Seeking Support and Advice: 1 Week Post Ileostomy Surgery

I would like to know if anyone can talk with me and give me some hope.  On the 12th of July 2017 I became severely ill after eating supper.  My husband took me to the ER and they did CT scans which showed abnormal lower bowel issues. The doctor was gravely concerned.  I was rushed to emergency surgery where it was discovered that my lower bowel had died. He checked everything and could find no cause, it died in a 24 hour period.  I spent two days in ICU and was moved to the surgery floor for another week.  I have an Ilyostomy now.  I was sliced from my sternum to my public area. I have staples in my stomach right now.  I  feel devistated!! I just retired in April and had many plans for my life.  There were trips I wanted to go on, things I wanted to do and now I feel this will never happen.  I came home Wednesday to papers, books, mailings from companies that supply items to deal with all of this but I feel so overwhelmed!  I had my daughter here from the surgery until today helping me and we have changed the skin barrier to make sure I can do it.  It went OK but it's almost like you have to have more than 2 hands to do everything that has to be done.  I would like to know if anyone else has alot of pain when the stoma empties and how that is dealt with?  Do those of you that had this surgery to remove the lower bowel have lower quadrant back pain that is pretty hard to relieve?? I did not have this horrible lower back pain before the surgery.  I have another factor that has made my situation unique and that is on the 25th of June 2017 I fell over a piece of sunken concrete in Salt Lake City and broke my 5th metatarsal base bone. I had to have surgery to repair.  I was ordered non weight bearing for 8 to 12 weeks.  This has been very difficult to manage. So as you can see, I am very discouraged and sad over this.  Any suggestions would be greatly appreciated on how to manage all of this. There are no support groups here for Ilyostomy patients.  Thank you so much.

Hello freedancer. First things first: Welcome to the MAO site and thank you for your post which I hope will attract many replies. Your experience must indeed have been a shock to your system and devastating to the perception and hopes you had for your future life after retirement.

Unfortunately, for people like yourself, who end up with a stoma without any previous warning or preadjustment period, the negative effects of having a stoma can seem to be disproportionate to the advantages. Just as with your broken bone, there is a recommended convalescent period when the early stages of the physical healing processes swing into action. The adjustment to a new and very different lifestyle can be as difficult as the pain and discomfort of the healing process and the first few weeks and months are probably the worst in this respect. All those things you describe (very well) like needing to have more than two hands and being overwhelmed by it all  are fairly 'normal' reactions to a traumatic situation that now needs constant management. It is of course important that you learn quickly how to manage the physical side of things and the pain which accompanies the healing process and having your daughter around to help you with that is priceless. Also the manufacturers are very goosd at offering both advice and free samples to hel you find the right appliances for you. However, there is an equally important facet to managing this condition, which often gets overlooked in these early phases because there is so much else to learn, take in and put into practice. What I am referring to is the emotional, spiritual and psychological aspects of being involved in a sudden trauma that fundamentally changes one's life overnight.

From a medical viewpoint, the bowel problems, like the broken bones, have been fixed and all that needs to happen is that the natural healing proceses take their course and eventually you will get 'better'. Unfortunately, the medics tend to neglect to 'treat' the emotional, spiritual and psychological facets of this condition when the aspects probably need attention the most, ie. at the outset of the trauma.  It is little wonder that people get discouraged, saddened and even depressed at the thought that theor lives will no longer be as they had envisaged before the event and most of what they can now see would seem to be weighted down with negatives. THIS IS NORMAL!

What you will find by coming onto a site like this, corresponding with people, letting off steam and reading past posts (to be found within the 'collections' box on the left hand side of the screen) is that you are not alone with the physical condition or with the thoughts that you have about it.

You will learn that those who have had a stoma for a while find ways to manage the condition  and most adjust to the emotional and psychological difficulties given time and a reasonable amount of working on the problems as they arise.

It seems to me that you have made some very useful first steps to making these adjustments by having someone to help you at home and by making contact with people like us on this website.  I hope you get a few more replies from people who have ileostomies ( I have a colostomy) so that you can see that we all have some of these things in common.

Best wishes

Bill         

Bill, always a pleasure to read your posts.  You pretty much hit the nail on the head.

freedancer,

  Welcome to MAO!!  I'm sorry you had to go through this without any warning or preparation.  It's tough enough mentally even when you are prepared for the surgery.

