hello everyone, this is my first post and I am glad I found it. I had my third surgery, my takedown surgery in October of 16 at Mt. Sinai hospital in NYC. I had my entire large intestine removed. 

I have had nothing but problems , terrible butt burn still, I use the bathroom at least 6-12 times a day and I am on opium for diarrhea. I try and hold it but it’s pretty painful and it’s hard to hold it. 

I Recently  had a colonoscopy to check it all out and hey found some ulcerations at the staple line where they put me back together. I am going back down to get a pouchoscopy done ina week and I’m praying I don’t need to go back in for surgery again. At this point I wish I had my colostomy bag, I had much better quality of life with the bag. 

I just turned thirty and I feel like my life is stuck in a rut, we’re trying to plan a wedding and I constAntly use the Bathroom, it’s tough to go places if your worried you have to go to bathroom. it’s affecting my relationship in every way. 

Original Post

Breathe.  Have faith that you will be able to get the ulcers gone and under control.  Stressing out will only exacerbate the situation and in turn make the ulcers worse. 

Don't get me wrong, I totally understand why you are feeling this way right now. But try to stay positive.  At least until you can get some more answers. Hang in there!!

What treatment are you on for these ulcers? Opium tincture is fine for the symptom of diarrhea, but does not treat the ulcers. Those are signs of pouchitis/cuffitis, which require specific treatment.

I know this is frustrating when you were expecting an end to this stuff. 

Jan

Thank you all. I am staying positive and going into the procedure positive. The stress got to me and I just have to keep it under control. 

I Am not on any treatments As of yet. 

I’m almost 50 and my pouch 12 years old. I too have ulcers at the connection of the pouch. Following your next scope talk to your Doctor about possible medications to help heal these ulcers. I’m on Imuran, budesonide, and Humira and they are helping me; however, your GI may have other ideas that will work better for you. Keep fighting for answers. I’m amazed at how many different options there are and how differently they work on each of us. 

Hope this helps 🙂

Hey. I also I ulcers at the connection site. I totally understand how you feel like you're in a rut. Though I do not have diarrhea, my condition has caused me to be unable to eat and have constant bleeding. My doctor was unsure what do to with the treatment because his theory was that I had ischemia and had poor blood flow to the area. Last week, I found out that it wasn't the case and am now being treated for Crohn's.

I know the frustration of finding out you're still finding problems when you already thought this was going to be a fix. For me, I knew that I was probably going to have to fight the auto-immune part of my disease somewhere down the line. I was lucky to have had 12 good years before my problems became severe. I would want to have those ulcers treated and aggressively because they could be the root of your problems. I kind of wish my doc would have been more aggressive with my treatment because I suffered two long years, but then again the diagnosis was very hard to pinpoint in my case.

Please don't give up hope. There will be ruts in your life. This is probably rut #2 in my life, but I knew that if I persisted in trying to find answers that a door will open, and it finally did for me last week. I know that I'm oversimplifying by saying that you're only a "year" in, but it's still early and there are still many roads out there to consider. I know that you will find the right path for yourself in due time. Even through your suffering, there are still good things in your life, even if you can't see them at the present. I guess for me, I like to think half full, because I'm still able to have the time of my life in Japan!

-Rina

I had my take down in November of 2016. I had pouchitis in April of 2016 and the doctor put me on Ciprofloxacin it help but didn't really clear it up. I had problems until it got really bad in October and was in the hospital for a week. They put me on an iv antibiotics after they did a scope for that week and sent me home with clavucillin and pantaloc for 2 weeks.  I've been great since then. Go to the washroom about 6 times a day now which is nice considering I was going 12 to 15 times a day. Not bad after 1 year.

My surgeon told me it would be 2 or 3 years to get to my normal. Everyone is different.

I hope your doctor can find something that will work well for you. Congratulations on your upcoming wedding!

Thank you chopkins , I was on cipro and all of those meds as well, it helped a little but definitely did not clear it up. I’m hoping I can take some antibiotics for it and don’t have to do surgery again cause I can not afford that again. 

I would be ecstatic with 6 BMs a day. Lol. 

The butt burn is the worst things over everything. One of the most painful things I have experienced. And not being able to sleep a full night either sucks really bad. 

Thank you again for your reply!! Means the world to me. 

Hello all, so I spent ALL day in nyc doing a pouchoscopy, mri and a visit to my surgeon . The doctor who performed my pouchoscopy is well known and very smart. He has seen a ton of cAses ranging from very bad to near perfection. He was pleased  with what he saw and did notice minor pouchitis, but overall pretty good j pouch. 

The mri showed minor pouchitis as well. 

Then i saw my surgeon and he had all the results and he was very pleased with he saw. He did put me on cipro twice a day and  it should help. He also recommended lowering my opium med and re starting lomotil. Start with 1/ 3x day and up if necessary. 

I am very pleased but also disappointed in the results. I am happy there is nothing wrong but I also wanted them to find the problem, fix it and get better lol. But I know I need to limit expectations. I am very grateful to have such great hospitals and doctors within a couplr hours drive from home.  

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