I have been having a very hard time with my Pouch and with my life.  I started getting pain in my butt several years ago. it started out small and became debilitating over the years. It"s the same story that I have seen in several posts. I have had MRI CT and Ultrasound tests done. I have also had exploratory surgery and nothing can be found. The pain is absolutely off the charts. I thought I was a pretty rugged person, but this is just too much.

as if that wasn't bad enough, my now ex wife left me because she was so tired of it ruling our lives. The thing is I still love her and am not taking it very well. I mean the pain is bad enough, but to have her walk out on me was just so hard to take. She became so abusive over time.

I am so alone now I have moved to a town close to my Mother because she is the only Family I have. Friends disappeared along time ago. when your illness is like mine it's hard to have a social life.  I live in Portland Oregon. I have been trying to find a Jpouch support group but haven't had any luck as of yet.

The loneliness is getting very hard for me. My self esteem is so low right now I feel like i'm in a dark hole.

 

Original Post

Ferguson, I'm so sorry for your physical and emotional pain. You were abandoned during a time when you needed support the most. It makes sense that you moved closer to your mom. Do you have an MD who can prescribe for your pain? Because the first thing you probably need to do is reduce your pain. Have you considered alternatives, like a BCIR or an ostomy, temporary or permanent? I know that chronic pain can make you feel helpless, but if there are pain relieving options, they might be worth considering. Several years is too long to experience debilitating pain. If you want feedback on surgical alternatives, there are many of us who have chosen them and can give you info and support. BTW, you may not find a local jpouch group as it's comparatively rare, but you may have more luck finding a chronic pain support group. Your local hospital may have information. Hang in there.

Ferguson,

I am so sorry. It is bad enough to have to go through this journey but to get left by the wayside makes it all the more painful.

I am a black and white person and like black and white answers.

Can the pain be fixed? Yes or no.

IF yes, then they should do what is necessary (meds, nerve blocks, treatments)...if not...

Is there an alternative? Yes. Surgery.

Can the source of the pain be removed? In no, fine another solution...if yes, what surgeries are available? 

Can they remove the pouch/rectum? If they do, will the pain go away?

I know that these steps sound cold and stupid but they help me get through the worst and push me towards decision making....

Once you get some sort of control over your health you will feel better about your life. Removing the source of the pain (if possible) will give you some of your freedom back and allow you to get on with your life.

As for your wife...I cannot judge (although I would love to)...Some people have higher pain thresholds than others...some people can not stand to lose the one they love to disease, pain or other problems, be they physical or emotional. Most of us would like to think that we know how we will react to the illness or disease of another but the reality is that we don't...she couldn't take it (no sure if that makes her selfish or just human)...I won't say that you should get over her...that would not be fair to you...but I will say that for some of us, the pain of lost love lessens over time...And I hope that for you it disappears entirely. 

We are a special kind of people. We suffer but do not give up. We suffer some more. And we keep suffering and keep going on...but we do not have the choice of giving up. We are strong. Super human beings who have not only been given our share of pain to bear but that of many others too...

For now take extra special care of yourself...Find good, kind doctors who will listen and take care of things as best you can.

We are here to listen. 

Sharon

 

 

 

I am so sorry to hear this. You are in good company, as there are a number of members here who have had their marriages and/or family relationships fall apart because disease took over their lives. Small consolation to know you are not alone in that respect.

You may want to broaden your support group scope and check out the Portland CCFA support group at OSHU. While it is not j-pouch specific, I am sure there is a common thread among all of you- chronic, debilitating, bowel disease.

http://www.ccfa.org/chapters/n...oup-portland-or.html

Don't forget we are always here. We may not be able to solve your problems, but we do empathize.

Jan

You are not alone. 

We are here for you. 

If you need to private message me... Do it. 

Or anyone.  

But keep coming in here for support now. 

We... Are here for you.  You are not alone. 

Richard. 

Hi, I too suffered through years of pain in the same area you mentioned.  Doctor did every test but always came up with the same answer.....they could not find anything!. How could there be "nothing" if the pain unbearable and not manageable ? Tried every available treatment...pain meds, acupuncture, pain blockers ....you name it I tried it, all with littler relief. Finally after years of true agony a friend referred me to a gastro doctor in Boston. I was hopeful but realistically thought would get the same response. Met with him did all the usual tests were done. But he found what was causing the pain. He went a little deeper , with the scope and what he found was a large abscess, caused by a long term leak from the pouch.  Went in for day surgery , had it drained and pain relief was immediate. Can you believe it!!! I thank God every day that I was guided to this doctor. He changed my life. I am sharing this in hopes that it might me beneficial to you. You never know might be worth looking into.

Wishing you all the best ....

That just STINKS. I am a wife of a j-poucher and would have never thought of leaving him when he was going through such an ordeal.  I hope you find relief like Lizziemom.  Hang in there.

I'm a Jpoucher for 2 years now, had UC relapse on 2012 and had to get my colon removed after treating every medication on the market.  I'm  right now recovering for almost 3 weeks of a huge pouchitis crisis (the worse since I had my Jpouch) and after reading all those nice comments for Ferguson, I feel so grateful to be part of this group.  Like most of the people here, I went through a lot of situational depression, lots of physical and emotional pain, but Ferguson, I assure you even the worse pain can be temporary if we can find the right doctor, the right meds, the righ treatment.  Please hang in there.  I think Sharon is so right.  Having options black and white it will help.  Maybe you can write in a notepad alternatives, starting with your physical pain, but please, never give up, and anytime you want to vent your feelings, is always somebody here for you.  We are fighters, we are survivors, we fought lots of battles and this very rough patch you're having right now, it will pass too.  I wish you the best of luck with all my heart.  

Lauri 

Last edited by LauraLee

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