Living with Chrones disease...how do you do it?
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Hello Sam, I have had crohn's disease since the age of 12 and was given an ileostomy to save my life at the age of 17. Is your husband having his entire colon removed? if so, that's called a total colectomy and he'd be given an ileostomy. If they are taking only a part of his colon out, then it would be called a colectomy.
I can still do whatever I want with my ostomy. Noone knows you have one unless you tell them. You can have kids with the bag. Basically, it's a piece of plastic tupperware (on the wafer) that attaches to a shake n bake bag as I jokingly call it. They come in all different shapes and sizes. The smaller closed end pouches are used for those intimate moments. (Convatec can give you free samples).
Convatec is one of the companies that makes ostomy appliances. The newer ones are even low profile. Your husband can call them for a free month's supply at 1-800-422-8811 M-F (EST) 8:30 am - 4:30 pm (hrs. may have changed). When new products come out, you can request samples to try. I run an ostomy support group & have dealt w/Convatec for 21 yrs. They have awesome customer support. I've cld to speak w/an ET nurse when I had problems. You can even call yourself to ask for a brochure explaining what an ostomy is, how to deal with surgery, etc.
I learned about ostomies via the Crohn's & Colitis Foundation of America educational meetings. They had a panel discussion with surgeons & actual ppl who had ostomy surgeries. CCFA also has a support group where i even met crohnies like myself & we swapped info on the best places to purchase the appliances, which GI is the best, etc.
The Crohns & Colitis Foundation of America (CCFA) has a website where you can learn more about IBD, the medical terms that go with it, the latest treatments, surgery, diet, exercise, coping skills, and you can find a local support group to meet others who have IBD. Family & friends are encouraged to attend as well to educate themselves.
They have a toll free number manned by professionals M-F 9 am - 5 pm (EST) where you can call & ask questions.
They also have a live online chat where you can speak to a rep. from CCFA.
I am still the same person as I was before my surgery, except that my "plumbing" has been rearranged. Medication failed after 2 yrs. plus I couldn't eat due to severe pain in my stomach &severe fistulas and abcesses in my large colon so surgery was necessary for me so I could get my life back and return to school.
I provided a link to Convatec so you can see what the appliances look like as well as a link to an ostomy support group newsletter that I get. feel free to email me if you have any more questions. hope this helps.
PS: I've also included the site to the united ostomy association of america. you can call them to see if there is a chapter near you where you can request a visitor via the phone or hospital. it's www.uoaa.org.
Here is a site which may help answer some of your questions.
http://www.medicinenet.com/colostomy_a_p...
My friend (female) has been living with this disease since she was a kid. Go to my 360 and click on my friend julie. You can email her if you would like.
I dont have experience with this, but i care with this kind of things. First ask the doctor as much as you can, everything that you need to know. Second, is the diet that make things like this ( chronic disease) so restructure your diet again then.
yes, he will be fine. hopefully they can leave enough intenstines in there so that a bag will not be needed. but if he needs a bag, it's better to have that and be alive. it will not impact is reproduction. i believe the bag can be attached/unattached. i do not know where the bag is exactly placed on the body. i do not know how sex is done, but i am certain that people find ways to do. afterwards, he'll have to follow a good diet to get proper nutrients, when they cut lots of intestines out usually you don't absorb nutrients as well. be glad that they found the obstruction as that could have killed him. it's very serious. he probably feels miserable. Hugs to you both. Better days ahead!
Read 'Digestive Wellness' by Elizabeth Lipski. It is a goldmine of info and advice on this condition.
My uncle had Chrone's disease, and that was when it was not fully understood. He barely survived, but now functions properly and has 3 children. Though he does have scars crisscrossing his whole belly, which is not that attractive.
His daughter now has the same thing, but at this day Chrones is very treatable, and there is not a question of her dying at all. Though it is a pity.
I do not know if had a bag attached, I doubt it, but I don't see how it would affect your husband in any restrictive way. After all, they are going to rip out a lot of his intestines so there should be plenty of space.
Hey,
I am sorry about your husband, but at least you still have him! A colostomy bag is a huge adjustment on not only your husband, but on you as well. Your both going to go through a array of emotions, including those on your sexuality, and for your husband how he feels about himself and his body. This is normal.
The colostomy bag is placed generally to the side (usually the Left, but depending on how much bowel is removed of course) of the abdomen. The bag will require daily care, and education on both of your behalves.
However it is not as bad as it sounds. Having a colostomy will not stop your ability to have further children, remember of course your husband may not feel that "sexy" for a little while.
Colostomy bags are not detectable under clothes, and generally make little noise. They are easy to care for, and empty.
I am a nurse, and used to work in a gastro ward, so have worked with people who have had colostomy bag, and I was also present during a surgery when one was needed for a patient who had most of his bowel removed. This patient made a full recovery from the operation, and was functionally normally post operatively, and he was 85!!
Good luck! and if you want to talk, you can email me, am on a night shift, and can answer you relatively promptly. ;-)
one of my very good friends has this disease. I've seen her when she was in constant pain and when she had is under control. i noticed that when she was less stressed, got enough sleep, exercised and ate well balanced meals she was at her best. she always has back pain and usually has stomach pains but when she really focused on relaxing it would either go away or minimize. I'm not sure of the exact medication that she is on but i do know that it is very strong stuff. she is on stuff that is used for cancer patients, arthritis, and many other kinds of meds. they are not specifically for her disease but they do seem to help it. i remember she was on prednisone and she said that was really helpful even though she gained lots of water weight.
you should do as much research online and through doctors as you can. there is no cure for chrones but there are some things you can do to help control it. a lot of it may be trial and error but i believe its worth it.
Get in touch with the Crohns and Colitis society. You need to talk to someone in depth about your concerns. You should also be able to see a councillor at the hospital about this.
There are many of us on this site that could probably answer your questions but your best bet would be to get in touch with someone that you can sit down and talk to directly.
The two of you would probably benefit from seeing a nutritionst that can guide you on a proper diet that will help him from the flare ups.
i have crohns too.. it can be scary and life altering.. but it can be managable. and yes with a colostomy bag you can still function normally... i dont have one thank goodness but i know many that do, its not such a big deal once you learn about it.. he is lucky to have not had major problems for 5 yrs.. did u change diets? email if u like... i have a lot of prsonal experiance and can let u know what has worked for me.
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