's as I am on a acid lowering drug(ppi) already. So he has increased dose of this and repeat endoscopy in 6 weeks....aagh...at least some sedation this time. If they are not healed then for biologicals.

The pillcam was difficult to view due to the amount of blood present but showed areas of inflammation etc indicating active crohns despite being on high dose prednisolone for nearly 2 months and aza. :-(

So continue high dose pred, increase PPI dose, 3 unit blood transfusion...again...
Review 2 weekly with him and he will try and increase aza without my white cell count dropping too much again. If he can't reduce pred, increase aza or the gastric ulcers don't heal then I am to have a biological agent.
At least there were no strictures so I'm happy about that. And at least I now know why it hurts so much to eat, so lets hope this plan works , and I hope I don't need the biologicals.
I am so lucky to have such a nice GI who seems to genuinely care.

Hope everyone is doing ok.
Allie , as it is pretty certain you don't have crohns, would it not be an idea to try an NSAID as this would work well for lupus pain. Something like a cox2 inhibitor (celecoxib etc) is safer for the gi tract. They even say it is probably safe for short bursts with IBD.
 
MEG!!! So glad to hear from you, I have thought about you often and had hoped that you were doing better. If it's endos, I hope you can get that taken care of quickly and feel much better. I don't know how much you've read in the club (we've got our own sub-forum now, how cool is that!) but here's the quick update on me - I'm in remission and doing pretty well. Getting over a bout of bronchitis which made my guts unhappy for a bit but things are back to normal now and I feel pretty good most of the time. Keep in touch, we missed you!

Little Miss H, no worries, feel free to post in here whenever you like. You always have kind words and good advice to give to us undiagnosies, and we like having you around. :) I hope things go well for you and that you don't need to take the biologics if you don't have to. But if you do have to, I hope they work really well and get you to feeling much better.

I'm making this a short reply today, I want to bake a pumpkin pie and watch some scary movies and I have to hand out candy to trick-or-treaters too. Busy busy! If anyone wants to see my costume, look at the "Cat's Halloween Hobby" thread in the My Life/Members Only forum. :) Or PM me if you want to be my facebook friend and you can see the photos there. Happy Halloween everybody!!
 
oh my goshhhhh! Guess what happened??! I went to the Quest Diagnostics Lab to get my stool test stuff and my blood work done, and they said that the stool test they want me to do is the FAT DIET TEST AGAIN!! AGAIN! :( He said something happened to the results and they weren't good enough so I have to go through this again!! :( oh my gosh. and they want me to do a 24 hour urine sample again, and I have to come back to do the blood work they said they want me to do the blood work when i come back to drop off the stool and urine samples. And the blood test they ordered for Addison's disease, was just a cortisol morning test that I have to go in and get the blood taken before 8am. Does that sound familiar to anyone for addison's?? So yeah I have to start the fat diet and do the urine samples and then after I have to get all the blood work done. Goodnessssssssssssss..

Cat, sounds soo fun!! Have fun!! I'm going downtown tonight to see all the cool costumes with my friends!! So excited!! :)

Little Miss H, Pill cam buddy!! :) I'm glad that they are getting you some help and I hope that they can give you some relief soon! I can't believe you have gastric ulcers in your tummy.. :( Poor thing on top of everything else. *hugs!
 
Got my CT results today! I appreantly am "normal" with the exception of an inflammed liver! I am so frustrated, I don't even know what my next test should be or if I should even keep trying. My new "normal" sucks, I want my old life back!
 
Space, what are they going to do about the inflammed liver? That does not sound good
:(

Yep I had a 24 hour urine and different cortisol (some am, some any time) blood tests to exclude Addisons. Rheumy did consult the Endocrinologists as some of those readings were high but they didn't feel any more testing was neccessary.

Things are not good here. I did not recover at all from the flare last week (always have done in the past) and had another yesterday, as well as a one sided headache which I still have. Doing better today on water and saltines. Really really want to go to concert tomorrow.

Did phone surgery clinic about a cancellation, they don't have any right now and he only does clinic 2 days a week. But I can phone back Thurs/Fri to see if any appointments have become available. Things are just so bad 10 days seems like an eternity :( I am so desperate I even cried to Mum last night that I can't take anymore, if I could take the drugs trial now and skip the op I would, but no point asking since they won't agree. You raised your eyebrows at that i'm sure since it's such a radical departure. Certianly I cannot remain like this for long, if the op doesn't lead anywhere, and they are not willing to rush further tests, then I am done and will beg for the trial. I have reached and passed my coping limits!!
 
@Sunshine - I am so sorry you have to repeat these tests! Just awful...

@Space - An inflammed liver?! What does that mean? Are your doctors going to look into this further?

@Star- I know how days seem like weeks when you are ill. Some people just don't understand that. I sure hope you can get in soon.



Well, I finished my 10 days of Rifamaxin. Towards the end, I started to develop mouth ulcers, because it was causing dry mouth. They cleared right up after ending the script. I have been going once daily (near normal stools), a little mucus is still present, but I haven't had any blood since last week. I haven't had too much abdonimal pain, but have been having some rectal pressure again, which has always been an ongoing symptom of mine.
 
sunshine, i'm so sorry you have to do those tests again. you must be so frustrated. did they do a ct scan on you? the kind where you have to drink a gallon of gatorade and then they scan you?

space, sounds like frustrating times for you, too. i hope they check out your liver.

i am having the worst. period. ever. mine aren't usually that bad but holey schmoley this is crazy. cramping like doubled over in pain. yowza.
good news is though, i was having some more mucus and gas, i think related to the PMS. i read chamomile is good for cramping as it is anti-spasmodic and anti-inflammatory and it is really doing me a world of good. not for the period cramps, unfortunately, but it's doing really well for my digestion. have barely had any mucus the past 2 days and gas has gone way down.

so, try chamomile, ladies. i drink 3 cups of tea a day. i'll probably cut down to 2 as my period goes away. it's also supposed to soothe your mucus membranes, and lord knows we all seem to need that.
 
@Star I have no idea really. I got the results by accident from the nurse so I am not really sure that the doctors have even reviewed them. I hope you start feeling better soon!
 
Space, they found stuff going on with my liver too when I had my CT scan. Mine wasn't inflamed, but they found "nodules" as they called it and I was sent for an MRI so that they could get a better look at it. Apparently MRI can see soft tissue better than CT scan can or something like that. Anyway, the MRI found that I have 4 "focal nodular hyperplasias" on my liver, which are basically benign tumors. Long story short, I would imagine they'd probably send you for an MRI as well to take a closer look at your liver. That was my experience anyway. I hope it's something minor like mine was!

Flower, I love chamomile tea. I drink a lot of tea, usually at least 2 big mugs a day, and chamomile is one of my favorites. :) I don't do caffeine and I avoid peppermint because it can aggravate acid reflux, so I do herbal teas only and I usually stick with either chamomile or ginger tea. Ginger is great for anti-nausea and it's good to hear that chamomile is good for anti-inflammation.

Star, I hope you're feeling better enough to go to that concert! And I hope you can get a sooner appointment. It does sound like you're in a really bad spot if you're now eager to do the drug trial. I hope that the appointment comes quickly for you and that you can proceed with either the surgery or the immunosuppressants!

