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Time for a Bowel Resection

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Ulcerative Colitis
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Posted 9/26/2013 12:26 PM (GMT 0)
well I did find out my iron is low but I'm not anemic. Will be getting some iron today here. The hospital messed up my rectal sample and never sent it to the lab my doctor wanted so I have to do it again. He talked to my surgeon and I can use a topical med like rowasa etc and can go back on Remicade. My GI asked about my surgery and was told by my surgeon that he just "diverted" the fecal flow and my colon is completely intact. All I know is this fluid needs to slow down especially since some urgency is kicking in
Posted 9/26/2013 4:49 PM (GMT 0)
Hi...hmmm, lab didn't send the rectal sample, sheesh. At least they figured that out.

Good to hear you'll be getting iron infusion and that you have no infection in your lungs. Hope the pain and breathing improves for you.

I understand regarding the no complete colon removal. Starting the rowasa should help with the urgency and healing.

As well, starting back on the Remi should get the inflammation down and help with any urgency as well.

Hoping it all kicks in to have you finally feeling as though you're recovering!

Thanks for the update!
Posted 9/26/2013 7:54 PM (GMT 0)
I'll take anything to slow down the stuff coming out of me. They took a chest X-ray this morning and there's a tiny bit of fluid there but nothing significant at all. I follow up with the lung doc in a week. It was great to get home and get my bag off and sit in a long shower. My bag was getting a bit messy. I do have some pain at the site they drained my lung when I breathe but I'm sure that will disappear in a few days. I'm still waiting on the rectal results but my doc feels they will be clear
Posted 9/27/2013 12:41 PM (GMT 0)
ugh, the urgency sucks bad! I was laying in bed and I got hit with a cramp and instantly I had to go bad bad bad. If I wasn't 50ft from my bathroom I would not of made it. I'm going to ask my doctor if there is something I can use during the day in combination with the Rowasa at night. I know he recommended Proctofoam in the hospital. I'll try anything.
Posted 9/27/2013 7:40 PM (GMT 0)
What about something like Bentyl antispasmodic...it's systemic as well, so that might help a tad?

Proctofoam is a good option too....

Yes, the lung drain site will hurt for a while...lots of nerves in the intercostal area. Where exactly is the site the tube went into?

q
Posted 9/28/2013 12:50 AM (GMT 0)
I think I actually have Bentyl somewhere. I haven't used that in a while. I got the Proctofoam today and will use that up to 4 times a day as needed. The lung drain is about a hands width down from my armpit on my back a little towards the outside of my body. I hate to say this as I type but my temp is 99.9. I hope the lung issue isn't coming back. My abdomen feels very tender tonight
Posted 9/29/2013 7:11 PM (GMT 0)
Well so far Saturday and Today I've felt pretty dam good. No pains, my energy level has been good and I've had a great appetite. I actually went out to dinner with my family Saturday night for the first time since surgery. Lean steak and baked potato was awesome.

Does anyone have suggestions about putting on weight after surgery? I was 165 and I'm about 145 now. Obviously weight training is out of the question, I'm eating but can't really over stuff myself. The foods I'm allowed to eat on the low residue diet aren't the best either. I have weight gain powder but that's loaded with a lot of stuff for weight training so I'm hesitant about testing my system with something like that. Maybe there's some healthy shake with good dense calories that fits into a low residue diet? My muscles have atrophied pretty bad...I'm all "soft".
Posted 9/30/2013 6:49 PM (GMT 0)
Wow, that's great news!

Your weight will pick up after you start eating foods that take a bit longer to digest...as well as wgood proteins. Lean steak and potato is a good start!

How about fibre supplements? don't know if that's a good idea to help with slowing things down....

Obviously, you're on a good start to recovery.... Take it one day at a time and don't make too many changes.

Oh, just to add...what about probiotics?

q
Posted 10/1/2013 2:39 PM (GMT 0)
I'm still to keep my fiber to below 3g on any food item I eat. I have this last week of the low residue diet and I see my surgeon on Monday. I was on probiotics prior to surgery, my GI had me on Align. I see him on Thursday so I'll ask about getting back on them. My output has been perfect over the last 5 weeks. I wasn't allowed to go over 1200 in a 24hr period or else I would need immodium. I've always been below 1000 which is great. I do have to say now, my output now has the smell along with it...whew! I'm also going to try Aloe Vera...I'll be using George's as that tastes exactly like water. I'm still having some rectal output issues but the urgency has calmed down and so has the blood. It's just been a cloudy yellowish discharge.
Posted 10/1/2013 7:50 PM (GMT 0)
Yellow discharge would be gastro juices and probably mucus since it's cloudy...good the bleeding has stopped.

