I'm having surgery and random questions

Lactose intolerance generally happens in the small bowel. The enzyme that digests lactose (lactase) is in short supply for one reason or another. It doesn’t tend to improve after colectomy, unfortunately. 

Some of us can pass gas safely, and others of us never trust a fart. You’ll find out which group you are in.

Hi

I assume that the bags are the same if not very similar.

Unlikely that your lactose problem will change, but you never know.

The gas passing will also be random, although I believe most cannot. I have only managed to pass gas in my sleep.

Good luck

I used the same bags for my loop and end ileos.  Most times I can pass gas without any issues.  But in the first few months or so it wasn't as safe to.  As Scott said everyone is different.

I had to switch to a convex wafer with the loop.

I believe I used the wafer also.  The one thing different with the loop was that initially there was a bridge, that made it a little more difficult to place the bag over the stoma.  I believe this was removed about 2 weeks after surgery.  Once that was removed, things got easier.  I had the loop for 8 weeks and the end for 7 months.

I can pass gas safely so long as pouchitis is under control. As for the bag question, I had a bag in 1992 with the loop ileostomy so any information I could provide is out of date. As Scott said, colon removal isn’t going to solve any lactose intolerance issue because the colon isn’t involved in that aspect of the digestive process.

I really hope I'm not going to be incontinent at night because that's what I'm dealing with now and I'm sick of it. 

What is a convex wafer? What do I need to know about stomas I don't know yet? I don't know what I don't know. 

I know it seems overwhelming right now. You can do this. One of my favorite resources for learning and support was the online ostomy support group on www.inspire.com. It’s just like the j-pouch forum, but everyone has a stoma.

Check it out. Go to www.inspire.com and search for “ostomy” and you’ll see the group. Or just Google “ostomy forums.” You’ll see several forums to choose from. Get on and start reading!

Andrina, a wafer is just a ring that sits around the stoma and can allow for a better seal.   Not sure how people get by without one to be honest, I always needed one.  Don't think I was very good at applying the bags, they either fell right off or leaked, apparently I just hadn't found the right products, different products have different glues and some work better with different skin types. 

Fortunately, i only need the bags for 12 weeks    then I switched to the pouch... prefer the pouch.

In my opinion; ConvaTec bags and waffers are by far the best products/appliances for your ileostomy, whether a temporary loop or not

  Prior to discoverying ConvaTec, I tried every brand/product out there.

I had my end ileostomy for many years and during that time, I evaluated many stoma brands/products and new appliances and each and every one failed one way or another, either within hours, days or weeks and I always reverted to ConvaTec appliances.

i did experinced one or two manufacturing issues with ConvaTec appliances, which were always quickly addressed.

ConvaTec products and their Delivery Service (here in the UK it's AmCare) are in a league of their own and no other ostomy brand or appliance comes close.

Salts Stoma Collars are essential too, which affix over and around the stoma to ensure the stoma output goes into the colostomy bag without seeping under the waffer/base plate and eroding your skin.

To keep things snug and help conseal the colostomy bag; acquire Comfizz high waist unisex boxer shorts, similar style as cycling shorts (available on NHS prescription in the UK).other brands are available but Comfizz are far superior.

I had ileo for 9 months last year & the wafer was a must. I also needed stoma powder because I have really sensitive skin. The key to the fit is make it tight with no room for leaks. I wore a stoma belt to prevent drooping(drag) which also kept it tight & in place. The stoma is big at first then settles down in a few weeks. Do have the prescription in place with the supplier. My order was held up many times because of mis communication with the  prescription  & a couple of times I was almost out of supplies.  I don’t understand why the suppliers don’t allow for practice/mistakes. I liked the Sensa Mio- I cut my own wafer to fit my stoma. I changed wafer/bag in the morning every 3/4 days before any food as it was the quietest. You start to notice wafer getting lose & it’s time to change. I bought a pregnancy support band to wear over the appliance so I had a smooth fit under clothes & kept it snug to my body.