Jill, has your doctor ever offered any explanation for the rectal pressure? That sounds like a very uncomfortable symptom to have, and if the Rifamaxin didn't take care of it then surely something else must be going on. Are you completely off all meds right now?

Sunshine, I'm so sorry to hear that you have to do the fat diet again, that's awful. :( I really hope they can figure you out soon, it just sounds like torture to have to do all these tests. When do you start with the next round of testing?

I'm doing pretty well today although my bowels are still a little messed up. The antibiotics gave me d but then the codeine in my cough syrup constipated me. So I was actually having solid stools because the two effects seemed to cancel each other out, but now I'm off the antibiotics but still on the cough syrup, so I've been backed up and crampy today. Other than that though, I'm doing okay. I'm not going to take the codeine cough syrup any more so that things can hopefully get back to normal.

I hope everyone had a good Halloween! :)
 
Flowergirl, so sorry you are kinda stuck in the flare :( This is terrible for you... they need to get you in and do exploratory surgery or something to see what's going on. :( and i've done the CT scan for my abdomen but i dont remember what I had to drink for it... i think it was some white chalky stuff. Is there any way to see the adrenal glands in a test?? Would they have seen the adrenal glands in a test that they did for GI related issues??

Star, that's weird that even though your levels were high the endocrinologist didn't think to further in any more tests... very strange... Hope they didn't skip over that diagnosis. :( It's so hard to trust doctors... but that's all we really can do unfortunately.

Thanks everyone. I'm starting the fat diet test on Thursday ( which last 4 days) and then I'll do the urine test on thursday also to get it out of the way. and then when I'm done with the stool collection i'll go in and get all the blood work done. So by Monday or Tuesday I should have everything done. I really don't have a clue of what could be going on with my body. and my dad is being misunderstanding again :( just because i had a misdiagnosis now he thinks that everything is fine.. and it's not. i'm still not feeling well.. it doesn't just go away.

I'm going to go to the zoo again tomorrow with my best friend, her boyfriend and me and my boyfriend!! Should be fun! :) We got year passes, so now we get in until next October for freeeee! :) Hope the tummy cooperates with getting up early!
 
Yup, I am off all meds, except for hyoscyamine (antispasmodic). Nope, my GI has never given an explanation for the rectal pressure. She did lots of tests to see if it was a fistula or abcess, but all was normal. The only thing I can chalk it up to be is mucus. It seems when I get the pressure, I eventually will pass mucus. It's like the mucus is not enough to make me go to the bathroom, but it gives me that go to go feeling. I explained my theory to my GI, but she didn't really respond. But you are right, it is very uncomfortable.
 
Sunshine, I'm sorry your are having to do that test again. :( that really sucks. I'm glad they are testing you for Addisons!

Meg, its good to hear from you! I'm glad it came down to endo and nothing else. Hope they are able to fix that soon.

Meg, I don't know how much you read, but here is an update on me. I have tested positive for Lupus, so we finally know whats wrong. Just waiting on my next Rheumy appt to start treatment, hoping I get my official diagnosis then too.

As for me, I'm just having another bad day. I'm getting really tired of this. Fever is making it where I'm hot and cold at the same time, with fever chills as well. I'm exhausted but I slept ten hours, through the morning, which always makes me feel guilty. I'm at the point where I CANNOT WAIT to get back to Germany....I'm having a hard time getting through school, sorority, etc..and i don't have that much responsibility in Germany. I will start looking for a job once I get there, but there I will have a more consistent schedule and not as much on my shoulders. Plus (this is a huge plus), my husband can help me get through this. I miss our teamwork on this. :( I know I will miss the US and my friends, but I never get a break here....
 
jill - i totally had that rectal pressure!!! i know exactly what that is like. i also had the mucus like you. it's the worst feeling. the day after i started remicade, the rectal pressure went away. i still have some amounte of mucus, but not like i did before. i also have a fistula, so i don't know if the rectal pressure was due to that, except that it's off to the side and tunnels thru my labia, and the pressure was all over, not just on that side. it was so uncomfortable because i always felt like i had to go, so didn't want to go out anywhere.
it maybe just be inflammation in the area.
 
omg. I'm on prednisone for my pinched nerve/thumb, and I feel like hell!!! sweaty and hurty and nervous and weepy. really?

on a positive note, I spent money I shouldn't have on that cricut machine and cartridges, and I'm going to make the heck out of some cards!
 
Well my 24 hour urine was normal, and only one or two of the half dozen cortisol blood tests were high. So I was happy with the conclusions of the Endocrinologist on that one.

Still hoping to make it out tonight. If I can it'll be the last time I get to do anything I think, things are really bad in terms of abdo pains and symptoms, knew I would get to this point eventually :(

Fingers crossed I can get into see the surgeon this week.
 
Star, when I really want to go out, but my flare is particularly bad, I usually heavily medicate (with the pressure of my husband too actually). Max dose of pain meds, etc to keep me OK during the event, then planned rest afterwards. I really hope you are able to go out tonight!

Of course I've been doing that so much lately the tramadol has little effect....which really sucks....I want to stop taking it for a little while so the tolerance I've built up goes away, but my pain is always so high that isn't possible. :( Hopefully I will start treatment soon, which would help my symptoms go away a different way, then I can stop the tramadol for awhile. I would have to step down of course, I've been taking it every day since I started back at college. >.< They require wayyyyyyy too many spoons here!!! Can't wait to go home actually...

Carrie, is the pred helping your tummy symptoms? If it does that is something I would bring up to your doctor. I hear the side effects of that medication are awful...I might get put on it soon, it will be interesting!!

So this morning I had a little scare that I don't know what to do about. I went to the bathroom, and when I stood up...the toilet was full of blood. It was completely stained red. Bright red. So, I think it is from my fissure, because I had a particularly large BM. But the thing is, I am feeling no rectal pain, and it usually causes pain to wear it is hard to sit. So then I thought maybe the blood is from my urine, which is even scarier. But when I wiped it seemed like most of the blood was from my rectum (I was still bleeding heavily). That with my intermittent back pain where my kidney is, and the fact that most lupus patients have kidneys problems...kinda scares me. :( I'm going to just drink alot and see if it happens again, and if it does I'm calling my Rheumy. My abdominal pain is also VERY high this morning, and I'm still running a low grade fever...November 10th needs to get here fast! 8 more days...
 
Carrie, I'm sorry to hear that things aren't going well on pred. I'm with Allie, wondering if it's helping your guts at all? I can only speak from personal experience here, but I absolutely loved being on pred - it made me a superwoman! I felt manic but in a good way (if that makes sense). I had tons of energy and unlimited spoons, felt just fabulous (apparently I got the "euphoria" side effect), all gut symptoms went away within 24 hours. And all symptoms came back with a vengeance as soon as I was off pred. I hope that doesn't happen to you, but I do hope things go a little more smoothly in the meantime. How long are you on pred and what dosage are you taking?

Allie, it sounds like you're really doing badly. :( If I were you I'd call that rheumy even if the blood doesn't come back - maybe if they know how badly you're doing, they'll squeeze you in for a sooner appointment? Worth a try anyway. Hang in there! Sending you a big hug and some happy thoughts.

