UC to J-Pouch Story

Archive for the ‘Support Systems’ Category

Offering Support: What to Say in a Difficult Situation

Posted by jenellepower on October 21, 2008

I’m finally getting around to posting again after dealing with some new issues (Positive: returning to work full-time and going back to the gym. Negative: unforeseen financial ramifications from being sick and my first appointment with the j-pouch surgeon where I was told it’s not clear that I don’t also have Crohn’s, so the OK for the next surgery is pending the results of another pathologist reviewing my case).

I’ve been thinking a lot about what others say to me. I realize it can be a very difficult situation and people are unsure how to react. I’m also aware that I do not always say the

Here is a picture of me about 5 months post-surgery.
Here is a picture of me about 5 months post-surgery.  I'm a bit thinner and have less hair but am starting to look normal again.

most appropriate thing in every situation, though when I’m in unsure, I

tend to lean toward not saying enough rather than saying the wrong thing. That isn’t necessarily better, just a natural tendency of mine.

So here are some points/tips regarding what to say to someone who is going through the surgery process (or at least what I would like to hear – I’m sure others having differing opinions) and possibly in other situations:

1. Don’t predict the future. Telling someone that everything will work out isn’t necessarily helpful. At times, it can feel like you’re downplaying the struggle that the individual is facing. For example, now that I’m worried about my pathology report, people say things like “I’m sure it’ll be fine and you’ll get the next surgery.” I don’t find that resurring at all. If the surgeon doesn’t know, then you don’t know. Something like, “I hope it works out for you” or “I’m sure the waiting must be really difficult” would be much more helpful.

2. Do not try to show empathy by comparing your own experiences to mine. I’m not saying that other people don’t also have difficult experiences or that because my experience was so horrible that no one is permitted to complain about their own difficulties. I find it odd that some people are very hesitant to even mention feeling sick or tired around me. The fact that I am so sick does not make you less sick. However, when I am sharing my experience at the hospital, for example, telling me about your trip to the ER with a migraine is not helpful. Just listen and respond, don’t compare. The exception is when you actually experienced the same illness and are comparing/contrasting your experiences. I say to my partner that “unless someone has had their intestine threaded through their abdomen, they just don’t understand”.

3. Acknowledge other people’s feelings without judging. Often when I’m sharing an experience or a recent problem, I just want someone to say something along the lines of what psychologists call Reflection of Emotion. For example, “That must be really frustrating” or “Poor you, that must be difficult” or even “That must suck”. It doesn’t have to be eloquent; it just has to show you’re listening to the situation. Never tell someone they shouldn’t feel the way we feel. We have little control over the emotions we experience in reaction to an experience.

4. Follow the lead of the person who’s sharing their experience. This is relevant both to the amount of information the person wants to share and the topic the person wants to focus on. Try to be sensitive to what a person is telling you. If a person is providing vague answers, don’t push for details they don’t want to share. I think this is also applicable to those close to someone who has had the difficult experience. My partner has found himself in situations where he has been pressed for information about my illness that he was not comfortable sharing. In addition, I sometimes find myself repeating the same issue in a conversation. If someone continues to bring up the same subject repeatedly, then perhaps they feel that issue is unresolved for them or maybe they would like to talk about it further.


Posted in Friends, Support Systems | 5 Comments »

Getting Healthy Story #3 – Jeff

Posted by Megan on June 17, 2008

To represent the others who are living, surviving and having their own journey to get to good health. We will be including  “Getting Healthy Stories.”  Below Jeff has shared with us his journal of his health. It is a story of struggle, love, support, disappointment and mostly this guy just keeps getting back up.  He is a truly remarkable voice to hear.  Grab something good to drink and get to know Jeff below:





Photo via: rbackowski

Posted in Getting health Stories, Living with jpouch, Support Systems, Ulcerative Colitis | Tagged: , , , , | Leave a Comment »

Book Review: Strong at Broken Places

Posted by mark on June 14, 2008

I have found great solace and understanding from the incredible books by Richard M. Cohen.  Cohen has battled Multiple Sclerosis (MS), two battles with colon cancer and loss of sight, and he is still standing.  His first book is a memoir on his battles called “Blindsided: Living a Life Above Illness” (2004)   And his most current work in INCREDIBLE:

Strong at the Broken Places: Voices of Illness, A Chorus of Hope 2008

In Strong at the Broken Places he chronicles 5 individuals with 5 different chronic diseases, one of the diseases represented is Crohn’s Disease. 

