Hello All, 

I have been suffering since May 20th when I had my reconstruction surgery, which had its complications since my scar tissue stuck to my small intestine. This surgery took over 8 hours, it was scary for my mom and partner who literally were told 4-5, and 6 if something goes wrong. So, you can imagine the look on my face when I check into a 5:30am surgery and get to my hospital room at 9pm. I felt horrible and the worst thing was the staff trying to get me to walk the next day, which did not happen, because I was dying of pain.

My hospital stay was 7 days, took longer than usual to get my stomach started, and one day out of no where I started projectile vomiting. I had to get the tube down my nose into my stomach for drainage. I was familiar to this, as I had to do it twice before after my first surgery not a pleasant experience. That first surgery was another story, but I recovered and do not want to rehash. 

Long story short, I came home and all was okay, still on pain meds and trying to start eating regularly. Then I started getting a bad pain and burning sensation from my stoma. This stoma was very different from my first and not only did my skin get irritated to the point of drawing blood, but the leaks I would have were constant and mostly at night when I slept making a mess everywhere. I have been living a complete hell since then, went back to the hospital for five days they put a picc line inside of me to feed me and stop my bowls. It was a scary time, but it some what did the trick of healing me although it’s was not 100 percent. 

I would email the doctor daily, go see the stoma nurses three times a week and leave crying from the pain of the cleaning and treating they offered. I am in no way healed though better now trying to taper down from Vicodin, and eating broths and ensure. Unfortunately, there are still a few burning episodes when I eat and discharge, on the left and right sides of my stoma skin sight. The discharge literally comes out of my skin, so that bottom side has no time to heal with all the moisture down there. This has been hell, I was unable to return to work, just sit on my couch praying for the bag not to leak, not active and can’t even work remotely as the pain is to much to try and focus on anything else. Has anyone also had these types complications, cannot wait to have the stoma gone July 1st, it has caused so much pain and suffering for me mentally and physically, please help with suggestions.

Thank you!

Jpoachinseattle

Original Post

I had the exact same problem and I posted it in the exact same manner. Being too skinny post op my bag wouldn't stick well and needed to be changed every 1-2 days. Plus all those foods I ate burnt badly as they came out . I couldnt sleep well always worrying about a leak. And skin piercing pain at the stoma site . My surgeon wanted to do the takedown in 8 weeks and I wanted to give it 12-15 weeks to heal but due to so much pain and irritation I went back 9 weeks later and got done with takedown. It took a month for my pouch to settle enough to get going but since then it has been absolutely amazing.

I am sorry I couldn't help as I never found anything that would stick for long. Though at a point I got very high quality fully covered bag which stuck for almost 5 days each those 10 days were the best for me with stoma. If you can get such a variety it'll help your skin to grow back and the irritation will reduce .

Try eating less fruit . Only go for potatoes, breads, butter , eggs , chicken and bananas ,they I found were the easiest to cone out without irritation.

Apparently the different brands of bag all use different seals to accommodate different skin types, there's also wafer which are supposed to help with the seal.

 

I'm fairly normal in most things but I couldn't find a stoma bag that would stick to my skin reliably, even using the wafers, fortunately the  temp ileo was temp (3 months only). 

I once got through 8 bags in a day, although when I did finally get one to stick, of it lasted 24 hours it would last a few days.. I was very reluctant to change them though.  My stoma would not stop producing, even using the marshmallow trick, so took a lot of patience and quick hands.  Apparently permanent stoma are much easier, but your not alone struggling with a temp..  try the wafers, maybe some sample bags, although by the time they arrive your op will be due.

 

Oh and please consider donate your left over stoma kit to 3rd world charity... I can't imagine how bad it would be living in intense heat in a wooden shack, with limited water and a used plastic bag for a stoma bag

I was thinking of a company like stomaaid who ship to Syria, but apparently they are not accepting donations at the moment. 

