Hi. My name is Stephanie. I'm 21 and new to the website. I was diagnosed with left-sided UC on my 18th birthday in 2005. For the first year I took Pentasa and went off to college and had almost no symptoms. Before returning to school in Aug 2006, I experienced a flare-up and since then I've been on every medication you can imagine. From Colazol to Enemas to Suppositories to Lialda to Imuran and finally Remicade, nothing has been remotely successful (with the exception of Prednisone, which as we all know is no picnic). I had another colonoscopy yesterday and discovered the disease has spread throughout my entire colon. I had prepared myself for the idea of surgery a month ago and finally told my doctor it would be the best choice. He heartily agreed with me and we've made arrangement for my to meet the surgeons who perform the j-pouch procedure. I want my life back. I want to go back to school, be able to socialize, study abroad, and eat something other than jello and broth! I know the doctors can answer my technical questions, but as far as personal experiences in dealing with it, I figured I could find answers from people who've lived it. I'll admit that, like most, I'm incredibly nervous about the j-pouch surgery and how well it works out. How challenging is living with the ostomy bag? How long does it take to recover from the first surgery? The second surgery? Are blockages common? What is VSL #3? Any personal stories or advice would be greatly appreciated. Thank you for your consideration.

Hey Stephie,

You're probably going to get many varied answeres on this one, as everyone has different experiences to share. Im not sure if you're having Step 1 done laproscopically or not, but from responses Ive seen, it seems that it's less painful than the regular surgery. I had the traditional method done and was closed with staples. It is uncomfortable, but tolerated with pain meds.

The ostomy bag is definitely something that required getting accustomed to, and it was kind of a trial by fire for me. Even though I was taught how to do everything in the hospital, I never did anything on my own till I got home. I would difinitely recommend getting involved while you are at the hospital so the ET nurse can be there to show you what you're doing right/wrong. Once you get the hang of things its really not so bad (I found myself getting lazy really, because I was also catheterized so I never really had to get up to goto the bathroom while I was in the hospital. I could just sit there, eat & drink, and never have to get up!) I did find myself not wanting to leave the house with a bag, but my fiance kept me going and talked me into venturing out after a couple weeks. Dont let the fact that you have a bag hold you back! Nobody is going to know you have it!!

The first surgery is def the biggest hurdle, and the second will seem like a walk in the park by comparison. I was in the hospital ~6 days for each operation, took a week off after each op, and was able to work from home by the third week. and was physically back after a month. Depending on if you have any complications, of which I had several, you may be a little faster or slower in recovering. Everyone is different!

VSL #3 is a probiotic that many ppl are taking to help with the 'good' bacteria thats in their digestive tract. It can help keep pouchitis and cuffitis at bay, and many swear by it (and it tastes like lemon cake batter...hehe)

If I could offer two things to remember:
1)Just take things one day at a time
2) Chew, Chew, Chew your food well!!

Good luck and I hope to hear about your progress!

Bill

Stephanie,

I just wanted to add one thing to Bill's note. Butt burn its the worsted thing ever!!!! Clamoseptine(or some type of cooling cream) was my best friend as well as medicated wipes, be prepared for it you will be happy you did. Best of luck with you surgery.
Carolyn

Hi Stephie,

Welcome to the site. Sorry to hear of your struggle with getting back to health. You'll find great info here. If you want you can visit our blog, and you'll find detailed photos of both Mark and Carter's surgery. It will give you a better idea of the ostomy, etc..may help remove some of the fear you have right now. Both Mark and Carter are living well with their jpouches! Oh yeah, be sure to find Ashley's photos on the blog, she shows herself at 21 and with her stoma in full glory --

Megan

Hey Stephie,

I'm 33 and just had step 2 three weeks ago after 10 years of pancolitis (ending with low-grade dysplasia). I'm happy to answer questions, but I found I got a lot out of actually speaking to a few people who'd had surgery before I did it myself. If you'd like to talk, feel free to PM me!

Hey Stephie, I am sorry you have to get surgery to get better. I had my ileoanal j pouch surgeries in 2003/2004. I feel so healthy now it is unbeleiveable. One product to help with butt burn is "Nupercanal". CVS, Walgreens, Rite Aid sell it. It is the best thing on the market to take away the acute pain associated with this surgery you are about to go through. It has a numbing agent and is also is a great barrier for burning. It does not cause burning like so many products do. The ostomy bag is probably the worst experience of the whole procedure. The bag will fill up so quickly and will catch you off guard if you are in a public place. You don't have to even eat hardly anything for your stomach and small intestine to put out so much fluid that it will fill a bag in a matter of moments. Being prepared and aware will save you alot of embarrassing situations. You have to keep the bag attached to your stoma with glue. After the bag has been on a while your skin will get raw from the feces eating away at your skin. So you have to keep Neosporin on hand to help heal the raw place. Your stoma will pump out stuff uncontrolably and what I did was to fast so that I could actually sit without a bag attached to let the air get to the raw place and heal. I kept alot of rags around the stoma just in case it erupts. I had my bag for 8 weeks and I suffered alot. The first surgery is very painful and the worst part of it was not being able to eat or drink anything other that a cup of ice chips for 8 hours. I ended up going in the bathroom at the hospital and drinking water out of the sink because I felt so thirsty that I was going crazy. I didn't let the nurse know and luckily I didn't get sick from drinking water. Many people have their intestines and bowels shut down from anesthesia. IF you eat anything you will end up puking because the food gets stuck because the intestines will not let the food flow. Anyway they introduce you to fluids first and then you work your way up to food. I was amazed at how brave I was to the pain. After this surgery you will be so used to pain that it will not bother you much. You will feel like a hero for getting through this ordeal. I felt like a hero because I dont' think that anything hurts a s much as having your gut cut open. You will be fine because the doctors make sure you are not in much pain and the good lord will look out for you. Please keep us posted so we will be able to know that you are alright and that everything goes smoothly. God Bless You.

