The Invisible handicap

Wow.  I feel a lot like you do. Never discuss my jpouch issues as no one understands other than my poor husband who lives it daily with me. I’ve had more ignorant comments that have been made regarding digestive disease that I’d like to swat people and how they all believe you cause your digestive issues or stress does.  It’s sad but true that no one has respect or empathy for invisible diseases but mention cancer and you’ll be amazed at the responses and sympathy you would get. 

I feel your pain. I have been dealing with j-pouch issues since my surgery in 1995. i have been hospitalized numerous times. been in the E.R. even more. I'm frustrated and afraid for my future. Good luck to you and God bless.

I understand every word exactly. I have been pondering all of these questions and thoughts ever since I got a colectomy in 2008 at 46 (was diagnosed 5 years prior with severe UC in 2003).  Since I have to feel pretty good to get out, they only see me when I appear well and in good spirits. This seems to lend itself to the vicious circle of 'she looks fine to me, mustn't be THAT big of a problem'.

I'm sorry to hear you had to have this done in your 30's. Colectomies are for 'life extension', but only we know that it's not a replacement. 

Although I sympathize and feel for your pain, I personally don't agree. 

I was born sick. It's a fact. I had 3 major disease, 2 genetic and one due to a med that my mom took while pregnant. 

Until 30 I had had as many surgeries as my age, average 1+ per year.

I had my k pouch done at 18 (it's been 39 yrs) and have had another dozen +surgeries since.

I do not consider myself handicapped because of any or all of these problems. I do not expect anyone to understand...how could they? I cannot understand perfectly healthy people destroying their bodies with drugs or food or any other toxin or poison. How could they understand me? 

I take as good care of myself as possible, whenever possible but age and accidents seem to be getting the best of me. Slipping and hurting myself badly made me feel handicapped. Not being able to use my arms? Ditto. 

But my k pouch (which requires intubation min 8xs/day) doesn't. It is part of me and my body. Part of my body image too. Would I prefer to be born healthy and not have any of this? Of course...But no one asked my opinion. 

I have a hole in my abdomen that will never close and needs to be covered, it leaks and stains my clothing but that doesn't stop me from standing up on a stage 5xs/week and teaching full time. 

I don't want the world to know about my medical problems, that is why I had a k pouch and not an end ileo, for more ease of movement, sports, discretion, and fewer limitations. That is me and who I am. Not everyone else. 

I left home shortly after k pouch surgery in search of a new life, in search of the freedom that my disease prevented me from having. I found it. It's been 33yrs since I moved to Paris and it isn't the easiest lifestyle. Bad bathrooms, no sinks or handicapped stalls, Turkish toilets, sandpaper toilet paper and toilet seats so disgusting that I have no words. 

But I fight the good fight, do not give in or give up. I just spent a week in Belgium (with 2 useless forearms including 1 broken elbow) teaching and giving conferences on Happiness. No one knows or could ever guess about my physical condition. I like it that way. 

I know and my hubby knows and does his best to help me when I need it. His family doesn't care, couldn't imagine and certainly isn't very helpful most of the time. But I have him and that's enough. 

Attitude helps a lot when battling everything that we have to battle. Mindset helps too. If I allow myself to feel everything that I have lived and suffered, I would never get out of bed. So I don't. I am not strong or stronger than anyone else...I just have a different outlook. 

I will send you hugs and understanding because I do understand but I will also wish you strength, courage (because we need bucket-loads) and very thick skin. I have found that the day I stopped caring about others' opinions of me or expecting their comprehension was the day that I found peace. 

Hugs

Sharon

Sharon, you are amazing with all you have been through, and yet you continue on.  You are a role model for those of us who have had far less to cope with.

Thanks Bill, 

Much appreciated, especially coming from you.

Happy holidays

Sharon

I understand what your mean. I already shared so much with friends and family that when another complication comes up or something in general, like the stomach bug, I hesitate to tell people I’m sick. I’m afraid they’ll think I’ve always got”something” wrong. 

Sharon- thanks for sharing your story- you’ve been through so much and are truly  brave.

I wonder about the original poster’s question, though...how long will a j pouch last. What is the long term outlook? I’m only 37 so by the time I’m 70, what are i chances I’ll have to go back to an ostomy? I’m having my post op appt with my doc on wed- I’ll ask her that. Still curious to know everyone’s thoughts...

I don't see why you should lose your pouch due to age...it is not a given that it will happen, not any more than any other medical problem.

That said we have been through surgeries, drugs, treatments and an assortment of infections along with whatever disease or illness brought us to the pouch in the first place. 

Cortisone treatments over the long term can fragilize certain tissues. So can other drugs. Surgeries can lead to adhesions. Nothing that is done to or for us is with potential consequences. 

But out pouches are natural and not artificial materials and built to last. 

If we don't stricture, prolapse, have chronic pouchitis or get fissures or fistulas there is no real reason why they shouldn't last. 

I would worry more about staying healthy all around than about 'just' the pouch.

Diabetes could be problematic along with other systemic diseases for the pouch but then again, we can't control our general health. 

In other words...Stay healthy as long as possible, be nice to your pouch and don't do anything silly.

Sharon

A well-crafted pouch with a good blood supply will generally last a lifetime. Like any body part, things can go wrong with it, just like a colon, a heart, etc.

I don’t consider a J-pouch a handicap or disability. If anything, it’s the opposite, since it relieved me of a disability. If the pouch is badly constructed or functioning poorly then that’s like any other disease or condition: perhaps treatable or repairable, and sometimes disabling.