All I can say is surgeons need to come in here and read some posts.  Get an idea what to tell a patient what may go wrong and what to expect.  Cause all they know is what you tell them.  That's what I found out.  I like you had nothing when discharged.  And mine didn't work.  Right anyways.  I have an ileo now.  Two plus years of razor blades and lava poop was enough.  I'm good now.  Done suffering. 

Richard 

Sharon, I know the pain and frustration you are now feeling since I went through very rough times after my j pouch procedure in 1983.  I was advised to keep my bottom as clean as possible and to apply a barrier cream after each BM.  I also took medications to reduce frequency (like Lomotil) and acidity (Questran) and attempted to avoid foods that increased skin irritation (keep a diary of what you eat).  Look through posts on this forum for suggestions of what has worked for others in your situation.  Don’t be discouraged by posts of people who have had their j pouches removed, and I don't mean to offend them since they tried to make things work and opted for something that did work for them.  Give yourself time for things to improve, as difficult that can be at this time.

When I was going through extremely difficult times many years ago, a good friend gave me the poster that I have attached.  Don’t EVER Give UP!!!  Best of luck.

Bill

I wasn't suggesting removal.  Heck 5 days is nothing.  

I was told to give it 18 months.  I gave it 26 plus months.  I knew it wasn't gonna work. 

I trust things will get better.  Five days is nothing in the scheme of things.  Now is the time to start trying Lomital. Diet.  And all the things suggested in other posts.  

Dig around you will find good information here. 

Richard. 

Your complaint is so common it should be on the discharge instructions. "You'll wish you never agreed to surgery for the first couple of months." An easy adaption is the exception, not the rule. Expect functional improvement by weeks or months, not days. Most people see significant improvement within 8-12 weeks. 

Patience is more than a virtue in this case. It is essential.

It does get better in 80-90% of cases.

Jan

All I can say is this is common.  You have a brand new pouch!  Your body needs time to adjust.  It may take a while but it does get better.  Please give yourself time for your body to adjust, it does get better.  

Thanks y'all! I just had a panic attack about this, wondered if that was why I really got nothing about post-op from Dr since it was exactly like my nightly battles with UC. If they told you all this you might not do it. But they need to tell you Something to prepare you. 

What a difference 36 hours, butt balm and immodium make! I'm so happy to have made it through the night with only one real rush to restroom. I ate more blandly as well. I can't say it doesn't still hurt, but much more tolerable if I know it's a stage. I just wish was told it was a possibility before hand. I thought I woke up last year, with a colon and UC...I will inform Surgeon on need to tell patients about this when they consent to surgery.

Sharon, hang in there we have all gone through this with butt burn etc.  It will get better!!  I am about 6 years out from my surgery and am doing great!  I can eat most things but have to stay away from spicy hot foods or I experience butt burn again. I eat Meta-musal wafers with most meals , it helps form the stool. 

I'm so happy to not have UC anymore and you will be too.

Stew Moore posted:

Sharon, hang in there we have all gone through this with butt burn etc.  It will get better!!  I am about 6 years out from my surgery and am doing great!  I can eat most things but have to stay away from spicy hot foods or I experience butt burn again. I eat Meta-musal wafers with most meals , it helps form the stool. 

I'm so happy to not have UC anymore and you will be too.

I now notice even with a stoma ya gotta be careful with spicy food.  I can eat hot sauce now.  Homemade hot sauce.  But I can tell within a few hours what's going on.  I wouldn't dare eat it with a pouch.  No way. 

Have faith in yourself and your new plumbing.  A positive attitude goes a very long way no matter how bad. 

Sharon W posted:

What a difference 36 hours, butt balm and immodium make! I'm so happy to have made it through the night with only one real rush to restroom. I ate more blandly as well. I can't say it doesn't still hurt, but much more tolerable if I know it's a stage. I just wish was told it was a possibility before hand. I thought I woke up last year, with a colon and UC...I will inform Surgeon on need to tell patients about this when they consent to surgery.

Good to hear your noticing things change in such a short time. 

Well now I am feeling dumped on and left for the coyotes. I was unable to reach my Surgeon yesterday. I thought ok. No problem. Well, today I am in so much pain, think stoma site is infected, can't force myself to eat because I know it will hurt my rear. I called VA emergency room and was told would page the surgeon on call for what to and that was 2 hours ago. I mean way to make your patient feel insignificant. If I wake up tomorrow lIke this, I will be at ER. The only thing stopping me today is its 2 hrs away and we had a small accident so nobody really wanted to be out. Sorry probably should have put this in rant page. 

3 years out and don't have any significant issues.  I no longer let it "define" me and often forget I have a pouch.  However, I am letting the trauma to my leg define my limitations... since it really does limit my mobility /ability, more so than the pouch or UC ever did.

