Mini-vents

Crohn's Disease Forum

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My mini-vent today is that I had a date night with my husband (the first in I can't remember how long) and I ate half a pancake (I love breakfast for dinner) and was in the bathroom for most of the date. Is it too much to ask that I can go out to eat with my husband and enjoy some time with him, instead of running back and forth to the bathroom?
 
Mini-vent for today.....

Just started a new antibiotic yesterday. Hubby decides we will drive out to his grandmother's for a visit, no probs I love his grandma.

I live in Spring Break Hell, traffic was terrible. Halfway there, I feel the gurgle and then get punched in the bowels. I didn't say anything, but hubby could tell I had to go by the white knuckles.

My hubby is driving with purpose to get us there now and we get stopped by a train. I was practically crying, fortunately we came up on the end of it. Two miles later, we get stopped by a funeral coming out of the Catholic church.

And my husband doesn't understand why it makes me nervous to leave the house.
 
SarahAnne-This is me EXACTLY!!!! We must be Crohn's twins...that's why I've just embraced Depends-the ones that look like women's granny panties. I resisted for years but I decided I've ruined enogh clothes as an adult.

The kicker was when myhusband and I were headed for San Diego for our anniversary and near Camp Pendleton some idiot decides to have a police standoff on the freeway because he got in an argument with his wife. After three hours of this, my stoach starts gurgling with no toliet in sight...you can guess what happened after that-luckily we had a plastic bag in the car. It made checking into the hotel inneresting...

So now I wear the Depends and stretchy pants on car trips. Then if we get stuck, well whatever happens is gonna happen!:poo:
 
Okay so on the 1st of Feb I had an MRA (MRI with dye). By the 8th of Feb i've had a phone call to say it needs to be done again (pictures weren't good enough on top of complications with the procedure), appointment booked, letter from Rheumy saying the same, and arrangements made to avoid complications that happened first time around.

29th Feb I have the re-test and still not gotten the results, saw Rheumy 22nd and he promised to write with them (don't see him again until end May).

I am furious, what the heck is taking so long, if all that could be done before in a week then why have I not had the results yet!! I need to be told it's normal so I can cope and move on!!

And if it comes tomorrow when I get home from an event I am excited about and will be on a high from, I am going to be fuming!!

:angry-banghead:


PS had to email Rheumy last weekend and did give a reminder of "hope to hear from you soon with MRA results". He could be on holiday but he always sets up his email with an auto-reply if he is away or due to be away.
 
Went out with hubby and friends Sat night to celebrate St Pat's day.....at some point while walking my left foot/toes felt weird - a little pain but I figured it was my boots...yesterday evening I pull my socks off and I have one hellofa bruise at my 2-3rd toes!.....almost like I broke something or got stepped on....BUT it doesn't hurt!

Right foot - well, that is another story - got the good old dry skin peeling at my toes - and now a CRACK under one of my toes.....ouch!.....guess at least I won't limp as both feet are screwed up!
 
My mini-vent of the day is that the predisone is causing so much heartburn. I took a prevacid a while ago, but no relief. It feels like my inside is on fire.
 
Oh my goodness, Linda, that is totally my vent too!! All day and every night around 3am I wake up with awful heartburn.
 
I don't know how "mini" it is, but here's my vent for the day....

I am almost 6 months out from surgery, and I am still having constant D with so much mucus it is really making me worry.

My bum is constantly sore & feels like it is on fire. I am walking funny and can barely sit down by the end of the night. I have hemi's and fissures. :mad:

I can't even make it through the night anymore, I am exhausted from waking up in the middle of the night to go. At least I'm waking up first, though!!

I feel trapped in my house because of the urgency. I'm going like 15-20x daily. Just got off a course of Flagyl & Cipro last month, now I'm on Xifaxin. Seems to be doing nothing.

My house is a mess, and my hubby is coming home from work and going straight to his second job tonight. My son's birthday sleepover is tomorrow night, and my hubby is working then too.

I just lost 5 more pounds, putting me back under 100.

I just don't know what to do to get well. Going to a liquid diet for a few days to see if it helps with the frequency. So ready for a change.
 
Sarah, that is not a mini. Hang in there. I would think that 6 months after surgery you should be much better than that. What does your GI have to say about what is happening? I think this is really bad. I am so sorry.
 
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Hi Sarah. I must admit that seems alot to be going through all this time after surgery. I would start asking questions too if I were you. I wonder do they assume you have been alright if they havent heard much from you. Perhaps you are too good a patient. Dont suffer in silence and I wish you the best for the sleepover.
 