Good luck

Forget powders to protect the skin around your stoma; apply Cavalon Barrier spray, then ilex Protectant Paste onto the skin all around the stoma prior to affixing the appliance and before any skin issues occur.

Also, cutting a flange/wafer to size of the stoma is yesterdays technology, ConvaTec offer a mouldable flange/wafer, no cutting whatsoever; just use a ConvaTec Size Template card over the stoma to ascertain the closest size and order appropriate mouldable flange/wafer

In my experience, you’ll use many products and combinations until you find what works best for your stoma and body type. As others have said, call the major manufacturers for free samples. Many of these companies have a chat line—a stoma nurse or product rep—so you can discuss your issues and they’ll try to set you up. Lots of trial and error. It took me 5 months to finally put together a system that was—for me—comfortable, convenient to empty and change, leak resistant, and protected my skin. I know it seems overwhelming right now but you have no choice but to engage, learn, and get back in control to maintain your sanity. 

Jfill21 posted:

In my experience, you’ll use many products and combinations until you find what works best for your stoma and body type. As others have said, call the major manufacturers for free samples. Many of these companies have a chat line—a stoma nurse or product rep—so you can discuss your issues and they’ll try to set you up. Lots of trial and error. It took me 5 months to finally put together a system that was—for me—comfortable, convenient to empty and change, leak resistant, and protected my skin. I know it seems overwhelming right now but you have no choice but to engage, learn, and get back in control to maintain your sanity. 

This maybe so, but start with the best first, ConvaTec

No other brand or products comes close or compare.

If only I could have made a Franken-pouch-system using the best features from the top manufacturers. I found no one system perfect.

I also only tried the ConvaTec right from the start and stuck with them through both end and loop. The only thing I played around with was the powder and the wafer.  I really liked their product.  I also used the pregnancy support bands at times. It helped to wear leggings in the beginning for comfort.

From my experience, ConvaTec pouch system are as good as perfect.

Two piece systems

Mouldable flange/wafers .... No cutting necessary.

Convex flange/wafers

Self adhesive pouches

Click On coupling pouches

Various capacity closed pouches

During my time usung ConvaTec appliances, I only had one or two quality control/manufacturing issues.

Where as with products from other recognised brands, they always failed, some within hours.

Once a product fails, confidence in that product is lost.

The issues I experienced with ConvaTec products were relatively minor and very quickly resolved and didn't result in serious leakage or complete failure.

I hated my life with a Stoma, especially just after the removal of my bowel and some of the products provided by the Hospital compounded my feelings, but the ConvaTec products made my life with a Stoma all the more bearable.

I felt so secure wearing the ConvaTec 2 piece appliance and my Comfizz boxer shorts that I was able to complete day to day activities without the constant fear of leakage, which I was unable to do when using ostomy products from any of the alternative brands.

I will take a look at ConvaTec. Thank you.

Will it be save to take Ibuprofen after surgery? Or is it still a big no-no? I was diagnosed with ulcerative colitis and I stuck to acetaminophen.

Even after surgery, my surgeon instructed me not to use any ibuprofen.  I only use Tylenol, and then very rarely.  After all my surgeries, I basically weaned off painkillers to Tylenol very soon after returning home.  For my last, I never used anything but Tylenol, starting in the hospital.  I believe I was given oxycodon but didn't need much at all, probably most for the first surgery, not for long though.  It just depends on how you do and how your recovery goes.

I requested samples from convatech and they said they cannot help me yet because they don't know what size I'll be and also they want to contact my doctor. 

I came home with supplies from the hospital and received my first order pretty quickly.  Never had an issue with running out.  The ostomy nurse at the hospital should be able to help you out.  I don't remember exactly how my first order was completed.  Hope it goes well for you.

I just wanted to see them and get familiar with them but apparently selecting "pre-surgery" on the web page doesn't mean anything. 

After surgery, how long should I wait until I can have alcohol again? Been avoiding it during my flare but I really look forward to having a good time again.

