Recovery and Self-Care After Stoma Surgery?

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jeanie73

My name's Jean and in February, I was admitted to the hospital with severe pain and have been diagnosed with diverticulitis, colitis, and a hole in my bowel. I am having an operation in June to have a sigmoid colectomy and will have a stoma bag for life. I'm wondering how long it takes to get your strength back and also do you need much care or can you manage okay on your own.

beyondpar

Jean, you will be fine, but do allow yourself the time to heal physically, and then emotionally, to the change in your body's plumbing. Once you figure out how to get the appliance perfect, your life will come roaring back again. In the meantime, you have thousands of people on this site willing to help at a moment's notice. Michael

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ron in mich

Hi Jeanie, I've had an ileostomy for 30 years. And it's the best thing that happened to me after being sick and taking meds like prednisone. The healing time is different for everybody and depends on the type of surgery, whether it's done laparoscopically or totally opened up. Once I figured out the right pouching system that I could trust not to leak, I was able to live again and work 40 hours a week. But it takes time to adjust and figure out what works for you. Good luck.

jeanie73

Thank you, Michael and Ron. I'm still in shock that this is happening, I suppose, and I find it hard to talk to people around me about what is in front of me. I am happy that I found this site as everyone seems so supportive.

beyondpar
Also take the time to browse the forums, by topic first and then inside each forum will be sometimes 1000's of responses to the issue in the forum by people who are living it in total and have a first hand knoweldge of what to expect....I found many answers to my leakage issues , my time to heal issues regarding my bottom removal, and what to expect in the many areas lying in front of me.......good luck. Michael
 
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Ruby Slippers

You have time to prepare yourself both physically and mentally. Many of us didn't get that chance.

Mine was an emergency and I was not prepared to wake up with a bag of poop hanging from my abdomen. Three days before Christmas 2013. I have to wonder if knowing about it in advance would be better or not.

I'm adjusting. I know I'm lucky. I'm alive. And my colostomy is (hopefully) temporary. I find out in 6 months.

You will adapt. You will have to. And it's not as bad as I anticipated it would be, now that I'm used to it.

Good luck!

WindyCity

Hi, I was wondering if you could first answer a question as to why you are having a permanent colostomy for diverticulosis? Why is a sigmoidectomy not an option (removing your sigmoid and attaching your descending to your rectum)? Perhaps there's something wrong with your rectum? I'd like to help, I had the same disease, different outcome, but very knowledgeable in this disease.

Zywie

I was wondering the same thing as WindyCity. But I am not at all knowledgeable about any of this and am dead set against anyone having this surgery unless they are told by 10 different doctors it's necessary. The only thing I saw that might warrant it is the hole in the colon - but I would think that depended on where it is located? Instead of preparing for the surgery, I suggest you get more opinions from here (as you are trying to do) and from other doctors. Just my two cents. You don't really want to hear my $100 version.

Zywie

I don't know why, but your questions keep haunting me. So I did a very little bit of looking things up on the internet. The few places I have read that describe a sigmoid colectomy, it says they take out the bad part and connect the two ends and give you a temporary colostomy to give the connected parts time to heal. ???????? As others have said, everybody is different. It took me about 5 months that the pain in my belly/abdomen was tolerable enough that I could sit and walk fairly close to normal. I vomited for almost two weeks after the surgery until they found a pill that worked to stop it. I only had a nurse for 1 month to show me how to take care of everything. I do take care of it myself. My butt is still not healed and that is a real pain. On the other hand, I have heard people say they had no problems, healed within a few months and were out skydiving again or whatever they liked to do. Again, though, I suggest you question the permanent part for sure. My mom lived with diverticulitis until the age of 76 and never had this bag. My sister was just diagnosed with both diverticulitis and colitis and not one time have I heard they are doing any surgery on her, let alone a permanent bag.

