Brother's Homecoming and Struggle with Pain Management

Hello everyone! Since my last post on the forum, a few things have happened. First off, I'd like to thank each and every one of you who took the time to read and respond to the post! It absolutely means so much to me and my family, and I truly thank you from the bottom of my heart. Secondly, I'm happy to say my brother is back home as of Thursday 8/8/13, but as usual, we are having more issues.




So he came home with a permanent ileostomy, a colostomy that isn't being used, and a wound vac, no colon, half a small intestine, and no large intestine. So right now, he is hooked up to all these IVs and things like that, and we have home nurses coming to help out. Since the time he was in the hospital, he was doing pretty well because they had him on pain medication which I believe is called Dilantin? Of course, he became addicted to the medication again. Last year, this exact same thing happened, and that's why we ended up getting my brother his medical card, and we put him on a controlled amount of pot brownies. This helped him extremely with all his pain and the discomfort that came along with the withdrawals of coming off the pain meds. This time is a bit different, but he is still addicted, and now we have him back on the brownies, but the thing is, he truly believes that it's not working for him since he sees it coming out of his bag so quickly. And yes, of course, the best way to get the medical weed in him is if he were to smoke it, but unfortunately, due to the fact he has chronic lung disease and asthma, smoking any form of anything is no option. The last few nights have been so rough, and he so badly wants to go back to the hospital because he knows they will put him right back on the narcotics. But we do not want that for him; we are struggling with him to keep him strong and fight through the withdrawals :/




So anyway, I was just wondering if any of you amazing ostomates have any tips or suggestions or anything like that. I was wondering how some of you dealt with the pain during the first few weeks back at home. Or any tips for him since he is new to the ileostomy because when he had the colostomy, it was all much easier. He is having a hard time adjusting to the watery bowels that come out so quickly. So I'd love to hear if your experiences after your ileostomies and how you all dealt and things you discovered that helped or anything really! I've been on this site the past few days, and it's amazing how much I have learned and passed down to my family and brother. Once again, thank you so much, all of you, for your input.




-Christina and family

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Hello Christina,  I can't help with the problems associated with the iliostomy but most of us have had to deal with the chronic and sometimes intense pain. Fortunately, in my case the morphine did nothing to ease it after surgery so, (knowing the problems of becoming addicted) I declined it after the first dose and put up with the pain. The pain did get better for me over time. However, the problems with addiction are a whole different ballgame. I have dealt with many people who have become addicted to a range of different substances and the way this affects those around them who try to 'care' can be devastating.  Just as every person and family are different, so are the set of circumstances surrounding an individual's ability to manage and cope with this problem.  Sometimes I got the impression  that it was the 'carers' that needed the help and support more than the person who was addicted. It is so difficult to watch someone you care about being distressed in such a way. I don't really have much 'advice' on the subject of coping with withdrawal symptoms but what I have learned is that a reasonable strategy is to be patient and to be aware of those windows of opportunity to help that do occasionally arise. Otherwise it is still a matter of being 'there' for the person for when they do need you and for when you can be of practical, emotional or psychological help.  I will not post the whole of my verse on 'caring for addicts' (written in the first-person)  as  many of the verses  do not fit your situation. However, the last three verses of this poem do try to capture this concept of choosing the most appropriate moments to help, from an addict's viewpoint.



I will use all sorts of tricks

just to get another fix.

Then, when I’m at my most obtuse

no-one will escape abuse.



There is no sense of loyalty

to those who wish to care for me.

So care-givers who act in haste

will see their efforts go to waste.



But maybe there’ll come some days

when I will want to change my ways.

It’s only then I might concede

a care-giver is what I need.



                                                B. Withers 2012



Much of my rhyming verse has focussed on the darker side of life and so might well illuminate many of the things that your brother may be experiencing.  This is not to say that he would appreciate it, as it is very difficult for people in pain to caste thier minds beyond their own set of circumstances.  Anyway, poetry is more likely to help the poet than it helps anyone else.  The closest I get to helping people in this way is to take particular individual's  own words, meanings, and emotions, versify it and give it back to them as a reflection of what they have told me.  I found this can work well in those cases where there is very little else I can do for them ---- At least it shows I listened!

Best wishes Bill

Bill,



Yes it's a lot different to have an ileostomy because of the constant faucet running.  First be sure he is careful with his diet because that is the main culprit that can cause pain.  DO NOT LET HIM EAT ANYTHING WITH MEMBRANE, CHINESE, VEGGIES OR FRUITS, NUTS OR ANY SKIN. They all can cause blockage which is extremely painful.



Try getting him on an anti-anxiety medicine like xanax.  He will help him with the psychological challenges he is dealing with and helps calm the gut if physical pain occurs.



Good luck and feel free to message me for any other tips.  I've become very knowledgeable with our condition.



Debra