Thanks guys. I just made another call to the GI. I was going to wait until Monday since I'm still on antibiotics. I figured they'd just say to finish them first. My hubby begged me to call today, so I did. My GI nurse is in clinics all day, so I may not get a call back until Monday. The secretary marked the email urgent, stressing that I had lost weight fast.

I guess I was too good of a patient for the first 3 months after surgery. I knew it would take a little time for my body to recover, and my pain had gone from a constant 9-10 down to a steady 2-3 so I felt pretty lucky.

At my last GI appt in February, the GI said my body was mechanically different and put me on antibiotics for suspected SIBO. I hate flagyl more than prednisone, and I feel worse after being on it. I might as well be taking tic tacs for all the good the Xifaxin seems to be doing.

I'm just worried about the mucus, and constant D. I'm scared I'm going to start flaring lower in my colon or rectum and I am freaked out & worried.

My last set of labs weren't terrible, so my GI doesn't think I have any active CD right now. Huh. Six months of constant diarrhea isn't NOTHING.
 
Hi Sarah.
I am glad you got in touch with your GI and keep onto him if you are getting no satisfactory results. Here comes the stupid advice...try not to worry (i know i know, i would be the same). If you are anything like me worry will really make things worse. You have done the right thing today I think and so the ball has started rolling again. That is the main thing. The fact that the pain has gone down to a 2-3 is another good thing so stay positive if you can and you know where to find us if you need us. I dont know if you can eat strawberries so here is a virtual one as a treat Ha! :strawberry:
 
I have a mini-vent. I am so sick of my fb friends with young kids posting so much when their kids are ill


"poor (insert nickname for said kid) is sick with a temperature" Sad face of course

"poor little man has a cold" Sad face of course.

Up to 6 times per day while they are sick.

Of course it's not great their kids are sick, but they will be fine in a few days, and being so OTT about it is really childish!
 
StarGirrrrl said:
I have a mini-vent. I am so sick of my fb friends with young kids posting so much when their kids are ill
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You're not writing these down, cataloging your results, and doing differentiations on previous tummy aches?! Didn't you get the "little man" calendar, StarGirrrrl? ;) I hope that makes you smile.
 
not a Crohns vent just so annoyed with the carelessness of my dad who just walked on and flattened the young leeks that I planted only a few weeks ago and broke them. Honestly! What I would give to have both my husband and my dad have a little common sense and look at what they are doing instead of blindly wandering around and ruining work that I have done. I know my husband has nothing to do with this mistake but he usually just as bad and sometimes I feel I have to babysit the men in my life. What a waste of time that was to plant and I was so pleased with how they were doing AHHH!
 
I hear you, Goldfish.

The two blackberry bushes I planted last year have been mowed over 4 times now.

My husband's response? "I can't see them when the grass is high, they're in a bad spot."

Ummm, I asked if that spot was okay and you said it was perfect.

Perfect for killing my bushes, apparently.
 
Oh thats so annoying Sarah Anne. I feel better now and its done and that's it but was so disappointed. I have some berry bushes too....I also mow the lawn (just finished actually) for the very reason you just stated! Thanks for the understanding on my rant :smile:
 
Goldfish and Sarah Anne, I can so relate. My husband cut back my beautiful rose bush because he forgot it was a rose bush and thought it was a weed. I hope it survives. It has the most beautiful smelling reddish purple roses.
 
I have a chest cold!....yesterday coughing up slimy green crap (and out of my nose too)...with a hoarse voice...today coughing up harder crap althou my sinuses are a bit better.....

Called in sick for today, going to put my daughter on the bus and climb back into bed I think.....
 
Hi everybody :) I have never posted on this thread. My mini-vent is Lyrica witch I began taking for musculoskeletal pain. It works!!! No more musculoskeletal pain! Here is the problem, I have gained 15 pounds!! This is a big deal. I am really feeling down about myself for eating so many sweets. I start w/ one and then I can't stop! I feel so weak! I have no willpower :(
 
My mini-vent! I spent three hours in a queue this morning...
Its dissertation deadlines and I'm not handing my one in because I have an extension. But needed to pick up another piece of work I put in to be printed on Monday. He hadn't done it and I spend three hours in the queue, also waiting for my friends to get their dissertations printed. Then I couldn't hand in my work because the office was closed for another two hours! So I went home feeling like I have seriously wasted my time and in a bad mood. My friends didn't even seem to be that happy considering they have their dissertations out the way which I am very jealous about! :(
 
Why?