Star, I hope you can make it to that concert - and make it through the concert! Sometimes that's the hard part. Like, I can go to the movie theater but that doesn't mean I'm going to be able to see the entire film uninterrupted by bathroom trips. Anyway, I hope you are able to go, have a good time, make it through to the end of the concert, and not pay for it too much tomorrow. Have fun!

Space, I haven't tried the specific carbohydrate diet myself. I'm sure if you look in the diet part of the forum there should be several threads about it. From what little I know about it, it's just like any other diet - it'll work wonders for some, work okay for others, and not do a darn thing for others. So it's probably worth a try but it isn't a miracle cure or anything like that, in my opinion.

Jill, is the hyoscyamine doing anything for you? I tried taking that stuff a few months ago, but I experienced a bad side effect in the form of horrible nausea and vomiting (apparently mine was a rare reaction, most people do fine on it). I was nauseous pretty much 24/7 and the nausea didn't go away completely until I had been off the stuff for 2 weeks. Yuck! I hope hyoscyamine works much better for you than it did for me. As for the mucus, I frequently pass mucus whether I'm in a flare or not. Before I was on Asacol, I was passing mucus once or twice per week. Sometimes I would only pass mucus with no poo. Since I've been on Asacol, it's been much better and I've only passed mucus maybe once per month tops. I know you were on Lialda which is essentially the same medicine as Asacol - did you notice any difference in the frequency of mucus when you were on Lialda vs now?

Sunshine, good luck with the fat diet re-do tomorrow. It sure seems like you're having to re-do a lot of tests lately! I hope this one gets definitive results one way or the other so that you don't have to go through this again. Good luck!

As for me, my bronchitis is getting better by the day. I think I aggravated it when I went out in the cold on Saturday night in my Halloween costume, as I felt a little worse again on Sunday, but I'm definitely on the mend again now. Still coughing a bit though. Guts are mostly back to normal too. I hit the gym today for the first time in nearly 2 weeks and that feels good. Last time I was at the gym, it was when my bronchitis was just starting, and jogging for only 2 minutes on the treadmill made my lungs hurt. And today, I jogged for 2 minutes again and my lungs didn't hurt - so that must be progress! :) I think I'll try 3 minutes on Friday and see how that goes.

I hope everyone's doing okay today!
 
Thanks Cat. :) I wish I could, but my blood test results wont come in until right before my appointment. :( So an earlier appointment wouldn't be much help, because I'm sure he wants all the test results in front of him to make a decision on whats going on. I will be so happy when it gets here though...right now I'm just going through the motions, hoping to survive until night time where I can rest. 45 days until Graduation!
 
I don't really know if it's helping my gut. I've taken pred before and usually feel like a million bucks too. Not this time. very very tired and anxious. its a medrol pak. I don't remember the dose. I think today is a 5 pill day.
 
Allie, oh my gosh, you poor thing!!! :( I can only imagine how you are feeling... goodness... keep us posted!! Sounds so scary for you to go through, but like Cat said maybe your doctor will squeeze you in if he knows your kidney pain and about the blood and high stomach pain. :( *crossing fingers for you!* Hope tomorrow is a better day for you..

I feel feverish tonight as well. :( It just all of a sudden hit me... I don't like this. and the fact that I'm feeling terrible right now and haven't even started the fat diet yet kinda worries me because i know it's not gonna get better with fatty diet lol... sooo just crossing fingers and hoping that this diet goes well for the next 4 days. and still haven't gotten my mothernature present yet. I'm 15 days late I believe now, and all that's happening is spotting. my body is prob just going through a lot lately so it's just freaking out all together. but we'll see. I read that people with Addison's Disease can get a "sudden stoppage of menstrual cycle"... but idk if that's true or not. Not gonna jump to conclusions, because addison's is extremely rare so yeah. but maybe something from all these tests i'm doing in the next week will show something.

As always praying and keeping my fingers crossed for answers for everyone and some relief! <3
 
I'm sorry to hear everyone is feeling kind of crappy :/ that's never fun. Allie, my endo always wants to keep my blood test results until the appt. very annoying. Cleveland Clinic has this online account management thing though, and they release results to the online thing automatically after a couple days so I can see the actual results.

I really wish they'd do something for you, Sunshine :( Your period isn't possibly late for other reasons is it?


:kiss: have a good day everyone
 
I made it to the concert and had a brilliant time!!!!!!!!! Really paying for it though lol! It was a challenge lasting the whole time but I did it. I knew when I came home last night there was no way I could get up at 8am to phone Hospital and then possibly go in. So I have decided to wait until my appointment next Friday. I am not coping well with the thought of surgery, so I need some head in the sand time. I find if I do that, when I come out and start facing things again, I cope better. Sometimes doing that is the only way I can carry on with my life at the moment!

Really hope I can eat properly (for me) soon, has been a good week and feeling quite weak from not eating much for that long now. It has never taken me this long to get over a flare before :( And it wasn't one of my bad ones!
 
Sunshine, have you been losing weight? I know I once read somewhere that losing too much weight can make your period not happen. Stress can do that too. The only time my period was ever significantly late was just after a good friend of mine passed away. So this could just be your body telling you that it's too stressed and/or not getting enough nutrients & calories right now. Definitely mention it to your doctor just in case it's something other than that though!

Star, so glad to hear you made it to and through the concert! That's got to be a big sense of accomplishment even if you are paying for it now. I'm glad you had fun and now you can rest and recover for your upcoming appointment. Good luck with it! I probably won't be around on the forum much at that time because my best friend is getting married on the 11th. But I know that both you and Allie have appointments right around that time so I'll be thinking of you both and I'll check in when I can!

Allie, my doctors have the same setup as Carrie described - I can get blood work and other lab results online now. That's how I came to discover that my ANA had been tested and that it was negative, I saw it on my online medical records account. If your rheumy has anything like that, the results may have already been posted there - it's worth a shot anyway. Hang in there, only one week to go and hopefully you'll have answers!

I'm feeling blah. Yesterday when I got home from work I ate a little bit of banana bread, which is always a safe food for me, but after eating suddenly my acid reflux went haywire. I was popping Tums and had the heating pad on until I went to bed. Fortunately the reflux didn't keep me awake, but it wasn't a fun evening. I don't know why my reflux went nuts either, the only thing I can think is that I went to the gym yesterday for the first time in a couple of weeks, and exercising usually does rile up the acid in my stomach, but that usually only lasts until I'm done exercising. Things usually calm right down once I leave the gym, so I don't know why my tummy was angry for the rest of the day. And of course reflux always riles up my gastritis too, so today I'm dealing with some nausea and stomach pain. Yuck. I can deal with reflux or I can deal with gastritis, but to always have them happen together like this is just sucky.
 
sunshine - i will second cat's advice. losing weight and stress can make it late. i was hoping mine would go away when i got down to 90 lbs, but no such luck. lol. on a good note, i'm up to 97 lbs now!

star - glad your concert went well. sometimes it's alright to pay for it the next day to get to do something fun. it does a lot for your psyche to get out and be normal.

i think i'm trying to fight off my son's cold. only have a slight sore throat, so hopefully will not get it full blown. last time my boys got sick i only got a sore throat for a day, but i wasn't on remicade then. we'll see how i hold up.
 
