Frustration

[tiloah]

I guess me and my GI see things differently.

Went in yesterday because on Monday (2/14) I was having so much pain I couldn't eat, I ended up eating liquids for almost three days (I had to stop when I started getting dizzy).

Go in to the appointment, the only thing the ARNP at my GI's office thinks will work is prednisone, which to my mind is an absolute LAST RESORT. She told me I should do a six week 60 mg taper and it's just something you have to "tough it out." Thanks. Patronizing, condescending, and telling me I'm a wuss after I told her I think it will make my migraines go completely out of control (and they're bad enough as it is, thank you).

I think the Humira isn't working anymore, and I'm not sure it ever was. They seem to think it is working, I just keep having "flares" that need acute treatment (like with Prednisone). I feel like the Humira should be preventing the flares? In between each "flare" it's not like I'm feeling amazing. She said something to the effect of "where I think I should be," which I think is, not feeling like crap all the time? Apparently I need to just get used to it.

She didn't take me seriously at all. Then once my appointment was over and I was in the lab waiting for my blood draw, she came and found me and said she saw I had last 12# without trying. "What's that about?" Gee, I thought you would tell me what that was about. Ugh. Suddenly she thinks yea I can see the doctor and talk about my maintenance meds.

She said my symptoms (D and it being yellow) were more consistent with giardia. I think this is complete nonsense. I have no reason to have been exposed to giardia, my symptoms have been the same since I was diagnosed, I have joint pain and my sed rate has been elevated, and I've been treated with Flagyl (which would kill giardia) and my symptoms haven't changed. Now we're not going to decide on a treatment regimen until my results come back for that. Not only that but my terminal ileum is inflamed, my D is that color because of bile. I don't usually have blood (although I did recently) and I never have, even when my colonoscopy showed my inflammation was "severe."

Ugh. I feel so dismissed and like I have no options. I just want to feel better so I can do things.

 

[Doglover]

That sucks! It's one thing when a clerk in a store does not display exemplary customer service. It's irritating but doesn't affect your life so much as it does when your doctor isn't treating you like a customer. I hope you get some answers and an appropriate treatment plan once your blood test results come back!

Doglover

 

[tiloah]

Thanks for the support.

Got some results today. B12 is slightly low (I asked them to test it because my mom's B12 became so extremely low she became paranoid and had to be hospitalized). My inflammatory markers are "elevated" (duh). So she says I should take the prednisone. I really really really really don't want to.

 

[beth]

Are you on weekly or fortnightly Humira?

 

[tiloah]

Every other week. When she found me in the lab she mentioned going up to weekly. I fought tooth and nail to get my insurance to cover Humira, so I'm guessing they will not pay for the increase.

 

[ameslouise]

Sorry you're having such a rough time right now. Sounds like it is time to starting thinking about a different long term drug. The Humira doesn't sound like it's doing the trick!

Any chance you can see a different GI? Your current one sounds like an ass.

Good luck! -Amy

 

[beth]

Sounds like you really need to up the Humira. It's got to be worth a go at the insurance co.

 

[tiloah]

I have insurance through my work, but I also pay for insurance through my spouse's work. I was hoping maybe I could get bi weekly prior authorized through them also, and do it that way.

We'll see what happens...

Thanks for your thoughts.

 

[Jennjenn]

I hope that it works out for you. I would still fight with the insurance company if that is what you need.
Like Amy suggested though...your doctor seems like an ass! I would not want to see someone who did not show any kind of empathy.

 

[tiloah]

Bleargh. I just talked to her about what we are doing... I risked eating a gyro for lunch and am paying the price... and my joints hurt so ----- bad last night I wasn't moving around very well... So I'm gonna "tough out" the prednisone.

She made me feel awful for not turning in my stool sample. Well she asked me why and I wasn't sure what to say. Yesterday I got snowed in my house. The day before the timing just didn't work out. I live pretty far south of where the hospital is and it would be quite a commute. In any case I didn't realize that it was something they needed so immediately... Definitely not going to see her again.

