Tag: j-pouch

Posted on

Ostomy and J-pouch moms

 

 

Although I am not someone who had a stoma and then had children, my story is the other way around, but the reason I joined this lovely group was because I had IBD whilst being pregnant. I just thought it might help someone on there who was considering getting pregnant before surgery.

Ostomy and j-pouch moms is a fantastic group for anyone considering stoma or j-pouch surgery and having children. There is a lot of support on there with others who have experienced this, so are used to all the questions.

Tara started the group in Canada and here is her story….

I’m from Toronto, ON, Canada. I was initially diagnosed with UC at the age of 17. I gave my IBD the best fight I could, through prescribed medicine, natural medicine and diet. I eventually decided my best option for a life outside of the hospital and chronic illness was surgery to create an Ostomy. At the time of my decision, I was diagnosed with crohns and colitis. The pathology of my removed colon showed a definitive crohns diagnosis. Months later, I decided to make it permanent and had the Barbie butt surgery.

Life has been good with an Ostomy. For years I decided it was my personal business that I had an Ostomy. Only some friends and family knew about it. I worked, traveled, swam, danced and dated and married. I thought since I was doing so well, maybe I could help others that weren’t, so I went to an Ostomy Toronto meet up. It was at that first meeting that I met some amazing ostomates that became good friends. The more meeting and events I went to, I made more friends that had been through what I had been through. I never knew I needed them in my life. I also met a lot of amazing colonless peeps online. I decided to “come out of the bathroom”, and I made a public post about having an Ostomy. I started volunteering for Ostomy Toronto, I wrote regularly for the newsletter, spoke to nurses and became a proud advocate.

Years before my husband and I started trying to conceive, I was worried if it was even possible to become pregnant. I had a friend do a google search for me. She found an article that was short and basically said it was possible. Through Ostomy Canada Society, I also made friends with other Ostomy mothers and had them share their stories with me. I also spoke with a GI and some stoma nurses, who all confirmed it was possible. When my husband and I were ready to start a family, through a fertility doctor, we found out that I had scar tissue around my Fallopian tubes. Our doctor said our best chance of getting pregnant was IVF. Thankfully, the first try took. Our daughter is now 4.

When I was trying to get pregnant and when I became pregnant, there was no specific support group for women with ostomies. I asked around in various groups on Facebook. So many questions were left unanswered. At 8 weeks pregnant, I decided to start Ostomy and Jpouch Moms. I added all the women I had met that far, who were moms, ostomates and jpouchers.

HOW UTTERLY CUTE IS SHE?

It was so great to have these ladies at my fingertips. I also never thought it would grow as much as it did. I have also added 4 admins to help with adding members, deleting spam posts or overly negative(even bullying comments) and to help with posts that get members interaction. While some hurtful comments aren’t always caught or deleted, we do our best to keep it a positive place. It’s not a group where bully’s post rampantly. With all the negativity on the internet it’s just not tolerated in the group.

The group is close to 2,000 members. While it’s a large number, I can’t help but think, that there are way more women who need to know our group is here to support them. That it is possible to become pregnant with an Ostomy or Jpouch and it has happened for a lot of women who’s doctors have told them it isn’t possible. I started a page called Ostomy and Jpouch Moms Worldwide in hopes that members or even non members would write their inspiring stories, spread more awareness and who knows, maybe some from the medical field will find the page, read features and change how they look at our fertility. I’m always happy when someone wants to be a feature. I also recently started an Instagram account for further awareness.

While I have help from admins, our time is stretched between being Moms, work and sometimes our health. I’m so grateful to those who are willing to help in any way. If any advocates are reading this. Please share with your followers and feel free to contact me directly about spreading more awareness at tara.parkal@gmail.com or send me a message on Facebook.

Please click on the links below to get through to the pages.

OSTOMY AND JPOUCH MOMS

OSTOMY AND J-POUCH MOMS WORLDWIDE

 

Posted on

J-Pouch ( Also called IPAA- internal pouch-anal anastomosis)

This sounds very grand, and that is because it really is an amazing innovation for many people who needed to have stoma surgery but also may be able to have a reversal. It was first performed here in the UK in the 1970’s.

I unfortunately am not one of those people who can have a reversal. This is because my rectum and anus were severely damaged by the colitis and needed to be removed,( so much so that I couldn’t have it removed when I had the original surgery as it wouldn’t have healed due to my poor nutritional state at the time) it wasn’t strong enough and healthy enough to be used again. As it happens the stitches, that were done to close the rectum off, burst causing rectal stump blowout and then sepsis, again due to me being very ill prior to surgery.

The procedure for reversal  is usually done around six months after an ileostomy give or take. Usually the whole colon and rectum have been removed and about 12 inches of small bowel is used to form a pouch very much like the old rectum , which is attached to the anus. While the pouch is healing the patient still has the stoma but the stoma is normally a loop stoma. ( Excuse the following dodgy sketches, but you get the idea). The loop usually has two holes instead of one because they cut the ileostomy at the top so when it bends the two tube openings are outside of the body.

LOOP ILEOSTOMY

 

 

 

 

END ILEOSTOMY 

 

 

As you can see from the diagram a loop ileostomy can be put back together again easily and tucked back inside.  An end ileostomy is totally cut and put through the skin.

After so many weeks a further operation is performed called the takedown, this involves the takedown of the ileostomy so that the internal pouch can start to work.

The name J-pouch is because the pouch looks like a J. 

The bit at the bottom is the anus.

 

 

 

For many people this procedure has been a godsend. Young adults who thought they may need a stoma forever can lead a near normal life. There are some issues that can occur, pouchitis is inflammation of the internal pouch which can make you very poorly, and can sometimes lead to more problems . Antibiotics are normally given and they can work well for most. But there are people who continue to have issues and are then offered surgery to get the stoma back. As you can imagine this is vey upsetting when you thought you had survived a very difficult surgery in order to get some normality back, and after all that stress of more major surgery you are back to where you were.

If all goes well then life can be good, with no stoma worries ,but it can still be a while before things are fully settled. You find you may need the toilet many times at first, even in the night, and wonder if you have done the right thing having the reversal in the first place. But after a while it settles down and the pouch starts to work like a rectum again.

By continuing to use the site, you agree to the use of cookies. more information

The cookie settings on this website are set to "allow cookies" to give you the best browsing experience possible. If you continue to use this website without changing your cookie settings or you click "Accept" below then you are consenting to this.

Close