Tips for Total Colectomy with Ileostomy?

Hello,

I am new here, but not new to digestive malfunctions. It's finally come time to say goodbye to my colon and at this moment I'm not too sad to see it go. I can no longer go to the bathroom on my own and my pelvic floor is all messed up from 16 years of colonic inertia.

So now I'm going to get the colon removed and getting a permanent ileostomy. I cannot be considered for reconnection because my pelvic floor is too far gone. I'll try biofeedback again after, but it's not looking good.

I'm here to meet people who have been through having surgery and live with an ileostomy. I've done a lot of research, but I find the best research comes from people who have lived it. Any tips and advice are welcomed, and very much appreciated!

I'm pretty open about everything and am looking forward to getting to know people. I already have felt alone in this battle and this only adds to it. Would be great to relate to people.

Thanks for your time!

Amber

Miss Amber,

Welcome to the site! You've come to the right place. There are several posts about this in the forums, but those of us who post often are happy to recap. You're taking a very brave step, and everyone here will be incredibly supportive for you. And I apologize in advance for the long post. So, here we go.

First off, you're very lucky that this is a planned surgery and not an emergency surgery. Several members here went through emergency surgery, so they weren't at all prepared to wake up to having a bag on their stomach.

I've had a permanent ileostomy for almost 22 years now due to Crohn's Disease. I was diagnosed at 14 and managed it with drugs up until I was 23. At that time, I had two bad constrictions in my large intestine, and the doctor said that perhaps it was time to consider the ileostomy. I, like you, did a lot of research before taking the leap, but the information wasn't as readily available as it is today thanks to the internet.

Now, everyone's experience is different. In my experience, the prep and hospital stay was the worst part about the entire episode. The prep, as I'm sure you know, to clean out your system, just leaves you feeling like you went through the ringer. Then, after surgery, I woke up with a drainage tube that went in my nostril down into my stomach and, of course, the bag with a plum-sized stoma. I wasn't allowed to eat anything but ice chips for a week, and every few hours, they would push something like Pepto Bismol down the tube and suck it back out. I also wasn't allowed to shower for a week as to not risk busting my stitches.

The second week, I was allowed to eat clear liquids and finally have a shower. IT WAS AMAZING!! I was released out of the hospital for all of 3 days when I got a fever and had to be admitted again. I had a tennis ball-sized pocket of infection in my abdomen that had to be drained and was in the hospital for an additional 2 weeks. Needless to say, it sucked.

After I was finally released from the hospital, I was off work for 2 months to build up my strength and get things back to slightly normal. At first, having the bag was weird. I took a change of clothes and extra bags everywhere with me. I even had a squirt bottle with me to rinse out the bag but later learned I really didn't need to do that. But I had an excellent ET nurse that showed me the ropes during my stay in the hospital, and she saw me almost every day.

I use a one-piece drainable pouch that I change every 3-4 days, but the 2-piece system seems to be more popular with a lot of members. Again, this works best for me. Once you have gone through the surgery, you should inquire about free samples from all of the companies that make bags such as Convatec, Hollister, etc., etc., and find out what works best for you.

You will have good days and bad. Hopefully more good than bad. You'll adjust to your new friend and its little quirks. The number one rule my surgeon and ET nurse told me to remember was to chew my food up very well. Having an ileostomy makes your system susceptible to obstructions. For me, it's like having rolling gas that is extremely uncomfortable and sometimes painful. You will learn which foods affect your system like peanuts or pineapple or any natural fibrous foods. But no more woofing down your food. You'll be thankful later.

At first, you might be paranoid about the bag showing through your clothes. But no one ever knew I had a bag unless I told them. And depending on what type of bag system works for you, you will eventually have a leak. It's not the end of the world, but in that moment, you'll think it is. People have accidents all the time.

I had 2 leaks the first year I had the bag because I left it on too long and was drinking a lot of beer. I woke up with a football-sized bag from gas that was leaking shit under the wafer to one side. I was mortified. But, I never let that happen again. The second time I had a leak was due to bag construction failure. It wasn't bad, but it was enough to get a little waste on my clothes. I wrote the company, and they were nice enough to send me a lot of free samples. I've had other mishaps with the bag, but it's something you get used to.

You will learn and adapt. You will find out what works best for you. I could go on and on, but I don't want to bore you to death. Just remember not to let the bag define you in the long run. The first few months are the toughest for adjustment. I think I was able to adjust faster and luckier than most people because I was pain-free, didn't have to run to the bathroom every time I turned around anymore, and I no longer had to take medication for my stomach problems.