I used Jacobs well, but not sure if they are just uk.

https://droppoint.org/stomaaid had other suggested links)

Also see....

http://www.shieldhealthcare.co...y-supplies/#comments

Please note they accept all the associated supplies (talc, cleanser, sanitising spray etc).  Jacobs well did actually send me a thank you letter too, confirming receipt and explaining how useful the supplies will be.

 

 

JPouch in Seattle,

Takedown wasn’t too bad for me although I did have a few issues.

The area where the stoma is was not stitched and was allowed to heal by granulation. This due to the infection risk. This takes a long time to fully heal, and I was on activity restrictions for a while.

I also had dietary restrictions. I started with soft foods and gradually assumed a full diet. I was told to eat salty/high sodium foods because you will have electrolyte imbalance while the J Pouch adjusts to being a surrogate colon. Initially it’s not as good as the colon in regulating electrolytes, so you will need to be very mindful of proper hydration. Dehydration is a major possible complication.

Butt burn was a problem for many months after takedown. This is due to increased alkalinity of stool. The J Pouch takes some time to adjust the pH of the stool. Eventually it does but again this is another function of the colon your body must adapt to and it takes time.

After surgery there is a risk of blockages/obstructions. I did have a couple and I feel they were caused by over-ambitious eating coupled with postsurgical swelling and adhesions. Eventually these cleared after I started vomiting. In other words, the act of vomiting cleared the obstruction. My advice to you is just really take it slow with your diet even if you feel great, eat small quantities of food, and add one new food at a time so that you can isolate problem foods. Problem foods for me were raw carrots, spinach, mushrooms. These were just hard to digest and I could only have small quantities of them. Now I can eat anything and any quantity. 

Good luck!

I had to have a diverting ostomy after having a jpouch for a few years. It was a loop ostomy as the plan was to reattach to the jpouch in time.

It was very unlike my first ostomy which was problem free really. This time it was constantly, constantly, constantly burning my skin. Eventually it was discovered that there had been a surgical error. With a loop there are two stomas - one opening is in the middle for stool and the other is at skin level for mucous. Mine had been switched so in fact the stool was coming out at skin level. I decided to share this when I read your comment "The discharge literally comes out of my skin". It took a long time to be diagnosed because the mucous stoma was sticking out so perfectly in the middle but it wasn't until the doctor witnessed it in action that you could see the problem.

I feel so much for you. It's all so difficult. I am thinking of you and wishing you well through this .

Is your stoma retracting behind the bag by any chance? Because if that's what is causing the leaks I may be able to help you.

My stoma was too short to go all the way into the bag. So when it retracted, the stool leaked behind the bag. You can imagine what all that acid does to the adhesive on the bag and your skin! Ouch!

I was able to solve the problem somewhat, but still had too much output, so constantly dehydrated and in the hospital for iv fluids. They tested my pouch just after 2 months, thankfully it was completely healed and I was able to have the takedown done.

It was definitely worth it to have the test done to see if it was healed. I hated having to live in the hospital.

Haven't used this site in a long time. If your problem is the stoma is too short, you can try to message me and I'll see if I can help.

-Roni*

Hello Roni, thank you for the reply. My issue is that the new stoma discharges from inside my skin. So it is like a small bowl. It’s hard to keep a bag on and irritates my skin, so badly that I have to constantly be treating it in order for it to heal. I have to say that it is much better than a few weeks back where there was much more blood and much more pain. It has slowed down, but I am currently working on controlling output and also trying to stay out of dehydration mode. Easier said than done though. 

I have tried several bags and some work for a while then don’t. I had eight bag changes on Sunday which was frustrating. I have had some luck with bags sticking. I have my radiology scan in a few hours. I hope to hear good news. My doctor gave me six weeks of healing time, so I am praying that I am good to go for takedown on Monday.

I thankfully only needed to go back to the hospital once during this past recovery time. The pain was just to much to handle. I have been using lidocaine, adhesive wipes, that create a barrier and have been keeping the area clean. It’s a mission sometimes especially late at night, when I am half asleep. The most sleep I have gotten in the last month and a half is four hours. Wish I could sleep more, but I’m having a hard time. 

jpouchinseattle

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