Flaring

[tiloah]

I guess I'm just feeling down. I was suspecting that I was "flaring" for the last month. I started getting these real low grade fevers, and I was having trouble keeping up at practice/on trail skates. I was working a lot of OT and between that and practice I was driving myself into the ground. I set up an appointment with GI. When I went in I found out they had canceled on me, had been calling my old phone. Bummer. Set an appointment up for a week later.

Yesterday I found myself exhausted all day. I went home from work and just crawled into bed. Then the pain showed up. Left lower quadrant. Similar to when I was diagnosed (although that was in the right lower quadrant). Hurts to inhale deeply, hurts to move. I asked my OH if he would go see a movie with me. It made him mad, but he went with me. I remembered the doc telling me to head to the ER if I was in so much pain I was doubled over. But I didn't want to go. My GI appointment was the next day, I figured it could wait.

Saw the GI this morning. He tells me it's most likely a flare. I am bummed, because when I was diagnosed I only had inflammation in my terminal ileum. Now it's somewhere else. He says if it gets worse we'll do a CT. Put me on Cipro and Flagyl (I refused steroids). He says this should "nip it in the bud." I am not optimistic. I feel like the Humira should have kept this from happening. Blargh. When I climbed up on the table he saw I was in pain, but didn't get how much. He touched my abdomen and I cried out in pain. He offered me pain meds, I refused, they just make me sick.

At least now I can start getting better? I have been training to try out for the Rat City Rollergirls. I started skating with them and THAT was when this started happening. So now I'm sure they think I'm not committed, or too sick to skate with them, or just weak and have no endurance in general or something (I think the infection was sapping my strength, so I probably looked pathetic to them). I just needed to vent, this makes me cranky. I am looking forward to hopefully feeling better and stronger soon. I want to get back to skating (I had to drop out for a while because I felt it was hindering me getting better).

 

[Crohn's 35]

HI there, I know how you feel, just had a confirmed scope yesterday and my left was sometimes worse than my right Quadrant but he said it was clear and a spastic colon, but the right side is moderately Ulcered than the previous scope.

It is not fun, and being in pain really wears you down after awhile but you have to fight and ask your Gi questions. I just finished Cipro and Flagyl and guessing it didnt work because I have been on and off those two drugs. Now I am on a low dose 20mg of pred to keep the pain down til I get another referral. I am assumming you are from the US?

Take care, rest, and let us know how you do. Have you had blood work done?

 

[gypsigirl28]

Hi Sorry to hear that you are having a bad time right now. Keep chugging forward and dont give up. You are having a set back but that does not mean you wont bounce back. take care

 

[Entchen]

Heya: So sorry you're struggling. It must be such a disappointment to be on Humira and to start a flare. Hugs to you!

 

[tiloah]

Thanks everyone.

They are doing blood tests. Actually my doc ordered them stat so he could tell me the results (he won't be in until Wednesday), but I never heard from them. He's looking for elevated white blood cells.

And of course because of my stupid veins, as soon as they found a vein and got the blood flowing it would stop and they would have to poke me again. My arms are all bruised. It'll probably clot and they won't be able to run the tests like last time. Stupid veins! :thumbdown:

OK I feel better now. : D

 

[tiloah]

Either the Cipro or the Flagyl (can't remember which does this) is making my mouth taste gross. I got some food to take the taste away, but everything tastes gross! Bleh.

My doctor told me it would make my mouth taste like metal, but I didn't believe him. I have a theory that anything that happens to people in drug trials they blame on the drug, so a lot of the listed side effects are coincidental (e.g. headache, or DIARRHEA). Guess not this time.

 

[Crohn's 35]

I am an expert on Cipro and Flagyl, it the Flagyl that causes a furry tongue and the back of your throat, metal mouth and dry mouth. It can cause loose bowels and buzzing feeling in your legs or muscles if you are on it too long. I dont have to warn you NOT to drink alcohol with Flagyl, it makes you vomit til you cant. Even alcohol based medicines, like cough syrup no no. Not much you can do except drink water, or tonic water and cranberry juice.

Most meds also are not to be taken with grapefruit juice... just some tid bits. Cipro, no calcium 6 hours before, or two hours after. Need any more help I am here!:ytongue:

 

[tiloah]

Wow! Thanks for all the info! I hopefully won't have to take them for more than this course... Wouldn't they expect bacteria to gain resistance if you're on it for a while?

 

[tiloah]

By the way... is it typical to not prescribe methotrexate just because your patient is a young female and therefore may become pregnant (possibly spontaneously) at any moment? My doctor mentioned it as a treatment option, then immediately ruled it out for that reason. What the heck!?