Why have let myself get in this state? I should being more strict with my eat habits and not use money problem and children, partner as excuse.
 
My vent is I have yet vanother bowel infection-WTH???? No matter what I eat I keep getting them! Pass the Flagyl...
 
Mini vent re: school attendance policies -- we've got an attendance policy that says you can only miss four sessions of each 3 credit hour class. Obviously, I've talked to the Dean of Students about being sick just in case I need to miss more than the allotment, and she told me it was completely fine and they'd be happy to work with me. HOWEVER, my issue is with people who miss more than the allotted amount, ask for an attendance waiver claiming to have been "sick" when really they just didn't want to get out of bed. No, bitch. I actually AM sick and I still drag myself out of bed every day for class. I try to NOT miss classes unless I literally am unable to get out of bed because I feel so awful. Unfair. These people have no idea.
 
Double ouch! Had cortisone injections into both heels today and I am hobbling around on my toes as little as possible.
 
Ugh.,.........not sure what I ate but my belly has been off all afternoon. Feeling bloated, pain in my right side that has now moved to above my bellybutton!

On a good note I am in bed using my new kindle fire that hubby gave me as an early birthday present!
 
My mini-vent is that I'm terrified of what eating all that Passover food is going to do to my gut. I love it all, but I know after 2 days eating matzo I'll be so sick. Be prepared to hear my complaints next week.
 
LindaS said:
Goldfish and Sarah Anne, I can so relate. My husband cut back my beautiful rose bush because he forgot it was a rose bush and thought it was a weed. I hope it survives. It has the most beautiful smelling reddish purple roses.
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Roses are very hardy plants so should be okay. There is lots of growth on them in the spring so it was kinda the best time for him to do it as it will grow quickly ;) But still :ybatty: for him thinking it was a weed!
 
I haven't been dealing with Crohn's for very long. Between that and starting a low carb diet for my insulin resistance, I lost 25 lbs. I was so excited. I cleaned out my closet and sent bags of clothes to the charity shop that were all too big for me. Then I went on Entocort and also began having cortisone injections into my heels, AND have been on Lyrica. I have gained 27 lbs back and have so few clothes to choose from now. Lesson learned. Keep both skinny and bloat clothing. I hate clothes shopping too as I am almost 6 feet tall and nothing ever fits.
 
Yep we used to get them all the time in high school-of course that was in the 80's before 9/11 and the Department of Homeland Security...
 
Finals are in a week. I literally could not have more stress / anxiety than I do at the moment. We made national news already, just google pitt bomb threats. I just want this term to end!
 
Oh Emily, I'm so sorry! College was some time ago, but I remember the stress greatly. I was diagnosed with Crohn's the week before finals the end of my first semester. The GI team wanted to hospitalize me immediately. I had never heard of Crohn's and I was so stressed out. I was like, "Give me some damn antibiotics, I can't go anywhere. I have FINALS!!"

I have no idea how I made it through any of those tests!!

My mini-vent for today:

I spent Easter weekend in hospital, I just couldn't stand the pain anymore. I was scoped up and down, x-rayed, CT'd and barium-ed up while I was there. And it turns out that I have no active Crohn's right now. Yay, right? I mean, that's supposed to mean remission?

Then why in the hell do I feel like crap? I have gastritis which was calmed down in the hospital, but it already starting to bother me again and I have no pain meds-except Tylenol. My eczema is flaring again, not badly, but it just won't go away. I just started getting my scalp sores again...I have no idea what these things are, I've been getting them forever. My mom does too, her dad used to as well. I've never seen a doc about them, mom says it is some sort of viral infection. Again, more annoying than actually painful.

And the restless leg has started. This really is starting to worry me. My mom has RLS pretty badly, so does my little sis. I have had it, but only when I'm on prednisone. I'm not on prednisone now, so I'm hoping it is just a vitamin/mineral deficiency thing that I can correct myself with diet and supplements.

I guess I'm just pissed because I always imagined remission to be like one of those commercials where women are laughing and spinning in circles in a sunny meadow filled with wildflowers. That is definitely NOT how I am feeling at the moment.

*Sigh* Vent over, sorry.
 
Emily, I hope the bomb threats stop.

Sarah Anne, not to be a downer, but I had a scope a few months ago that showed no active inflammation, then in the ER 3 months later, a CT scan showed a ton of inflammation. At the time of my "clean" scan, my GI thought the Crohn's was in remission, even though I was still in pain. Now he thinks it was just hiding or something. I was annoyed that he didn't seem to believe that I was still having problems. I hope for you it is remission, and you start feeling better all over soon.

