Seeking opinions

Sorry that your having some problems with your pouch. Have you talked to your doc to see if maybe the UC is flaring up in the bit of rectum still left? Also I use Huggies wipes when I use the restroom. They clean a lot better than regular TP and are less irritating. Hope it gets better for you.

My take down was also June 2012. I too am having a rough time with rectal pain and some butt burn. Dr. put me on a 1/2 dose of Questran twice a day, Balneol for external cleansing, Immodium before each meal, Lidocaine and Vicodan for pain. Some days it works great. During others, it is back to diapers and Calmosetine.I have to give a speech Tuesday to 200 people at a luncheon. It is going to be a challenge. My surgeon says this will disappear. It is a difficult to stay positive. I am afraid to eat anything but the gentlest foods.
My first two weeks were great and pain free. I have to hope it will be that way again.

I also had my surgery June 2012 and am struggling with similar issues - butt burn/soreness, frequency, anxiety, excessive bloating, gas, weird sensations, fatigue....

For the burn, the creams help, as do sitz baths and a bidet if you can get one. Eating fiber wafers or bread during the day helps slightly with the burn, although some days I seem to get it for no rhyme or reason.

I think the exhaustion will take a while to subside since our bodies are using a lot of the nutrients to repair tissue and recover from surgery.... plus as you said, we may not be absorbing properly just yet. I take naps from time to time since my sleep is interrupted with bathroom trips. Also, taking a multivitamin or Ensure/Boost/protein drink might help. Staying hydrated is also important and I constantly have to keep up with that.

I had some insomnia too earlier because my brain would not shut off, but eventually my exhaustion takes over. Maybe reading a book or taking something before bed might help with that (you could check with your doctor). Sometimes it could just take time.

I notice a few drops of blood in my stool, and understand it is normal from time to time to pass a little blood with the j-pouch (kind of how the stoma was sensitive and if irritated would bleed slightly). As long as it's not blackish color or cupfulls of blood, it should be ok. There is the cuffitis possibility which can be diagnosed with a rectal exam.

There are days when I seriously consider going back to an ostomy (I had one for 5 years and loved it). But I just spent a month with complications in the hospital to get this pouch, so I feel I should give it 12-18 months before turning back. Firstly because I'm still recovering and another surgery is not something my body can handle right now, and secondly because major improvements could happen in that time frame. I remember the first several weeks with the ostomy were hard mechanically and psychologically - getting used to the appliances and changing the bag, trying new foods, feeling confident leaving the house, etc. However, the ostomy was also easier in some ways. No sensation and no pain whatsoever passing stool (except for the rare leak that would sometimes burn the skin). I know I could easily live with the bag and that option is going to be there, so if I'm still unhappy a year or 2 from now, I can revisit that option.

I think we are all still very early in this sometimes excruciatingly long recovery process. It would be interesting to see where we all are 3, 6, and 12 months out.

There are definitely tradeoffs with each type of surgery. Here's hoping we all continue to improve and learn from each other.

Sorry to hear about your ulcer take leaked into your abdomen. On the bright side, they were able to treat you prior to any further damage occuring...

Re. BB, I second the bidet suggestion. You can find them quite cheap on Amazon. If you can't do the bidet, you can use a squirt bottle - there are perineal bottles on Amazon for about $3. If you can use water every time rather than TP to clean up, you'll be one step closer to getting rid of the burn. For sleep, you could pop a melatonin (I do 1 mg.), or even a children's benadryl.

Having had your takedown in June, it's understandable that you'd still be suffering from exhaustion and even considering the bag, however, as Minnie noted, you're very early in the recovery process. I'd suggest giving it a little more time; work on the BB, take naps, keep hydrated, and even give your dr. a call to ask about cuffitis, which is relatively easy to treat (suppositories).

Best of luck - please keep posting, let us know how you're doing/what you decide.

couple things to try: try sitz baths, try eating things with tons of protein, and don't be shy about trying some mild over the counter sleep assistance- even baby benadryl. You need to get some rest to heal.. AND to be able to think clearly about your quality of life and big decisions.

Also you may need to slow down transit time for your body to more fully absorb nutrients.

I agree with everything that has been said. It DOES and it WILL get better. Give it time. One suggestion at this time is to consider energy conservation. Remember to take naps if you can (if you can't just take time to lay down and relax, don't do too much on your "good" days and don't spend a lot of time worrying. Take time for you, to do the things you like a little at a time. Trying taking a hot bath and drinking some warm milk before bed. Do not watch tv or do anything over stimulating before bed. Remember that you may not be falling asleep because you can't tire out your body during the day, this is temporary and will change as you start to heal. If you feel comfortable, ask friends and family for support with things that take a lot of energy such as cooking a cleaning while you are in the recovery process. Drink lots of water. Use lots of Calmoseptine and don't use toilet paper. Pretty soon, this will all be a bad memory and you'll be feeling much better.

Yes you should see your gi or surgeon to make sure all is ok. Also make sure that your not anemic. After my surgery I remember becoming very weak and it turned out I was very low on blood. Wish you the best of luck! The body is amazing and does adjust with time.