Oh she asked me if the reason why was because I "wasn't having the problem anymore." She REALLY doesn't get it eh? God I wish it would just go away like that. Arrrrgh.

 

[Jennjenn]

Well I am glad that you are going to find a more empathetic doctor. It will put you more at ease for someone who you feel comfortable with. It sometimes takes people a few to find the one that they are happy with. The pred should hopefully help with some of your symptoms.

 

[tiloah]

Took the first dose of Prednisone today. Within an hour my forehead totally broke out in hives! So itchy. D: I have heard many many doctors say (not to me) that it's "impossible" to have an allergic reaction to Prednisone, so maybe some filler in it or something? Maybe I'll take it with some Benadryl next time.

Took my sample to the lab today. They tell you it HAS to be taken to the lab within four hours to run the tests. I get there and she goes "I'll throw it in the fridge for you." Hope that doesn't mean it'll be sitting there waiting.

Crazy go nuts university.

 

[tiloah]

Test came back positive. Antibiotics time...

C. diff. Want me to stop the pred.

 

[tiloah]

Blood in the toilet
You know when it's a bad day
Don't want to eat food

 

[whysoserious]

I'm sorry your bleeding. :-( Is it heavy bleeding?

 

[ameslouise]

Sorry to hear about the bleeding. Is that normal with C Diff?

 

[tiloah]

It's not a lot of blood. I just had a rough day and that's not a typical symptom for me, so I wrote a haiku about it.

As I understand it, (by this I mean as my latest visit it was explained to me) blood is more typical of Crohn's and bile/mucus/yellow crap is more consistent with an infection.

I ate some lettuce and had a blueberry muffin this morning, so it was one of those that did it to me.

 

[Nytefyre]

Test came back positive. Antibiotics time...

C. diff. Want me to stop the pred.

Ooh, sorry about the c diff. I have been c diff positive for about two.5 months and still am positive after two rounds of vanc! C diff sucks, but on the bright(well, slightly less dull)side, NO MORE PRED!!!:thumleft:

 

[tiloah]

Ooh, sorry about the c diff. I have been c diff positive for about two.5 months and still am positive after two rounds of vanc! C diff sucks, but on the bright(well, slightly less dull)side, NO MORE PRED!!!:thumleft:

Ugh! I hope your C. diff clears up soon. That is the pits. I have been on the antibiotics for several days now and I haven't noticed any difference... I am really hoping it will work.

 

[tiloah]

Ho my gosh. So I have been having pain with eating sometimes for a couple months now... usually it either means I have to start burping to relieve the pressure or I have to go to the bathroom (yes it feels the same, my wires are all getting crossed). Well tonight walking out of a movie I started feeling the pain. And so I started making myself burp, trying to relieve it. It really hurt. Then all the sudden I got hit by this giant wave of nausea and my mouth started doing that drooling thing where you know you're gonna vomit and I ran to the bathroom and I made it and I was getting ready to get down to the toilet and I projectile vomited! I have never done this before! All my food came up (I had eaten a small amount of popcorn in the movie, a gyro at 4:30, and Doritos I had eaten for breakfast). What the ****!? I am wondering if maybe my stomach is not emptying properly? I thought at first it must be GERD even though I didn't have heartburn, and I figured the docs would diagnose GERD but this seems a little extreme to be that? The pain is really really intense, but it's always so intermittent and passes so quickly I assume nothing can be done for it.

 

[tiloah]

This is really scary to me! I don't know what's wrong. I finished the antibiotics a couple of days ago and now I am eating some probiotics to give myself the best chance to knock C. diff. But this seems like and entirely different issue.

 

[tiloah]

I want to cry. I'm at work this morning. All the sudden the pain hits me out of nowhere (like 8/10). I go to the bathroom because I don't want to sit at my desk clutching my stomach. I try to go but nothing, so I lean over and just start vomiting. I can't even keep down a bowl of cereal! What the **** is happening to me?