Thank you all so much for your support. It means a lot to me.

Alcohol causes diarrhea ie high output and you don't want that with a stoma. Especially if you wanna "have a good time". People with stomas also get dehydrated wicked fast. My GI told me if I wanted a drink to have half a glass. Some people out there don't care though and do whatever they want. Just don't be surprised to end up in the hospital if you're one of them.

Also drinking fast will lead to high output and dehydration also. So you're gonna be just sipping on liquids all day.

I had to measure output at the beginning and record it.  I believe I was instructed to call my surgeon's office if it got over a certain amount.  Agree with drinking throughout the day.  It's now second nature with me.  I had my first surgery about three years ago and have never been dehydrated.  I was also given Lomotil to slow things down and a low residue diet for a month or so.  Pretty much stayed away from alcohol for a while.  I rarely drink much anyway so it was no big deal.  My surgeon gave me a packet prior to my surgeries to refer to that I feel helped me.  Some is a little dated, but basically gives good info.  It's called Ileoanal Reservoir Guide. You can google it if you're interested.  I read through it and wrote down questions I had before surgery.  

I just want to be able to have 1 or 2 shots of rum on the weekend or maybe a glass of wine. I guess it will no longer be possible. 

So I had surgery Nov 9th and by Thanksgiving, my surgeon said it was ok to have a glass of wine on occasion.  I had a great meal and some red wine.  

I would not recommend having alcohol while you have the ileostomy but after you get the J Pouch, in time after you heal, it's no problem to drink alcohol so long as you are conscious that it will dehydrate you and, accordingly, you must hydrate while drinking alcohol.  My only problem with alcohol is red wine (which gives me diarhhea).  Rum, vodka and other spirits are no problem. I can also drink white wine with no problem.  I am also on a 2 drink limit because of my methotrexate (in theory the liver can only take so much, unless you are Keith Richards who apparently has an indestructible liver).  However I may have a hardy liver as well because my liver chemistries never got whacked in 3 years of methotrexate and this despite breaking the 2 drink restriction on many occasions, sometimes severely.

CTBarrister, may I ask why you're still on methotrexate? Do you have any other auto immune disease which makes this necessary?

I'm on methotrexate too and my WBC has tanked 4 digits in 4 months and I'm nearly at the point where it's too low and gonna get taken off of it. I have chronic pouch inflammation and crohns. Yeah, some of us just can't escape the IBD even when we get the pouch, but we are in the very small minority. It probably won't be you.

The surgeon said he was going to send the colon to pathology to find out if I really have Colitis. I guess this isn't always done? 

I was newly diagnosed with UC and had my surgery 7 months later.  My surgeon also had my colon sent to pathology for the same reason.  He wanted to be pretty confident before he actually did the j-pouch.  Came back with pancolitis, moderately to severely active.  

Andrina posted:

CTBarrister, may I ask why you're still on methotrexate? Do you have any other auto immune disease which makes this necessary?

You have to take methotrexate with Remicade. It suppresses renal secretions of Remicade. Methotrexate goes with Remicade like bread goes with butter or peanut butter goes with jelly. Milk and cereal.

Why are you still taking remicade when you had your colon removed? Unless your Colitis was misdiagnosed and it's really Crohn's? 

Andrina-

Chronic inflammation of the Pouch for 26 years. Whether it’s pouchitis or Crohn’s is unknown and doesn’t make a difference. Remicade has it all under control. Life is good. I am a full time trial attorney for those 26 years with a J Pouch.

I think pouchitis or cuffitis is still an IBD flare,

That sucks. I'm getting surgery to be done with IBD. My surgeon even said I can stop all my medication after surgery. 

Pouchitis is pretty common after surgery. Most people have it once and then no more. I know people who are off all meds. That might be you! There isn't any way to know beforehand which category you'll fall in. But I prefer no colon than a colon that always gets inflamed. Everyone does. Not many have regrets.