Sharon rant away!  But go to the ER. If you feel something is not right just go. It could be something that you ate for sure. It could also be stool getting on your skin. That is extremely painful. Not sure how you treat it. I remember my son having bad burns on his skin in the beginning. Now he gets irritated because he uses too much tape on his skin. It could be anything but dont wait. You only prolong the pain. Good luck 

Ok. Now i am feeling like someone took a fork to my anus and stabbed it violently about 8 times. I have nothing for pain. I thought about a shot of whiskey to relax. I dont know if I am cut out for this. Im 16 days out some are better than others. This was definitely the worst.

It feels like centuries since I suffered what you are going through (I now have a k pouch) but I still remember the pain and horrors of owning a backside so...

Soak. Soak. Soak. Sitz Baths are your friend, so are bidets, spray bottles of lukewarm water with a drop of some sort of glycerine soap (those bars of transparent soap that you can buy at specialty stores or even dollar stores)...they sooth and ease the pain.

It is the bacteria and acidity that causes the burn, toilet paper only makes it worse. So you need to give your bottom a break...water is your friend...stay close to it...(it is pool season, get yourself a baby pool...And sit in it!)

I have an abdominal stoma and it has been moved 3xs, every time that they move it I get the burn for about 3 months until the skin gets accustomed to the acid and toughens up.

One of my surgeons prescribed an anesthesia cream that put it to sleep for a while (pure relief)...you may want to try that...but not too often.

The Godsend is aloe vera gel with cooling agent and anesthesia...works wonders...really cheap in local drugstores and now that it is summer it is so easy to find...I keep a tube upstairs in the bathroom and you can put one in the fridge too...(yup, it works...hubby can testify to it...for non pouch related reasons )

Hang in there girl...it will get better but you need the tricks of the trade to get you through it all.

Sharon 

Thanks Sharon. I feel like it is getting a bit better but I just struggle with it daily. It still hurts so much. The problem with baths is we live in rv so no tub. But I absolutely can go for the kiddie pool. I will try the squirt bottle too. I will pickup the aloe vera gel too. Thanks again.

Sharon W, I lived in my rv for many years until I finally settle down on a yurt. Since you don't have a tub and I doubt a sitz bath is made to accommodate the size of an rv toilet, you could design a sitz-type bath for your shower. Could be as simple as a bucket with a pool noodle foam thingy wrapped around the top to sit on, fill with water and soak away. I remember storage space was always an issue in the rv, too. You could design a collapsable PVC frame to accommodate a standard sitz bath. There are also camping shower tents that are fairly inexpensive so you could move this whole operation outside rather than in your rv shower. Also, adult wipes are much better than toilet paper! Bidets are the best (conversion kits for standard toilets are as cheap as $30; I have a $60 model with hot & cold water), but I am not sure if the water supply line could be modified for an rv. It's worth looking into, though. The sqray bottle mentioned by Sharon (SKN69) is a good replacement for an actual bidet or when you are away from home. There are also inexpensive travel bidets available which a similar to spray bottle but have a more curved "neck" or "arm". Aloe vera gel is amazing, too! I like mine refrigerated so the cool sensation provides instant relief. 

If you have any questions or need more suggestions on designing an rv-friendly sitz bath or bidet system, feel free to send me a PM.

Hope you find some relief soon!

Laura

Some commercial sitz baths seem to fit RV toilets just fine. Here's an example: 

https://www.amazon.com/Portabl...Yellow/dp/B000FHFP76

Sharon. The squirt bottles are a must for me. The consistency of stools changing that some can feel uncomfortable and itchy. Therefore the immediate squirt from the bottle is instant relief. I keep two hand in case in squirt isn't enough. I'm 3 weeks out and I'm now where I feel I have good days and some not so good. I eat stuff to try to bulk the stool as I find when it is bulky, the stool doesn't irritate much when being released. 

Sharon,

It does get better.  My husband is going on 22 years with his j-pouch.  So much better than having colitis and the medication that sometimes made him feel worse than the disease.

Sharon, 

Is there a dollar store anywhere near you? 

(I was playing with the grandkids yesterday and got an idea for you)

I have found that with a little bit of imagination, a few dollars and a trip to the dollar store you can make just about anything.

I would see if I could find a plastic bucket (here we call them sink liners because they don't have handles, are shallower than buckets and smaller), round or square depending on your body and comfort zone, an inflatable inner tube like the kind kiddies wear in the pool (it allows you to inflate or deflate according to your needs) (you can also use the inflatable armbands and put them on the inside on either side of the bucket) and water.

You can also pick up some cheap aloe vera gel there sometimes.

Use lukewarm water, a tsp of aloe vera, fill the plastic sink liner about 1/3 and then place the inflatable inner tube (like for kids in the pool) over it to prevent you from falling completely in.

Play around with different sorts of things...

I like inflatables because they don't take up much space...store the whole thing somewhere out of the way when not using...

Sharon