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Terrible, Terrible Morning

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Posted 6/12/2012 2:21 PM (GMT 0)
Hi Everyone,

I am soooo frustrated right now - it feels like I'm making no progress in my recovery from this flare. about half way through my commute to work this morning I started to feel dizzy, nauseous, and like I was going to faint. It was a really crowded subway car, the air conditioning was not working, there were no seats so I had to stand up, and it was jam packed with people. I almost passed out and a really nice woman grabbed my arm and got me off the train and into a seat in the train station. It took almost 10 minutes for me to feel oriented again, and then I realized I urgently had to find a bathroom. I could barely walk due to dizziness, and it took me almost 20 minutes to find a place where I could go, where I proceeded to have really painful, bloody diarrhea and vomiting (no blood in vomit). The LAST thing I need is to develop a fear of getting on the subway due to urgency issues.

Is the 6MP doing this? I've been on it for almost a week now. The nausea is so painful and so constant, I really can't see myself dealing with every day indefinitely. I was an hour late for work this morning and still don't feel totally right. I'm so sick of UC disrupting my life!!

Sorry for the rant. I've been trying to stay upbeat and positive about my situation, but today I could really use some support.

Thanks everyone.

Laura
Posted 6/12/2012 2:30 PM (GMT 0)
How long have you been flaring? I could be the 6mp but it's probably from the flare itself. I would have episodes like what happened to you too. One time I actually did faint and when I went to my dr. It turned out that my potassium was way low and a bunch of other things were way out of whack. I had a short hospital stay to get It taken care of via an IV. Definately check in with your dr. And explain what is going on. Hope you feel better soon.
Posted 6/12/2012 2:31 PM (GMT 0)
I hope you feel better tomorrow.

If you only been on 6mp two days, I would have been less likely to wonder about 6mp. Likewise if you had been on it for weeks, I would have been quick to wonder about the 6mp. One week is a gray area. 6mp works by blocking DNA synthesis, and resulting in lower cell production. In a perfect world this would only be the overproduced immune system cells, but it can effect other rapidly dividing cells. The cells that line the gastrointestinal tract are rapidly dividing and can be impaired due to 6-MP. The side effects could include gastrointestinal ulcers, diarrhea, nausea, vomiting and abdominal pain. Most people do not seem to get this, and most would not get this in only one week - in fact many people have to wait 6 weeks or longer for 6mp to kick in, and may have to bump the dose several times to even get into the effective range. Possibly you are more than average responsive to the drug, but possibly this is just part of the up/down sucky ride we call UC.

Watch your symptoms closely, try to think through what is best for you, and continue to vent in safe places like this.
Posted 6/12/2012 2:35 PM (GMT 0)
Laura,

Sorry to hear about your terrible morning. Good to hear that some stranger was there in your time of need.

I started 6MP a few months ago. Things were fine for the first week then I started to get the worst nausea I've ever had. I took the 6MP at night hoping to avoid the nausea while being awake, didn't quite work out the way I planned.
Ended up flaring really bad and spend 4 days in the hospital. Upon returning home I started the 6MP again and the nausea came right back. Talked with my GI and he had me stop taking the 6MP. Haven't had any reoccurrence of the nausea. Some of us just don't react to it well.

Did you take the 6MP in the morning?
Maybe you can get a prescription from some anti-nausea medicine to help with the side effects.
I took some anti-nausea medicine along with my 6MP but it didn't seem to help at all. Might just have to scratch it off the list as a medicine you just can't take.
Posted 6/12/2012 3:33 PM (GMT 0)
Sorry you are feeling so badly. I hope you feel better soon.
Posted 6/12/2012 4:21 PM (GMT 0)
Hi Everyone,

Thanks for the support. I still don't feel quite right, and the abdominal pain is still pretty intense. It feels like there is boiling, churning liquid in my gut. I tried Imuran during my last flare about 6 years ago and I remember that I felt nauseous, so I'm guessing the 6MP is causing some pretty nasty side effects, or maybe the UC is just still completely out of control.

@ByeByeUC - I started flaring about 1 month ago. I'd been in remission for about 6 years, so it's been a bummer.

