Depressed/Need Advice

Hello All:

Over the past year I have had an ostomy, a closing of the ostomy, a removal of most of my colon and then an ileostomy. Most of my colon was removed about two months ago. The surgeon left about one foot of the colon from the anus to just above the sphincter.

Today I under went a Sigmoidoscopy. The purpose was to determine if the remaining part of my colon, was still inflamed. The surgeon said there was still inflammation. He wants me to go back to the gastro doctor to determine if the inflammation can be reduced so that he can reconnect me--connect small intestine to the remaining part of my colon. If the inflammation cannot be reduced then he wants to give me a J-Pouch.

It has been over one year since all of these medical issues with my colon began and I am getting pretty depressed because the doctors can't seem to fix the problem and I still have a bag attached to my stomach.

I have been reading postings and realize many of you have it much worse than I do. But I just need some insight as to whether or not there is a future without a bag hanging off my stomach.

Thanks in advance to all who read this and respond.

Nick

Original Post

Nick, so sorry you are feeling depressed. To form a j pouch, they only need about 2 to 5 cm of the rectum and no colon. The pouch is formed from the small intestines end called the ileum. Why is your surgeon concerned about a foot of colon you won't even need? Is the game plan to connect the small intestine directly to the remaining colon without a j pouch? My only problem with that is, if the inflammation is in the colon and not going away, is it even control able? I lost my colon to UC. There was no making my colon healthy, no matter what we tried. So a pouch of one kind or another was the only option to be healthy again that I had. I guess I'm just saying is, that a direct connect( colon to small intestine) would be okay, if you are going to be healthy again. If not, you prob. should look into a j pouch. Mine isn't perfect, but I haven't regretted it for a minute. 

Aimee

Hi Nick,

So sorry for what you are going through--we've all been there and it sucks. Depression is a pretty natural response, so do make sure you talk to your loved ones or a counsellor about it as it can easily overtake your life dealing with chronic illness. There is no shame asking for help to get through something so difficult.

As for the medical stuff--I had a bag for over a year too. I had a three step surgery with all kinds of complications and it felt like it would never get done since the goal post (not having the bag) kept getting moved. I spent nearly 5 months in total in the hospital over the year, and the rest at home on sick leave. It's exhausting and depressing, I know. The bag sucks. But, just try to remember it WILL get fixed eventually, and the delays are an unfortunate part of the healing process. Your doctors sound like they are trying to do what is best for your health in the long run, so perhaps take some comfort that you have people thinking of your long-term health instead of being cavalier and wrecking your insides with quick decisions. Maybe they can reconnect you, but if you need a J pouch, they are fine too. Most of us have them with very few overall problems compared to living with disease, so either way it sounds like it will eventually be a bag-free, healthy life for you  Hang in there.

Hi Nick, 

Yes, there is hope and yes, you have options...if your remaining colon has to go, then go it must but that does not mean an outside ileo for the rest of your life, just a very short period of time (and a lot of J pouchers adapted so well to the outside bag that they either choose to put off having the reconnect or don't have it done at all)...We do not know how we are going to react until we get there. 

Next, there are 2 or 3 possibilities in all...one is the Kock pouch (internal ileostomy)  or the BCIR its updated and modernized version. They do not require outside appliances, only a catheter a few times a day to drain them. Pull out the cath and cover up the stoma (the size of a buttonhole) with a band-aid.

So do not panic...

And yes, depression is a normal reaction to everything that is happening to you and your body...anesthetic is a major contributor to mental fog and confusion and well as feelings of disconnect and loss of mental clarity.

You may have PTSD, a reaction to losing a major organ that has a huge role in keeping your mental state balanced....or you may just be plain depressed at everything that they are doing to your poor body...and you deserve your depression...you have paid a high enough price for it!

So do not feel guilty about that too...just allow your body and mind to heal...it will take some time...but you will get there.

Sharon

 

I was also shocked when I was told my colon had to go. But when it’s gotta go it’s gotta go. 26 years later, my only real regret is not having the surgery sooner than I did. Although I don’t have a perfect J pouch, I have a treatable form of chronic pouchitis or Crohn’s which is vastly preferable to the out of control ulcerative colitis that consumed my colon. The way I look at is I traded up or upgraded, if you will, in diseases. Quality of life is good and the last 26 years was vastly superior to the 20 years of UC that preceded it.

Good luck Nick. It’s a shock now but there may be better days ahead.

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