I think you should be on probiotics regardless...but best to check it out with your surgeon.

Aloe vera...I've never taken it, but hopefully, it won't cause you any problems.

Yeah, the smell...once you take in protein it can certainly change the "bouquet"..lol.

q
Posted 10/1/2013 8:21 PM (GMT 0)
yeah it's consistently been a yellow cloudy discharge. I see some light pink on occasion but the bright red blood I haven't seen since the hospital. Maybe the foam and rowasa are helping. I do still get some throbbing rectal pain after the discharge which lasts for about half an hour. A bit uncomfortable but tolerable.
Posted 10/4/2013 2:48 PM (GMT 0)
well I just had my first horrible bag experience last night. I woke up around 3am and noticed my bag was filled to the extreme with gas. I guess the gas was too much because it peeled away a section of the adhesive flange stuck to my belly and all the lovely contents leaked out...all over me...all over the bed and my comforter. That was not fun at 3am in the morning trying to shower and do a full bag change and laundry while you're half asleep on a prescription sleep aid. Let's hope it's the last time that happens.
Posted 10/4/2013 7:32 PM (GMT 0)
Oh no....what do you think caused the extreme gas?
Maybe the aloe vera?
q
Posted 10/4/2013 8:34 PM (GMT 0)
I haven't started the aloe vera yet. It gets like that sometimes during the night. I'll wake in the morning and it's just inflated. I guess this time it was a little too much. My sister warned me about that too when she had her temp ostomy 17 years ago...she said that thing will blow up like a balloon during the night.

...that was not fun
Posted 10/4/2013 9:15 PM (GMT 0)
uh, your sister had an ostomy? didn't know/remember that.

I guess that's part of your small intestine functioning with more food intake as well.

Hope it levels out soon for you....

Are you having much less chest pain now?

q
Posted 10/5/2013 11:19 AM (GMT 0)
my sister had severe UC about 17 years ago. Probably as severe as you can possibly get. She was in the hospital for 24 days. She needed emergency surgery to do a full colectomy and a j-pouch. Her colon fell apart in the surgeons hands when he removed it and she had died on the operating table for about a minute during the procedure. She remembers all the little issues that arise with having a bag so she's been very helpful.

as far as chest pain, absolutely none at all. My breathing feels great again. My lungs are still not up to full capacity but that will come in time.

I need to post about this rectal inflammation and see what works for others. So far the two meds haven't helped me yet.
Posted 10/5/2013 7:17 PM (GMT 0)
Oh wow, how scary what your sister had to go through...she's obviously a valuable resource and support for what you're experiencing.

Good to hear your lung pain has diminished...yes, your breathing capacity will improve in time.

You started the Rowasa only 2 weeks ago...maybe you could ask the doc to take a look to see how much/bad the inflammation is.

You're still on the 10mg of pred?
q
Posted 10/5/2013 7:44 PM (GMT 0)
they raised me to 20mg when I left my recent hospital stay. He said we'll reduce it when I get permission from my surgeon to go back on the remicade. I'll see him monday. My GI wants to get it done ASAP to help with the rectal inflammation. I just don't think the rowasa is making enough direct contact with my rectum.
Posted 10/7/2013 11:07 PM (GMT 0)
my new update. I met with my surgeon today, he wants to do a sigmoidoscopy on Monday to check the inflammation and the surgery area to see what's going on with that area before proceeding to put me back on remicade or other type of rectal meds. I do have an ileostomy which I kind of figured by now. He said my abdomen feels good. He advanced my diet to normal, said eat what I like...I'll still take it a bit easy and test the waters tho. I was cleared for light exercise, vitamins etc. We talked about the takedown and he's looking at mid to late November (barring on how my health / body weight is etc). That's not too far around the corner. He rated my first surgery (difficulty wise) on a scale of 1 to 10...he rated it about an 8. My second emergency surgery to create my stoma and fix the leak he considered about a 6. For the takedown he said it's about a 1-3. Said it will take about an hour, there will be no new incisions, just slightly opening where the stoma is, pulling out both ends of the bowel, joining and putting back in. He explained about a special way they will suture the opening back together. It will be slightly open but I won't have the need to pack it on my own or change any packing. That's pretty much it, I went out and bought a few guilty pleasure food items that I've been craving so it's time to test the waters :)
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