Yeah well I have been losing weight, and of course my body has been under a lot of stress due to all these tests and stuff I've been going through. I'm not sexually active so that prognosis is DEFINITELY out of the question! Thank goodness! so I told the nurse and she said she would tell the doctor but it's prob really nothing. I just am SO regular everytime so it's just weird for me to be sooo late. but I'll just keep an eye on it all. not a big deal compared to the pain my stomach gives me! lol.. i'm back on the fat diet again soo here we go!
 
Sunshine, the fat diet began again today right? I'm sure your period will come eventually, but if you're not sexually active then I say don't sweat it! there are so many things that can throw a cycle out of whack, and you've been having a very tough time of it. My period was very regular when I was younger, I lost it for a few years and nothing was ever the same. I take metformin now which helps regulate things and make my period come, but I only really care when it is such that I am prepared.
 
Carrie, your blog is fun! I don't do a whole lot of papercraft - I'm more of a fabric & yarn kind of girl - but it looks really neat. I don't suppose you plan on posting any tutorials on how to make some of the flowers and things?

Sunshine, how's the fat diet going this time around? Do you still have to eat junk like burgers and fries? Yuck! I know some people like eating that stuff, but I was never into fast food even before I got sick. So I feel for you, it doesn't sound like a fun diet, especially since you're not feeling well already. What's the next step after the fat diet? More blood work? When do you go back to the Mayo clinic?

Flower, don't underestimate that cold! That's how my bronchitis started, I just barely had a cough and a tickle in the back of my throat, and it stayed that way for nearly a week. Then it went haywire, my throat hurt horribly and I was coughing up multi-colored mucus (green, yellow, and brown/bloody) and I got a fever and just felt awful. Take care of yourself, rest up and drink lots of fluids! I hope it doesn't get any worse. I haven't been on Remicade myself, but my best friend is and she seems to get every cold and virus going. She doesn't seem to have too much trouble fighting them off fairly quickly though so I hope that's the case for you too. Feel better soon!
 
Thanks, Cat! I haven't really figured out/decided whether or not I should blog everything in the same place or have separate blogs. It will probably make sense to have a separate one for fiber (spinning, knitting, crocheting). we'll see. It may be a little bit before I'm back on that with the christmas card making.

I could probably do a tutorial. in pictures. no video :D
 
Thanks Sunshine. :) It hasn't happened again so I'm betting it was my fissure. The no pain part is so weird though. 7 days until me appointment!

I get my test results either online or over the phone, but its the same system. They leave voicemails on this system saying what the blood results found...not the actual data. I checked it last week and there was a voicemail saying "everything is normal". It was left on the 31st...so I'm betting it was the further work after the ANA. I'm wondering what that means, but with lupus blood tests aren't the whole shibang, except ANA. Some have certain results with other values, but not all. I'm still just really hoping he goes ahead and diagnoses me and treats it, or tries medication and diagnoses me when it works....
 
Hi Everyone

Hey guys...

I've been here this whole time- just that I don't have much time to post... So...

Allie- yay for you that they found out what's wrong. Sorry it's Lupus but at least now you know that you really are SICK (which you knew all along but now it has a name) and now hopefully you can get treated and finally feel better for a change. :tongue:

Sunshine- sorry you are having to do all the tests again. Yuck that's terrible :yrolleyes: I really hope they can find out what's wrong soon! At least you can go to the zoo and try to have some fun! Say hi to the giraffes for me. :lol:

Cat- I am doing some better... at least my tummy troubles are doing a LOT better lately (knock on wood) but now my migraines are giving me trouble. Had to take a "spoon" day yesterday- I was so sick- my head and neck hurt so bad, my eyes were almost swollen shut and could NOT move my head. It was so bad. But I am back at work today so it's better. But now it seems that I have a hemorrhoid. Never had one before- what should I do about it? Anything? It kind of burns and itches- weird. :eek: Will it go away on its own?

I really hope everyone is feeling better today!!
 
Sorry I have been MIA. Work has been really nutty lately! I usually can usually shut my office door and cruise the forum all day without an issue. Gosh, so annoying how work gets in the way of my forum time! LOL

@Flower - I am glad Remicade helped your rectal pressure. It is soo uncomfortable, isn't it?

@Carrie - I love paper crafts, too! I love scrapbooking. I do one for every trip we go on. I have a few of pets, too. Wait until I have kids; I will be out of control!

@Allie - Where are you graduating from? What degree are you pursuing? Boy, it will be a big weight off your shoulders once that is done!

@Star - I am glad you got to enjoy your concert! I hope you are feeling a little better today after some recoup time.

@Cat - How is your reflux today? I hope it is better than yesterday.

The hyoscyamine really seems to work for me, Cat. Ever since I started it, I noticed it helps with the abdominal pain. However, I still have some painful days, but overall, it makes a difference. And no side effects. As far as the Lialda, I think I am doing better off of it! Immediately after stopping, I started to have more formed BM's and I still am. And I only go once a day! There is still mucus, though, but only when I have a BM. I can pass mucus without a BM, like you said Cat, but not lately. However, I am not sure if there is blood present, too. As I had mentioned, I screwed up my birth control, so I have had this never ending period. It's been well over a week now, and it is still heavy! So, when I have a BM, I always have to pee, so there is no way to know if the blood in the toilet is from my BM or period.

My parents and husband are all getting excited, because they are convinced I must not have Crohn's being that I am doing relatively well without my meds. However, I am still not convinced.

I can't get over the fact that my first scope in July 2010 showed inflammation & ulcers in my TI & rectum and that I have been passing blood on and off ever since. I think it is hard to chalk these things up to anything other than IBD. I mean, sure, could I have had an infection during the first scope as my current GI surmises. Perhaps, but my blood work was all normal at the time. Wouldn't an infection shown something? And as far as occasionally passing blood with a BM, I don't have a fistula, fissure or hemmie. So, though it is minimal, what else could cause bleeding? Could the Lialda have been responsible for my odd bowel movements and bleeding all this time???? That's the ONLY thing I can come up with to be a cause other than IBD. I am sorry for my long post. I have a lot going on in my little head these days. I just wish there was a way to get some real answers...wouldn't we all...
 
heehee Jill! I've never scrapbooked, but I'm going to give it a shot, I think. I'm not quite understanding the concept which sounds utterly bizarre. I mean, I get that it's to showcase a memory. we never had photo albums growing up. maybe that's part of it. I'm used to just having a picture and nothing else special with it.

We found out last night that my mil has stage 4 kidney disease. She also has active crohn's, and has had intestine removed in the past so her nutrient absorption is low. We're (Kelly and I) pretty pissed off that they're only just noticing now, at stage 4. Really?! The woman just had tunnel surgery for kidney stones a few months ago, and they didn't notice any issues in blood tests then? I swear her doctors suck so bad. I wish they'd contact a lawyer and move up here to go to Cleveland Clinic. argh.