I will be happy, as everyone else here will be, to answer any questions you may have as there are NO stupid or shameful questions, and you can ask anything you want. I hope this helps.

Bain

Hi Reddia01, welcome to MAO. This is a great site for many questions and answers. I have an ileostomy. I visited MAO by accident searching for answers and questions about living with an ostomy and life after surgery. It has been 4 plus years since gaining my stoma and so far, so good. I returned to my full-time job 7 weeks post-op. Some days are better than others but I am very grateful for the second chance. Feel free to post any and all questions that you may have about living with an ostomy... or as so many people say... living the new normal. Best wishes to you. Take care. Sincerely, LadyHope

Hi Red, I've had my ileo now for 32 years or so, and at first, it was a steep learning curve as there was no internet with all the info nowadays. I was sick with UC and very rundown, so my recovery was rough. I would say one of the most important things is to tell the surgeon you want a stoma that sticks out at least an inch, as that will drain into the pouch better and cause less skin irritation. Good luck and keep asking questions.

Hi, Amber,

I'm new here as well, and haven't posted much, but this is indeed a friendly and informative place. (And hi to all reading this and in particular, thanks, Bain, for the detailed info you offer!)

I had a total colectomy and end ileostomy last May. Before that, I had a colostomy for a year and a half as a result of emergency surgery (I nearly died from a perforated bowel and septicemia). So, I've had ostomies for a little while (couple years+), but actually am still figuring things out with the ileostomy.

After surgery, you will have a stoma, but be aware that over time, as things heal, it will likely shrink a little in size. So the size you start out with (cutting your wafer to match) will change over time.

An ileostomy puts out a lot of liquid, so you have to take care to not become dehydrated and become mindful of how much water you consume. Also, through experimentation, you will discover what foods will slow down the liquid output, making it more like soft stool. What you eat, and what effect it has on your ileostomy, is something you will have to figure out over a period of time. It helps to keep a food diary so you can track what you eat against what is happening with your pouch.

It's useful to keep Imodium on hand in case you need to control ileostomy output in a strategic manner. It's nothing to use as a routine stopgap, but if you expect to be stuck somewhere for a while with no easy access to a bathroom, it can be a helpful tool in the toolkit. I've used it to get through a longish road trip, and for some hours spent at the DMV when frequent bathrooming was going to be problematic. This may be more necessary earlier on, while you are still figuring out the cycles and output levels of your ostomy. Later, this will become more easily manageable.

Rely upon your wound care/ostomy nurse not only to teach you about basic ostomy care (how to get a good seal, etc), but also for things related to the ostomy, like diet tips, advice on exercise you can do or should avoid, and so. They are, in my experience, usually much more informed about these things than the surgeons or GI specialists are.

One thing I thought noteworthy about colectomy surgery was the long healing time on the abdominal incision. My first one (emergency surgery partial colectomy) took a little over 6 months before it was completely healed, although my system was malnourished at the time and that delays healing. For the ileostomy (most recent, planned, surgery), the healing was not much faster: at 4 months it was mostly closed except for a small raw area, but it took another month for that to skin over completely. So be prepared for the likelihood that you will have some long-term wound care tending to do on yourself, following a wound nurse's instructions for post-surgical aftercare. I had to rinse the area with wound cleanser, apply wound gel or collagen strips, pack with gauze strips, and secure the area with a bandage, daily, until everything was healed.

Good luck with your surgery! I hope all goes well for you. I know I was very reluctant to have a colectomy, but am glad I decided to. I have Crohn's colitis, and losing the colon has significantly improved my health.

-Teramis

Words of Encouragement from Ostomy Advocates I Hollister

My advice to you would be to make sure your health and albumin (protein) levels are normal....protein is essential for healing.......I ended up in septic shock due to malnutrition which was happening before surgery.....make sure you get adequate blood work results before surgery

Hi Amber!

I just found this site, so maybe by now you've had the surgery and this is all history! Like you, I struggled with colonic inertia and pelvic floor problems since childhood. Most doctors have been rather dismissive but I've also moved all over the country, not always having access to insurance or proper medical advice. A few years ago I was referred to a specialist paying more attention to upper GI issues. I've had a plethora of tests, procedures, medications, and trials. I also participated in physical therapy and biofeedback. Over the years things progressed (hmm, seems a bit of an oxymoron) to a point where I would not have a bowel movement for 10 days to 2 weeks... and at that, with lots of pain, strain, and frustration. I was told that I needed to exhaust every viable option/medication, or I'd have to have a bowel resection. I never had an ostomy even close on my radar! After some research, my GI doctor referred me to a surgeon. She explained that a "resection" would not be beneficial because of the pelvic floor issues and fixing the pelvic floor issues provides a very, very low success rate. She recommended a loop ileostomy to bypass the colon. Knowing what I know now, I wish I would have had more discussion about it to prefer removing the colon and an end ileostomy.