 

[tummygirl]

This sounds awful. It sort of reminds me of my obstruction symptoms. You should go to the ER.

I know when I eat something like lettuce or popcorn I get violently ill. My small bowel can't break those foods down, and in the area where there is disease//scar tissue the bowel is too narrow for anything to go past... so vomiting is the only way to get it out.

Where are you? The NP and doctor situation sounds a bit similar to mine. I talk about all the obstructive symptoms I have and then the NP says, 'well, it seems like humira is working.' ... um no? They upped me to weekly because whenever I was sick it was on the in-between week.

I tried to tell them it was always worse when I was feeling upset /excited/frustrated/anxious... but they said they don't know how stress effects symptoms... blah blah blah.

Hope you figure this out!

 

[tiloah]

Thanks for your thoughts. Maybe I am in denial but I am hoping it's not a blockage. Maybe an ulcer, or really severe GERD, or even a gallstone?

I ate dinner tonight, scrambled an egg and cooked two sausage and drank some orange juice without pain. It's like when I feel fine I blow it off like "Oh I feel fine now, it must not be that bad." And when it's happening it's like the end of the world and I get so scared. I need to find a happy medium where I can advocate for myself without over or under representing my symptoms.

I should mention that since I finished the antibiotics my joints have been hurting a lot less and I haven't had any D. My poo is trying really hard to be solid (it's still not normal, but definitely improved). But it's still yellow and smells gross. I bought some probiotic yogurt and pills.

I think the biggest thing is I was really hoping C. diff was my problem and that the antibiotics would solve everything and that obviously didn't happen, so now I'm depressed.

Thanks for reading and sharing your experience. I'm east of Seattle by the way. And I hope are doing ok.

 

[tiloah]

Went in today. They say "gallbladder until proven otherwise." I have an ultrasound scheduled on Thursday.

Is it weird that I am hoping that's what this is? I mean, it would mean I get a definitive answer, and something can be done about it, and it's not a chronic problem (if they take it out). That sounds like a pretty good deal to me.

 

[AndiGirl]

Hi, Diesanduhr! I've had my gallbladder removed ten years ago. What a blessing! I hadn't realized just how much trouble that little caused. If you and your doctor are thinking about going that route, you have my blessing. It was an easy procedure and the recovery was very quick.

 

[tiloah]

Hi, Diesanduhr! I've had my gallbladder removed ten years ago. What a blessing! I hadn't realized just how much trouble that little caused. If you and your doctor are thinking about going that route, you have my blessing. It was an easy procedure and the recovery was very quick.

My mom told me she had hers out when she was 45 (I'm 24). It's a bit early to be having a problem with this (and my GI said "I don't know why you would have THAT on top of everything else...") but I think that it runs in the family is maybe a little more evidence in support?

I have my fingers crossed that's what it is. Thanks for sharing your experience.

 

[AndiGirl]

Ignorant comments for a doctor. Gallbladder problems do run in families, and they can be associated with Crohn's Disease. I was 29 when I had my gallbladder out. I was told that there were several 18 and 19 year-olds that needed their out a few months before I had mine out.

 

[tiloah]

Ignorant comments for a doctor. Gallbladder problems do run in families, and they can be associated with Crohn's Disease. I was 29 when I had my gallbladder out. I was told that there were several 18 and 19 year-olds that needed their out a few months before I had mine out.

Wow, good to know! She's actually an ARNP so maybe that is an excuse? I don't know. I think it's kind of lame that they didn't figure this out earlier, but I do have a few confounding variables.

Actually when I walked in to my appointment yesterday she assumed that treating the C. diff had made me all better. I was like, I don't think I'd be here if that fixed the problem! Hehe.

 

[tiloah]

C. diff results back. She says it's gone. Hooray for small miracles.

 

[AndiGirl]

:thumright:Who hoo!!! That's terrificd!