I'm so glad tomorrow is the last day of the pred. It hasn't done anything for me except give me side effects. maybe it was too low a dose. I looked today and it was 4mg a pill so what's that, 28mg on the first day? it tapered immediately. It's possible its helping inflammation in my body, just subtly. eh.

I've been having a hard time sleeping lately. Everywhere I look I'm reminded of my mortality and how shitty my longterm looks. It's starting to sink in the thing my rhuemy always tells me, "you're so young to be on so many pills. it will just go up as you age."

I'm glad my cricut comes today, because I'm going to sink into crafts all weekend. I'm trying not to feel too guilty that I spent money on something to cheer me up instead of sending it towards a credit card bill. what's done is done. I just need some more willpower when it comes to rampant consumerism.
 
Shan, I had a hemorrhoid for a few months. It eventually went away on its own. It wasn't fun though and it was pretty painful when it first appeared. All that stuff like Preparation H didn't do anything for me. Calmoseptine got me some temporary relief, but didn't seem to shrink the hemmie. Then I found the vitamin E treament and that actually seemed to help somewhat. You take one of those vitamin E gel capsules, poke one end with a pin, and squeeze out the gel directly onto your hemmie. (Wear a pad as it can get a little messy and soak though your pants - I learned this the hard way!) Here's a link with more info (skip the parts about eating more fiber!):
http://www.doctoryourself.com/hemorrhoids.html

Jill, it's possible that you were experiencing a side effect of Lialda and that's why it didn't seem to be helping - diarrhea, nausea, abdo cramping, etc are all potential side effects of mesalamine. When my GI put me on Asacol, he was very concerned that I'd get one of the rare bad side effects (namely pancreatitis or kidney failure) but I haven't experienced any side effects whatsoever from it. I think side effects like nausea, d, and headaches are fairly common with mesalamine. I googled it and came up with this link.
http://www.drugs.com/sfx/mesalamine-side-effects.html

My reflux is much better today - but I plan on hitting the gym this afternoon, so it could very well flare right back up again. Wish me luck!
 
Shan, thanks! Yeah, it sucks its Lupus, but its not like I just got it...I needed the name for what I already had!

Jill, graduating will take a huge weight off my shoulders! I left Germany (and my husband) to come and finish my degree this semester. I had left school and moved to Germany with my husband (he is a soldier) because of my illness, and I came back without being diagnosed because this had been planned a year in advance. It has been the hardest semester I have ever done, because I am dealing with untreated disease while doing 9 hours of school (all three classes have group projects) and being active in a sorority, so I am VERY ready for it to be over. At this point I look forward to times of rest because I am always in tons of pain and very tired, but I have to keep pushing forward to finish my degree. :/ At this point I don't know if I'm going to get a job when I get back to Germany...I think I need to get this disease into remission first, its sucking the life outta me.

I've had a really bad day. Woke up late, but still extremely tired. Ate breakfast, which put me in a ton of pain, and I've been on a high dose of Tramadol ever since. I'm shaking and just ready for the next month to fly by.

I did have a successful few days of crocheting though...almost done with my first custom order, a huge american flag blanket. The actual blanket it finished (and is really awesome), just need to finish the stars. I also made an ipod sock for one of my sorority sisters, a bright blue one with a pink flower and a button. Its is super cute. So the business is starting off well, lots of custom orders...just no one really checking out my blankets on Etsy. Hoping to change that soon, because I know the custom orders from friends won't last forever.
 
Allie, great job with your blankets!! They look so cute!!! :) love them! You're very talented! :) and I'm sorry you don't feel well... :(

I'm tired of feeling left out :( All of my friends always get to go out and hangout and just have fun, and I'm always stuck at home. :( It's hard.. Anyone else feel like that too sometimes?
 
I'm going through the same thing tonight. :( All my sisters went out to eat tonight and I didn't have the strength. I have to stay behind all the time, but they are starting to understand....

going to go crash now for an early morning with sisters! Speaking of stuff that has to be done...
 
Frustrated

I'm 26 and have had gi issues for the last 2 years nausea vomitting diarrhoea and now bleeding from the back passage. Every test has come back negative and I'm so frustrated is there an end in sight or will I have to go between doctors when it can be so sore
 
Sorry to hear that Gracielou, its def frustrating when all the tests they do dont answer anything. Hang in there!
 
how is everyone today? For me, it's definitely a Monday!

I did a bad thing and let myself eat guacamole and tortilla chips for lunch even though I could tell almost immediately it was ripping me up. why? ugh. it was the onions. there were too many onions in the guac. once upon a time I was able to eat onions. I still can if they're cooked and used as a flavoring in food, but not the food itself.

my coworker bought me a 20lb bag of rice!
 
I'm doing good and bad all into one...My roomate gave me her cold....first time with cold/flu since this flare started 17 months ago, so I'm freaking out. I don't want to deal with a cold on top of my untreated AI illness. :( So this morning I got up and went to the store and got a ton of stuff to fight it off. Yuck!

Good things today is that I have had some pretty good convos with my hubby which have made me smile, and I'm selling my first blanket today. :) Its a giant american flag, custom order, so I'm glad to be done with it!

Saturday Night I went to bed early and planned to sleep until I felt like getting up to recover from the stressful week. Well, I ended up on the toilet for most of the night. :( My body did not agree with what I had for dinner (hamburger from Dave and Busters....) and it wanted it OUT! The cramps were so bad. :( I finally crawled back into bed at about 4 (5 really since the time had changed), and then my sister next door was having abdominal pain, and ended up calling an ambulance at 6:30. She ended up having a ruptured ovarian cyst. After the ambulance left (and some of my other sisters went to the hospital since I had my own stuff to deal with) I slept till noon. Oy!
 
Carrie, I can't do onions either. I can do just avocado, but with guacamole there's onion and probably garlic and other stuff I can't have in there. Can you have just plain avocadoes? Also, what kind of chips did you do? If they were corn tortilla chips, those always cause me problems too. I can do potato chips but not corn chips. And certain chips, especially Pringles, I have to chew to a pulp or I can feel them going through - it's like the sharp edges are scraping every inch of my intestines. Not fun! So yeah, give plain avocado and potato chips a try (personally I prefer Lays chips, as they have no MSG).

I'm exhausted today. I *hate* when there's a time change. Whether it's going back or forward an hour, either way it throws off my whole sleep schedule and I end up feeling tired for about a week. I really hope that they stop doing daylight savings time soon. Lack of sleep or poor quality sleep means my guts aren't the happiest.

Hi Gracielou, welcome to the club and the forum. Would you mind telling us a little more about yourself? What tests have you had done, what does your doctor say? Have you had any other symptoms like weight loss, fever, rash, joint pains, etc? Are you seeing a gastroenterologist or a GP?

How's everybody else today? Allie and Star, I know you've both got appointments later this week, I'll be thinking of you! My bestie is getting married on Friday so I won't be around the forum a lot on Thurs & Fri, but I'll check in on you two when I'm able to and will have my fingers crossed that you can both make some progress! Allie, I really hope that you get a diagnosis finally and can try some treatment, and Star I hope that you are able to proceed with the laprascopy and soon! Hang in there ladies, not much longer to go now.

