Patients Crohn's disease
Topic of the discussion
Posted on 1/19/19 2:56 AM
What is an ostomy?
Ostomy surgery of the bowel refers to a surgical diversion from a part of the bowel (small and large intestine), such as the ileum (ileostomy) or colon (colostomy), to the abdominal wall. An ostomy, temporarily or permanently, brings stool and gas to pass through a stoma, a surgically created opening, to be collected in a pouch. It is during ostomy surgery of the bowel where a surgeon creates a stoma by bringing the part of the bowel through the opening in the abdomen and attaching it to the skin to create an opening outside the body. As time passes, the stoma will become narrower and it may be necessary to obtain a smaller pouch.
What diseases can lead to an ostomy?
Digestive tract cancer, invasive cancer affecting neighboring organs, chronic inflammatory bowel disease, and congenital malformation are the main causes of the neccessity for an intestinal stoma, especially if the rectum, colon or intestines are removed.
How to choose stoma medical equipment?
If the choice of equipment is made between the patient and health professionals according to morphology, skin and lifestyle, each patient can change their medical equipment themselves with a little training.
It can be a one-piece device, which is very flexible, discreet and easy to install because of the pre-cut sizes available. Wearing time is generally reduced from 24 to 12 hours.
Another two-piece device (a holder with skin protector and pouch) is recommended for fragile skin because the holder remains in place for 2 to 3 days; of course, the pouch is changed as often as necessary or emptied in the case of liquid or pasty stools.
What do Carenity members think about the stoma?
"Life has been good since then. I can go out without worrying about finding toilets, go to the pool, the ocean, and play sports."
"My illness caused a depression. The stoma makes it possible to feel better physically but it is hard to accept psychologically."
"My husband still has trouble looking at himself naked in front of a mirror, but the stoma has changed his life for the better!"
"It took me a little while to get used to cutting my equipment, but it's just a matter of cleaning the stoma; it's ultimately very easy to manage."
"The devices are more and more efficient, we always find the one that suits us. Feel free to ask to try several of them when selecting yours."
And what is your experience with the stoma? Do you have any questions or concerns about it?
Let's discuss together all the practical and psychological aspects of the intestinal stoma!
Beginning of the discussion - 1/19/19Bowel (Digestive) Ostomy: causes, equipment and psychological impact https://www.carenity.us/forum/crohns-disease/living-with-crohns-disease/bowel-digestive-ostomy-causes-equipment-and-psychological-impact-698
Posted on 1/19/19 6:19 PM
Thank you for sharing! Thankful that I have yet had to have this procedures, but I know of some that have. To me, it seems like it would be such a burden and affect your life physically, socially, and emotionally... however, if it comes to the point where it is neccessary, then it must be a great benefit!
Posted on 2/13/19 3:16 AM
I had my colon removed 10 yrs. Ago at 26 yrs. Old, and had to have an Illeostomy. It was very hard physically and psychologically, but as time went bye it got easier. It especially got easier when I stopped hiding from everyone, and decided to get help and talk to somebody. I'm doing a lot with my ostomy but I do still have a lot of pain and deoression I deal with everyday, but I always put a smile on my face and tell myself that I am blessed because I could have it a lot worse!
Posted on 11/30/19 8:57 PM
I need your help in finding out where I can order my supplies. Ostomy bags, and all that goes with attaching, cleaning and caring for my ostomy bag. I am running out of the supplies given me by the rehab facility, I live in a small town about 60 miles from the hospitals and doctors. My primary has no prior patients with this condition and is at a loss, the specialist have been too busy, too far to help, My insurance will cover the cost, I just need to know how and where do I order it. I just learned some important stuff reading this article, there are more than just the one style that I am currently wearing, some that don't have to be worn 24 hrs.? different shaped bags, all this is news to me. I can really use your help, and input now. Sometimes I feel so alone and isolated from the care I need, because or its rarity, but only until I make contact, with the right people, like this group has been very helpful, and I've only been a member for about a week, with so many areas it is a godsend. thank you in advance for reading this and caring enough to offer me your wisdom. Any information about who to contact regarding my re-supplying of my equipment will be appreciated greatly. Thanks Stephen.
Posted on 12/2/19 10:19 PM
Its monday 12 /2/ 19 Still no idea where to get my supplies. I'm going to have to go the ER I guess to change out my last bag. I feel so isolated, alone like no one cares again..just when things were starting to get back to normal.
Posted on 1/6/20 2:19 PM
@wizzard Hi I know this prob too late, but I and other people I know tend to order this stuff online. Some get their stuff on amazon, but you have to know exactly what you want. I use a company called Total Home care supplies. You can google their address. If you need some help you can call them too, they're in California. But you should ask your doctor to write down everything you need so ordering is simple. I hope this helps. Good luck.
Posted on 1/8/20 6:52 AM
Posted on 3/10/20 5:37 PM
I’m having my surgical consult next week to discuss my ileostomy. I’m so nervous because getting this procedure and having a colostomy bag for the rest of my life is difficult to fully accept. I knew this day would come because my Crohn’s has been active for over 7 years without remission but I’m still not prepared for it. I’ve tried every drug you can think of for Crohn’s and unfortunately nothing has proved helpful. I’m currently taking Entyvio infusions just to keep the diseased portion of my colon from getting worse. I’m 35 years old and I have two children and a wonderful husband but I still worry that having this procedure will change my life entirely. What if my husband gets grossed out looking at my stoma and doesn’t want to have sex anymore? What if my children become worried because their mommy has severe health issues? I’m so worried about everyone else being able to handle it that I can’t even bring myself to think about the struggles this will cause me. I want to improve my quality of life because right now I can barely function due to severe pain, constipation and fatigue. I’m trying to focus on the positives, such as being able to have a social life again, working and attending my children’s soccer games. If anyone has any advice on learning to cope with having an ileostomy please don’t be shy! Thanks for listening to my current struggles!