I'm really new to this so ill start with a little bit about myself. My name (as you can already tell) is Kaitlynn Tulett, i'm 14 years old, and when I was in 6th grade was diagnosed with universal ulcerative colitis. Before this all started I was a very healthy and very active person, I played travel volleyball for which we had tournaments every weekend and practice every Tuesday and Thursday. I also played travel soccer for which we had practices on Tuesday and Thursday. Anyways, it started with just simple diarrhea which we thought was some sort of stomach bug, and I didn't have any other cold/flu like symptoms so we didn't think much of it at the time. After about 3 weeks of me having constant diarrhea the blood started to come out too and I was missing a ton of school. We had gone to the doctors multiple times and still no one seemed to know what was wrong with me. Weeks became months and the healthy, active girl I once was, was now someone who spent her days in her dark room cuddled up in bed, homework piling up, and nonstop trips to the bathroom. I had weighed about 115 lbs before all of this and as I entered the second month of my ordeal, I now only weighed about 90 and was the color of a piece of paper. Another month went by and I was finally sent to see a gastroenterologist, this was also when I found out about my colitis. They ended my 'flare' and sent me home on some meds that would help control it. I was so happy to finally be able to live my life again. I was no longer tired all the time and my bowel movements went back to normal. I thought that would be the end of it, but boy was I wrong. After about 2 years of being happy and healthy, I had another 'flare', but this wasn't a normal one. I'd always feel like I had to go to the bathroom, but i'd sit there and nothing would come out and it was extremely painful. I was also extremely lethargic and didn't want to do anything. So we went back to my doctor and there weren't any promising treatment options at all. It surprised me to be honest, I thought there would at least be something that would work but everything had a 50/50 chance of working and not working. So we decided removing my colon was my best bet. It wasn't a very tough decision for me at the time because, quite frankly, I was sick of the damn thing. As the time leading up to the surgery got shorter, I realized I was probably the most calm one about it. My entire family was so nervous and scared that I couldn't even talk about it without them bursting into tears. This didn't help with my confidence, and instead of talking to someone about it, I'd lock myself in my room and cry. I felt very alone because no one knew what it was like to feel the way I did all the time. My teachers also didn't believe I was sick. They'd say things like "But you don't look sick." And "Quit making excuses." But about a week before the surgery was scheduled, I tried to back out of it because I was scared now too. But I talked myself through it, and decided that I had to do this. We decided to do a 2 stage procedure, which means I'd have one surgery to take my colon out and I'd have an ileostomy for a few months. I HATED the thought of having an ileostomy. I didn't want the scar, I didn't want to have to deal with the smell or noises it made, I just didn't want to deal with it in general. But, as I soon figured out, it wasn't as bad as I thought it would be. Yeah it took some time to get used to, but overall it wasn't so bad. After about 3 month of having an ileostomy, I got the reversal surgery which was on Wednesday the 25th of May, 2016. They said I'd be in the hospital for about 10 days, but I was released on the 4th day. Today (May 29th) will be my first full day home, and let me tell you, yesterday was anything but pretty. My butt feels like it's on fire from pooping so much, and I only got about 5 hours of sleep last night. Im also super sore around my old ostomy site. This has been such a journey and I know its far from over, but im hoping all turns out ok. If you have any tips/stories Im open to anything. Im not someone who usually talks face-to-face with other people about this, so it'd be very nice to hear from someone.
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Welcome, Kaitlynn! I hope you're using some sort of barrier cream. It gets applied after every BM, to protect the skin during the next one. It doesn't heal the burning, but prevent any more from getting added. Simple zinc oxide, available at any pharmacy, often works fine, since it's really just keeping the poop away from the skin. Some people prefer products like Calmoseptine, Desitin, Ilex, etc. I used a barrier cream for about six-twelve months, and then didn't need it any more.
This is still very early in the process. The next few weeks should make a huge difference. Good luck!
Scott F posted:Welcome, Kaitlynn! I hope you're using some sort of barrier cream. It gets applied after every BM, to protect the skin during the next one. It doesn't heal the burning, but prevent any more from getting added. Simple zinc oxide, available at any pharmacy, often works fine, since it's really just keeping the poop away from the skin. Some people prefer products like Calmoseptine, Desitin, Ilex, etc. I used a barrier cream for about six-twelve months, and then didn't need it any more.
This is still very early in the process. The next few weeks should make a huge difference. Good luck!
Thanks Scott, I actually already have been using Calmoseptine and bacitracin but do you think zinc oxide would be any better?
Hi Kaitlynn! Sorry that you need us, but you've come to the right place for support and advice. I know what it is like to have UC while growing up, although I was able to wait until I was 40 to have my colectomy.
Unfortunately, it can take many months for things to settle down while your pouch adapts to its new function. Patience is key.
Calmoseptine is good. It contains 20% zinc oxide. So if you are OK with the menthol on your butt, then you should be fine.
Jan 
Hi Kaitlynn,
Welcome to the club that you (or anyone else) never wants to belong to!
We have all had similar journeys whether they were in our childhood, teens or as adults. None of them were easy or pretty but most of us have survived them 
I was a sick kid so I get the difficulty of dealing with the disease as a kid. Not easy, very lonely and terribly hard to make others understand.
So isolating too! I was the lucky one because I had a best friend (still have her 45yrs later) who got me and helped me through the worst of it. I got the principal of my school to give me special priveledges and got a 2nd locker where I kept a change of clothes and shoes and all of the supplies that I needed.
My best friend had the combination and was allowed to follow me to the bathroom if I didn't come back after 5 mins.