Sunshine, are you done with the fat diet? When do you go back to Mayo? (Sorry if I already asked that in an earlier post, my memory is crap lately.) I thought of you when I went to the zoo yesterday and saw the giraffes - but as you saw on Facebook, they weren't very nice giraffes!

How's everyone else today? Jill, May, Shan, Dayz, anybody I'm forgetting?
 
it was at the cafeteria so there weren't really any choices. I can do plain avocado and guacamole that I make myself (no to very little onions. I add salsa to my homemade guac so it depends on whats in it). I can usually do corn chips as easily as potato chips, but I was up early before work this morning with D so all in all I should have known better.
 
I can't even do homemade guac - I can't do salsa. :( Even the mild stuff gets to me. Anything remotely spicy, including garlic and taco seasoning, seems to anger my guts. I can do ginger (which I always though tasted like spicy soap, but the spicyness of it doesn't affect me the way other spices do) and mild spices like oregano, but anything more than that just causes problems. I really miss salsa, garlic, guac and Mexican food in general. *sigh!*

Speaking of foods I can't eat, I polished off an entire BAG of Reeses peanut butter cups. I usually avoid peanut butter like crazy because my guts don't like it and it makes my reflux go haywire, but a co-worker brought some in and then my dad gave me 2 bags, and I just lost all willpower. Ohhhh, they are so good though! So what if I need to have 6 or 8 Tums afterwards... ;) On that note, I need to be hitting the gym soon to work off all these peanut butter cup calories! Eek!
 
taco seasoning can be difficult for me, and I think garlic is starting to act up (sucks! I love garlic. I use it all the time.) I used to do medium/hot salsa, but they really hurt me now so I use mild. I also don't eat salsa as much as I used to. I really have to be craving it.

I'm kind of back and forth about the food stuff. I mean, I spend most of my time eating pasta or rice. If I'm going to make a nice dinner, I'm going to generally eat it and suffer the consequences later. I mean, according to the GI there's nothing wrong with my intestines right so technically I can eat whatever I want :p :p :p

follow-up to the pred: it didn't do shit. well actually, that might not be true. my tramadol constipation was annihilated so I'm back to bathroom hell which means its causing me to shit if nothing else! :rof:

I love reese peanut butter cups. I seem to do ok with peanut butter. That sucks that you have issues with it :(
 
I spend most of my time eating pasta too! Its one of my only safe foods.

Pred fixed the tramadol constipation? Interesting. I'm actually liking the constipating effects of tramadol...its the only reason I'm kind of regular! :p

Cat, that does suck you have issues with peanut butter. :( I lose my will with a bag of those things too. The kicker is the fact that they are individually wrapped...you see the pile of wrappers and just think..."crap." :p
 
Hi Gracie! I am sorry to hear you have been battling GI issues for 2 years without answers. As Cat asked, what testing have you had done? Has anything been suggestive of IBD? Be sure to share your story over in the My Story forum, so you can be welcomed with open arms!


Are you going to be Maid of Honor at the wedding this weekend, Cat? I swear, I will never be Maid of Honor again - I hate giving speeches! I can't even enjoy the day because it makes me so nervous!


I hope that cold clears up quick, Allie. How is your sister doing today?


I had a busy weekend. I had some company over on Saturday night. I ate poorly (as you said Carrie, I should have known better), so I woke up on Sunday with an upset stomach and had to use the bathroom right away. I thought I was going to have one of my bedridden days, but I just went to the bathroom once. I did have some ongoing ab pain, but it wasn't too bad. So, overall, I am doing pretty good (knock wood).
 
I think what I'm saying is that the pred only caused me trouble this time around. It takes a lot to make tramadol constipation turn into diarrhea. especially when I've been taking like 6 pills a day recently.

My throat has been acting up real bad. The doctor didn't see any infection and didn't seem to understand where I was saying the pain was. I could see where my throat was swollen, but maybe it only looked so to me because I know what my throat looks like. (I'm not the only person who looks at their throat in the mirror am I? I have big tonsils!) so anyway I've needed more tramadol to combat the pain from the throat, the pain from the pinched nerve, the normal pain, and the additional pain from forgetting the muscle relaxants for a few days. My throat is feeling better today, and I'll tell you why I think that is. Like I said, my tonsils are very large and each one has a huge crypt at the top. The big crypt on the swollen tonsil was open slightly so I kept poking poking at my tonsil and I think I got something to pop out of it. grossssss. I hate my tonsils, but I don't think I'm ready to go the operation route on them.

edit: Allie, I agree about the tramadol.. I like it's constipating effects generally.
 
Hey all, I've been a bit MIA, (working on crochet projects) and I don't have the time right now to read through and see how you're doing, but I have a quick question and I'll come back later tonight haha.
What could it mean to pass black stool with a little bit of blood? I had that this morning. Also I felt hungry today! I couldn't eat much but at least it's a start. I haven't felt hungry in 5 months!
Okay, talk to later everyone, hope you're okay!
 
Jill, thanks for the good wishes. :) My sorority sister is doing better. They treated her well at the hospital, thank goodness it was only an ovarian cyst. She just needs to rest!

Dahlface, black stool can mean blood at the upper parts of your GI tract. Its not a good sign. If it continues I would bring it up to your doctor!
 
dahlface, how black? Sometimes I pass mud/pudding stool that is so dark it's nearly black, but it's not blood black. if you think it's blood black call the doctor for sure! if the little bit of blood is red then it probably came from your rectum area, not further up like black blood would have.
 
Jill, yes, I'm the maid of honor - but it's not bad, because the wedding is going to be really small and low-key and I won't have to give a speech or anything like that. It's literally only the bride (my bestie, who happens to also be a Crohnie), the groom, me, my hubby (best man), the bride's son and groom's daughter (from previous relationships), bride's parents and sister, and another friend who is officiating. If I counted right that's 10 people total including wedding party and guests! And, the wedding is in the morning, so we're all just going to lunch afterwards and then the bride & groom are heading on a mini-honeymoon to Chicago. So it'll be easy & quick and over with after lunchtime! I get to wear a dress of my choosing so I'm wearing something I already had, which means I didn't even need to spend money and I don't have to wear a tacky bridesmaid dress, I can just wear a regular dress. :) It should be an easy event to get through! The bride's mother has Crohn's too so they picked a place for lunch that has some "safe" menu options for us three. Yay!

Carrie, that sucks that pred only brought the d back. :( I know that steroids don't work for everyone, even those with confirmed IBD, so that doesn't necessarily mean anything. It would have been nice if it did something besides that though! And with regards to you gradually having to phase out the spicier foods, my bestie (the one who's getting married) is the exact same way. She used to be able to drink some alcohol and eat fairly spicy stuff even with confirmed Crohn's. Recently though she is finding that she can only handle mild spice and very small amounts of alcohol or she gets horrible pain. On occassion she'll still try to eat something spicy but she always has to pop a pain pill right afterwards. It sucks to have to give up favorite foods like that. My ability to eat spice and drink alcohol went out the window as soon as I first became ill, so I never even had that gradual step down like you and my bestie. I went immediately from, I can eat most things, to I can't eat much of anything. :(

Dahl, what Allie said is true - black poo could very well mean blood. Dark blood is more worrisome than bright red blood, generally speaking, so that's not good. It could mean other things too though - have you taken anything like iron supplements or Pepto bismol lately? Those can turn poo dark. Stuff like spinach sometimes turns my poo dark or green, and mushrooms show up as black globs in my poo. So take a look back at what you've eaten and taken - food, supplements, meds, anything like that. If nothing seems to be the cause then it probably is blood. And if that seems to be the case, let your doctor know ASAP. They'll probably want to do a stool sample and maybe blood tests to see if you're anemic. Good luck, I hope it's nothing! Keep us posted!