@DBwithUC and @Jay79 - Thanks for the info on 6MP. You're right, it's hard to say 1 week into the whole thing what's really going on. My doc wanted to do blood work this week anyway, so I'm going to call him and try to have it arranged for tomorrow at the latest. Hopefully the enzyme panel will be normal. I took the 6MP last night hoping to sleep off the nausea. Immediately after I took it last night I had a really bad episode of diarrhea in the bathroom and abdominal pain. It subsided enough for me to fall asleep and I felt decent this morning until the episode on the train.

@Michelejc - Thanks a lot!

As I'm typing it is occurring to me just how NOT under control this flare is. It's probably time for Remicade. Or maybe even surgery, I'm just so sick of dealing with this. It's so exhausting, frustrating and humiliating. I've had UC for over 10 years now, I just want a normal life, even if it means no large intestine. I'm just so sick of all my energy going to fighting this disease. I'll keep you all posted.

I'm so grateful for this forum, you are all amazing people.

Oh yes, and do not believe what people tell you about New Yorkers being mean! That woman this morning was so kind, and I've seen plenty of other instances of people in this city helping each other out. I <3 NY!

Laura
Posted 6/12/2012 4:31 PM (GMT 0)
Laura,
Yes...New Yorkers are awesome! So many good people there. If you have any questions about surgery, I would be happy to try an answer them. I went the Remicade route first though and gave it a try but it didn't work. I wanted to know I tried everything I was willing to try first before surgery but in hindsight, I wish I didn't wait so long! Surgery has been a blessing and a life saver for me. UC sucked the life right out of me and now I am "me" again.
Posted 6/12/2012 5:17 PM (GMT 0)
Laura..

Ouch. I went through a bad bout of nausea recently that was almost constant for days. I found smoking a little marijuana helped with that. For what its worth. Good luck.
Posted 6/12/2012 5:26 PM (GMT 0)
Hi Laura,

I know I post so much about Lyme's disease, but did you ever get checked for this, by a good company like Igenix? It could also be your medication but I would rule out lyme's too. I'm sorry you are feeling so bad, hopefully you are better now. Do you eat enough? I don't know how you made it 20mins to find a toilet, that alone you should feel good about, I can't hold it...period! Try to look at that as a little bright side, it's not much but you made to a toilet! I hope you are doing better now.

 

Posted 6/12/2012 5:29 PM (GMT 0)
Sorry about what you went through, sounds absolutely horrible!!! Can you ask your doc to put you on pred until the 6MP kicks in?

Nice to know there are strangers out there that actually think about others still...these days it seems like this world is getting worse with people being wrapped up in their own problems.
Posted 6/12/2012 7:40 PM (GMT 0)
So sorry you were feeling so sick. Nausea is the worst feeling in the world. When I was pregnant I took a B6 vitamin in the AM and it helped with mourning sickness. Not sure if it will help for this but you could give it a try. Hope you are feeling better now :)
Posted 6/13/2012 12:06 AM (GMT 0)
Sorry for what you are going through.  I know exactly how you feel.  I hope you feel better real soon!
Posted 6/13/2012 12:22 AM (GMT 0)
I'm sorry that you are feeling so yucky! I never got that dizzy feeling when I started on 6mp but I was nauseous, however it didn't really hit until I was on it for about 2 months. At one point my GI was going to prescribe me Zofran to help combat the nausea but it started to subside. What dose are you on?

I also wanted to give you a ((hug)) my friend. MI misses you!
Posted 6/13/2012 12:24 AM (GMT 0)
     Jerseygirl here.  New Yorkers and Jersey people get a bum rap, but that is only because we have tough skins and don't take crap..lol.

     There are a lot of great medical centers in the New York and Jersey areas.  Hope you are seeing a reputable GI doctor.  If you are not satisfied, seek out other opinions.

Posted 6/13/2012 12:26 AM (GMT 0)
Thanks again, everyone. I'm home now and things seem to have calmed down somewhat. I have an appointment to see my doctor tomorrow afternoon to talk about Remicade and get my blood tested. In the meantime, he told me to stop the 6MP and stay at 35mg of Prednisone for the time being. Now I'm going to take a pain killer and go to bed.

@ByeByeUC - Thanks, I will definitely ask your advice if we start talking surgery, it's really encouraging to know there are people whose lives have been improved by it.

@Freddyj - Glad you found something that worked, lol!