My mini-vent for the day is I had a filling come out, and my dentist can't see me until Saturday at 10. It is driving me crazy the jagged edge of it keeps catching on my tongue.
 
Sarah Anne, I'm in remission and the only time I've had those "dancing and singing in a field of wildflowers" moments was when I was first on pred and I got the "euphoria" side effect from it. Don't get me wrong, remission is great, but not every day is happy sunshiney bliss unfortunately. It's normal, and normal is good. Pred made me superwoman and a rock star, but remission just makes me, well, me! I hope you can get there soon too, field of wildflowers or not. :)

My mini-vent today is, I just don't get men sometimes! My hubby has been looking for a full-time job in his field (art/animation) for quite awhile now but has come up empty. He works 2 part-time jobs and does some freelance work, although altogether he doesn't make much money and is home a lot. We have an understanding that because of this, he will do more chores around the house until he can find a full-time job. Well, the dishes have been piling up and the groceries are running low and so on, but what did he do yesterday? He had a friend over all day, and they worked on some wizard staff or something that his friend is going to use as a prop in a convention (yes, they're nerds). I was okay with this at first because I assumed the convention is coming up soon, hence why they needed to spend a full day working on this. Nope! The convention is in November! So, my sink and counters are full of dirty dishes for no good reason whatsoever. Hubby swore this morning that he'd do the dishes today. We'll see! I work Mon-Fri and hubby works Sat & Sun at one of his jobs, so what usually ends up happening is that he'll do a bit of housework during the week and then I'll do tons of dishes & laundry on the weekends. Not cool! Especially when my dishes aren't getting done because his stupid friend had a totally non-urgent freakin' craft issue that took an entire day. Grrr!
 
Haha, thanks Linda!! Yes, it seems sometimes the doctors want to look at our tests and bloodwork but not at US! I'm thrilled that I don't have any inflammation right now, but I do hurt! It's coming from something, somewhere! But as long as labs and scopes are clear, we're all good to go......

I realize I'm just feeling really bitter right now. After 3+ years of major flaring, my Crohn's is finally calmed down. I just expected to feel better all around I guess. I'm putting on weight slowly and no longer vomiting everything I eat, I suppose I will have to live with the victories I have made and be happy.

I feel kind of bad now for being so completely whiny about it, so many here are still struggling to be diagnosed or get diseases under control. Let's just chalk it up to Sarah being grumpy.....
 
Thanks so much everyone. We're at 85 now. It's beyond disruptive but I have to keep trucking through till the end of the term. So close....
SarahAnne: OMG that finals situation sound awful! Wow, I wouldn't know what to do. Crohn's always hits at the worst times.

Hope everyone is doing well and feeling better!
 
Stupid People.

Well for last month, we have get phone call on my partner mobile the that use to for family. I am not talking sense able call phones at reason able time, I am talking 1,2,3,4 am. Now first person he come up unavailable.

Last night I started taken Prednis, felt like crap so bath and when bed early.
Having reason able sleep. 1 in morning or after, the phone ring with mobile number. So I thought must something wrong. No it other person who think Jamie has stole his friend phone and sim. Why hell would he need or what to?

This same it turn slang match. Eventually of Jamie hang up. He ring twice later time 1.50 am. Now the phone off until Jamie used credit by end week new sim go in.

Now tired and in pain for my hospital appt.
 
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ugh...was driving in to work this morning and felt like something was caught between my teeth.....did the old fingernail scrape and part of a filling came out!!!

Now to find time to go to the dentist.....I keep picking at the hole and my tooth is starting to bother me....at least the dentists' office is across the hall from my office!
 
pasobuff said:
ugh...was driving in to work this morning and felt like something was caught between my teeth.....did the old fingernail scrape and part of a filling came out!!!

Now to find time to go to the dentist.....I keep picking at the hole and my tooth is starting to bother me....at least the dentists' office is across the hall from my office!
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I hate that! And don't feel so bad, in exactly one week's time, I had 2 teeth break off up to the gum line. Making it even worse, they were both front teeth, as that is all I am left with after the years of Crohn's, prednisone and having 2 babies. Luckily for me, I will have some money coming soon to get back to the dentist and get some teeth finally. Unluckily, until then, I work for the public, and have a tendency to laugh often, so it REALLY shows, which embarasses the he&^ out of me.
 
pasobuff said:
ugh...was driving in to work this morning and felt like something was caught between my teeth.....did the old fingernail scrape and part of a filling came out!!!

