just a quick update

I am finally home from the hospital. Got discharged earlier today after being there 10 days. My coworkers, family and friends have been so supportive and glad my parents came up from Florida to be with me while I recoop.

I have to take it easy the next few weeks. I am on a TPN line to give my gut a rest and on 60 mg pred to help kick things into remission. Still a tiny bit of bleeding but the pain and cramps are subsiding some. Although not having anything go through your GI tract doesnt hurt.

I can have liquids but was told to take it easy and add soft foods as I start to feel better. I'm scheduled for the 2nd remicade infusion in a couple weeks. The hope is to not be on the TPN line too long. After dealing with the stupid pump giving me errors this first night, I am already a little frustrated but the infusion nurse on the hotline helped me sort through that.

Not really sure where things will go long term. I could see going into remission but I don't know if I could deal with the shoe dropping randomly 2 years from now and landing in the hospital again. I'm someone that hasn't ever seen the inside of a hospital short of a few hours so this really shook me up a bit.

I'm still looking into surgery. I am excited about the prospect of living a normal life and putting this disease past me. Although as you can tell from my comments on the blockage thread, I get scared if I'll be exchanging hospital visits for flares to instead be for blockages. But maybe I'm overreacting. It's late, and I'm rambling at this point. This is the first time I've really kind of felt like the sick guy from work that everyone is asking "is he okay?". Used to pride myself on at least somewhat being healthy even if I did have issues with anxiety. :)

Anyways, one day at a time. Looks like I'll have to be on short term disability for a few weeks just to recover and go through the TPN stuff since it takes 14 hours per day to infuse.

Unrelated, but anyone here a computer or console gamer? I am a designer for a studio and it kills me to not be working on our project when we are slammed with deadlines. Lol. Doesn't help that I missed out on all the good buzz for our game while cooped up in a hospital (they do a big annual game expo out in LA that happened last week. ) okay off to try and sleep.

Post Edited (tiesto81) : 6/19/2013 11:23:38 PM (GMT-6)

Dont frett the blockage too much. Proper eating and chewing is key. 3 years straight and I have never had a problem.

Umm, my take on blockages versus flares/life with UC is no contest. I'll take the random off chance of a blockage. The Pred will destroy your body. Go check out avascular necrosis, cushing's syndrome, and other possible complications of prednisone.

I go to CC from 3.5 hours away. That is driving distance for me. I did have to visit for a face to face consult, but I'm glad I had my consult scheduled. I was not much for surgery but I agreed to do the consult (my GI thought it was time for me to have surgery). It was scheduled two months in advance. During that time I just kept getting worse and worse (I was on Pred and Remicade). I actually had my surgery scheduled for ten days after my consult...before I even had my consult. But I still had to go visit the Dr. first. I had one post-op visit.

Remzi. I believe my GI sent my info in May of last year and my appointment was made for late August of last year. So that was a 3 to 3.5 month wait.

Liz I definitely would appreciate that info. My brother and his family live in NJ and I grew up there so NY is not out of the question at all for me. Thanks!

Glad to see you are now home & it's true you need to take it easy. As for the TPN my pump was a nightmare too and would go off in the middle of the night! It is great stuff though & will help alot with your recovery I have been on it since October last year, due to being underweight prior to surgery I had this January. The docs then kept me on it after surgery to help me maintain my weight and to help with recovery, you should soon be able to reduce the time of the infusion to 12 hours and can run it through the night thankfully I have gained enough weight now, due to have the line taken out next month all being well wishing you all the very best xx

Just some more updates. It seems like the TPN line is doing it's stuff at least in terms of energy and weight gain. Gained about 5 lbs over the week although I am sure some of it is water weight. Still hate sleeping with it since I wake up every hour to pee!

The pain is a lot better. Much less frequent and I havent had to take any tramadol or Oxy. Still some gas and cramping although pretty rare and this seemed to be more frequent as I started to eat more. Probably just my gut reacting to eating foods and maybe some of the healing?