One thing I know that was talked about is feeling fortunate that it is a planned surgery rather than an emergency. I really appreciate that point. I know there are a lot of diseases that can create problems, both physically and lifestyle. I was overwhelmed with the thought of what was happening to the toxins (from not eliminating regularly) in my systems. I became somewhat obsessed with "sweating" them out, by exercise and sauna. Since having the surgery, I'm amazed to realize what should have been going through my system. Silly to realize too, here I am a Grandma and I never knew that "straining" to go to the bathroom wasn't totally normal!!

I thought I did TONS of research, thereby knowing exactly what to expect -- You know, that way I would be well ahead of the learning curve. WELL, little did I know!!! I was released from the hospital in 3 days but ended up being readmitted for two weeks with an ileus. The 2nd stay in the hospital was miserable, to say the very least. I had nurses that weren't real familiar or comfortable with ostomies, including one that would not allow me to have any pain medication. BUT, it was a fluke... the vast majority of nurses, advocates, and staff have been wonderful. I had a visiting home health nurse (be sure to choose an agency with certified ostomy nurses - that's one piece of advice I was SO happy to follow) who was beyond compassionate and reminded me they were here to coach me through this... no judgment, no ridicule.

I am a passionate advocate for mental health awareness but was totally amazed at the toll this surgery took on my body... physically, mentally, and emotionally. I was very fortunate that the ostomy nurses were very compassionate and understanding. They coached me through the process and gave me confidence. We have a perfectly natural "mourning" response to the changes in our body as well as the changes of routine and normalcy. Shortly after getting home, I had a massive leak... no really, it was a proverbial blowout!!! I came OFF the tracks!!! I was grossed out, angry, terrified, sad, and the whole nine yards. Finally, I got everything all cleaned up, changed, and came back to earth realizing how grateful I was to have such an accident at home. I had to realize that accidents do happen, in fact, they happened before surgery... I was simply equipped differently. I've had other instances, but now I am more apt to keep my cool!

Another piece of advice I was glad to get (and follow) was trying samples made available by all the providers. When I 1st came home I thought for sure I wanted a one-piece appliance. It was rather Greek trying to navigate all the verbiage until I actually experienced the differences. For a few weeks, I stuck by my one-piece conviction! Everyone has their own idea of what works, so above all... be flexible. SPEAKING of flexible - I thought I wanted the one piece because I heard they were more flexible and low profile. Well, as it turns out - for ME, the Coloplast 2 piece, deep convex wafer/flange offers everything I was looking for. My skin is being a little sensitive so I can change the wafer every 2nd or 3rd day but change the pouch more often because it makes me feel better. There are all kinds of things available for skin care, odor control, security, and intimacy. Yes, there is a learning curve and a new normal in our life... but it's worth it. Supply providers and insurance allowance can also play a big part. I'm fortunate to have good insurance and get all my supplies through Byram Health Care - their customer service is nothing short of amazing!

No one needs to feel alone in the process and we're so fortunate to have new technologies and services available to get through it.

I hope you're as delighted as I am to have this next chapter. I'm anxious to hear your story!

Thanks for taking the time to read mine :) Vicki

I just sent a (long, sorry) message but happened to think of one more thing...

If you haven't already been referred to do so, ask to have an Ostomy/wound Nurse MARK where you want the stoma ahead of time. You want to be careful to have it placed so your clothes, typical body movement, seatbelts and that sort of thing doesn't irritate the stoma.

During surgery, surgeons don't necessarily take all those kind of things into consideration and it DOES matter.

Mine is below my belt line but where I can see and care for it easily (about 2" SW of my belly button). Now, I have a loop so both sides are above my stomach surface UNTIL I bend, at which time the active side sinks below. That's why I have to use a deep convex appliance, and have some skin irritation issues.

Ron in Mich is absolutely right and I wish I would have known to have it considered. It's not that there aren't ways to get by the trouble spots, but it's nice to avoid if possible. I'm going to have to have mine revised later this year. I wish I would have known better because I have some problems with adhesions... and of course, the more they mess around in there, the more adhesions like to grow.

Know what I mean? Vicki