Now to find time to go to the dentist.....I keep picking at the hole and my tooth is starting to bother me....at least the dentists' office is across the hall from my office!
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I had the exact same thing happen last week. Now I am getting a crown. I think the Crohn's or the predisone has destroyed my teeth.
 
LindaS said:
I had the exact same thing happen last week. Now I am getting a crown. I think the Crohn's or the predisone has destroyed my teeth.
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I was scolded by the dentist about not having my teeth cleaned in (quite) a while.....he also mentioned my gums being tender/sore - and when I mentioned Crohns' he actually knew about the connection!!!.....This was a 'new' dentist as the one I usually see was booked up.

Now my mini-vent is that the side of my face is numb - and because it was an upper tooth, it goes up into my sinuses which isn't that comfortable! ugh..... at least I am off work in 45 minutes!
 
Trying to get a job for the summer while I'm home from school and I'm beginning to think a lot of online apps just get automatically rejected. I don't think it's a coincidence I got three e-mails for the three positions I applied to at the same company in different nearby cities at the exact same time that say the exact same thing (Gmail had them all in the same e-mail conversation and didn't show parts of two of the three because it was "quoted text")...
But then again, I don't think it helps that I have basically zero work experience, but how am I supposed to get work experience if even for positions that are called entry level, they (the automatic e-mail response) says I'm not qualified for it? Kinda frustrating because I really want work experience so that I am a more qualified job applicant in the future. :(

Also, it's raining and it's not a nice rain but a cold rain and I still feel cold and wet from when I came back from class two hours ago. Yuck.
 
bambam said:
Trying to get a job for the summer while I'm home from school and I'm beginning to think a lot of online apps just get automatically rejected. I don't think it's a coincidence I got three e-mails for the three positions I applied to at the same company in different nearby cities at the exact same time that say the exact same thing (Gmail had them all in the same e-mail conversation and didn't show parts of two of the three because it was "quoted text")...
But then again, I don't think it helps that I have basically zero work experience, but how am I supposed to get work experience if even for positions that are called entry level, they (the automatic e-mail response) says I'm not qualified for it? Kinda frustrating because I really want work experience so that I am a more qualified job applicant in the future. :(

Also, it's raining and it's not a nice rain but a cold rain and I still feel cold and wet from when I came back from class two hours ago. Yuck.
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I remember that feeling very frustrating. I was tempted to lie after a while. Cant remember what I did in the end. Anyway if you get nothing you can scoff at them while you have the summer off and they work and if you are on the dole then you can smile in the knowledge that their taxes are paying for it as that is obviously what they wanted all along.
 
bambam said:
Trying to get a job for the summer while I'm home from school and I'm beginning to think a lot of online apps just get automatically rejected. I don't think it's a coincidence I got three e-mails for the three positions I applied to at the same company in different nearby cities at the exact same time that say the exact same thing (Gmail had them all in the same e-mail conversation and didn't show parts of two of the three because it was "quoted text")...
But then again, I don't think it helps that I have basically zero work experience, but how am I supposed to get work experience if even for positions that are called entry level, they (the automatic e-mail response) says I'm not qualified for it? Kinda frustrating because I really want work experience so that I am a more qualified job applicant in the future. :(

Also, it's raining and it's not a nice rain but a cold rain and I still feel cold and wet from when I came back from class two hours ago. Yuck.
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I remember that phase all too well. What type of field are you looking to get into?
 
LindaS said:
I remember that phase all too well. What type of field are you looking to get into?
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Majoring in Human Resource Management with a minor in Communications.

Would love to find a summer job in the office world (especially in a business's HR department), but a lot of those are internships and they require you to be between your junior and senior years of college, and I start my junior year in September so I'm not there yet. At least though, I can start looking at those next summer.
 
Ugh today I couldn't find my car in the hospital parking lot, burned my hand cooking and dropped a metal ladle on my bare foot!

I had a CT scan on my lymph nodes so I'm scarrred, too, trying not to think worse case scenario...:eek:
 
Mountaingem said:
Ugh today I couldn't find my car in the hospital parking lot, burned my hand cooking and dropped a metal ladle on my bare foot!

I had a CT scan on my lymph nodes so I'm scarrred, too, trying not to think worse case scenario...:eek:
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Oh, honey, try to be calm. I know that is easier said than done. How long are they making you wait for the results?
 