I can't take Imuran so he says my other treatment options if the antibiotics don't do it are steroids (think I'd rather flare) and increasing my Humira to once a week (I am skeptical that this would be effective), which most insurances won't pay for anyway. Sure hope the antibiotics work.

 

[tiloah]

I need to quit avoiding taking my pills and go to bed! Good night Crohns Forum!

 

[tiloah]

The bad: Antibiotics are making me seriously nauseous and everything taste nasty.

The good: The pain is pretty much gone now, so either it was going to go away spontaneously or the antibiotics are actually working!

 

[Crohn's 35]

The antibiotics do work so don't give up on them. One good advice I can give you, whether you are male or female yeast infections can arise. So probiotics can help. After a course of those or feel yeast coming on I take an Oral Canesten, gets rid of if pronto. Not cheap but it keeps yeast away. I should take stocks in some companies I would get all my money back :shifty-t: :lol:

Glad you are feeling better, sometimes I find sucking on sugarless popsicles, really help. The nausea can be helped with peppermint tea or ginger. :hang:

 

[tiloah]

The antibiotics do work so don't give up on them. One good advice I can give you, whether you are male or female yeast infections can arise. So probiotics can help. After a course of those or feel yeast coming on I take an Oral Canesten, gets rid of if pronto. Not cheap but it keeps yeast away. I should take stocks in some companies I would get all my money back :shifty-t: :lol:

Glad you are feeling better, sometimes I find sucking on sugarless popsicles, really help. The nausea can be helped with peppermint tea or ginger. :hang:

Cool. Thank you so much for all of your tips. I will look into the popsicles and the tea, and especially the Canesten. I have never had a yeast infection but I definitely don't want to start! I'm feeling less nauseous now, after getting some "food" in me. I have a tendency to get nauseated really easily, and between Crohn's and migraines it seems I'm feeling it more often than not!

 

[Crohn's 35]

Are you taking any supplements or Folic acid?

 

[tiloah]

Are you taking any supplements or Folic acid?

The only supplements I'm taking right now are vitamin D, Magnesium (Citrate/Oxide 1:1), and Riboflavin (Vitamin B2). I have Ensure for breakfast once in a while.

 

[tiloah]

AUGH. I think I have another fever. I'm at work and I'm the only person in the office who is freezing cold. It's painful. I was hoping I would be done with this after I started the antibiotics.

 

[tiloah]

I hope it's ok that I keep coming back here to unload.

My doc ran my blood tests "STAT" on Friday so that I would hear back about them the same day, since they would be closed on Monday, he wasn't in on Tuesday, and I otherwise wouldn't hear about them until Wednesday (yesterday). Well they still haven't called (guess they forgot)? My f/u appointment is tomorrow so I guess there's really no point in calling to find out what the results were. Just frustrating.

 

[tiloah]

I got to f/u with him. Sed rate high, white blood cells normal, albumin low. Par for the course, really. When he was examining me he noticed a patch of non-pigmented skin near a patch of non-pigmented hair (he apparently thought they were unrelated, even though I have white hair at 24...) He thinks I might have vitiligo? Which I guess is another autoimmune thing.

 

[tiloah]

Tryouts tomorrow. Pretty sure I have oral thrush from the antibiotics. Bleargh.

I have a phobia of mushrooms and fungus in general so this is basically just making me want to cry.

 

[girlygirl]

Hi there.. Just wanted to say I hope you're feeling better!
Best Wishes

 

[tiloah]

Thanks girlygirl! I did tryout, didn't make the team. Either my endurance was down because I hadn't skated in so long or just because I was still sick (probably both). It wasn't pretty. Haven't been able to skate since, but we have hired someone new at work so I'm keeping my fingers crossed I won't have to work so much freakin' OT.

 

[MysteryLocket]

Sorry this has happend to you. It sounds awful :-( *hugs*
I know just how that feeling feels when someone only knows you from the date it all started coming about... :-\ ... Things will get better though
*Reads on through the posts*
Aww.. Well is there another tryout soon? Would you want to tryout again?
I know of a few places and groups that have sports for specific disabilities and sicknesses. Maybe theres one for crohn's or Ibd?

just remember, keep your hopes up; because it isn't over until you've given up-so don't give up!

 

[girlygirl]

Hi.. I'm sorry you didn't make the team! And I'm sure you're right, medication, and being sick takes a toll on our bodies. Just keep in mind that things will get better, and shoot for it again. I'll be keeping my fingers crossed for you too.

I miss jogging myself! so so much! Just cant do that to my body right now though. Especially having been on so many diff meds over this past month. Our bodies need time to heal.