I just got back from the gym, but boy was it a chore today. The exhaustion isn't helping any, I felt so slow and like I wasn't getting much actual exercise. Add in the extra reflux from the Reeses cups and the fact that ANY abdominal exercise seems to give me acidy burps and upset my reflux further. Oh yeah, and the lights in the gym still aren't fixed - there are fluorescent lights in there, and several of them on one side of the gym are burning out and flickering like crazy. It's just like a strobe light, and it makes me nauseous to even look at. I have to clamp my eyes shut tight when I'm in that part of the gym that has the flickering lights or I get so nauseous that I can't continue exercising. Sheesh! If the lights were fixed and I could lay off the peanut butter cups then things would go a lot better. I put in a complaint about the lights last week but I guess they had to order parts or something because it's more complicated than just changing the bulbs. And there's no light switch, the lights automatically come on when the gym door opens or in response to motion, otherwise I'd be tempted to work out in the dark! It couldn't be worse than working out under a de facto strobe light!
 
Allie, I forgot to respond to you - YES, I feel awful looking at the big pile of wrappers from the peanut butter cups! I read once that symptoms of alcoholism include hiding alcohol or empty alcohol containers. I definitely hid the empty wrappers so that hubby didn't see how much I had eaten - does that make me a peanut butter cup-aholic? It doesn't help any that there's so much garbage when you eat even one peanut butter cup. There's the outer wrapper, then the brown cup and sometimes there's a little white square of cardboard underneath it. That's a lot of trash and when you eat 4 or 5 of those things it's like a mountain of shame! :( There's another unopened bag of peanut butter cups at home, and I'm thinking I might donate it to a food bank because I really cannot eat that bag too! Eek!
 
:bigwave: I'm here, Cat, thanks for asking. Everything is reasonably normal with me for the time being. Just reading everyone's posts. Gleaning, lurking, etc...

Seems like everyone is getting colds everywhere. I think my daughter had a really mild one a couple of days ago, so I'm waiting for everyone else to come down with it. Usually I don't. So that's nice. Or if I do, it's after everyone else, since of course I have to take care of them when they're sick. ;)

Hope everyone gets to feeling better soon.

Hope your friend's wedding goes off without a hitch. Maybe since it's a wedding I shouldn't say that. Hmmmm...
 
Oww. Okay, I'm in pain and need advice. I've gone poo about 8 times today. It's been solid, no d. I don't feel like I'm in a flare. But, every time I have gone, my anus has hurt more and more. I just took a bath and did a little self-examination down there, and my butthole and the immediate area is quite inflamed. It really hurts! The last time I pooed, there was blood on the outside of the poo and also a little on the TP. It doesn't feel like a fissure nor a hemmie - it just feels like my backside is so inflamed that some red blood is coming out. Hubby suggested I put some prep H on it to try to shrink things down, and that burns. I'm sitting on my donut pillow and that's making things bearable.

So, what would you guys do? Just self-treat and hope it goes away? I don't want to call my GI - if he hears that I've had ANY troubles while on Asacol, I'm sure he'll take me off of it again and I don't want that. I really think Asacol is helping but my body still wants to be inflamed from time to time. I thought I was in total remission lately but perhaps I'm still just hovering somewhere nearby remission. And, what do you guys think - should I continue with the prep H, or should I go with Calmoseptine which cools and soothes but won't shrink the inflammation, or something else? Vitamin E? (That's what somewhat shrunk the hemmie I had awhile back.) Ugh, I just hate this! I feel like I'm in remission but my guts still don't give me much of a break. I'm crampy too - but no d. Even peeing hurts though. Can eating a few too many peanut butter cups cause anal inflammation??? I can't think of anything else I've done or eaten to upset things so much back there...
 
I usually sit in the sitz bath, take tramadol, then eventually slather salve on it. I get inflamed when I've had issues, even without D. Just try to get comfortable and see how you're doing tomorrow.
 
I don't have a sitz bath nor a tramadol prescription. :( Tylenol's the only pain med I've got. Hubby does have leftover pain meds (either Vicodin or Percocet, possibly both) from when he had his kidney stones, but I'm not ready to go there yet. Yeah, I think I'm going to go to bed early tonight and hope that this is at least somewhat better tomorrow. And tomorrow I'm going to look for a sitz bath - where do you buy them? Walgreens maybe?
 
yeah I got mine at walgreens. you can sit in the tub. it's not quite the same because with the sitz bath your bottom is suspended in the water, but it could help. when I feel like crap if I can I'll try to sleep. at least then you're not aware of it!

speaking of... I think I'm going to go to bed.
 
Ow, Cat, that sounds painful. I was thinking today when you posted about your game, "wow, she's gone to the loo quite a bit today!" I would think going that many times could definitely prove irritating at the least. And if you are sensitive to foods, then I would say either the chocolate or the peanut butter might be an annoyance to your system in large quantities. Maybe once it all works out your ass will settle down. :) if you start bleeding badly or the pain gets unbearable you might call your doc. Even if he spazzes out and takes you off the Asacol, there might be real anal inflammation that decided to start acting up for some reason and he might be able to see it or something. Just tossing that out there. Hope you feel better. Hopefully once your butt gets a break from going it'll not be so sore.
 
Cat, that sounds a lot like what I go through regularly! I couldn't imagine taking something as strong as percocet or vicodin for it. o_O I just wait for mine to settle down, and it usually does when the D slows down.

This makes me wonder...does prep H actually work, or any other cream for hemmies? I've had mine for so long, and I've never used cream on it. If I could use something to get it to shrink that would be awesome. My doctors have always just suggested warm baths.
 
Cat, sorry to hear your having troubles :( :( :( hope you have a better day tomorrow.

I turned in my fat diet stool samples and my 24 hour urine this morning. they don't have any appointments to get blood work done before 8am until next monday!! gosh so far away... I wish i could just drive up to the mayo clinic and have them do the blood work. :( and tonight at around 7 i started getting those sharp pains near my stomach, under right ribs that radiates to my right side and right back... it's so bad that i can't move!! :'( it hurts if i move back or forwards. so i have the heating pad on... but this is terrible... :'( It's gotten worse as the night has gone on. I feel fever ish again, head ache, nausea, everything.... :( Going to call mayo clinic tomorrow morning and tell them my update of how i'm doing..
 