My daughter gave me her cold......BP still hasn't come down quite enough (hanging around the 130s' lately - going to get it checked now).....slept like crap....had to hit the bathroom 2x before heading out the door and it wasn't pretty.....

and to top it off, I wore the 'wrong' under-drawers and have one hell of a wedgie!!!!!!!!! :ybatty::rof::yrolleyes:
 
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A quick shout out to my jack@$$ GI, who kept pushing me to my primary care and ignoring/not working on the fact i have had constant Crohn's symptoms for 9 months.

And to the er that never admitted me, even after 5 visits, never tried to solve my problem.

It took threats of hurting myself and placement in a psych/med until to get the medical part of my problems solved.....so a big thank you to St Mary's in MI.

And a big F you to the Metro health system in Grand Rapids MI.

End rant.
 
VenomousDuck said:
A quick shout out to my jack@$$ GI, who kept pushing me to my primary care and ignoring/not working on the fact i have had constant Crohn's symptoms for 9 months.

And to the er that never admitted me, even after 5 visits, never tried to solve my problem.

It took threats of hurting myself and placement in a psych/med until to get the medical part of my problems solved.....so a big thank you to St Mary's in MI.

And a big F you to the Metro health system in Grand Rapids MI.

End rant.
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God that's awful. What a nightmare.:eek: I hope they are taking you seriously now and you are getting some well deserved looking after.
 
More blood tests and no answers! GI appointment is going to be sometime, but who the hell knows when.

ESR was zero. Literally zero. Doctor had a bit of a weird face when she told me that one but said while it's not normal, but it's not necessarily 'abnormal' given all my other normal tests. She started bringing up IBS, but I know it's not IBS.

She's trying. But no answers is trying my patience.

I'm considering just eating everything that makes me sick and putting my nose to the grindstone until I get an answer, because I know there's one to be found.
 
Somehow managed to pop a blood vessel in my PALM yesterday!!!!!! And pinched my hand leaving a mark...and the same hand is stiff, stiff, stiff!!!!
 
Finally after nagging Doctor all week my CT results-no lymphoma thank God.

Lymphodemia, maybe caused by Remi, maybe by Metho, maybe, maybe maybe...

Good Lord I wish someone would pay me to guess a diagnosis!!!:ybatty:
 
Mountaingem said:
Finally after nagging Doctor all week my CT results-no lymphoma thank God.

Lymphodemia, maybe caused by Remi, maybe by Metho, maybe, maybe maybe...

Good Lord I wish someone would pay me to guess a diagnosis!!!:ybatty:
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Thank Goodness. Dont wait to be paid , start charging! :D
 
Goldfish said:
Chin up Gulk. Very frustrating but as you said at least she is trying. Hope you are ok.
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I'm doing good. I'm not severely ill like some folks, but the fact is that I'm often in considerable pain, and KNOW something is wrong with me, but nothing is showing up, nothing showed up in the past, on anything, including colonoscope/followthrough/sigmoid/ct scan.

I know that there's more than a functional disorder (oftentimes during my first flare, for a month or so, I would feel tearing pains in my right hand side, then the next day pass a clot the exact same size and shape as the pain I was having). It was handwaved away as hemmorhoids. I suppose that it healed prior to my scope and small bowel followthrough because nothing showed up, and it was swept under the rug by the docs.

This time again, nothing showing up on blood, and the doctor doesn't think anything will show up on colonoscopy/followthrough. It really is tempting to just push myself until something bad happens and let them sort it out, because I'm going a bit nuts!
 
Mountaingem said:
Finally after nagging Doctor all week my CT results-no lymphoma thank God.

Lymphodemia, maybe caused by Remi, maybe by Metho, maybe, maybe maybe...

Good Lord I wish someone would pay me to guess a diagnosis!!!:ybatty:
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I'm glad you posted, I was starting to get worried. Sorry you still don't have a firm diagnosis, but I'm so glad it isn't lymphoma!
 
Mountaingem said:
Finally after nagging Doctor all week my CT results-no lymphoma thank God.

Lymphodemia, maybe caused by Remi, maybe by Metho, maybe, maybe maybe...

Good Lord I wish someone would pay me to guess a diagnosis!!!:ybatty:
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Jeanette, I understand your frustration, but I so happy it is not lymphoma!
 
Palm feels better, but my hand feels very stiff. Plus I got a bit of a sunburn working outside ........
 
It really is tempting to just push myself until something bad happens and let them sort it out, because I'm going a bit nuts![/QUOTE]

I know what you mean but please dont do it. I'd rather hear that your frustrated than to hear something awful had happened. Keep us posted and take care.
 
