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Time for a Bowel Resection

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Ulcerative Colitis
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Posted 9/17/2013 1:17 AM (GMT 0)
I might be misunderstanding the situation but it makes no sense to use Pentasa as your maintenance med right now... 5-ASAs work topically on the intestine, and as you know you have quite a bit of intestine downstream of the ostomy that none of the Pentasa is actually getting to. Can't tell from your thread if you have a temporary ileo or a colostomy -- if it's an ileostomy then literally no medication is reaching your colon, if it's a colostomy then medication is only reaching the part of the colon above the stoma. Either way, seems like a silly med to use.

Keep up with the incentive spirometer, I was lazy about it after my second surgery and had a nagging cough for weeks -- NOT fun with a new stoma and an abd incision!
Posted 9/17/2013 2:23 PM (GMT 0)
I currently have a temp colostomy. It's located below my belly button slightly to the right. I'm seeing some of the Pentasa medication from inside the capsules passing through my stoma. I wouldn't say the entire amount from all the capsules but there is a small amount.
Posted 9/17/2013 3:00 PM (GMT 0)
I'm definitely interested in your temporary plumbing system. So, the colon's connected to something to keep it functioning since you're having some stuff being expelled. Makes sense no gas since there's no digested food entering it.

Yeah, Oblivion was a mixed bag of interest with twists, and I thought Tom played the part perfectly.
I've not seen Mud..I'll check it out.

Seems going to work will help you with some functioning, but it might be too much considering you're very tired and now having a low fever. It could be because you overdid...but that's all part of healing.

Do the pain meds help your diaphragm pain?

q
Posted 9/17/2013 6:34 PM (GMT 0)
Yeah I can only last 3-4 hours at work before I get too tired and can't focus on anything. I came home early today as the nurse came by to watch me change my bag on my own for the first time. Didn't do too bad but my stoma picked the worst time to be overly active. I must of went through a box of wipes trying to wipe up everything that was coming out. It was endless. I think one more nurse visit and I'll be fine on my own.

I had the remainder of my staples removed this morning. The put some glue and special tape across the incision as a portion of it is still slightly open.
Posted 9/17/2013 7:29 PM (GMT 0)
It sounds like what you have is probably an ileostomy -- those are typically on the lower right and active throughout the day. Pentasa is designed to release in the terminal ileum which is why you're not seeing all of the granules come out in your output -- some of them are treating your small intestine, but with UC you don't *need* any medication there. I'll echo my concern that none of the active drug is actually reaching your colon. You should talk to your GI about this at your next appointment. Doctors are not infallible and in a rush he might not have considered the implications of taking a 5-ASA with an ostomy.

Creamy peanut butter and marshmallows are two foods that are sometimes useful for temporarily stopping your output before a wafer change. I found that if I ate five marshmallows, within 20 minutes my output would stop for about 20 minutes and I could easily change my appliance. Another really helpful tip I learned on the Ostomies board is to take a plastic grocery bag or small garbage bag and tuck it into your waistband underneath your stoma -- this way if there is output during your change, it can drip into the bag instead of worrying about it going onto the floor.

Q, when there's unused colon left in the body it's usually temporarily tacked to the abdominal wall internally to keep it in place (and allow for drainage if necessary) -- that's what was done after my first surgery when my sigmoid and rectum were left inside. Regardless of what's going on upstream a healthy intestine continues to produce mucus that needs to be expelled periodically.
Posted 9/17/2013 8:25 PM (GMT 0)
I was re-diagnosed with Crohn's Colitis and not UC anymore. I believe they are going to study my removed section to diagnose it further to see if i have Crohn's disease. That's the main reason we did a bowel re-segment as opposed to total colon removal with a J-Pouch. That was determined after the surgeon's team reviewed my most recent pathology prior to the surgery. Now they have a good portion of my colon to analyze and maybe give me some other information on my insides.

Post Edited (blksteeda) : 9/18/2013 12:04:47 PM (GMT-6)

Posted 9/18/2013 6:31 PM (GMT 0)
OK...the Crohn's Colitis makes sense that you're on the Pentasa...definitely, you need to keep the small intestine "happy".

Hope you finally get the total hang of appliance routine.