 

[tiloah]

My mom told me when she had her gallbladder out they didn't want to do it because she wasn't having the "typical symptoms" (which it actually sounds like she was) and she didn't have gall stones. She says when they took it out they told her there were no stones but it was full of scar tissue.

Has anyone heard of this happening? Is it even possible? Over the years my mom has had a lot of delusions due to her B12 being pretty much absent and I am wondering if this is one of them. It's unfortunate because it makes it difficult for me to get an accurate medical history.

 

[AndiGirl]

I had no gall stones either. My gallbladder was function between 10 and 15%. When they removed it, it was swollen and scarred. I guess the CD helped in killing it. I'm glad I got that horrible thing out.

 

[tiloah]

WARNING: Strong language ahead.

Gallbladder problems do run in families, and they can be associated with Crohn's Disease.

Wow you're totally right! Check out this website: http://www.medicinenet.com/gallstones/page3.htm

Crohn's disease. Individuals with Crohn's disease of the terminal ileum are more likely to develop gallstones. Gallstones form because patients with Crohn's disease lack enough bile acids to solubilize the cholesterol in bile. Normally, bile acids that enter the small intestine from the liver and gallbladder are absorbed back into the body in the terminal ileum and are secreted again by the liver into bile. In other words, the bile acids recycle. In Crohn's disease, the terminal ileum is diseased. Bile acids are not absorbed normally, the body becomes depleted of bile acids, and less bile acids are secreted in bile. There are not enough bile acids to keep cholesterol dissolved in bile, and gallstones form.

Considering I've basically been shitting bile for the last four years, that sounds like exactly what has happened to me. I really hope the ultrasound is consistent!

 

[tiloah]

K I was getting pretty light headed so I decided to try some Ensure... ended up with pain and vomiting it. In the toilet there were these yellow globules of oil? Is that fat that I am unable to digest? Because I have definitely not been eating greasy things today.

 

[AndiGirl]

I hope you went to the doctor. That nasty gallbladder is probably contributing to that. I'm sorry that you are have to suffer with that.

 

[tiloah]

Ultrasound this morning. I won't have the results until tomorrow but I get the impression everything looked normal.

Also I shit myself on the drive there, so that was awesome.

 

[tiloah]

Ultrasound was normal. Had a doc visit today with a different guy. Blood tests (to see if my sed rate is elevated), stool sample (to see if the C. diff returned), and CT scan.

It sounded like basically if those are all negative, I get to learn to live like this.

I am a sad panda today.

 

[tiloah]

It amazes me that I can tell these docs that I'm hitting an 8/10 on the pain scale, my joints hurt so effing bad I am having a hard time moving, and I am vomiting when I eat, and they seem so unconcerned. That the tests are coming back negative so there must not be something wrong with me. I get that these things maybe don't *mean* something is wrong, but aren't they "something wrong" in their own right?

I can't keep going like this.

 

[tiloah]

CT scan 8:30 a.m. Thursday morning... Please please please let it show something.

Last night I ate one of my "safe foods" and puked it up almost right after... Today I have had a can of Coke and some water... I am so desperate for some answers. I sure hope I don't puke up the contrast "milkshake."

 

[ameslouise]

I am soooo sorry things are so bad for your right now, and your tests keep showing nothing! Ugh!

Hang in there and I hope Thursday shows something so that you can get some relief.

- Amy

 

[AndiGirl]

That's too bad! The worst feeling is when you feel absolutely terrible and the doctor can't find anything wrong. That contrast is pretty heavy, I think you'll be okay. I felt like losing it before and was fine.

 

[tiloah]

Thanks you guys. Tomorrow! I wonder how long it will take to get the ball rolling if they find something. Gosh I hope they find something.

 

[tiloah]

WOW. AUGH.

I just hit a 9/10 in pain and I got up from the computer I was on and came over to mine and brought up the forum. I was full on panicking! I couldn't stand in one place I was moving around I didn't know what to do! I was going to post about how I can't handle living like this. I can't be in constant pain, I am too much of a wuss! But then I ran to the bathroom and puked and puked and puked up my PB&J sammich, and then I had D. Just piss and shit and vomit all together. Acid. My throat burns. I am puking everything I eat now.