My mini-vent is that I just wish things would calm down already. It's been one thing after the other for a couple weeks now. I'm still in remission thank goodness, but I've still taken a bit of a beating health-wise. First I had a bout of food poisoning (hubby didn't thaw some ground turkey properly - he got a bit ill too and he will be thawing the proper safe way in the refrigerator from now on and not just leaving it in the sink and forgetting about it!). Then my GERD decided to act up for no discernable reason. And then I got rear-ended and got whiplash! I'm feeling mostly better now, the next hurdle will be getting my car estimated (there appears to be only very minor bumper damage but I am a bit afraid that there might be frame damage that I'm not seeing) and then I'll probably get to fight with the other guy's insurance company to get them to cover my medical bills from the whiplash. The accident wasn't my fault at all but I just know I'm in for more stress due to this situation. So yeah, food poisoning, GERD, whiplash, possible car issues and stress. I just want everything to calm down for awhile now - is that so much to ask???
 
I'm currently in bed for the second day. Last night I had a terrible BM it was so painful that I was screaming out loud in tears through it. Today I cant even get out of bed on my own cause I'm so weak and dizzy. I'm currently on Pentasa which is doing nothing and 2 to 3 months till I'm financially able to be on Remicade. My best friend was supposed to drop by so I wouldnt feel so lonely but she didnt as all my friends currently acting if I'm not going out with them, they hardly remember me. I don't know how much longer I will be able to go on.
 
Nancy, hope you feel better soon. I am 26 years old and I also was on Pentasa when I was in high school from about age 16-18 and unfortunately, it did NOTHING for me either. I had surgery when I was 18 to remove 6 inches of small intestine. Felt great for about 3-4 years after surgery but when I was about 22 I started getting flares that would occur every few months. Up until now it's been manageable because my flares only happened every few months and each time they only lasted about 1-2 days. The last 6 months has been the worst my Crohn's has been since before I had surgery 8 years ago. I really don't get why it has gotten so bad. I have been on Entocort for the last 3 years but it basically has done nothing for me. I have also had a lot of days like you where I cant get out of bad and don't want to because the pain is so excruciating. What a sickening disease!!!
 
Goldfish said:
I know what you mean but please dont do it. I'd rather hear that your frustrated than to hear something awful had happened. Keep us posted and take care.
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Gah, if I sit around on my arse waiting for it to get worse before I get tests, well then if there's something going on I'm getting close to the point where I get taken seriously for a real bad reason. That's how it's seeming it'll be too, cause my doc doesn't think anything will show up, and the GI I am going to see never thought it was even IBS. I'd rather just not rest whenever the pain comes up, keep going as I do without pain, and have the pain for a simple reason like that, then real cumulative damage.
 
ace2848 said:
Nancy, hope you feel better soon. I am 26 years old and I also was on Pentasa when I was in high school from about age 16-18 and unfortunately, it did NOTHING for me either. I had surgery when I was 18 to remove 6 inches of small intestine. Felt great for about 3-4 years after surgery but when I was about 22 I started getting flares that would occur every few months. Up until now it's been manageable because my flares only happened every few months and each time they only lasted about 1-2 days. The last 6 months has been the worst my Crohn's has been since before I had surgery 8 years ago. I really don't get why it has gotten so bad. I have been on Entocort for the last 3 years but it basically has done nothing for me. I have also had a lot of days like you where I cant get out of bad and don't want to because the pain is so excruciating. What a sickening disease!!!
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Thank you for sharing your story, this disease is horrible you can never predict when it will give you some peace or when it decide to act up again, I only had two months of semi remission last year. Did your doctor suggest something other than Entocort? I couldn't go on it for a long time I had terrible reactions to it. If the GI isn't helping beyond Entocort, find another GI, I find it completely unfair that we have to deal with this disease and unhelpful doctors in the same time. I'm still in bed and its 36 Celsius outside and yet I'm really cold. I have my doctor appointment tomorrow and honestly I don't know how I will make it to the clinic, its very close to where I live but still, hopefully I will find someone to walk me to it. I just wish I get better news tomorrow.
 
Hopefully you are able to make it to your appointment so you can try to get some answers and hopefully some pain relief. I am currently weening off of the Entocort. It has done basically nothing for me the entire time I have been on it. It is the only medication I have taken since surgery besides Prednisone from time to time if I was having a bad flare. I have become pretty skeptical when it comes to any kind of pills really making my Crohns feel better. It seems the disease itself can become such a beast, medications may only go so far in truly getting into remission. Good luck with your appointment!
 