What's the reason for the last bit of your incision to not be healing? is that the area that hurts the most as well?

q
Posted 9/18/2013 9:48 PM (GMT 0)
the last incision is the big one in my lower abdomen, maybe 4 inches or so. That was the "hand assist" opening. Two days after the second surgery, two of the middle staples fell out and they decided not to do anything as far as closing it. The doctor took it upon herself to jam a q-tip in there to see how open it was. They just kept it covered to heal on it's own from the bottom up. It's still slightly open but that tape they glued on should help close it for good in a week or so I hope.
Posted 9/19/2013 1:18 AM (GMT 0)
Interesting...as long as it's not infected or red, should heal up nicely.

Crazy glue comes in handy for all sorts of stuff!
I'm assuming it'll eventually wash off?

q
Posted 9/19/2013 1:59 AM (GMT 0)
they said it looks great. It's not red in any way. It only had slight drainage of clear liquid. They used some sort of brown looking liquid adhesive that they have to "snap" in a little glass vial to activate it. They put some special tape strips across it then put more glue across the ends of the strips gluing them together. They said it should fall off in a week or so. I can shower with them on with no issues. They're to act like butterfly bandaids in a sense.
Posted 9/19/2013 6:57 AM (GMT 0)
Sounds as though it's a perfect option.

Are you still having chest pain/discomfort?

q
Posted 9/19/2013 12:32 PM (GMT 0)
I swear the discomfort with the breathing never stays in one place. What's been sore the last few days feels like my diaphragm, most notably right below my sternum. When I take my deep breaths that's where it's sore the most. I still can't lay on my left side either, when I do, the right side of my body in the lung area gets very very sore and I have to breathe a little heavy to get my breath. Laying on my right side I'm fine though.

Oh, and the smell has officially hit my bag....holy bad!
Posted 9/19/2013 6:55 PM (GMT 0)
Is the right side the one that has the fluid still?

I think you should consider to get a massage or something that can ease your muscles as well...ultimately, it's the muscles that pull out the ribs.

Are you sticking with the breathing exercises?

q
Posted 9/19/2013 9:37 PM (GMT 0)
yeah the right side has the fluid. I had to call my surgeons office today as I feel like poop. The low grade fevers are more frequent and I noticed a bit of bright red blood when I passed some stuff through my rectum. I also attempted to go grocery shopping today and about 10 minutes in, I felt like laying on the floor and going to sleep I was so fatigued. I had to cut my trip short and get out of there. They called me back and want me to make an appointment in the morning...sounds like some blood work.

One thing I didn't think about is my chronic low ferritin levels I had prior to surgery. Just before surgery I know my levels were just above the low "normal" range. I didn't receive any iron in the hospital and I'm not sure now that it was checked. That may be playing a role in my fatigue as well.

I'm still using my incentive spirometer and gradually getting higher on the scale. If I remember right, before surgery I was blowing up to 2750 and currently I'm just below 2000. That night before the emergency surgery, the "mean" nurse was telling me to "blow through the pain"...and I couldn't get that thing barely above 0. That's when I knew something was wrong as I was higher on the scale the day before.
Posted 9/20/2013 12:01 AM (GMT 0)
lol...the mean nurse should be the EVIL nurse.

Yeah, I think there might be a few things in play relating to your fatigue...but now regarding the rectal bleeding, something for sure you need to see the surgeon about.

If your iron levels are low, so could your healing ability, no? Very good thought on the iron.

Have you had your Vitamin D and B levels and maybe zinc checked? maybe something for the doctor to do as well.  Are you still on Iron?

I hope you get more answers and possible helpful things to do to have you feeling better.  It's good you called!!

q

Posted 9/20/2013 12:42 AM (GMT 0)
The bleeding was a few bright red spots on the toilet paper. I usually pass a yellow/pinkish liquid but this was the first time I saw some solid red. When the called back they said some blood spotting is ok and can be expected.

I haven't had any vitamin levels checked. I can ask about that if I go tomorrow or I can ask my GI at my appt on Monday. I'm not currently on iron. I had stopped all my supplements prior to surgery ( iron was a big one that had to be stopped ). Right now my vitamins come from the Ensure shakes I drink each day. I need to discuss with him about supplements.

