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Welcome to MeetAnOstoMate
The best place to meet and talk to other OstoMates with 17,427 Members.

So my doctor says I need to reach out!

Posted: Mon Nov 20, 2017 11:04 pm

I have to admit, most days I feel like I'm about to lose my ever-lovin' mind! It's nearly 10 post-op loop ileostomy and I've yet to get the skin around the stoma to heal. Before I had the surgery, I "thought" I did a ton of research so there'd be no surprises and I'd be well prepared for a good recovery. One of the matters that I missed... the part this sort of surgery plays in the mind of someone struggling from years of major depressive disorder, generalized anxiety and PTSD. Having to be readmitted for a couple weeks after the initial surgery went about as WRONG and anyone can imagine.

So now, being a woman of a certain age, arthritis in my hands makes changing the appliance a task that often reduces me to tears. I'm just about ready to be done! Is it the Fibromyalgia? Is it simply aging and intolerance to cold weather? Is it mental health struggles? I know all the things I "should" do, "should" feel and I certainly know everything I "should" be grateful for. I really do try hard. I'm told I just need to be patient, but I wonder how! 

I know it could be worse. My doctor says I need to reach out... how/where do I start? Can anyone relate?

 

Posted: Tue Nov 21, 2017 3:10 am

Hello Vicky.

I had to smile at the title to your post because if my doctor had said that, I would have replied that 'everytime I reach out, I drop something'. Most of our beautiful china has been dropped and broken in recent years because we simply cannot hold onto small objects like we used to and we have taken to all manner of different things to try to alleviate arthritic pain.  Here, in the UK, with its cold and wet climate, arthritis seems to be endemic and it appears to affect us oldies particularly badly. That is perhaps why so many retired people have been opting to migrate to southern France and Spain. However, with the ridiculous exit from the EU, it looks as if this option will now be closed to those who may have wanted to give it a try.

Living with a stoma is relatively easy compared to living with the sorts of psychological problems that you list in your post but add them together and they don't exactly make things any better. What does help a little, is to develop a positive attitude and to try to look for positives in every negative you face. They are there if we look hard enough and don't let the negative stuff so overwhelm us that we get stuck in them. In  this respect, your doctor is probably right, in that sometimes, reaching out can be a positive distraction from all the things that seem so negative.

I have read your past posts and your replies to others on  this site and can confidently say that it looks as if you are already 'reaching-out', which is a good start.

For my part, I find that going out into the community and trying to help others is a worthwhile exercise, that takes my mind away from the more immediate negatives in my own life.  It is perhaps unsurprising that, when I am face to face with other people's problems, that are far worse than my own, it puts all my angst into a different perspective and helps me to carry on regardless. Sometimes, the people I meet, just want a companion to share (rant) their own troubles with and I can appreciate that need, as it can sometimes have a cathartic effect to express oneself in this way. Fortunately, I have the ability and capacity to listen attentively and empathise with what others are saying about their unenviable lot in life. However, this skill is assisted by the fact that often they are expressing views that I can easily relate to because similar things are happening to me.

This is why a site such as this is so useful in bringing people together who already have something in common, which makes it easier to talk about at least one aspect of potential negativity without attracting a negative or judgmental response.

My own feeling is that the term 'being patient' is often an excuse for sitting back and not doing anything to try to change things. I prefer to get out there and try to make things better for others which, in turn, helps me to feel better within myself, even if it doesn't change my own physical ailments, and the ravages of old age. 

I hope things work out for you soon.

Best wishes

Bill

  

Posted: Mon Nov 27, 2017 8:45 pm

Look in to using a "Mouldable Flange".  I know that ConvaTec makes them, but not sure about others.  I use them 3/4 of the time to help heal the skin around the stoma.  The other 1/4 of the time I use flange that has no tape barrier to help repair the skin where the other product has tape (as i have an allergy to the adhesive).  I also have silver nitrate sticks that I use to burn any sores that are open.  I won't lie....it doesn't feel very good putting the stick in the sore but it does basically cauterize the sores and helps keep things dry under the waffer.  The other option might be to use Duoderm (it doesn't have adhesive like tape and get it placed snug up to the stoma, then put the flange over it.  No matter what you do, I would definitely suggest the Silver Nitrate.  I'd also suggest that your doctor is far from an expert on after care of an ostomy.  If you have access to an E.T. Nurse, they will likely be more help.  One final issue I had with my skin, albeit related to the irritation the adhesive in the tape caused, was that I woud get yeast infections where the tape was and that made the skin red, swollen, sore, wet and itchy.  You can't use topical treatments.  The only real solution is to tape an anti-fungal pill (looks a little odd when I go buy a Canasten pill, as a guy, but if it fixes it, I don't care!  Smile

I can't help with the mental aspects as I am far from a poster boy for good mental health after 30+ years of dealing with health issues.  I've just set low expectations out of life now, which makes achieving very easy.  Smile

Posted: Mon Nov 27, 2017 10:18 pm

Vicky, I don't have your problems with depression (my husband says that I am disgustingly cheerful all the time - I am the ONLY one in my family who does NOT suffer from clinical depression and/or anxiety disorder), but I do know something of what you are going through with the arthritis. It's not too bad yet for me, but I can see the day coming ...

I may not suffer from depression myself, but helping my husband and my sons cope with it has given me a bit of an objective outside view. The most important thing I learned is that while you are in the middle of a depressive episode, every horrible, nonsensical thing you say to or about yourself makes perfect sense to you at the time, but not to someone on the outside. You tell yourself, "I'm stupid and I can't do this" and IT'S NOT TRUE! You can do it, you can make a good life for yourself even with the stoma, but you can't see it from the inside. So the first thing to learn is, "When I am depressed, I lie to myself."

Each of my family members has developed different coping mechanisms. My husband has has excellent results from correct medication combined with meditation and cognitive therapy. My oldest son is on anti-anxiety medication and immerses himself in drawing (the combination of discipline and concentration required help him considerably). My youngest immerses himself in music (guitar). He, too, went through therapy and was on medication for a time, but is now off.

Please consider seeing a counselor for your depression. It WILL NOT miraculously get better on its own. And the fact that you have physical problems as well interplay with each other. The frustration of dealing with arthritis while dealing with your ostomy make the depression worse. The depression makes you feel horrible ABOUT the physical problems, and the circle just winds tighter.

I have noticed that all 3 of my family members experience greater control over their depression when they have something that focuses their attention and requires intense concentration. Art, music, meditation, other hobbies that require some effort and intensity all help. Keep your mind nimble, even if your fingers aren't any more.

I have no magic bullets for this. I have watched them struggle with this for literally years. But they are doing much better now, with time and hard work, and I don't worry any longer that they might hurt themselves. I wish I could just reach out and hug you, but I can't. I can say that it CAN be better than it is now.

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