Oh my God I came home to a HUGE FREAKY FLYING COCKROACH sitting on my back banister. Two swats with a broom and two drownings with Raid barely fazed it, cat finally took it out. Now I have to move.:yfaint:
 
Mountaingem said:
Oh my God I came home to a HUGE FREAKY FLYING COCKROACH sitting on my back banister. Two swats with a broom and two drownings with Raid barely fazed it, cat finally took it out. Now I have to move.:yfaint:
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You made me laugh out loud :rof: That's why I love cats I have 8 and they never let any kind of bug inside the house and they are really sweet :ybiggrin:
 
ace2848 said:
Hopefully you are able to make it to your appointment so you can try to get some answers and hopefully some pain relief. I am currently weening off of the Entocort. It has done basically nothing for me the entire time I have been on it. It is the only medication I have taken since surgery besides Prednisone from time to time if I was having a bad flare. I have become pretty skeptical when it comes to any kind of pills really making my Crohns feel better. It seems the disease itself can become such a beast, medications may only go so far in truly getting into remission. Good luck with your appointment!
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I wanted to update you about what happened at the doctor's appointment. Thankfully my husband came back from work early and he helped me to get there. Doctor suggested Imuran till I finance Remicade. He suggested a surgeon consultation, still not sure. I will do some blood work and go back to him. I don't think as well there's anything they can do to control Crohn's it's more of a trial and error of each GI. I asked the doctor after he said that he want to control my symptoms, what about my colon? he just looked puzzled :)
 
Not sure what the heck I got into - but day before yesterday I noticed a spot on my ankle that was bugging me - not really itching...but bugging me...took a closer look, and found blisters!.....no real itch (like poison ivy would have) - and I had some blisters along the red area....attached a picture (don't mind the hairy leg lol).....still red today and slightly painful...little blisters - the bigest one I popped and covered before I ripped it open.....

Does this look like poison ivy to you guys?

aarrgghh.....of course now that I took a new picture of it I will be thinking about it....
 

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:( Oh paso...looks like shingles honey! My aunt and grandma get them. Does it hurt?

Hope I'm wrong, please go get it checked and keep us updated.
 
Don't tell me THAT Mountaingem!!!!! I only have the one spot- although it has gotten worse and I think a few new, small blisters have popped up......of course on a holiday weekend!!!!!

Now I need to do some research on shingles.....
 
It will drive you mad worrying about it Pasobuf. Can you see anyone about it? My dad had shingles but no real marks, maybe a rash but not blisters but if you touched his head you would swear you had hit him with a bat or something he screeched so much. Keep photographing it until you can get it looked at. At least that way you have a kind of diary to show how it progressed. Not much helped i'm afraid but hope you get it sorted. :(
 
Thought I had replied.......rash is still red, blisters are not as bad and not really painful.

Walked in poison ivy yesterday but no ill effects so far - and yes I did scrub after!!!!!!
 
decided to shampoo part of the living room carpet yesterday morning while I was the only one home - was holding the vacuum and trying to get the bag off (Kirby upright vacuum) and I squashed my thumb! Right along the nail bed/cuticle.....can't wait to see what it looks like growing out....ouch!
 
Out of remission. Remicade isn't working anymore. On to Humira, and alot more Methotrexate *sigh*. I should be grateful I still have meds to use, that the flare isn't nowhere near as bad as it could be, but this just SUCKS!

I've had Crohn's since I was 14 and I'll be 40 in September-I think I've served my time with this damned disease.

And today a friend of mine sends me pics of her doing this cool exercise class where you learn to do tricks like in Cirque de Soliel with the caption "I wish you could do this." And I'm thinking, "I wish I could eat without pain and climb a flight of stairs, b*tch."-seriously WTF is wrong with people?

-end of rant.
 
LOL and the hospital!! I work in Radiology at the local hospital and holy shit, there are some real weirdoes and dum basses that come in!

This woman was in here before and had this horrible cough and was NOT covering her mouth! I offered her a mask that she could put on if she felt like she could not cover her mouth. lol :) I'm in a mood today...
 
pasobuff said:
decided to shampoo part of the living room carpet yesterday morning while I was the only one home - was holding the vacuum and trying to get the bag off (Kirby upright vacuum) and I squashed my thumb! Right along the nail bed/cuticle.....can't wait to see what it looks like growing out....ouch!
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Sorry paso, I know that really had to hurt! I hate smashing my fingers :(
 

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