How's everyone feeling? Any updates?

[Deleted]

I get baseline blood work back tomorrow - hoping to start remicade and imuran as soon as those numbers are in. 

[Deleted]

I'm a debbie downer today. The whole right side of my face is swollen from my lips up into my nose and cheek bone, around to my ear, and down my jaw thanks to my canker sores. I don't think I've ever had canker sores this bad before. It's been like this since Thursday.

Also, I haven't pooped in days. I don't even remember when the last time was. I think it may have been Tuesday. :/

[Deleted]

Apr 14, 2013 16:37:57 GMT -5 @pixiechinchilla said:

I'm a debbie downer today. The whole right side of my face is swollen from my lips up into my nose and cheek bone, around to my ear, and down my jaw thanks to my canker sores. I don't think I've ever had canker sores this bad before. It's been like this since Thursday.

Also, I haven't pooped in days. I don't even remember when the last time was. I think it may have been Tuesday. :/

sounds like a bad flare. I'm sorry. have you tried ginger for the constipation? that's my first line of defense - after that my doc recommends miralax (OTC) and the 3rd option is colace (rx). 

[Deleted]

Apr 14, 2013 17:55:46 GMT -5 Catlawdy said:

I had a really good swim this afternoon. Feeling really good right now. I started the new twice a day butt med, and am sleeping much better at night. Sometimes i get to sleep through the night, sometimes I get to sleep until six. This morning i only made it until four. So I'm gonna still label it as progress since two weeks ago I was waking up several times a night in pain.

glad to hear things are going well!

I've been sleeping so much better since working out regularly. we went for a 3 mile walk by the lake today and I did a quick 25 mins at the gym. I feel great! 

[Deleted]

Apr 14, 2013 19:15:29 GMT -5 tacom said:

Apr 14, 2013 16:37:57 GMT -5 @pixiechinchilla said:

I'm a debbie downer today. The whole right side of my face is swollen from my lips up into my nose and cheek bone, around to my ear, and down my jaw thanks to my canker sores. I don't think I've ever had canker sores this bad before. It's been like this since Thursday.

Also, I haven't pooped in days. I don't even remember when the last time was. I think it may have been Tuesday. :/

sounds like a bad flare. I'm sorry. have you tried ginger for the constipation? that's my first line of defense - after that my doc recommends miralax (OTC) and the 3rd option is colace (rx). 

I haven't tried anything, because I'm not in any pain or discomfort. I almost prefer it, because my other options recently is going to the bathroom 5-6 times a day. I'm afraid that if I take something it's going to make things worse, so I'm just kind of going with it right now. I have a doctors appointment next week, so I'm going to talk to her about the possibility of Crohn's then. Nausea has always been my chief complaint so it's never really been considered, but I'm starting to think I've been overlooking important symptoms for years now.

[Deleted]

aw, well good luck. just be careful w/ obstructions (I get those when I'm constipated) and they will land you in the ER.

[Deleted]

Apr 14, 2013 20:23:10 GMT -5 carrotsmakemefat said:

I've been fairly constipated for almost two weeks. When I took a couple days off my Cholestramine I felt awful and had to run to the bathroom 6 times that afternoon. But I needed to poop.....sooooo....I did what I needed to do. Bad I know.

My stomach hurts no matter what I do. I've pretty much given up and I'm pretty discouraged thinking I will go through this colonoscopy for nothing. I'm just tired, and annoyed with the world

I'm sorry, Carrots.
To be honest, that is probably my biggest fear in considering getting a colonoscopy. I don't know if I can handle another test coming back negative/normal right now. Do you have yours scheduled? Remind me, have you been diagnosed or are they still trying to figure out what's wrong?

[midnightrae]

My stomach/abdomen/that whole area feels like someone is stabbing it.

[Deleted]

Apr 15, 2013 15:58:14 GMT -5 carrotsmakemefat said:

Apr 14, 2013 13:29:33 GMT -5 tacom said:

I get baseline blood work back tomorrow - hoping to start remicade and imuran as soon as those numbers are in. 

holy cow, I just googled Remicade and it sounds scary! you have to sit there for 2 hours with an IV? and it can cause lymphoma?    

is it really supposed to be that awesome? 