I am so sad. I can't live like this. How am I going to not puke up that contrast.

I'm sorry. I am not normally like this. This is the sickest I have ever been in my life.

 

[AndiGirl]

Please go to the doctor or emergency room as soon as possible. All of that vomiting sounds scary. I am worried that you will get dehydrated. Please take care of yourself.

 

[margie]

I sure hope that you feel better soon

 

[tiloah]

Please go to the doctor or emergency room as soon as possible. All of that vomiting sounds scary. I am worried that you will get dehydrated. Please take care of yourself.

The GI office told me to go to the emergency room if I couldn't keep down fluids, which I can right now. I've been trying to drink water and watered down gatorade. I don't feel dehydrated.

But I do feel like my situation is more urgent than it is being treated? Like they keep acting like waiting for tests and waiting for results and waiting to decide what to do after getting the results is perfectly acceptable, while I'm feeling like I just want to die. I don't know if I am not communicating to them effectively enough how bad I think everything is? I try to tell them everything that's going on and they just don't seem to think it's serious. The one doc said we would keep treating as we have been if the results don't show anything. As in there are no more tests or different treatment we can try at that point.

I had my CT this morning. Managed to not vomit until it was over, but I only drank about 3/4 of the contrast... they weren't very happy about that. But I can only do what I can do.

Ohhh I hope it shows something.

 

[tiloah]

Doc just called. CT showed "inflammation of the small bowel." He was not very specific. I don't know if you can tell from a CT how bad it is? I will ask him some questions when I go in on Thursday. He is just putting me on 40 mg of Pred a day. Says maybe the C. diff flared me up. I'm kind of wondering if it's been there/getting worse since I was diagnosed. He says if I can't keep the meds down I should go to the ER and get IV pred.

Right now I have the worst headache/migraine I have had in a very long time. I am just sitting here wishing wishing wishing I could get to sleep and get some relief. I took some Tylenol PM. Hopefully that kicks in soon. I feel so unbelievably miserable right now. Anyway, I hope the pred does something for me.

Thanks everybody for listening and for your support. I would be lost without you.

 

[tiloah]

So uh, today I'm not vomiting. I've eaten a "pretty good" amount of solid food (trying not to overdo it) and keeping it down, no pain.

Do you guys know what I'm talking about when I say when you've been bed ridden or sick as a dog for so long, when you finally feel better you feel like Superman? I mean I want to DO ALL THE THINGS. I want to climb a mountain and run a marathon and CLEAN MY HOUSE. I can't tell if I am just this stoked or if the Pred is already making me manic. I feel very hyper. I'm gonna take it slow though, don't worry.

I want to cry. I though I was going to be stuck in pain and vomiting forever. Maybe I am gonna get better.

 

[tiloah]

F/u with the GI today. The CT said my intestinal wall (the terminal ileum is inflamed) looked "weird" (perforated). I have improved somewhat on the prednisone so they're just going to slowly taper me and hope the Humira keeps working for maintenance. I am not really so happy with this plan but they are convinced the C. diff is the reason I had a flare and that I shouldn't flare again.

I wish they would just cut it out of me so I could be normal for a little while.

 

[tiloah]

I am just feeling depressed today so I'm going to have some feelings.

I'm really frustrated that I keep getting sick and have to stop skating and get better. I feel like people are coming in and they start skating and then they tryout and get picked up, and everyone is passing me by... I do want what's best for the league and I know that's probably NOT having a sick girl on the team, but that doesn't make it any easier. I wish I could stop having "flares" and just skate and commit like everybody else gets to. I want it so bad.

I know I can't let this disease defeat me. I feel like if I get healthy and I am able to skate and get picked up by a team it will be so unbelievably rewarding, knowing how much I have had to overcome and how hard I have worked to get there. But right now I'm in a dark place and it's hard to see that in my head... It's hard to motivate. I am so worried I will get healthy enough to skate again and then I will just go right back in to a flare. That's why I want them to do surgery. I know it doesn't cure the disease but it seems like it puts you in remission for longer than just taking some steroids. Argh.

