Need a pep talk

I started taking the MP stuff a week ago, been in a flare since New Years. Can't eat much, constantly nauseated, can't sleep more than a couple of hours. Sleeping in a diaper. Sometimes wearing them to work. I'm a mom, I work four days a week, I'm trying to hold it together but it's hard to keep my pecker up in the face of regular accidents (often with my daughter in tow, on the way to school) and blood. Just so much blood. How is it possible to keep on bleeding like this?

Help! Any veterans out there have a trick to stay positive?

Ditto on the hemoglobin. I never ended up in the ER, but my iron was so low I was so exhausted I had a hard time staying awake and my hair started falling out in clumps. I haven't been on 6mp, but hang in there! Try to eat binding foods like the BRAT diet (bananas, rice, apple sauce, and toast). Might help slightly with accidents. Is the reason you can't sleep because of urgency or pain? Because if it's abdominal pain, sleep in a reclining position if you can. It helped a little for me. Laying flat just put me in even more pain.

I don't know if I have any tricks to stay positive other than the thought that spring is on the way! I don't know where you live, but I'm in Michigan so any thought of warmer weather and sun puts me in a better mood!

Get some maint meds! I am at 3 weeks of 6mp and i am so far grom ready to quit everything else. Hang in there!

Just take 1 Imodium (or 1 recommended dose). I asked my doctor about Imodium once and his eyes got really big and he said "one a day if you must." Don't know how common toxic megacolon is, but you definitely don't want that with this going on.

My phone had a little snowflake for Friday earlier this week but now it's a sun peeking out from behind a cloud lol. Rain on Saturday though :( Oh wait, there's the snowflake lol. Next Friday. UGH. It'll change about 20 times before we get to next Friday though. Michigan. If you don't like the weather, wait 5 minutes.

3 months is long. How long does one have to take them? Don't you catch everything under the sun with a lowered immune system?

I keep wondering what people who had this did in the old days. Just suffer? Die? Stay confined? Thank goodness we can talk openly about it now. I imagine that a generation or two ago it would have been a source of great shame.

"i keep wondering what people who had this did in the old days. Just suffer? Die? Stay confined? Thank goodness we can talk openly about it now. I imagine that a generation or two ago it would have been a source of great shame."

Omg me too! I wonder that all the time, then I think they didn't eat all the crap we eat so wo dear if it was prevalent.

Omg again, a freaking subway? Really? Crap! I was in my bosses office and I had to bail for a few! He gave me kind of a weird look but at least I knew where I could go fast!

Keep taking the enemas, and just eat clean for you!

Yea this really sucks and I am sorry!!!

You sound so miserable--I'm so sorry. I was in the same boat a month ago--couldn't leave the house without having an accident, tons of blood, not sleeping--and having to work and chauffeur my daughter to ballet. Can you take a medical leave from work? I'm on disability now, and it is such a relief not to have to worry about work. You need to rest and get away from the stress of dealing with work while you're so sick!

Wow, horrific. I can definitely relate. After much resistance and anger in the face of having to wait for drugs to work I've learned that acceptance is key. Accept that this is your short-term reality and focus on the medium to long-term result. Acknowledge that if you're doing everything correctly according to the best knowledge available, there's not much else you can do. Adjust lifestyle and workload accordingly. People will be surprisingly understanding if you're honest about it. Hang in there.

I don't know if it's legal in NY (I'm in California), but medical MJ helps me sleep. It slows everything down and relaxes me. It doesn't last all night, but it eliminated one or two awakenings for me when I was at my worst. I ingest it rather than smoking it--they say the effects last longer that way (and plus I don't want to smoke it). Maybe you should give it a try.

I just wanted to say there is definitely hope. I wasn't as bad as you, but at my worst it was so stressful to get my little boy to school and back twice a week and it's only 2 minutes away in the car. I was a mess. I did 5 weeks of pred and took Rowasa and Canasa religiously along with lialda and I've been in remission for almost 3 years. In the last year I cut out wheat and all grains and almost all sugar. I've seen even more improvement. Try eating lots of soothing foods while you let your body heal like chicken soup. I used to think white toast was good for my stomach, but it's the last thing I'd eat these days. It's really hard to give up so much familiar food (wheat is in everything!), but not impossible. Have you heard of Danielle walker? She has UC and wrote a couple bestselling cookbooks with some really good recipes. Worst case scenario, you get your colon out. It sounds bad, but so many people are happy with the surgery I saw it as a viable option. Good luck with whatever you do. I hope you find something that works.