Extreme Pouchitis

I am so sorry for what you are going through. Yes, some (but not all) of us had the most unbearable suffering at the hands of this disease, it is impossible to put it in words.

Did all of this start soon after takedown or later? Why did you have to self diagnose? Could your GI or surgeon not diagnose it? You might need to see doctors who are more experience with IBD and in particular j-pouches, it makes a day and night difference.

Due to pandemic, most Drs in major IBD research clinics now accept tele-conference visits. You might be able to get an appointment from places like Mt Sinai IBD center in NYC, Cleveland Clinic, where they see hundreds of j-pouch patients.

Thank you for replying. I was just dealing with the colorectal surgeon. I should have been with a new GI doctor who was working in lockstep with the surgeon.

My old GI doctor was a total zero. I saw her August 1st 2018, and she said that my colonoscopy and endoscopy in January looked great come back in a year. Two weeks later I started having a bad flare-up that continued to get worse and worse. She had me on different steroids, antibiotics, and suppositories, and then Entyvio, and that didn't work. I was in ungodly pain, I was losing ten pounds a week. I had the Entyvio infusion and that didn't work. 

She told me to go to the hospital to get some high-level steroids for a day or two to treat the flare up. I was there for almost 7 weeks, and for the first 3 weeks they tried every medical intervention and nothing worked. My GI doctor would call me at night saying you need to have surgery to remove your colon, and she never visited me once. I did a consultation with a top-notch GI doctor, I'm in Houston Texas. After 3 weeks I had another colonoscopy and the inflammation had spread so rapidly that they couldn't complete the colonoscopy. 

I knew I had no choice but to have the surgery to remove my colon, and that happened November 1st 2018. After the surgery the pain kept getting worse and worse. I was on Dilaudid, toradol, oxycontin, gabapentin, Vicodin and nothing could stop the pain. By November 8th I became extremely sick and then the worst pain that is not even fathomable.

The nurses threatened me that the only way for the pain to go away was for them to stick an NG-tube down my nose to drain my stomach. I asked for sedation and for a doctor and they did neither. Their first attempt was a failure and I told them that you do not have my consent to continue I want a doctor paged immediately. That was ignored and they attempted a second time which was unsuccessful and and resulted in me projectile vomiting stool all over the room It was like something out of a horror movie.

After two failed attempts they were frustrated and left me alone. I was extremely sick and I knew something bad was happening. I kept paging them and they ignored me, I screamed "somebody help me, please help me, I need help." Nobody came.

At 6 am I finally mustered the strength to tap my older brothers number on my cell phone and told him please come immediately, I'm being abused. By the time he showed up I was in septic shock, my BP was 70/30, 104 fever, I acquired an ecoli infection in my blood stream, pulmonary embolisms in both lungs, and blood clots in my arms. I was close to death and Rushed to ICU. I was in the ICU for two weeks. I did not think I would ever make it out of the hospital. I was finally able to discharge at the end of November.

My entire world had blown up. I had to use a walker upon discharging, I couldn't walk up steps, I had hospital induced diabetes, I had home health nurse, physical therapist, and I had to go surgeon shopping, as I had no choice in the hospital and a general surgeon removed my colon. I interviewed three or four surgeons and found a colorectal surgeon that I trusted and believed in. I saw my GI doctor in January 2019 and she had no empathy or compassion for what I went through. I made the mistake of not getting a new GI doctor at that point.

I had to get strong and healthy enough to have the second surgery and so that was my focus. In April 2019 I had ten more hours of surgery to remove my rectum, adhesions and scar tissue, and create the J-Pouch. Then June 2019 the final take down surgery, and removal of a hernia. After discharging and going home the hell began and I was primarily dealing with the surgeons nurse practitioner and he kept saying this is normal.

I am a strong person and I tend to suffer in silence. After three months of terror, I found this board and saw people describing my symptoms and they had pouchitis and so I knew then that's what I had. I had a full bottle of Cipro and started taking on my own and the symptoms kept reducing and then I told my surgeon and then got a referral for a new GI and she started managing things in September 2019. Things have continued down this path. Things are way worse after the J-Pouch. 14 years of UC I had a handful of flares up. My quality of life is terrible. I'm now on a mission to find out what's going on and why am I experiencing such extreme symptoms. 