I just needed to vent.

 

[tiloah]

Had a good birthday today. Normally I don't do anything but I felt like 25 is kind of a big deal eh.

 

[hawkeye]

Happy Birthday diesanduhr

 

[tiloah]

Thank you.

 

[AndiGirl]

I hope you had a terrific birthday, Diesanduhr!

 

[tiloah]

Thank you Andi.

It would be so nice to be able to eat what I want and not hurt. I'm tired of eating "low fiber, low residue..." I really want surgery but I know I am probably just thinking that will solve all my problems and I need to be realistic about it. Argh.

 

[tiloah]

Lately I've been waking up in the morning with pain. This morning I woke up in SO MUCH pain and it was different than my usual. (It was across my abdomen, below my belly button) and extremely tender to palpation. I had trouble walking. I didn't know if I should go to the ER or not (I have been trying so hard to get this taken care of without using the ER). Eventually I decided to go to work, maybe it will go away. I cried on my way there.

It's not as bad right now. Since treating the C. diff and going on steroids, my poo has been becoming more "formed," ableit still thin, which I think means it hurts so much more when it reaches my blockage. When I go to the bathroom it feels like I'm being shanked in my terminal ileum. I can't even pee in a stream because I'll start, the pain will make me tense up and stop, lather, rinse, repeat.

To top it off, I started tapering the prednisone yesterday (30 from 40) and I forgot to switch the bottles after I ran out. Which means I haven't taken today's dose yet and I won't be able to until I get home. I can't wait 'til Thursday I am going to beg my doc for surgery.

 

[ameslouise]

Ack! I just posted in the minivents to ask how much pred you are on. Skipping a dose at that level can really F you up! I hope you are able to get home soon to take it and get back on track!

Good luck discussing the surgery with your doc. I think everyone knows how I feel about surgery - treatment option, not last resort. I frankly would rather get opened up again before I had to go thru another round of useless meds.

Let us know how it goes -- Ames

 

[tiloah]

I have some mixed feelings about the surgery thing (I suppose that is natural). Mostly I come on here and it seems like all the postop people are having a party that those of us just on meds aren't invited to. It seems like it makes a pretty significant difference in quality of life.

I am worried I am kind of desperate for a "miracle cure" and I am wrongly assigning that to surgery. I am just going to ask my doc if it would be unreasonable in my situation. I know surgery doesn't always permanently cure... I only need a couple of years of remission so I can get on a league and earn my stripes. These effing flares keep interrupting my training and I'm not getting anywhere and it's so disheartening.

These stupid meds are so damn expensive and I have no way of knowing what they're even doing for me.

 

[AndiGirl]

I can understand your reservation, but I also agree with, Amy. In my opinion, you would have a better chance at feeling better quicker and longer, getting rid of the diseased part(s).

 

[tiloah]

I wish I felt better. I finally saw my doc at the GI office. He said from his perspective (after feeling my abdomen) my inflammation wasn't that bad. He said he thought I was going to be fine, which made me feel optimistic. I believe him that the inflammation isn't that bad, but it doesn't make the discomfort any easier to deal with. It also kind of makes me feel like I'm a "wuss" or something, all that yammering over such a small amount of inflammation. Although I had been on Prednisone (at least 30 mg) for at least three weeks at this point...

I taper down to 25 mg on Thursday. I feel like I'm already as much better as I'm going to get now that I'm tapering, which is such a bummer. When I don't eat I feel great, but if I do eat the pain just creeps up on me and gets worse and worse until I decide not to eat again. I want to get back to where I was before December (I think I was not in pain back then, but who knows).