IVs are nothing - I've been having to get IV iron infusions for a while to treat anemia, and I had multiple lines in the hospital.  

the increased risk of non-hodgkins lympoma, MS, and skin cancer leave me less than excited, but I don't have any other options. my disease is aggressive (gross perforations only happen in severe stages of the disease - only 1-3% of Crohn's patients will ever have one) and located in the jejunum, which carries a worse prognosis than disease in the ileum, duodenum, or colon. If we don't get my disease under control, it will be one emergency surgery after the next until feedings are through a G-tube. 

the risk for cancer or MS is still relatively low, so we are hoping for the best. many lives have been changed with this drug (holla, rikki!) so I'm hopeful and ready to get started. 

[anna7602]

I think I have finally bounced back from the stomach virus that went through most of DD's class at school and every member of our family. But it pisses me off that I was doing so well on consistently getting exercise and eating well and then bam!- a stupid stomach virus undid it all and hit me worse than most because of my pre-existing digestive issues. I am just starting to feel 100% again this week, two weeks after the worst part of the virus. Naturally, DD and DH both completely recovered within 2 or 3 days.

[Deleted]

anna7602 sorry you had such a rough go. Glad you're back and on the mend!

[OrangePixyStix]

Apr 15, 2013 15:58:14 GMT -5 carrotsmakemefat said:

Apr 14, 2013 13:29:33 GMT -5 tacom said:

I get baseline blood work back tomorrow - hoping to start remicade and imuran as soon as those numbers are in. 

holy cow, I just googled Remicade and it sounds scary! you have to sit there for 2 hours with an IV? and it can cause lymphoma?    

is it really supposed to be that awesome? 

I was really worried about the potential side effects before starting on Remicade, but it's worth it to me because I'm finally more regular than I was before and my levels of inflammation are way better for the first time in over a year.  It's also supposed to help repair fistula and fissures as well as prevent another reaction from tearing me up (making certain bacteria less powerful than not being on the medication).     I don't think it's a cure, but it's a way to prevent and improve things and help symptoms.     And really, the chance of lymphoma only goes from 1 in 2,000 chance to 4 in 2,000 chance... it's not like it affects everyone.   While on it, however, I do have to do bloodwork every 3 months in order to test for things like lymphoma, so at least I know if I go in regularly for screenings then if caught early enough things won't be fatale. 


The IV is tedius, I am there over 4 hours every time I go b/c the IV takes 2 hours and they make come an hour early for pre-meds and vital checks.   I can't wait until the day where I get approval to seek at-home treatments where they just come and do it at your house!   

[Deleted]

Thanks for sharing. I'm really not worried about the IV - my iron infusions take two hours with pre-meds and monitoring. I usually pass out from the premeds so I just sleep the whole time anyways. The extra couple of hours is annoying but it beats spending 6 weeks on the couch recovering from surgery!

It feels a little strange to me that I'm about to intentionally depress my immune system though. I feel so good now--healthier than I've felt in years. I don't want that to go away.

[Deleted]

Ugh. I'm still not pooping.
I did once on Tuesday (I hadn't for a full week) and I haven't since. I'm definitely looking forward to my doctor's appointment on Monday. Hopefully she listens to me this time when I tell her there's something wrong with my bowels, instead of telling me to just eat more fiber.

[aimeedyan]

Hell, I didn't even CARE about the potential side effects of Remicade when I started it. Didn't even read the pamplet or google it. Isnt that awful? I hadn't eaten in 3 months, couldn't stand up straight, lost 65 pounds, and the pain was so bad I was on the verge of doing something drastic to get relief. I would have injected anything they handed me if it meant the possibiltiy of relief.

Thank heavens I responded within 3 days of my first infusion!

Oh - and for the record, my infusions were never just 2 hours. When I had them done in the hospital, I was there about 8 hours (mostly waiting on the pharmacy and nurses). In the doctor's office typically 4-5. I did not do premeds so I brought my laptop and school work and studied (I was in grad school at the time). It was typically an all day affair and I was pretty wiped at the end.

Pixie, I'm so sorry I really would encourage you to seek another opinion if she blows you off again. You need answers so you can get some relief. Maybe we can even help you find a GI with a speciality in IBD?

[Deleted]

started imuran yesterday. so far no symptoms - hoping it stays that way.