  I have an ileostomy.  I don't recall having pain when my stoma emptied right after my surgery.  The pain I recall was being sore from the surgery, haunched over and not being able to straighten my back in fear of busting my stitches and the pain from all the air trying to dissipate through my skin.  And then I had 2 abscesses that had to be drained and when they inserted the tube, it felt like someone was stabbing me with a dull pencil.  That kept me in the hospital for an additional 2 weeks.

  I remember being sore for a few weeks but it does get better.  It takes a while but you'll get back to a normal routine.

  As far as the plans and trips you have for retirement, you will still be able to do them.  I travel all the time for work and don't have any issues.  You will have a brief adjustment period, getting used to having a pouch.  But there are sooooo many advantages to having one!  Not worrying about shxtting yourself comes to mind first and foremost.  I think I wrote an earlier post about the subject.  If I find it, I'll send a link.

  Don't give up hope!  There is an abundance of support here.  Do you have an ET nurse that showed you the ropes?  If not, be sure to get the information from the hospital.  There are also a LOT of YouTube videos in caring for your ostomy.  I've been meaning to make my own but I procrastinate too much..lol

  Anyways, hang in there.  You will get into your own routine of doing things.  The part I feel bad about is that you busted up your foot.  You will learn how to change your own pouch and have enough hands to do everything.  Watch the videos and you'll get into your own routine like I said.  Let us know if you have any questions.

Bain

Here is the post.  Hope it makes your day better.

https://www.meetanostomate.org/discussion-forum/viewtopic.php?t=7542&highlight=

Bain

Hi Freedancer!

I too have an ileostomy. I got mine on June 22nd, so I am still relatively new to it. The stoma itself should not hurt as there are no nerves in it - the pain is most likely from the skin/muscles around it. I remember that I had pain in the area around my stoma for about 3-4 weeks, especially when it was emptying or when I moved. I figure it is the muscles around it that are getting used to it. I would sometimes use an ice pack around the area that was painful, and that helped.

When your stoma is emptying, do you find that the waste is sitting there, or is it moving down into the pouch? The pain could be due to the irritated skin around your stoma. I still have pain, but it is due to the fact that I have a lot of irritation around my stoma. Mine has retracted and shrunk a lot since I got it - it's now about the size of a dime! I was having a hard time getting a good seal around/near my stoma with barrier rings and the pouching system. Luckily, I have a great stoma nurse who is helping me find the right product. I am finally moving into a convex system, and it feels better. I hope you have access to one to help!

I remember feeling overwhelmed when I had to change my pouch and wafer system. It does seem like you need more hands than what you have. I had help the first couple of times, and then I had no choice but to change it on my own. I have had a leak or two, messed up my barrier ring, accidentally ripped things, and threw out a few things, but I am getting the hang of it. The hard part is when my stoma is active when I am trying to change. My nurse said to change it first thing in the morning or before a meal as that is when the output is lightest. I have been paying attention to when it seems busy and how what I eat seems to affect it in order to make it easiest, but sometimes it is active anyway. A clean cloth, toilet tissue, and/or Q-tips on hand help with that.

As with anything, practice will help.

As far as your back pain - are you talking about your tailbone area? I was having a lot of pain in my tailbone, but I have attributed that to the fact that I am sitting more than I usually do and for longer periods. I have found relief in moving around more, even if it is really slowly. I think I read on another post here that someone else had back pain, and it may have been a result of being on your back so long in surgery. If it is something that is persistent, I would talk to your doctor.

Even though it may not seem like it, you are in a better place now than you were. Imagine if you didn't find out about your condition when you did? Things could have been much worse. The important thing is to take it one day at a time. Remember, you have had a pretty major surgery, and your body is going through a lot trying to heal and adjust to some changes. It takes time to heal. I am 6 weeks post-op, and I feel so much better than I did. Every day you will heal a little more. Take it easy and let your body heal; don't try to push it and do things that you shouldn't.

Use this as a little "me time" - catch up on the TV shows, movies, and books that you have been meaning to do. Think of easy activities you can do that give you pleasure. Enjoy the summer and know that it will get better!

This is also a great site... I spent hours reading through some of the posts, which helped a lot. Just knowing there are other people out there going through some of the same issues can help.

-Audrey

Staying Hydrated with an Ostomy with LeeAnne Hayden | Hollister