Stephie,
Your story sounds just like mine. I've decided to have surgery Aug 12. You have asked all the questions That I'm wanting answers to also.

Any advice from anyone about step 1 surgery will be appreciated.

Good luck with you surgery Stephie.

rj

My words of advice is to listen to your body and rest/sleep when you're tired, eat when you're hungry and let people around you pitch in as much as they want to! This is time to allow yourself to be babied! There is no rush to getting back to "normal"...whatever that is! Consider all of what you are going through as an adventure and part of that adventure is learning about your new body. Each day will get better....REALLY!

Hi. My daughter is 17 and had step 1 of the j-pouch surgery on July 3. She first got sick in September 2006. Like you, she had pretty much gone through all the usual drugs (asacol, rowasa, hydrocortisone enemas, 6-mp, remicade, and especially the dreaded prednisone). She had 3 big flares (no small flares ever) in the less than 2 years she was sick. She missed 9 weeks of 10th grade and 16 weeks total in 11th grade. Like you, she wanted her life back without having to worry about flaring and missing school and life.

We decided that right after school ended would be a good time for her surgery. The summer would give her almost 9 weeks to recover and adjust to her ostomy without having to miss school. She did great through step 1. She was in the hospital for 6 days. She had some pain but the PCA worked great. It wasn't a walk in the park but each day she got a little better. She had no complications. She had a full incision. We all thought it would hurt more than it did. Once she got her staples out, alot of the sensitive pain went away.

She is adjusting to the ostomy. She has no problem emptying several times a day. She doesn't like the feeling of the wafer on her body (she hates bandaids even). It took awhile to learn the best way to put on the wafer so it doesn't leak (we went back to the hospital to meet with the ostomy nurse). The first time we changed the wafer by ourselves it took well over an hour. It has gotten better. She still has a hard time taking the old wafer off but getting the new one on is going well.

She will be eligible for takedown in October. Originally we talked about her waiting until Christmas/New Years school break. This way she would miss only a few weeks of school in January and not miss so much school and extracurricular activities (which she has for the past 2 school years). Depending on her day and her mood, she talks about having the surgery in October as soon as she is allowed and getting rid of her ostomy. We will cross that bridge when we come to it. It will mostly be her decision.

We met with 2 different surgeons. We liked the first one alot and even scheduled a surgery date. It would have been a 3-step process. Then we decided to go for a second opinion and liked that surgeon too. He has more experience and performs a 2 step surgery. So we used him (the surgery date was one week later than the first scheduled surgery). With both surgeons, I asked to speak to someone who had gone through the surgery and preferably someone who had been around my daughter's age at that time. The first surgeon got me in touch with a mom whose son was 11 at surgery and was now 16. She was very helpful but his was an emergency surgery. The 2nd surgeon got me in touch with a 22 year old girl who had been diagnosed with UC at 16, surgery at 19, and on with her life since then. Those phone calls helped me alot.

My daughter is doing well so far. She still tires easily. She has started to visit with friends more. She may come home a little earlier but she gets out. She goes back to the surgeon at the end of the week and will probably return to work the following week. She probably could push things more but who cares, it's summer!

So far the decision for surgery has been good. She is thrilled to be off all medications. I think only once did she say she wondered if she made the right decision (I think it was right after the wafer leaked). We'll let you know how the next step goes.

Surgery is very scary. It is life changing and permanent. But she couldn't see living with UC forever, wondering when the next flare would come, how bad it would be, and what drugs might work. She couldn't stand the thought of being on prednisone again. We worried that this could be an issue for another 60+ years of her life. So we decided on surgery while she was in remission, young, under our insurance, no worries about supporting herself or a family.

Hope this helps. PM me if you ever need to talk. I am sure my daughter will also be more than happy to talk. Good luck.

I got UC rather late, at age 46, endured three years of unsuccessful medical drug treatments and had Jpouch surgery April 2007. The surgery took about 2 hours, really wiped me out, I slept for two days, barely aware of when nurses changed my ostomy appliance. I had another 4 days in hospital. I had a big 12-inch vertical scar, belly-button to crotch (looks like a Caesarian) but being 50 years old and married, it doesn't affect my vanity much.
The appliance was not an ideal placement, as the surgeon's primary stoma consideration was a reversal, not a lifetime appliance. So I endured numerous leakage issues with my appliance for the 9 months until my second ( aka 'takedown') surgery in Feb 2008. Most times every second day I was changing the appliance. Second surgery was much easier, about 20 minutes, a 4-inch horizontal scar, and only 4 days until I was out of hospital. There are still minor ongoing issues like butt-burn, but it it is easier to endure than the appliance, and the medication-treatment attempts prior to that.
I am happy that I can go out again without having to make bathroom stops every thirty minutes, and go swimming with my kids again.