On the oral thrush thing.. ya.. I've had this a few times now from taking so many antibiotics, and what not.. I have a RX for Nystatin. It works good. You might want to request, or query about it on your next visit.

And for the nausea.. I get that too.. I'm currently taking Phenergan (promethazine 25mg tab) a few times a day to help control it. It works.. i just need to remember to take it.

PS.. I'm about sick of taking medications now.. but I also know that they are helping me, so for me I am following my doc's orders. I figure the longer I dont take something then the problem just gets worse.

Anywho, I hope u get to feeling better. :ycool: !!!

 

[tiloah]

Thanks you guys.

I saw my neurologist this morning (we are currently trying to find a treatment for me for my migraines, I just started taking a beta blocker). He asked me if I had had any depression symptoms over the last month, and it was kind of like, "Liiiiiight bulb." (Despicable Me). Haha.

I went, you know what, I have! I thought it was just 'cause of my Crohn's flare and I was being really down on myself for being so weak and tired, but now that I think of it I don't think that could explain all of what I have been feeling. It just feels so good to have a reason for something for a change! So hopefully this is a temporary side effect and I start feeling better soon. For a little bit there I thought I was going crazy.

 

[tiloah]

Some serious venting ahead:

Ever since my flare last summer I have been exhausted. I had to drop out of the camp I was in and I haven't been able to go to practice with any regularity. I missed name registration because you have to have at least 50% attendance for the three months prior to it. Now I have to get my attendance up to reach that goal or I'll miss the next one too. On most days I have just enough energy to go to work and go home. I know I have to get better right now, or the next tryout will be horrible too. I am so frustrated!

Most of my friends are almost twice my age and they can stay out and have more energy than me and it makes me so sad. I mean I'm happy for them, but I wish I could keep up with my peers. I can't drink alcohol or I'm sure to get a migraine. I want to go back to my GI but I know he'll tell me my options are steroids and antibiotics and I don't want to take either of those (and I'm not sure they really did anything the last time I took them). I don't want to be sick anymore! Argh. Thanks for letting me vent. I am really just fed up with this. And everyone expects you to be able to do things, because you don't look sick or they think you're making it up or exaggerating. Myself included. I put a lot of pressure on myself.

 

[ameslouise]

I'm sorry you're feeling crummy again. But let me say how great it is that you even tried out (is it roller derby?). Hopefully you can find the energy to keep on skating and sticking with it, even if it's not enough to make registration, but enough to keep you in it because obviously you really enjoy it.

But listen to your body and don't push yourself too hard. And listen to your doctor...sometimes the steroids are the only thing that will help until you find a long-term med that will keep you in remission. Stop putting so much pressure on yourself - it will only make things worse!

Hope you start to feel better soon -Amy

 

[tiloah]

Thanks for your thoughts. I know on a conscious level I need to not push so hard. My last flare (this summer) I was doing the camp and working crap tons of OT and I think that really exacerbated it. But part of me thinks "this is as good as it gets" and just trying to keep up with my peers is always going to be "too much."

I feel like the only way to stop putting pressure on myself is to admit I can't play for RCRG. Which I have been contemplating lately, but I don't want to give up.

Right now I'm on my period and I've had migraines 5 out of the last 7 days. I'm getting rebound headaches from the drugs that make my headaches go away. Blargh! But I'm feeling ok today, hoping I can go to practice after work. We'll see.

 

[tiloah]

I don't know if I'm "flaring" anymore or not, but I'm definitely dealing with a lot of depression right now. I feel like everywhere I turn my feelings are constantly being invalidated.

I think people who aren't in pain just can't understand people who are. I have been having a lot of gut pain and joint pain lately as well as a lot of migraines. It really, really wares down on your interest in being alive. And people always tell you, "It'll get better" or there's so much to be happy about... But, that's not always true.

That's not what I'm looking for. I'm looking for someone to tell me it's ok that I'm feeling this way. Because I feel like every single person I've talked to doesn't know how to process this and just tells me I need to cheer up. I believe I have a right to feel and react to the things I experience, and it depresses me when people try to take that away from me just because I'm not fitting in to what we are taught is the "correct" way to feel. I hope this makes sense to you guys, because it also makes me feel very alone and rejected.

 

[girlygirl]

Hi there..
I hope your blue feelings brighten up.. I feel you on the feeling alone thing.. and you can tell people over and over.. that you cant do this or that.. b/c of this or that. and it seems like it still doesn't sink in. like sometimes people dont really believe how sick you are. but times do get tough.. and you're not alone!

When i'm feeling down sometimes i get some bad food.. veg out a bit.. and watch a movie that'll cheer me up.. It feels good to break away from the structure sometimes and just have a little fun...

..