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Living with UC and Pouchitis

I was diagnosed with ulcerative colitis in 2007, but my colon was whipped out before I even had time to really process what that even meant. Because I'd been so unwell, the recovery was a long one. One year after that, I had surgery to create my J-pouch. A J-pouch is basically a replacement rectum, built from loops of small intestine and connected to the anus.

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  The Patient Experience: My j-pouch changed my life

It’s considered the most common surgical procedure for ulcerative colitis patients when medication fails to keep IBD under control. The ileal pouch anal-anastomosis (IPAA) or j-pouch, is created after a surgeon removes your colon and rectum and uses the end of your small intestine to form an internal pouch, which looks like the shape of J.

  Twists and Turns of J-Pouch Recovery

The recovery process for a j-pouch is just that. It’s a process. It takes time and patience and is different for everyone. For some, it can be relatively easy. For others, it can be a winding path with twists and turns just like the colon that was removed for it.

 Is diet important with a J pouch?

The short answer is YES but first things first, what is a J pouch? Put simply, a J pouch is a J shaped internal pouch made from the end of the small intestine. This acts as a kind of holding chamber for poo in the absence of the large intestine to do the job! The medical name for it is an ileal pouch anal-anastomosis (IPAA).

Articles of Interest

What the heck is an Ileoanal J-Pouch?

The procedure was developed in the late 1970s to help people who had been diagnosed with ulcerative colitis or FAP. The procedure involves removing the entire colon. The colon is replaced with an internal pouch that your surgeon will create using your own small intestine. The pouch is then attached to your anus (the opening where your stool comes out). Many people prefer this procedure to other alternatives because after all the surgeries you are able to go to the bathroom the “normal way.”

Complications Related to J-Pouch Surgery

Restorative proctocolectomy with ileal pouch–anal anastomosis is the gold-standard surgical procedure for familial adenomatous polyposis, refractory ulcerative colitis, and colitis- associated dysplasia requiring colectomy. Numerous adverse sequelae are associated with J-pouch surgery, including anastomotic leak, stricture, and fistula formation, among other complications.

Embracing Change: Finding Courage With a J-Pouch

Although having a bag was great and gave me so much freedom, I decided to have two more surgeries to create an internal pouch called a J-pouch. A J-pouch is formed using the small bowel and connected to the rectum. I was doing quite poorly after the first step surgery due to narrowing in my small bowel. The narrowing would cause my bowels to block and the pain was horrendous. I was admitted to hospital 6 times for bowel blockages and dehydration. It was tough, but I knew it was temporary. My step two, ileostomy takedown took place on 5th March 2020 and my recovery has been much better than I thought. I've had my moments and days where I've felt frustrated and cried but it's still early days and my body needs time to adjust to its new way of working.

Have eight years with a j-pouch really turned me into… an optimist?!?!

Gratitude is a common theme in my pouchiversary posts, and if you’ve read any of them before this one, I’m sorry to be so repetitive. But it’s important, dagnabbit. I still feel overwhelmingly grateful for my j-pouch. For the doctors who made it happen. For the nurses who helped me recover in hospital and at home. For the UC patients who came before me and underwent the operations when they were still unproven.

It's complicated: living with pouchitis and cuffitis

“While my experience has not been good,” she says, “I would still stress and reassure people that pouchitis or cuffitis are not common complications and most people only ever have one or two episodes in their lifetime.”

J-Pouch Failure – Tina’s Story

I have stated many times that the j-pouch has a 94-96% success rate. But you don’t hear many success stories on the internet because most of them are out there living their lives and not boasting about it on the internet. Because you don’t hear a majority of the success stories out there, I feel compelled to keep sharing my own story of life with a j-pouch.

J-Pouch or Colostomy: Seeking Insights on My Dilemma

I am deeply depressed because living with the J-pouch is going to be a forever incontinent problem, which terribly depresses me every time it happens. Or go back to the bag facing the same issues I had before. I think this decision is the toughest decision I can make at this point in my life. I am 68 years old. Is there anyone out there that can give me insights on my dilemma?

