Seeking Support - Excessive Stoma Bleeding & TIPS Procedure Experiences

I had a TIPS procedure to correct bleeding from my stoma. It was terrible. I got 26 units of blood last June and was in the hospital for the whole month while they tried to stop the bleeding. Then at the end of February, I got another 11 units, and they performed a TIPS procedure which involved going in my jugular vein through a portal to my liver and a bypass was put in to relieve the pressure in my liver. (Look up TIPS). But I finally decided to do some research on this and found that I now have an expiration date on living! Basically, a 90% chance to make it to two years and a 65% chance to make it to 5 years! They also say no one lives long after the 5-year period. Has anyone had this procedure? I'm scared and about to spend all my savings to enjoy life till I can't! In all honesty, I've never been afraid of death till now. I'm very scared and feel all alone. My wife is playing it off like it's nothing and won't talk about it or listen to me. I've been living on borrowed time for years and joked about dying, but now that I have a use-by date, I'm in a panic. If anyone has had this, I would love to hear from you.

I have no words to describe what I'm feeling after reading this! I'm sorry you're going through all this. You'll be in my thoughts and prayers.

Hello jghandymann20.

Thank you for sharing what must be a very difficult situation for you. I found the TIPS video very instructive, not least for the reasons they do the procedure and the potential side effects.

One of the more useful ‘tips’ for people who have had this procedure seemed to be  to join a cirrhosis care group for support from people who are experienced in this field.

As for finding out your possible or predicted expiration date; this can present difficulties such as that which you describe:  anxiety, fear, obsessive focus, panic, and a potential change in ‘normal’ behaviour.

These are social, emotional and psychological reactions which not only affect your own life, but also affect those who are close to you.

In your post you ask ‘If anyone has had this’. I am reading that question as not only about TIPS (which I haven’t had) but the contemplation of death – (which I certainly have had).

There are many things that might be contemplated in the near-death situation and spending money (often to try to buy ‘happiness’) is sometimes at the top of the list.  My own take on this is that trying to ’buy happiness’, rarely ever works, and if the money runs out everyone except the receivers of that money- lose.  

I am finding some ‘contentment’ in planning to use what little money I have to support those who have supported me during my life. Thinking that my own death is ultimately not likely to affect me in the same way that loss, bereavement and grief are likely to affect those close to me who will be left behind.

The psychological emotional and social facets that you mention are very important and just as relevant to ‘manage’ as our physical condition. If you feel that you are not controlling these things effectively, then it might be useful to seek professional help for these aspects of your situation.

Personally, I use writing to try to document and clarify where I stand on these issues and to plan for my future (no matter how short that future may be).

I do hope you are able to get a grip on these things before they get a grip on you.

PS: I have many written rhymes covering the difficult concepts surrounding death/ dying which really describe how I am going about the more important business of ‘LIVING’ before I die. Many of the rhymes and the reasoning can be found in my 2018 publication ‘SOD’.

Although these things are not directly relevant to stomas, I am happy to continue corresponding with you on these issues if you think that might help.

Best wishes

Bill

Bill, some of your posts touch my heart - this was one of them. Thanks!

As for predicted expiration dates, to me they are all just a false notion. This site is a good example of predictions - many have long outlived prediction dates published on various websites regarding different illnesses.

My mom suffered a brain bleed and stroke at 11 p.m. at night. In the emergency room, they told us there was no hope (she was 82 at that time). They told us the doctor was called but that he was not going to come in to check her as there was nothing he could do. Not only did she survive and thrive, my sister and I took her cross country on the train from Phoenix to Chicago to visit family on several occasions. Experiences I shall never forget with laughter and stories galore about those trips. In fact, one time our train was disconnected from the engine due to a bomb threat from a passenger dressed as a priest. Oh, the stories we could tell.

My mom lived to be 90, and during those (mostly good) years, we were told on 3 different occasions she would not survive the night.

"We can live but one day at a time"

Just Breathe

I cannot add much to the many wise words of advice offered here. That procedure is less risky than liver surgery and those estimates of survival rates are inexact. We all know people who survived for many more years than what the doctors had forecast. All the best wishes.

Words of Encouragement from Ostomy Advocates I Hollister

I announced to a nurse who was flushing my port that I was terminal. She quickly replied, "We all are." And she is correct. I have terminal cancer and have deliberately avoided asking how long I have, as I do not believe anyone can measure the human spirit or determination. I will live until I die, and before I was told I was terminal, I had the same attitude: I will live until I die. I cannot say that I don't wonder if I will get to be here for my first great-grandchild. And all those wondering... I try hard not to let doubt seep in and love telling myself, "Every cell in my body hears every thought that I think," so I try to make them all positive. Hope this helps...

I have read a site about this but it did not say anything about the amount of your life cycle. It did say there are other things connected to the bleeding problems. As some have already said, no one knows exactly when your time is up. Just live your life as best you can and have life in order. I pray you will have peace about this. I would also check with my doctor and not believe everything you read on the web. Best wishes.