Tag Archives: colostomy

Journey to getting an ostomy and back

I know there are many out there for whom an ostomy bag is only a temporary stop of the journey. That’s why I’m so glad Lindsey is willing to share her story about living with an ostomy bag and now having her colon reconnected.

Lindsey’s story

I will never forget the day that my doctor looked at me and said, “Lindsey, I think it is time that you consider getting a colostomy bag”. At the time, I had been diagnosed with Crohn’s Disease for 13 years. Sure I had flares, it comes with the territory. But never had I flared this badly. After trying a last-ditch effort with more steroids and other medications, I was sent to a consultation appointment with an Ostomy nurse. That day was a game changer for me. I saw my first stoma and it began to set in with my “practice bag” that part of my insides would soon be on the outside of me. My mental health was spiraling downward with my physical health.

I was literally devastated at the scheduling of surgery and I had no idea how to process what was going to happen to me. I was not involved with any support groups and didn’t know a soul with any sort of diversion bag. Feeling very much alone, coming to the decision to get my ostomy bag was one of the biggest battles with myself to date. I had full support from my husband, family and friends but I just couldn’t shake the thought, “Who would ever elect to poop out of their belly?” I felt that no matter what my decision was – bag or no bag – I would have always wondered what would have been if I had chosen the other choice.

Lindsey Russell colostomy jpouch crohn's story OstoMYstory stoma ostomy crohn's disease ulcerative colitis ileostomy colostomy urostomy inflammatory bowel disease ibd stolen colon

But for me, I eventually got the other choice. On February 9th of this year, I had my ostomy bag reversed. What was the one thing that I was most excited about you ask? Well, farting of course! I actually asked my doctor after surgery when I will be able to trust a fart again. He laughed and reassured me that in time, it will come. In a way, I underestimated the reversal surgery. My rectum was very malnourished from not using it for almost two years. Some of the symptoms that I experienced were rectal spasms, urgency, multiple trips to the bathroom, anxiety over leaving the house and pain at my incision sites.

Lindsey Russell colostomy jpouch crohn's story OstoMYstory stoma ostomy crohn's disease ulcerative colitis ileostomy colostomy urostomy inflammatory bowel disease ibd stolen colonBy the time I had my reversal surgery, I had three major abdominal surgeries under my belt with not a single complication. This time was different. One of my incisions became infected and it resulted in a trip to the trusty ER. They had to re-open parts of the incision site which resulted in two open wounds. Both open wounds needed to be packed with gauze twice a day. It by far was not my favorite thing in the world, but slow and steady wins the race. Although we were seeing progress with the infection and healing of the surgical sites, I continued to lose a lot of blood and my persistent symptoms didn’t let up.

Confused as to whether to get my GI back in the game… or stick with my surgeon’s advice, that all of these symptoms were normal… I went with my gut. All it took was one phone call to my favorite nurse and an honest conversation about what I was experiencing. My doctor at the University of Michigan got me a record-breaking colonoscopy date within a week. Sadly, he found ulcers and a narrowing in the intestine, and also discovered that the last 25 cm of my rectum/colon are severely inflamed with active Crohn’s. I began to go all the way back through the grieving process. This reversal surgery was supposed to be a good thing and we were all convinced that I was healthy enough to go through with this. No one could have ever predicted what cards were dealt next. Now my Crohn’s is back full force and I am trying to navigate my way through this winding journey. I don’t know what the future holds for me or my bowels but I do know that if one day I end up with my colostomy bag back, it won’t be nearly as hard as the first time. In fact, I might actually welcome that trusty bag!

Lindsey Russell colostomy jpouch crohn's story OstoMYstory stoma ostomy crohn's disease ulcerative colitis ileostomy colostomy urostomy inflammatory bowel disease ibd stolen colonLooking back on my nearly two years with my ostomy, I wouldn’t have changed it. Although it was a literally a life changer, I was able to meet some of the best people who are currently in my life. Having my ostomy opened doors and allowed me to grow as a person in ways that I would have never dreamed of. My desire to help others, especially those with IBD is so strong that I can feel it in my bones. My husband and I started a Facebook page to help patients and their caregivers who deal with IBD. We believe that education is power and that this silent disease deserves a voice!

Always know that no matter what hand life deals you, you will come out the other end stronger and wiser for have lived through it. I look forward to seeing where life takes me next!

You can find Lindsey on her new Facebook support page: A Semi Colon Life

#OstoMYstory

Double trouble

profileI am so excited to have the fabulous Thaila Skye as a guest poster for OstoMYstory! Thaila is an amazing advocate for ostomates. She had surgery in 2010 and later started blogging and has a very active YouTube channel with tons videos on living with an ostomy, reviews of products, as well as talking about health and fitness. Her OstoMonday series is great! (Links to everything below.) So thank you, Thaila, for sharing your story on The Stolen Colon!

Thaila’s story

Having a stoma can be difficult at times. But having two stomas? Yep, that’s definitely twice as complicated.

I remember when the stoma nurse visited me before my operation, where they prepare you for what’s going to come. “You might wake up with one bag, you might wake up with two, we just don’t know yet.” Great, that’s exactly what a 24-year-old woman wants to hear. She marked X on my right-hand side, and then another X on the left-hand side. Y’know, just in case.

I woke up in the recovery section of the colorectal surgery ward. It wasn’t just one bag. It wasn’t even just two bags. When I looked down under the sheet for the first time, it was like I was hooked up to the Matrix.

thaila ostomy bagsI had:

  • an ileostomy bag
  • a colostomy bag, just for the mucous in my remaining colon (known as a mucous fistula – how very glamorous!)
  • a huge dressing covering the 16cm laparotomy wound
  • a drain for where my colon had perforated (the reason for my surgery in the first place)
  • an indwelling catheter
  • a morphine drip (temporarily the love of my life)
  • an oxygen tube down my throat

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Ileostomy, colostomy, urostomy: What’s the difference?