Your story is horrible.  You had a blockage, and they could not put an NG tube in, and let you almost die. Never go to that hospital again.

You are suffering, and your surgical care team say that this is normal, you should run away. You are done with that surgeon. You have seen the results that he gave you.

If the problems with the pouch started right away after takedown, as you wrote, it might be a mechanical problem, and in that case you will need a pouch redo/repair surgery. Why don't you Contact Dr Remzi at NYU? He is having virtual visits. He can tell you whether you need a pouch redo, or a treatment plan with a GI. NYU accepts most insurance plans.

I learned that Dr Remzi does 7 j-pouch surgeries a week, half of which are repairs/redos of badly made pouches. This means that there are many many people out there with badly made pouches. He has patients coming from all around the world, badly made pouches from all around the world.

Just have a single appointment to hear what he thinks is your problem. If you need a repair/redo, then he is the best surgeon to do it.

https://nyulangone.org/doctors...LUSn18saAvMpEALw_wcB

Dang I thought I suffer with chronic pouchitis but what you went through is so much worse

I have no advice because your situation is the most severe I've seen. I know for me, my auto immune disease redirected itself to my joints and my pouch. I'm on azathioprine again because my auto immune disease did not get removed with the colon. It just found other targets in my body

Also I'm taking probiotics 4 times a day but it's never as good as cipro. I actually had formed stool on cipro and I'm never able to achieve that without. 

For some of us - me - diet plays a HUGE - role in recovery and beyond. Especially if you eat an inflammatory diet.

Andrina - we all have autoimmune - and no surgery ever takes that away. We can always get autoimmune symptoms - brain fog is the most common - and we are all prone to activating other autoimmune diseases. 

OP- maybe diet? If you eat tons of sugar or white processed food - some pouches rebel. Many times when a ouch matures you can go back to your favorite foods. 

I would definitely go see Remzi if you can. He’s magic. 

good luck - let us know what happens. 

Many of us with pouchitis respond to different antibiotics.  For me it was Leavquin and Flagyl together. Cipro did not sit well with me.  I hope you get better soon.  Maybe try as many antibiotics as you can before you rule those out.  It could be a pouch issue and not pouchitis though.  Good luck.

@Taichitwin posted:

I had my third and final surgery, June of 2019, where they connected the J-Pouch.

For 12 straight weeks I was going to the bathroom 25 plus times a day, severe pain, and the feeling of shattered glass and razor blades causing the most brutal internal burning. I had to lay still and would have to run back and forth to the bathroom, I was handcuffed to the toilet 24 hours a day.

After scouring through these boards, I diagnosed myself with pouchitis and started Cipro. 24 hours later it was a night and day difference and my symptoms decreased greatly.

I have continued to get worse. I have been on Cipro 3 x a day for one year straight, and have taken four courses of Xiafaxin in the past couple of months. I started Stelara at the end of January and the loading dose reduced the symptoms to tolerable. The loading dose wore off after four weeks.

After it wore off I am in constant brutal pain, feels like a 12 inch long ice pick has been shoved completely into my small intestine, about five inches below the left rib cage. I have constant cramps, severe bloating, internal burning, constant pressure on the tailbone, significant increase in stools and more.

My second Stelara dose was the end of February and towards the end of March the severe symptoms come back, and I basically cant function. The beginning of April my GI had me take a dose of Stelara, and a second dose two weeks later. This combination works well for about four weeks and then the terrible flare-up symptoms come back. I then repeat the same thing, two Stelara doses two weeks apart. This coming Wednesday I am having a pouchoscopy.

I'm sorry for writing a book. Has anyone experienced anything similar, and or heard of anyone who has? My story is crazy of what happened to me. My heart goes out to all of you. We know and understand suffering on a level that most can't even fathom. With that we have become so resilient, courageous, strong, and vulnerable. Thank you for your help and support. 🤗🤗

I am incredibly sorry for your story! I almost in tears! Do you think you might want to go back to an ileostomy permanently???