I'm still feeling worn out as I type this, I've been a lump on the couch all afternoon. I just have no energy or much of an appetite today either.
Posted 9/20/2013 2:51 PM (GMT 0)
It sounds as though you need to push for further tests. While it's easy to assume it's the fact that you had surgery, and healing can take time, etc.....something's obviously going on.
You should be feeling better with some improvement and having some setbacks for recovery rather than the other way around.


It's oK to be a lump.

What's the perspective on the ostomies board regarding how you're feeling?

Hope you did go to the doctor today....

q
Posted 9/20/2013 10:04 PM (GMT 0)
I didn't see a doctor today, they sent me straight for two cat scans and blood work. The CT Scans were of my abdomen and pelvis and they did a full blood panel. The Radiologist looked at it and said that my rectum is very inflamed. That explains the blood I guess. I asked the Tech that drew my blood if iron was included in the test and she said no. I'm going to have my GI on Monday do my iron. I get the feeling since it was low before surgery, it's even lower now and that's why I'm so dead tired.
Posted 9/22/2013 5:42 PM (GMT 0)
gonna try the marshmallow trick today as I'm due to change my bag soon. Let's see if it keeps my stoma quiet for 5 minutes. The last time it was like a dam volcano.
Posted 9/22/2013 6:20 PM (GMT 0)
Hi...weird no iron test!!!!! sheesh. Good thing you enquired and at least you have opportunity to get the GI to requisition it on Monday.

It's unfortunate that your rectum inflammation continues...could that create problems with your resection?

Hope the marshmallow trick works for your bag change. Interesting how that would work.
q
Posted 9/22/2013 9:24 PM (GMT 0)
i don't know what kind of issues can be caused with the inflammation. It wasn't inflamed prior to surgery when they did the scope. I know one of the joins is close to there as I have very little sigmoid colon above my rectum now.

Not sure if the marshmallows worked but my stoma was quiet today on the change. I've read lots of people that swear by it. Change was a piece of cake today. I just had the nurse supervise.
Posted 9/23/2013 1:14 AM (GMT 0)
All is good on the stoma-front! Marshmallows are really good frozen, by the way.

Are you still on the prednisone?

If the rectum's inflamed, is there a chance for other problems to arise (given that you have Crohn's colitls)?

What doctor was it that sent you for the tests?
q
Posted 9/24/2013 6:48 PM (GMT 0)
well my GI checked me into the hospital. He was worried about a clot with all the fluid and the fevers and me feeling fatigued as hell. I just had the fluid drained from my lung. There was a full liter of fluid in there. Not a fun procedure! they also have me on a breathing machine 4 times a day with some medicine I inhale. CT scans of my lungs showed no clots. No they test the fluid for everything. The next issue is the constant discharge from my rectum. They did stool tests from my bag now they want to test what's coming from my rectum. They do still have me on prednisone but still 10mg and the pentasa. I can't take a deep breath yet as the procedure causes sharp pains for a bit afterwards. I am back on my low residue diet so I have food again. Thank god because my stoma was dumping liquid like crazy.
Posted 9/25/2013 6:24 PM (GMT 0)
Oh wow....yep, I can relate to the fluid drain. It's good you had it done to take that pressure off.

I'm relieved to hear your GI will be testing everything....I assume the medication you're inhaling is a long-lasting bronchodialator?

It's also good no clots...

When do you go back to the GI?

I'm going to ask...since you've had the ostomy, would you opt for complete colon/rectum removal? or has that question never arisen?

Wow, I sure hope you get more answers and quickly... it's scary to read what you're going through.

I do appreciate the updates.
q
Posted 9/25/2013 9:05 PM (GMT 0)
Some updates. My pulmonary doc cleared me of his services. The lung fluid came back all negative for infection. He said during abdominal surgery fluid can collect and sometimes the lung will absorb and store that fluid. It was there ever since surgery. My infectious disease doc also cleared me of his services.

My GI saw me here at the hospital this morning and he was going to talk to my surgeon in regards to the inflammation and also waiting on the rectal content test results.

Because they mentioned Crohns colitis they won't do a full colon removal in case there is a chance I have full blown Crohn's disease. I haven't had any small bowel issues and I've done the camera pill in the past to check but their consensus is only to do the segment.
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