If you talk to 3 different people with an ostomy, they may all actually be living with something very different from the others. As we discussed in our first Ostomy 101 lesson, an ostomy is essentially a non-natural opening in your body by which a person releases waste, but there is more than one type. The type of ostomy is dependent on what part of the digestive tract is used to make the stoma.

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Ileostomy: This type of ostomy is made with a part of the small intestine (or ileum). It may be what-is-an-ileostomy-imageused when the entire colon has been removed (like mine) or it may be temporary following a resection or to allow the colon to heal before being reconnected. It is commonly used in patients with ulcerative colitis, Crohn’s disease, Familial Polyposis (FAP) and colon cancer. It is most often located at the lower right side of the stomach.

The poop is usually in liquid form and can be water or more of the consistency of applesauce. The individual does not have any control on the activity of the ostomy and must wear an ostomy bag, which needs to be emptied approximately 5-8 times a day.

what-is-a-colostomy-imageColostomy: This ostomy is formed with a part of the large intestine. It is used when only part of the colon is removed or when a section of the colon needs time to rest and heal and can also be either permanent or temporary. It is often used for patients who have diverticulitis, colon cancer, bowel obstruction, paralysis, injury or birth defects. There are 2 common types of colostomy that affects its placement: A transverse colostomy is on the upper part of the stomach and a descending/sigmoid colostomy on the lower left of the stomach.

The poop for the transverse colostomy is similar to the ileostomy, but somewhat more formed. The individual does not have control over the activity and must also wear an ostomy bag. For the descending colostomy, the poop is much closer to what is considered normal. The individual sometimes has control over the ostomy activity and may not need to wear an ostomy bag. In this scenario, they would wear a cap of some sort. They also have the option of “irrigating” their ostomy which is essentially an enema through the stoma.

what-is-an-urostomy-imageUrostomy: This type of ostomy is used for the urinary tract. It is actually a little more complicated than the other types of ostomies as it requires the removal of the bladder, as well as a section of the small intestine. The intestine is sewn back together, but the piece that was removed is then attached to the ureters that extend from the kidneys and is also used the create a stoma. It is only done as a permanent solution. A urostomy is most often needed due to bladder cancer, but also inflammation of the bladder or birth defects. It is usually placed on the right side of the stomach.

The pee empties into an attached urostomy bag. The individual has no control over its release. It needs to be emptied approximately every 2-4 hours.

what-is-a-j-pouch-imageJ-pouch: While not a type of ostomy, I feel the need to write a quick summary of a j-pouch. It is made after the removal of the colon when the small intestine can be reattached to the rectum and anus, forming an ileoanal reservoir. This surgery is usually done in 2 stages and involves the creation of a temporary ileostomy. It is often used in patients with ulcerative colitis (but not Crohn’s disease) and FAP.

In this scenario, the individual can still go to the bathroom in the normal fashion, however, the poop is less formed than what is considered normal.

So now you know: When someone is talking about ostomies, they will most often use “colostomy” as a blanket term, but that is likely to be an inaccurate description. Don’t be afraid to ask somebody you know about theirs. We appreciate not being lumped into a particular group, especially when each type affects individuals differently.

This is a very brief overview of the types of ostomies and there is a TON more that goes into each of these, but it’s a lot more detail than for my purposes here. UOAA has some guides with lots of good information. Images were stolen from here, here, here and here, respectively. 

What is an ostomy?

The big question: What is an ostomy? Here’s your first lesson.

what is an ostomy stephanie hughes out of the bag colostomy ileostomy crohn's disease ulcerative colitis inflammatory bowel disease ibd ostomy blog stolen colon top 10 reasons to have an ostomy ileostomy colostomy urostomy 101

An ostomy is basically a non-natural opening in your body by which a person releases waste. Through this hole, the surgeon will pull the end of either your small/large intestine or ureter, thus creating a stoma. These terms are sometimes used interchangeably, however, most often when someone is speaking about their ostomy, they are referring to the entire thing, but a stoma refers to the actual piece of organ that is outside of the body.

An external pouching system is used to collect the waste. In more simple terms, an adhesive bag covers the stoma and catches the poop or pee as it exits the body. The bags can then be changed out or emptied into a toilet.

There are 3 main types of ostomies: ileostomy (stoma is made from small intestine), colostomy (made from large intestine) and urostomy (made from the ureter and part of the small intestine). I’ll go into each of these in a little more detail later this week.

It doesn’t seem like particularly accurate calculations are kept, but it is believed that approximately 1 million people in the U.S. alone have an ostomy of some sort, with another 300,000 having surgery every year.

Reasons for needing an ostomy:

  • Inflammatory bowel disease: Crohn’s disease & ulcerative colitis
  • Colon cancer
  • Diverticulitis
  • Bladder cancer
  • Familial adenomatous polyposis (FAP)
  • Bowel obstruction
  • Trauma, accident, birth defect, etc.

An ostomy can be temporary or permanent. A temporary ostomy may be used if the intestinal tract needs time to heal and can be reconnected in the future or it can also be used as the first step in a two-part surgery to form an internal pouch. A permanent ostomy is sometimes needed when the entire colon has been removed, or at the very least the rectum, or when a reconnection surgery is not possible.

I do not pretend to have extensive medical knowledge, so some of this information was found online: UOAA, ASCRS, NIH