Zywie

P.S. I had my surgery done by a handy-dandy robot. So, if I had to say a good thing about it, it's that I don't have the scars some do. I understand there are 3 ways to do this surgery: manually, which means the surgeon does a lot of cutting and that one is the one that messes up your belly; laparoscopic (you'll have to look this up on the net), but it's with a little cable-like thing and is less apt to leave huge scarring; and the robot - which I only have about 4 little teeny scars on my belly. For some reason, my abdomen area is more bulgy than it used to be though. The worst scar I have is from the tube they had coming out of my abdomen that collected all the weird fluids.

Cecille

I hope your surgeon is doing the right thing. I had what you had, but had an ileo-rectal anastomosis in 1982. This cured my Crohn's and ulcerative colitis and I did not have to have a stoma until 2009, which was due to my intestines rupturing due to a terrible accident. Even now, I am waiting to have this reversed.

LilacFaerie

Hi Jean.

I had my first colostomy (December 2010) based in my sigmoid colon before the surgeon decided to give me a permanent colostomy based higher up in my descending colon and remove everything below it and give me a full Barbie butt operation. When I came home after 10 days in the hospital, life was more challenging than I thought it would be. It wasn't the appliance or the bags that I had trouble with, it was having the energy to do things. Stirring a pan of mashed potatoes had me hysterical because I didn't have the energy and it hurt.

My first weekend home was a nightmare of inabilities. I couldn't even get up to go to the bathroom! It was a shocker. But I soon regained enough strength to do simple things, and over time I got stronger and stronger.

The second operation (May-June 2011 - less than 6 months after my first op, and I'd had 2 other operations in the interim) I was in the hospital for 18 days, and when I came home, I didn't have any of the problems I'd had the first time around. While I was in the hospital, I asked for home help, domestic support, and Meals on Wheels to come in and help out on my release. This turned out to be a godsend. Knowing how hard it had been 6 months earlier, I was prepared and asked for help. I had nurses in daily to change my dressings. I had scored an infection in the hospital, and they had to re-operate to drain the gunk. Lovely. But they insisted on the wound healing from the center outwards. So I had this massive hole just below my belly button that needed to be packed and dressed every day. That was worse and more painful than the coccygectomy, the colostomy, and the Barbie butt operations!!

I guess the best thing I can suggest from my experiences is to think about what you would find helpful on release from the hospital and ask for them. If you think that cooking is going to be a struggle, find out about meal delivery services. If you think cleaning is going to be an issue, organize a cleaner for a month or so to help you out. I'm not allowed to vacuum or push a broom due to issues around my stoma, so years on from the operation, I am still using a cleaner to help with those things I must not do.

It is well worth thinking about the things you may have issues with and preparing for them. One of my biggest issues was using the bathroom. I ended up getting railings put around my toilet and bath, and I had to have a second toilet put in because the run from my bedroom downstairs to the bathroom at the far end of the upstairs area was too far, and I had accidents along the way. This was solved in the short term by getting a commode chair, and then I had the second toilet installed. If you have these kinds of potential issues, write them down and make sure that before you leave the hospital, you have services on standby to help you with them.

Hope that helps.

Funnyguy

Hi Jean, I hope all has gone well with your operation. I was diagnosed in 2010 with UC and had surgery this May, so in a similar position. Finding others to talk, share stories and experiences, and general support is the key. It is very important to keep on good terms with your medical team and surgeon.

The NHS has been very good with me and I was told I could choose any hospital in the country, as now people are not limited to just where they live, although it is better to stay with a team that knows your history.

There are hiccups here and there but the key is to keep talking with others if there is something you want to know, genuine people will understand and respect your new situation, and ignore those who haven't a clue what you have been through.

I must get around to uploading a photo, but I have only just joined this site myself, so I am still a bit new and unsure myself.

It is very important not to dwell on bad thoughts, that really is a waste of precious time.

How are you getting on after surgery? Take care, Funnyguy.

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