I told him I just don't want to flare anymore. He said flares are just a part of having Crohn's, but ideally I wouldn't be flaring like this. He is at least willing to discuss my maintenance. I feel like now that I know what a "flare" is like I will be able to get it taken care of more quickly, so I'm not as worried. He said with the perforation he would normally prescribe antibiotics, but my last flare he gave me antibiotics they gave me C. diff so he is wary of doing that.

We didn't make any treatment changes at this appointment. I go back to see him in three weeks so I figured that's enough time to figure out what I want out of the next visit.

And FFFFFFFFFUUUUUUUU C. diff.

/rant

 

[tiloah]

Well my GI called today. He is trying to get me approved for Humira once a week. He told me today he was looking over my results again and he wants me to take antibiotics to get the abscess healed, even though I'm at risk for getting C. diff again. At least it's not Flagyl! 30 days though, that's a loooong antibiotic course.

If I get C. diff again I may have to punch someone out. He wants me to alternate VSL#3 (probiotic) with Florastor, he thinks that should help.

 

[AndiGirl]

I'm hoping this works, sweetie. I hear you when it comes to Flagyl. Yuck!!!

 

[tiloah]

Uggghhhhhh. I woke up this morning and told the OH "I think I'm dying." I hadn't realized how long it's been since I last said that! But that should have been a sign to me. I hobbled to the bathroom. My joints were all achey and my right pointer finger felt all inflamed. When it was time to go to work I felt feverish (chills) but my temp was fine, so I thought maybe I just needed to wake up. I think I was really quite disoriented. I drove all the way to work and realized I just felt too crappy. An hour later I came home and crawled into bed and buried myself in blankets. Couldn't get warm. At this point my temperature at least reflected how I felt (101). Usually it doesn't.

I hope these aren't breakthrough symptoms of my "flare" coming back now that I am tapering down on the Prednisone. Maybe it was a fluke or a virus... Uggghh.

 

[AndiGirl]

You sound very sick. Those symptoms sound like some of my flare-ups, but they also sound like a virus. It can be so hard to tell. I don't usually get a high fever with my flare-ups. If anything, mine are usually low-grade fevers. I'm sending some love and well wishes your way.

 

[tiloah]

In so much pain today. The pain got so bad I just puked up Ensure. I think it's safe to say I am "worsening" again although maybe this is just because I ate Chinese food on mother's day. Argh.

 

[tiloah]

Of course my TB test was "indeterminate" so now I have to go in and do the skin test version.

Also my sed rate and WBCs were both "slightly high consistent with inflammation from Crohn's" but these blood tests were done when I was on 30 mg of Prednisone... (down from 40). Shouldn't the sed rate be down when you're on that? =/

 

[AndiGirl]

Just checking in with you. I can relate, I love Chinese food, but I usually end up in a lot of pain. TB tests are such a drag. Continue to keep us posted.

 

[billyjoel]

Wow! This is a long thread, I was not able to read through every single post, however, have your tried Pentasa before, it has worked really well for me in the past. I hate all those immune modifying drugs YUCK! Who wants to treat their disease with something that opens them up to well... more disease

 

[tiloah]

Wow! This is a long thread, I was not able to read through every single post, however, have your tried Pentasa before, it has worked really well for me in the past. I hate all those immune modifying drugs YUCK! Who wants to treat their disease with something that opens them up to well... more disease

I think I was on Pentasa when I was diagnosed...

Last night around 4 or 5 I woke from a fever dream... when this happens I have been having trouble discerning my dreams from reality. It has been pretty disorienting. So there I am and I have a fever, chills, a migraine, I'm in so much pain and I feel basically like death in general and my "dream" is that I have to work on the set of Trailer Park Boys. But they weren't paying me! I was so furious. I was like gosh I feel so freaking awful and I have to work for these people and they're not even going to pay me. D:

 

[billyjoel]

I'm sorry... You have to stay positive no matter what, so I am guessing that the Pentasa really did not work well in the past? I had members tell me that it is more of a maintaining remission drug, but I felt that it helped me get through. I think that some people respond to Pentasa and some people do not. How are you doing on diet? I doubt you have been exercising much with fever, chills, and pain; could you try mild yoga or is the pain too bad?

