Stoma Bag Answers For The Nervous IBD Patient

Whether a loved one was recently given a stoma bag and you’d like to learn more about it or you yourself might need to go through surgery because of the damage done by Crohn’s disease or ulcerative colitis, you probably have a lot of questions about stoma bags.

We at FindMeCure are very cautious of fear-mongering and awhile back we had a blog post that addressed some of the fears and worries of newly diagnosed IBD patients in which we explained that even some severe cases of IBD can sometimes be managed with medication.

Our hope was to provide anxiety relief for everyone who took their diagnosis to mean a life sentence of misery, pain and a parade of one worst-case scenario after another. We did touch on surgery and how stoma bags can provide some long-awaited normalcy for people with severe symptoms or even save lives. Now we’d like to further elaborate on that, as we believe more information means less stress about the possible outcomes and being able to make better decisions about your health. 

What are stoma bags and who needs them?

Many cases of Crohn’s disease or ulcerative colitis can be treated just fine with medication and with new therapies emerging and evolving, like biologics, a lot of possible complications can be prevented altogether if treatment begins early enough and proves to be effective and safe enough for the patient. However, in some cases, an IBD might be diagnosed later-on when significant damage has already been done to the low digestive tract or it might progress too quickly for medication to put it under control.

When this happens there is an increased risk of perforation in the small or large intestine which can be life-threatening… or, worst case scenario, a perforation has already happened and surgery is unavoidable at this point.

If perforation hasn’t already occurred, depending on the risk, the patient’s overall health, age, and response to medication, as well as other factors to be taken into account, the primary doctor who administers treatment estimates the need for immediate surgery.

The surgery essentially removes the damaged part of the intestine and brings the healthy end on the surface of the abdomen where it can empty its content into a bag securely attached to the skin – this on-the-surface bowel end is called stoma, hence why the bag is called a stoma bag. Surgery can be either a permanent solution when a big section of the intestine has to be cut out or a temporary one – done to give the intestine ‘a rest’ before the two ends are reattached.   

Between 23 and 45% of people with ulcerative colitis and as many as 75% of people with Crohn’s disease eventually need to have surgery. However, surgery is not always a last resort life-saving kind of thing – some people choose to have surgery for a number of reasons that have to do with them not being able to manage their symptoms with medication.

These are the facts and statistics about ostomy but no amount of objective information can substitute personal accounts if you’re someone living with an IBD and you and your doctor are considering surgery. So if you’re interested in the experience of having surgery and living with a stoma bag you should check out this video by Thalia Skye and find more about stoma bags on her YouTube channel where she shares personal stories that can answer a lot of the questions you might have. Keep in mind that as Thalia herself says in the video – everyone has a different experience.

Will I go back to my life as usual?

We would love to be able to give you an answer or reassure you in some way but again, we can only provide information and point you to other people’s accounts.

In a piece for Cosmopolitan magazine Lisbeth Strutt shares her wisdom on living with a stoma bag – how she came to terms with her surgery, what the most disappointing part was and how she learned to navigate dating. Lisbeth was surprised to find that even though the surgery was supposed to fix all of her IBD-related problems, some of her previous limitations were far from gone.

It might seem unfair that even after having part of your lower digestive tract removed some foods can still remain off-limits. But even though a colostomy or ileostomy means you get to live a flare-up free life, it’s no guarantee you can eat whatever you want – some foods can still cause problems. Talk to your doctor about everything you want to try because you might be able to bend the rules to an extent but at the end of the day be ready to accept that some things are just not going to agree with your body.

As for your old hobbies, including sports or other physical activities you used to enjoy, you should be able to get back into your old routine as soon as you heal from the surgery. Getting over the fear of your bag spilling or accidentally injuring your stoma while practicing your preferred sport might be the harder part but you should be able to address all of your concerns with your Stoma Nurse or your doctor later-on.  

Your body image is the one thing we can’t tell you anything worthwhile about. As Lisbeth Strutt points out in her story, unless you have a stoma bag yourself you don’t know what it feels like. Instead, we recommend you reach out to other people who share your experience – whether to connect or just to hear another account of what it is living with a stoma bag. 

Like that of Brandee Appledorn who learned to accept her stoma bag by getting crafty. In an attempt to make herself feel ‘pretty and feminine’ again, she sewed a lacey cover for her stoma bag – something she later made a business out of.

So, if you wonder if you’ll ever feel yourself again or how you’ll ever come to terms with your altered appearance, Brandee and her creative approach to self-image can be a source of hope and inspiration. You can also check out the ‘stoma’ hashtag on Instagram to find people who proudly display their stoma bags and openly talk about self-image post-surgery. Nevertheless, we’d still advise you to seek counseling – nothing can replace the tools a mental health professional can give you to manage your emotions and internal monologue. 

Aren’t there better solutions?

It’s 2019 and surely, there must be other ways to fix a damaged digestive tract than to bring a part of it on the surface of the body. Well, sadly, not yet – ostomy is still the go-to mainstream solution for patients with severe IBD that can’t be managed otherwise, as well as for other cases where the lower digestive tract can’t be used anymore.

While artificial bowels sound like a better idea at first, nothing can replace the microflora of ‘the real thing’. Transplantation is technically an option for some people but it goes with liver transplantation and that complicates things immensely.

To have your digestion happen completely internally still sounds ideal though, so modern research is focused on something else that might turn out to be a viable solution in many other cases of damage to the digestive tract. According to Dr. David Hackam, pediatric surgeon-in-chief for the Johns Hopkins Children’s Center, with so many cases of short bowel syndrome in infants, artificial intestine sounds like the next logical development for the treatment of SBS. And of course, artificial intestine can be a blessing for IBD patients as well. But when we say artificial we don’t at all mean mechanical. As with many other degenerative conditions, stem cells appear to be the answer.  

Although mainstream use of stem cells for the replacement of damaged or insufficient bowel tissue is at least a few years away from us, clinical trials are researching better ways to treat severe IBD complications as we’re writing this article. If being among the first to try a new therapy sounds like something you’d be interested in, you can search for clinical trials right here and now.

And if you’d like this article to be the first of many in a wider discussion about living with a stoma bag, let us know in the comments.