I recommend both these books, especially the Strong at the Broken Places for those living with or affected by someone with chronic disease. It will blow the lid of the “secrets” that the 90 million Americans living with chronic disease face in shame and privacy. 

Photo via: Strong at the Broken Places


Excerpt: Preface Strong at the Broken Places by Richard M. Cohen

“These are faces of illness in America. Do not look away. The characters may surprise you, even shatter a stereotype or two. They are people, not cases, survivors, not victims. Quite simply, they are us. They carry shared resolve, a determination to survive. To flourish.

Too often the sick are seen and not heard. Listen. Their songs are soft but steady. Hear the sound of steel, the quiet toughness at the core. Pay attention. These people sing to themselves and, if we choose to listen, to us all. I, too, know sickness and have joined the chorus. We walk together as one, each with an individual identity and unique story.

My story of coping with multiple sclerosis and colon cancer was told in Blindsided. That struggle did not end. The book came and went and a weakening body took no notice. Illness kept cutting its swath. I am angry and hurting, and each day I need to relearn the lessons I had the temerity to believe I could teach. Arms and hands weaken, legs and feet falter. My vision suffers, squints revealing progressively less at any distance. Now I look to others to find the road out of the dark forest.

We, the injured, are everywhere. We are fast becoming a nation of the sick. The numbers do not lie. Chronic illness has become the silent flood, flowing slowly, steadily under our doors. We tumble in slow-motion from safe ground, twisting and struggling to survive in a cold sea of all that we once were and can be no more.

Chronic conditions attack body and spirit, assaulting the quality of our lives. Some are life-threatening. All are life-altering. Ever so slowly, moment by moment, function and sensation cease. Muscles and nerves malfunction. The body’s processes grow difficult. Our view of ourselves as normal human beings making our way in a neutral world is challenged as, in the eyes of others, we become our illnesses.

Chronic conditions do not resolve themselves. Unlike terminal illnesses, there is no high drama with these diseases. They are not sexy, and are little noticed or understood by an unknowing public that would prefer not to think about them. Those who are hit hard know the frustration of being marginalized, reduced, and pushed to the side by these chilly attitudes. We are handed a cocktail of condescension and a basket of doubts about our limitations. The crisis of confidence that follows can be contagious and soon affects every part of our being.

With chronic illness, every facet of a once-robust life is overtaken and redefined. From the ability to find and hold jobs to the capacity to build and sustain personal relationships, the facts of a sick person’s world change dramatically. The slow slide down carries us, and we lose control.

Still, we go on. We double the effort, for what is the option? Too often, we remain silent. We are a hidden population, invisible except to ourselves and those who love us. When I wrote Blindsided, I felt alienated and isolated. I now know I am not alone. Many travel the same road, and common ground lies beneath our feet.

We have so much at stake and so much to say, but it can take years of battle with our own demons to recognize the power of what we have to offer each other. Nobody will speak for us with the authority we bring to our own stories. Where so many among us find the resolve and the inner strength to rise up and keep going is a mystery to me. That we do serves as pure inspiration.

This book profiles five strong people on the front lines of illness. Each fights a different war. All are ready to share. Sometimes they hobble, even stumble, but they are extraordinary for their resolve. They will finish on their own steam according to their own terms. They, and their families, speak from the heart and tell their stories with pride.

This gang of five is not timid or shy or self-conscious about their physical flaws. They are unapologetic about their body’s weakness. They try so hard, struggling to travel well on one of life’s toughest journeys.