She would then run to get me a clean set of clothes or meds or whatever it was that I needed when I was locked in the stall, terrified and mortifed. Don't know how I would have survived without her (this was wayyy before internet and cell phones!)
Warm water and a gentle soap are your best friends. If you do not have a bidet and can't get one then just get a hand held shower thingy that you can hook up to the sink tap or tub tap and use it to wash yourself after each BM...pat dry (gently).
If you can't get that then the next best thing is a water bottle with a squirt top...just squirt the water at yourself, clean up and dry...it helps a lot. Gets rid of those nasty bacteria that cause the butt burn.
You are one very courageous girl...stay strong
Sharon
skn69 posted:Hi Kaitlynn,
Welcome to the club that you (or anyone else) never wants to belong to!
We have all had similar journeys whether they were in our childhood, teens or as adults. None of them were easy or pretty but most of us have survived them
I was a sick kid so I get the difficulty of dealing with the disease as a kid. Not easy, very lonely and terribly hard to make others understand.
So isolating too! I was the lucky one because I had a best friend (still have her 45yrs later) who got me and helped me through the worst of it. I got the principal of my school to give me special priveledges and got a 2nd locker where I kept a change of clothes and shoes and all of the supplies that I needed.
My best friend had the combination and was allowed to follow me to the bathroom if I didn't come back after 5 mins.
She would then run to get me a clean set of clothes or meds or whatever it was that I needed when I was locked in the stall, terrified and mortifed. Don't know how I would have survived without her (this was wayyy before internet and cell phones!)
Warm water and a gentle soap are your best friends. If you do not have a bidet and can't get one then just get a hand held shower thingy that you can hook up to the sink tap or tub tap and use it to wash yourself after each BM...pat dry (gently).
If you can't get that then the next best thing is a water bottle with a squirt top...just squirt the water at yourself, clean up and dry...it helps a lot. Gets rid of those nasty bacteria that cause the butt burn.
You are one very courageous girl...stay strong
Sharon
Hi sharon!
thanks for the tips but when i showered yesterday it hurt to run the water over my skin. Im not sure if it was just because it was so raw or what, but do you think this will go away over time?
It should get better with time. Don't use soap for now (robs the skin of natural oils). If you are raw, the hot water will feel like it is burning. It is possible that the warm/hot water is activating the menthol in the Calmoseptine, so maybe you would be better off with plain zinc oxide for now. It is perfectly fine to try different things to see what works best for you, even if the doctor recommended one thing.
Jan
If water stings then avoid it until it gets better...what kind of foods are you eating? It is really early on for you so a bland diet with no hot spices, nothing acidy (tomato sauce seems to effect a lot of us negatively and makes the stool acidy).
Peanut butter, bananas, toast, apple sauce, rice...all good.
Avoid getting dehydrated, it can be a real danger..drink lots of fluids but avoid too much coke or other carbonated drinks...I use lemon water, coconut water, homemade lemon aide...Whenever I drink juice I water it down to 1/2 and half...
I have a k pouch so I deal with liquid output (a good thing for my pouch) and a stoma...not quite the same needs as you but close.
I used to love chicken rice soup with lots of rice pre-k pouch...thickened things up nicely and was nice and salty. Whole grain toast with P&B or cheese worked well too.
Sharon
I swear by the ilex paste for butt burn; from my experience ilex does heal sore skin and once applied it also protects the skin during the next bowel movement.
Just after takedown and for 5 or 6 months, I used non scented wet wipes to cleanse rather than using a shower of installing a bidet, then I applied the ilex paste.
12 months later, I rarely use the ilex paste; I just use normal everyday toilet paper now and I only have 3 to 4 BM per day, although it does vary and on occasions can be 5 or 6.
Applying ilex paste takes a bit of getting use to; once applied it can be a sticky and gloopy mess; it's all down to applying the right amount for the serverly of the skin damage.
if skin is sore, broken and maybe oozing, then the ilex is best applied heavily for two to three days and reapplied after each bowel movement.
Using wet wipes to cleanse helps remove the ilex.
When ilex is applied heavily, it'll become a sticky and gloopy mess between the cheeks, but due to its effectiveness, it's a small price to pay.
When using the ilex paste to prevent butt burn, treat an itching/burning sensation or the broken skin has healed; then only a pea size amount of ilex need be applied and spread over a larger area; following this method of application, the stickiness is more or less prevented or at least kept to a minimum.
I thinks it's important to identify the type of soreness you're experience.
Since my takedown, I've never actually experienced the more traditional diaper rash which I believe is normally associated with frequent bowel movements; (although I did many years ago when first diagnose with UC).
My current soreness, burning and itching was and sometime still is, due to anal fissures, just to the inside of the anal sphincter.
Anal fissure are tiny tears or cracks to the skin around or within the anus, I guess similar to a paper cut; which stings during a bowel movements, due to the bile acid.
If a fissure is more internal than external, then any creams or paste applied to the outside are not going to heal a fissure that's on the inside.
So, probably best identify the cause of your soreness before applying external creams or potions.
Welcome! I am not a UC/Crohn's disease sufferer (my husband is). He had the 2 stage part done as well. The bag is just temporary! So, hang in there. What my husband did (does), is plan accordingly. Doesn't drink coffee or juices if he has to travel, eats nothing if has a long car trip or plane trip. Eats alot of bananas. Also, drink alot of liquids to stay hydrated especially if you get sick. Sending good cyber thoughts...
Many great replies. I find that a bidet has made a world of difference in curing the burn. You might ask your parents about purchasing one. They can be very expensive and complex, but also cheap and simple. All work pretty much the same.
I have a 16 year old daughter and cannot imagine how mature you have been to handle such a painful illness. Best wishes for fast healing.
Ray C.