@Therearemiracles - I was actually tested for Lyme a few years ago and it was negative. Glad my doc covered that base.

@pb4 - I'm actually on 35mg of Pred at the moment and I do think it's helping somewhat...hopefully the Remicade will knock it into remission.

@ManhattanMama - do you live in NYC too??

@Fndcureforuc - Thanks, you too!

Have a good night,

Laura
Posted 6/13/2012 2:22 AM (GMT 0)
Gosh, subway + UC, that's a scary situation. I agree with Byebye, it's probably the flare and not the UC. Those types of episodes seem to hit me often when I am flaring. I always get really hot and feverish and then I have to rush to the toilet. Are you using any rectals besides Canasa? Sometimes cortifoam can be helpful or Rowasa. How long have you been on 6mp?
Posted 6/13/2012 2:49 AM (GMT 0)
What a crappy situation sad I hope you start feeling better soon and good luck with your surgery decision.
Posted 6/13/2012 11:36 AM (GMT 0)
I didn't take the 6MP last night and woke up feeling noticeably better this morning. I'm pretty sure my body hates the whole Imuran/6MP/Cyclosporine class of drugs. I'm still a little scared of the subway...hopefully all will go okay today and I'll regain some confidence.

@Red_34 - Thanks, Sherry! Miss you too!

@NotsoSicklyGirl - I'm only taking Canasa at the moment because the Rowasa enemas are too harsh on my colon at the moment. I may resume them later on, but last time I used one (a few nights ago) it caused really severe stomach upset and diarrhea.

@Lodi - Thanks!
Posted 6/13/2012 7:31 PM (GMT 0)
Laura I hope you were doing better today.
Posted 6/13/2012 8:02 PM (GMT 0)
laurar...Oh wow..scary situation for you to have been in. Good to hear someone had the insight as to intervene and help you.

I do hope that the meds get things under control soon.

Maybe for now use the Canasa a few times a day..then try the Rowasa again.

q
Posted 6/14/2012 1:55 AM (GMT 0)
Glad you are feeling better---yes i live in the city.

I started Remicade about 3 weeks ago. The day after my first infusion the bleeding stopped and after the 2nd infusion I had no urgency issues and formed BMs. I am tapering on the Prednisone and now I am down to 4mg. Yippee! Little to no side effects from the remi so far except my hair is falling out in clumps! Not everyone has luck with Remicade but cross your fingers and give it a try.

How did your visit go with the doc?
Posted 6/14/2012 2:19 AM (GMT 0)
@Andrina - Thanks so much!

@Quincy - Yes, I'm trying to use Canasa both before bed and then once after I get to work. It definitely helps with the small area it covers. Once things have settled down (probably after the Remicade) I will attempt a Rowasa again and see how it goes. I'm really grateful for your ongoing support :-)

@ManhattanMama - That is great that the Remicade kicked in so fast for you! Sorry to hear about your hair, but getting down to 4mg of Pred is quite an achievement - I'd kill to be on that low of a dose and be feeling good, lol. about 9 years ago I had three doses of Remicade in quick succession, which turned a severe flare into almost nothing within a week. I'm hopeful of having similar results this time around, too.

I didn't actually end up seeing my doc today, he ended up just leaving the paperwork for my blood work with his secretary and said he'd contact me tomorrow morning when the results are in so we can set up a time to discuss Remicade. I'm hoping we can do an outpatient infusion this weekend.

BTW, for anyone else in NYC, Lenox Hill Hospital on the Upper East Side has a great team of highly competent, friendly, and responsive GI doctors. I have had good inpatient and outpatient experiences there.
Posted 6/16/2012 2:25 AM (GMT 0)
An update on my situation- I came to the hospital this morning for my remicade infusion and they are keeping me overnight for observation. I swear I feel better already. I ate a light lunch and dinner and then proceeded to have a mostly formed, non bloody BM! And very little cramping. Please keep your fingers crossed that this is the beginning of a trend towards wellness.

Have a great weekend, fellow UC peeps and jpouchers!

Laura
Posted 6/16/2012 8:32 AM (GMT 0)
Good to hear you're feeling better...hope it continues. You truly need a break!

q
Posted 6/16/2012 1:18 PM (GMT 0)
Wonderful news!
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