Thanks all. I'm doing somewhat better today. I think the prep H is helping somewhat. When I had that big hemmie awhile ago, prep H seemed to do nothing for it. But it does seem to be helping this time around, I have no idea why since I don't seem to have an actual hemmie this time, just anal inflammation! I'm going to avoid all chocolate today and just eat really safe foods and try to get things back to normal. I promise, no more peanut butter cups! Allie, as you mentioned, I have been through this kind of thing before too, but never this severe and it was always when I was having a lot of d. I went poo I think 8 times yesterday but it was always formed, no d, so I don't know what's up with that. Peanut butter cups seem to mean frequency but no d I guess! And frequency means a sore bottom. So I am swearing off the peanut butter cups! Never again, no matter how tempting they are! It's not worth an inflamed bleeding ass!

Fortunately I'm a little better this morning, although I barely slept. I kept waking up every hour and looking at my alarm clock, and then it was like every 10 minutes that I was waking up so I got up. I've poo'ed once this morning and fortunately no blood this time. I think I might take my donut pillow to work because that seems to be helping quite a bit. What do you guys think - I have two different desks that I sit at during different parts of the day, so I'd need to carry my donut pillow back and forth with me, and my co-workers would see it and know I've got butt stuff going on. Is relief worth being gossiped about? I could put the pillow into like a bag or something when I carry it between desks, perhaps then people wouldn't notice. What would you guys do?

Sunshine, I'm surprised they don't just let you do a walk-in appointment to do the blood samples! It seems like Mayo is a long drive for you so maybe they want to make sure you get a proper appointment set up before you go all that way? That's all that I can think. I really hope they figure you out soon, it sounds like you're suffering badly. What blood tests are they going to do? Do you have any Addison's or autoimmune tests coming up?
 
I agree with Carrie, that relief is the main thing.
But if you feel more comfortable being discreet with the pillow, then I think the bag idea would work. Don't other people with back issues use those pillows anyway? Don't they relieve pressure off the spine in general? So then your co-workers might not even think that you were using it b/c your bum hurts.
 
I decided against bringing the donut pillow. I remembered that I had promised to bring some stuff for the food drive and I just couldn't carry all of it, plus it's pouring rain and I didn't want to risk dropping the cushion in a puddle or anything, so I left it at home. I did stop at Walgreens to try another type of hemmie cream, and I'm glad I did. Prep H seemed to work okay but gave me a very warm sensation that wasn't totally comfortable. Calmoseptine has a cooling sensation but won't lower the inflammation. So I bought some of that Tucks cream and that seems to work a little better than Prep H but without the heat sensation.

I'm not flaring (no night sweats, joint aches, etc) but I really don't know what is up. I was pretty nauseous earlier this morning and took a couple Zofrans. Then I tried drinking an Ensure and my guts cramped up quite a lot. I'm sticking with tea and water for now and doing okay with that but I do feel kind of weak and I've been having intermittent chills too. I'm going totally low-res for now, plain rice & pasta for me today. Don't want to push it at all, I need to be well enough for my friend's wedding on Friday!

I hope everyone else is doing better than I am. I feel like a wuss for complaining about some butt pain when a lot of you guys are going through far worse. Sorry for being a whiner - I think remission has made me go soft! I hope everyone else is doing okay.
 
Sorry to hear you're not so good Cat :(

I'm not either, sleeping so much since the concert, and I mean alot!

Also going through another phase of not being able to keep in my evening meal. This happened at the start of my illness and seems to re-occur intermittently. Rice stayed in last night but I don't want to be eating that every night until my guts decide to keep something else in!

Really nervous about Friday and having to go to the appointment alone. Mum can't get time off work and don't want to ask my Aunty since she has her "MOT" cancer check up this week and I know she is finding her work hard and tiring. Would rather ask her to come with me to the actual op as that is more important.

Think I will feel better once I know the procedure and had a chance to ask all of my many questions, but only a little bit. The thought of surgery is really freaking me out, never been put to sleep before, this is such a big step-up from what I have had done in the past. Family reactions to anaesthesia aren't good either so I am nervous about that, my general health is already so bad, and the bad reactions occured when family were healthy!
 
Cat, don't think you are whining! Any kind of pain or discomfort is terrible in all of our situations! and being in remission for so long, i'm sure it's just very startling for you to be feeling so bad so fast! :( I'm so sorry to hear you aren't doing well. I hope it gets a little better as the day goes on.. :(

Star, I wish you didn't have to go alone, it's always nice to have comfort for meetings with doctors. I know, I don't ever like going to the doctor's office by myself, I just want someone there to take note of what i'm hearing as well. But, please know that we are all there for you in spirit!! :)

As far as my tests, I've called every blood lab near me and 25 miles away and no one has any 8am appointments or earlier until monday! I really wish I could just go up to the mayo clinic and have them do it there, but I know that's not possible really. I'm just gonna try to go in every morning at like 7:15 as a walkin and see if any openings come up before 8am for me at the blood lab near my house.
I called the mayo clinic and told the nurse practitioner about how i couldn't move the whole night because of this pain and that i've had this pain prior to yesterday, and she just said she would pass the message on to my doctor. but that was like 3 hours ago and no one has called me. so maybe they won't call, but I sure hope he gets the message because that might help him figure out what's going on... I don't know, the one thing i've realized is that any discomfort or sign could be an important one! so, when I have pain I'm speaking up to them!
They ordered a couple different blood level tests, here they are:
Serum, VIP, Glucagon, and Calcitonin, and something else that i can't read haha. like gastron or something like that idk hahah! :p and then they ordered the morning cortisol level for screenings of addison's disease.
 
Star, that sucks that you have to go to that appointment alone. I usually go to appointments alone but sometimes I can convince hubby to come with. Now that he's working more, that's not really possible anymore though. So I go by myself, armed with my multiple pages of notes and questions. In a way it's good because when I go by myself, I really realize that I need to advocate for myself because there's nobody there with me to hold my hand and help me along. So I've become a lot more assertive at appointments and that's definitely a good thing. I hope your appointment goes well! I'll be thinking of you and have my fingers crossed that all goes well! The thought of surgery is scary, no doubt, but hopefully if it happens then it'll be well worth it. I believe Crohn's Mom (Tracy) had laprascopy recently, so perhaps she can put some of your fears to rest.

Sunshine, thank you - I am doing a bit better this afternoon. I've been applying that Tucks cream every time I go to the bathroom and I'm starting to feel less inflamed down there. At any rate, I've managed to sit all day with no donut cushion and I'm doing okay! I even ate a little lunch and after some initial cramping, I'm doing okay now. I've poo'ed 3 times today, much better than the 8 times I went yesterday, so hopefully I'm on the mend.

I hope you're able to get a walk-in appointment at your local blood bank, and I hope those tests can shed some light as to what's going on inside you! I'm not sure what most of those blood tests are (VIP? Doesn't that mean very important person?) but I hope they're good ones for autoimmune stuff. Do you know if they're going to test ANA? That's the one that Allie had that indicated Lupus. I had that test as well but mine was normal/negative. I think that one can indicate other autoimmune illnesses as well - my GP had mine tested when they first thought I had arthritis, he wanted to see if I had rheumatoid arthritis. So anyway, make sure to ask about that one if it hasn't been done already or if it isn't in the plans. Good luck! And I'm glad you're done with the fat diet, hopefully for good this time! :)
 

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