Food wise I'm tolerating a lot more. Meats and mashed potatoes. Soft veggies. Even had eggs and toast yesterday and was fine.

Stool wise it seems to be slowly getting harder and not as liquidy. I didn't have any blood for a good 4 days or so although some yesterday. I think it's hemmorhoid related but can't be positive. I take a canasa in the AM and night and it's been bright red. Sometimes a bit of bright red mucus.

Today will be the first taper off pred to see how I do. Doc wants me to go from 60 to 50 and if I don't have symptoms, stick with that until my 2nd remicade infusion on Tuesday. If symptoms come back I'll go back to the 60.

He seems to be confident that the remicade will help since it did something in the past. I'm a bit skeptical but we will see. All in all though I seem to be improving slowly.

Post Edited (tiesto81) : 6/27/2013 7:07:31 AM (GMT-6)

Blargh. Maybe I spoke too soon. :/ The night before I dropped down in prednisone I noticed blood creeping back. Yesterday, I had more blood and slightly more gas pains. I'd chalk it up to dropping down in pred if not for the fact that I saw it the night before I did actually go down in it.

Always feel weird about blood output. I think some is inflammation related and some is hemmorhoids. A bit graphic. What I do see in the stool and while wiping is often bright red blood and usually red stringy mucus strands. It's like if you blew your nose and the mucus was red. But after I go I just have to sit for like 5 minutes. My butt just drips blood drops without straining or anything so I end up having to wait for it to stop.

It was like this before the hospital stay too. Wondering if I went too fast with food reintroduction although I tried to take it pretty easy and felt I was making good progress. Discouraging. :/

Thanks for the encouraging words. I am getting even more eager to get surgery than I was before. Hate being on meds like this and this TPN line is like a ball and chain (or pump and backpack in this case hah).

I had my friend who had step one done drop by yesterday to talk with my parents and show them how well she is doing. My parents are understandably terrified at the idea of surgery. Probably more than me. Not sure why I am not too scared of it. I know logic says that you should have some amount of nervousness and fear especially with the unknowns. But right now I'm more excited than anything at the idea of it. Maybe because of focusing on how many of the people that get it just live life happily afterwards.

I'm sure I'll be much more nervous once it leads up to an actual surgical date.

Anyways, my friend seems to be doing really well. So glad to see her not dealing with pain. She has her takedown scheduled in a few weeks. Interesting to hear her say she's doing nightly enemas to slowly stretch the jpouch. First I've heard a surgeon suggest that but I guess each surgeon is different.

Hearing her story yesterday at the table really reminds me how much more severe her case was. She only had UC for about 3 years but it progressed really fast. She even dealt with a bunch of complications with surgery that had all mainly cleared up. Anyways, I am staying positive as can be but always great to hear encouraging words.

I'm debating scheduling a consult at CC sooner. The reason it's not until October is because i said I wanted Dr Remzi since I've heard a lot of positives of him. But he's the head of the department. Someone on the jpouch forums said most every surgeon there is top notch and recommended a Dr Dietz. They also said that remzi really deals more with j pouch complications and more complex cases these recent years. They also said it may be better to go with another surgeon since in general, all scheduling including scopes and the actual procedure may take longer trying to go through Remzi since he's so busy. Decisions decisions.

That is great news....only a couple of weeks! You may end up really liking him and being able to get this done sooner. I liked my surgeon the second he opened his mouth. It's a feeling you get. You will know right away if you like him or not. Let us know how you make out. :)

I was on meds right up to surgery and I was in pretty bad shape. The majority of people going into surgery are really sick hence the reason they are getting operated on. So don't make yourself nuts thinking about if you are not well enough for surgery. I can understand your concern about work though. But not everything can always go to plan. Your health and well being is what is most important now and you need to put yourself first. Crossing fingers for you that the Remi works to get you feeling better.

Alison has a good point about the Remicade and surgery. I was off of it for about 3 months before surgery which I suppose isn't very long but that is a good question to ask at your consult with the surgeon. Different doctors will have different opinions about this so it's best to ask the person who is doing the surgery what the criteria is.