 

[tiloah]

Well I just talked to my GI. It sounds like big changes in my treatment regimen are in the future. He's upping my Prednisone for the temporary. I think we're switching me to Remicade. He brought up surgery. He is going to have some other people look at my situation since it is not "clear cut." He said my appendix looked inflamed on my last CT, which may not respond to medication. He mentioned if a surgeon goes in for my appendix, they may decide everything is too inflamed and remove a part of my guts also (which may not be a bad thing).

All in all, I am happy to be moving forward for sure. Will something please finally work.

 

[billyjoel]

David Gerrard is a quarterback for the Jacksonville Jaguars and he recently spoke about having surgery for his Crohn's and he felt terrific afterwords.

Later on a inflammation returned to his intestine but this time he was able to put it in remission with Remicade, where Remicade did not work for him before the surgery. I don't know why it worked later but here is the link:

http://www.ccfa.org/about/news/garrard

 

[tiloah]

I think the C diff is back. I am having a hard time believing I am ever gonna get better. I am very sad.

 

[AndiGirl]

I don't have the right words to say, but please know that I'm here for you. Comfort and hugs. . .

 

[nicolemkadey]

Honestly, find a new doctor. After experiencing a life threatening side effect from 6MP I decided that I must switch GI doctors. I visited two new doctors before I found one that listened to what I had to say and worked with me on how i wanted to deal with my Crohn's. You are already suffering from this disease. Your doctor should be there to provide relief. To listen to what you have to say and to take what you say into account. You know your body better than any doctor does. Find a doctor that respects you and knows what they're doing!!

 

[tiloah]

Welp, today my doctor told me he thinks the meds just aren't going to get me better and it's time to do surgery. It will depend on an MRI I'm getting on Friday, but it sounds pretty likely. I am ready (although I'm still processing that it's actually going to happen).

 

[AndiGirl]

Hopefully this surgery will help out. You need peace and rest with your digestion. Please keep us updated.

 

[billyjoel]

Welp, today my doctor told me he thinks the meds just aren't going to get me better and it's time to do surgery. It will depend on an MRI I'm getting on Friday, but it sounds pretty likely. I am ready (although I'm still processing that it's actually going to happen).

I wish you the best!!!!!!!

By the way, where are you from? I know the word *Welp*, so you must not be too far away! haha :rof:

 

[tiloah]

Thanks you guys. I am from Seattle-ish.

 

[billyjoel]

Thanks you guys. I am from Seattle-ish.

I am from arkansas so welp must be a universal term haha

 

[susie]

Do you guys know what I'm talking about when I say when you've been bed ridden or sick as a dog for so long, when you finally feel better you feel like Superman? I mean I want to DO ALL THE THINGS. I want to climb a mountain and run a marathon and CLEAN MY HOUSE. (...)
I want to cry. I though I was going to be stuck in pain and vomiting forever. Maybe I am gonna get better.

Such a great post. Got my eyes all wet.
You´re fantastic, radiating all this love & all this bubbly, shining life.
Yay for your scheduled surgery, I hope that goes extremely well and you get a looong break from the pain.
:smile:

 

[tiloah]

Thanks Susie.

I have an interview tomorrow with the company my OH works at... I am not really sure what to do if I get the job. One of the reasons I applied was we were running out of work at my current place but we just got a major client back so that's no longer an issue. It would be a pretty substantial pay cut from where I'm at now, but the commute would be a lot better. (I could even bike to work).

I know I need a change and now is the time to do it (for the time being I am off of Humira, so losing my primary insurance wouldn't be as big of a deal). My hope is to get a job at Amazon as a software developer, but I'm not prepared for that just yet. This would be a 6 month contract, which seems like the perfect amount of time to push me, but I am worried they won't be hiring as aggressively by then.

Hngh.

 

[AndiGirl]

I'm say a prayer for you. Hopefully things will work out in your favor.