J-Pouch Surgery

A proctocolectomy with ileal pouch-anal anastomosis, or j-pouch surgery, is the most common surgical procedure recommended for ulcerative colitis patients when medications fail to control their symptoms. This surgery involves constructing an ileal pouch anal-anastomosis (IPAA) or j-pouch. The surgeon will remove your colon and rectum and use the end of your small intestine, known as the ileum, to form an internal pouch, which is commonly shaped like a J.

J-Pouch Surgery: What to Eat & the Nutritional Implications

The procedure can be performed in 1-3 stages, where 2 stages are most common. In the first surgery, the colon and rectum are removed, creating a j-shaped pouch that connects the ileum to the top of your anal canal (located below the rectum).

My J Pouch Story

I was diagnosed with Ulcerative Colitis (UC) in 2009 which resulted in me having my colon removed and having a temporary ileostomy (for about 18 months) I will not go into too much detail about this as I am here to speak about my J-pouch. I had three surgeries in total, first one to remove my colon, second one to create the J-pouch and the third one to connect everything together.

The Failed J Pouch

The development and refinement of proctectomy with ileal pouch-anal anastomosis (IPAA) since its introduction in the 1970s has made it the optimal procedure of choice in patients with chronic ulcerative colitis and patients with familial adenomatous polyposis. However, it is a procedure that can be associated with significant morbidity. Pouch failure due to infection, mechanical, or functional disability represents a challenge to both surgeon and patient.

The TMI Guide to My Life with A J-Pouch: 7 Years Later!

What the heck is a J-pouch? If you’re here and you’re wondering what a J-pouch is check out this detailed post I wrote explaining what J-pouches are. Also check out this awesome guide to J-pouches.

Top 5 Questions About My Life with a J-Pouch

I get a lot of questions about my life with a J-pouch and the three associated (and successful) surgeries. Every day I am grateful to be alive. Without surgery, I would certainly not be here today. So that alone makes it easy for me to say that 100 times out of 100, I would absolutely do it again. But it’s more than that.

What I Wish I Knew About J-Pouch/Ostomy Takedown Surgery

Hello everyone, it’s Hannah! In early December of 2020, I had my ostomy reversal or takedown surgery to create my J-Pouch. I knew from talking with my doctor some of what to expect: waking up with lots of tubes, feeling tired and sore. But it was through reading articles about other people’s J-pouch experiences (those who just had surgery and those who have lived with their pouch for some time) that I was able to prepare myself for what to anticipate physically after surgery. Looking back now, I realize I’ve learned a lot, that there are things I wish I had known, and that I want to share what I’ve learned so others can know what to expect.

What Is J-Pouch Surgery? And Could It Help Your UC?

If your UC doesn’t respond to medication or other treatments and you don’t want an external ostomy, J-pouch surgery may be right for you.

Resources

10 things I've learnt living with my J-Pouch

I was diagnosed with Ulcerative colitis (pancolitis) in 1999 at the age of 9. I had a total colectomy and ileostomy in 2001 and Ileal Pouch Anal Anastomosis (IPAA) (aka J pouch) construction and ileostomy reversal in 2009. You can read more about my IBD journey here.

17 Lessons from J-Pouchers

We realize that everyone has a different experience when it comes to J-pouch or S-pouch surgery, BUT there are some things we wish doctors would have told us beforehand.

5 Tips for Living with a J-Pouch

Last week, I reached a milestone in my ulcerative colitis treatment. I can officially say that I've been living with a relatively happy and cooperative J-pouch for 2 years. Getting here hasn't been easy. And honestly, living with a J-pouch is far from ideal... But thankfully, I've managed to have a very successful time with it.

9 Things to Know Before J-Pouch Surgery for Ulcerative Colitis

Living with ulcerative colitis can make your life unpredictable, since you never know when or if diarrhea, fatigue, or abdominal pain will take over your day. You may even be considering having J-pouch surgery, an operation that allows you to eliminate stool after having your colon and large intestine removed. People with ulcerative colitis may choose to have this done if medications haven’t eased their symptoms to a manageable point.

Stoma Warrior

My blog sharing my experiences and journey through Crohns, Colitis, Ileostomy Stoma and Jpouch surgeries, JPouch excision, total Proctectomy (aka Barbie Butt) and beyond!