Hemingway had it right. If the world is not the enemy, neither is it our friend. In the end, no matter who surrounds us, we travel alone. Our friends and loved ones are there, providing an infrastructure of love and support. But courage must be drawn from within. Let the world see us as we see ourselves and have the faith to permit us do it our way.

I have been in these people’s faces for years, brazen enough to ask the questions others would be too polite to touch. That was allowed, and so far, we are still talking.

I admire each of these people and am proud to call them my friends. ” – Richard M. Cohen

Posted in Chronic Disease, Living with jpouch, Support Systems | Tagged: , , , | 2 Comments »

Friends said: “Wish We’d Known”

Posted by mark on May 23, 2008

Last night some friends came into town and we went out for a great Italian dinner. We got to talking about how much things have changed, and how I weigh 140 pounds now 5’6″. Just saw my weight, my UC weight was around 120-125. They were saying how they felt bad that while I was so sick and going through the medicine trials, and all the coping to prepare for surgery that they weren’t there more to support us. They said, “we knew you were sick, but were so involved in our own lives.” We just tell them we had tons of support once people really started realizing how sick I was. Megan mentioned that now we and they know that if a friend is sick and not getting better, get in there, ask questions. If you show real interest and they need the support they will respond.

Side Note Pouch Related: Yes, we had wine. Yes, I do drink some with my jpouch. This question is often asked about whether I drink with my pouch or not, just too much will upset me just like anyone!

Posted in Friends, Support Systems, Ulcerative Colitis | Tagged: , , | Leave a Comment »

UC to J-Pouch Surgery

Posted by mark on May 11, 2008

                                 Mark’s Step 1 surgery was a laproscopic total proctocolectomy with ileoanal reservoir reconstruction (a jpouch) with a temporary loop ileostomy until the jpouch heals (‘takedodwn’ is 2nd surgery).   Step 1 was done in early July 2007 and he was in the hospital for 5 days .  Thankfully, he experienced no complications from this major surgery.   Step 2 surgery will happen after step 1 recovery.   See on the right side there are 3 series of Photo Journals documenting the three stages of Mark’s surgery process. Click on Photo Set 1: Surgery Colectomy to see the full set of photos and journal


Mark had Ulcerative Colitis (pancolitis) for 7 years (diagnosed at 24 years old, surgery at 31 years old), an active flare for 6 years with little relief from medicine (you name it, he tried it); 3 years into the flare the GI recommended surgery, it took another 3 years for Mark to committ to the surgery.  Many dietary and herbal options were tried as well.  Through this process it was important he was 100% sure he had exhausted all his options so that when he decided to have the surgery, he wouldn’t have any regrets.  It was a HUGE decision to make, and it was important to do it when Mark was sure all his options had been exhausted.  The reason it was so important to know this surgery was 100% the right option is because there can be many complications with this surgery and life with a jpouch or ostomy.  This has been the best decision for his health and quality of life.   Click on Photo Set 2: Inbetween Surgeries to see the rest of the recovery and life with a bag..      


In simple words, Mark’s disease, Ulcerative Colitis (severe pan-colitis) made him have chronic diarrhea, bleeding, and urgency.  Then the related symptoms from those main symptoms were of both physical and emotional in nature.  The surgery he had removes his entire diseased colon (large intestine) and rectum, and creates a new holding tank of stool out of his small intestine (called a jpouch).  Go to this site here if you want more info:  J-Pouch Illustrated.  And  Click on Photo Set 3: J-Pouch Surgery to see the full set of photos and journal.     

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Posted in Family, Friends, Ileo-anal anastomosis, Ileostomy, j pouch pictures, j pouch surgery photos, J-Pouch, Jpouch, Jpouch Surgery, living with j pouch, living with j pouch photos, Living with jpouch, Photos, Support Systems, Ulcerative Colitis | Tagged: , , , , , , , , , , , , , , , , , , , , , , , , | 32 Comments »