getting a little discouraged

So I know I've been Ms. Sunshine & Rainbows re. ileo- but jeez, I'm tired of being in pain & feeling crappy! Today is my 1 week anniversary. My abdomen just feels like it's been turned inside out. My stomach hurts. My rectal/vaginal staples are oozy, itchy, & irritating as hell. They're not infected, they're just kind of gross! My stoma is doing ok- but how does one tell if it's swollen or not??? Looks the same to me.... I'm still on pain meds, 1 oxycodone & 1 dilaudid every 6-7 hours or so. I spoke w/the surgeon on-call over the wknd- was concerned about the rectal oozing. But he said it's totally normal to still need pain meds after this major of a surgery. I'm *hoping* things improve vastly over week 2- I get all the staples out on Wednesday. To echo that other post re. ointment- is there any sort of lotion that will soften the skin down there? The way I feel right now, physically... I can't imagine being active & pain-free! Tell me it will get better ASAP!

Your stoma will be swollen for about six weeks. I took a pic of my stoma right after surgery, and when I look at it now (knowing what I know about what it looked like when it wasn't swollen), it's like WOW that's HUGE! As long as it stays reddish-pink, don't worry about it!

One week is nothing, most people are barely out of the hospital by this point, and you better believe everyone's getting pain meds in the hospital. You're just an overachiever

I echo all the other replies. Pain that is a nuisance/distraction and sometimes worse, is something that will come and go for months to some degree, and it is hard to notice day by day improvements for surgery this major-- improvement can usually be noticed week by week, but even there one can have setbacks i.e going backwards (hopefully not in your case, but I did) such as incision infections that need treatment. Yet in the end, it will all be over and overall will progress dramatically over a few months. In around 6 months, and most likely earlier than that, you will feel no residual surgery pain at all. Delending on your age and fitness entering into surgery, your energy level may or may not take even ,onger than that to be fulky back to pre-UC levels but dont try and hold yourself to some hard timeline. Set yourself little milestones- eg for me it was walking a block, then three blocks, then half a mile, then a mile, and within a couple months i was walking 7 or 8 miles i think lol. Anyway, you are nuts uf you are exoecting to be pain free a week out if such massive surgery. Relax. I know all too well though that it can be tricky trying to straddle the fine line between keeping pain under control (much much easier to keep pain suppressed than waiting for it to flare, so dont skimp too much) and not using narcotic meds, since they slow down the new plumbing from waking up. I didnt hesitate to use a bit if narcotic meds as needed but I also tried to follow the weaning schedule that I was given as best as i could.

PS addition-- during the incision healing stage, one becomes hyoer aware of the stoma because there is some pain around it from the incision pain surrounding the stoma, including the tissue traumatized deeper beneath that area.... Once those incisions heal up , gradually ober a couple months or maybe a bit more, all that pain ends and one no longer "feels" any sensation at the stoma, any mire than one "feels" ones belly button or whatever. I havent yet (and have no plans to lol, but i guess one day will have to i suppose?) had my rectum removed and all that but obviously the same would apply to nuisance pain/awarneness of "something down there" that eventually will fade to nothing (i.e. No pain/sensation/distraction).

Post Edited (Probiotic) : 4/21/2014 9:35:35 AM (GMT-6)

First of all, relax. Second, unfortunately, it's not going to get better ASAP. You've had a seriously MAJOR, bodily function altering surgery. It HURTS. And your body has a lot to recover from from the surgery alone ON TOP OF whatever damage was done from being sick.

I was taking percocets after my colectomy just about every 6 to 8 hours every day for almost 6 weeks post op. And then after that I switched to extra strength Tylenol maybe once or twice a day for a little while afterwards.

As far as the stoma being swollen, well, it probably is. Not in a bad way though. I'm sure most of your abdomen is probably swollen just from the surgery alone. What type of incision did you have? I had a laparoscopic one horizontally along my pelvis and at 108 lbs I still looked like a had a belly hanging over the incision site from the post op swelling.

The swelling of your stoma right now is something you won't even notice because you have nothing to compare it to! But it will shrink over time (my flange size was 1 1/4" post op to a little more then 1" (but less than 1 1/8")). And even THEN once it's settled down post op (which will happen over the course of at least a month) it will shrink and grow throughout the day just because that's what the organ does. It's not a bad thing. What you need to pay attention to is does the stoma or skin surrounding it hurt? Feel itchy? Has there been a lack of output or activity (shrinking, growing, bowel sounds) from the stoma for six hours? At this point a lot of your abdominal and stoma discomfort is likely coming from gas in the body. Walk around as much as you can. Stretch a little or as much much as your body will allow. But if there are days and times it doesn't want to that's okay.

Things WILL get better. But you still won't be running that marathon anytime soon. Unfortunately strength and stamina tend to be the last things to come back fully. But the important thing to remember is that everything WILL come back. This time permanently.

I know how living with UC for so long can train you to have the mindset that any step forward is useless to get your hopes up over and the missteps are just signs of the impending doom that's coming. It's not like that anymore. Soon the good days will significantly outnumber the bad until there are only good days happening.

But you still have to remain patient and take the time to allow your body to heal. Save this post and look at it in three months and I guarantee you'll be shocked and laughing :)

Hey Eva, I'm curious, are you planning on a J Pouch, not sure if you specified that. Glad you're feeling better. :)

Hi Eva - oh I soooo understand how you are feeling! I came to learn - over the past six months - that patience is key! There were weeks that went by that I didn't even notice improvements, I had to think long term and plan for mini successes over a month or so.

Be gently and patient with yourself, your body just went through a crazy time!

As for any perianal issues, I repeat what I said in another post, don't put anything on it unless approved by a WOCN nurse or your surgeon. The perianal wound is notoriously difficult to heal as it is prone to urine and vaginal bacteria. Keep it clean with warm water and a squirt bottle, then tuck gauze along the incision to help it dry.

Hugs :)

I thought the recovery was tough for me.  It took me a good 6 months to feel myself again.  I remember thinking I was closer to death than actual life for at least two weeks after surgery - I had no energy what so ever and was in extreme pain.  I had also lost a lot of my core strength and stamina due to being in a hospital bed for weeks and having lost so much weight.  That being said, I could hardly stand or sit upright for longer than 15 minutes without experiencing a lot of pain in my abdomen and having trouble breathing.  I also had a lot of issues with my memory and that inhibited my ability to have conversations with people.  This made it especially difficult when I had to go back to work at less than 6 weeks post op.  I have no idea how I even managed. 

Prior to that surgery I had only had a couple of minor, same-day surgeries and had denied the pain meds both times.  I was completely taken off guard and disappointed in myself regarding how long the recovery was taking and how much I really did need the pain meds.  Looking back now, I realize that I was not nearly as patient with myself as I should have been.  My doctors kept reassuring me that the surgery was as major as abdominal surgery gets and that recovery is expected to be long and difficult.