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hi everyone,
i'm new to the forum. my husband was diagnosed with UC when he was 18. when we started dating his condition was a first topic of ours and it was something that didn't matter to me. he's such an amazing guy and has always had great attitude about life and always happy. after we got engaged in 07 he got a really bad flare up and had his jpouch surgery done, his final in 08. a couple months later we got married. when we were dating i have to admit it was hard to get used to the symptoms and the aftermath of the flare ups as obviously he had no energy for anything. we had a semi long distance relationship (lived an hr and half away) so i wasnt able to be so hands on when he was sick. after the wedding he was fine, surgery was a success and he didnt really have any problems until this yr. he has his first batch of pouchitis and was also diagnosed with pancreatitis. the last three months have been pretty rough on us. the frequent doctor visits, test, results and hospitalizations have put us both on this fatigued stressed state. i guess i was wondering, have any of you experienced major anxiety thru the obstacles and have you found that its hard for you to be too much physical? i have felt extremly overwhelmed and emotional since i wish i could take his pain away. but i've also noticed that i'm in this funk where the lovey dovey intimate stuff is not my priority right now. as you know with guys they could be dying and still think about it. i dunno. i guess i just thought maybe some of you might have experienced this and that maybe i could find a place where someone knows what it's like to go thru and have been thru this process from the other side of the spectrum, not the patient but the spouse. thanks ahead.
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Part of our stories sound similar as my husband was diagnosed with UC at approx 19 years old - we were dating at the time. It's been quite a life with all the ups and downs, bless his heart. Fast forward 20+ years to May of 2012 - he had an intussusception and when they did emergency surgery they found stage 2 colon cancer. They only did a partial colectomy with a Hartmann's procedure at that time and July 1st of this year the rest of his colon was removed and a J-pouch was created. Takedown is scheduled for Oct 2nd. He hasn't fully recovered by any means from his last surgery and I can definitely relate to "overwhelmed". It's hard - for the patient, but also for the spouse, that's for sure. I hope you can find a way to connect that draws you closer to each other. This kind of stress (we also have a daughter with disabilities) can pull 2 people apart very quickly. Hang in there! I hope things turn around soon!
Hi Ladies
I am from outside the US. Originally from England but now living in New Zealand. My hubby was diagnosed with UC not long after we got together about 19 years ago. We were very lucky and had a period of about 10 years with practically no symptoms at all. When we emigrated he had a flare up, which basically never got fully under control. Things got to the point in 2011 whereby the drugs no longer worked and J pouch surgery was his only option. It has been a real struggle since then, especially for him - but I am finding it hard too!. When he was having discussions about surgery, it was kinda indicated that this surgery would be the best thing since sliced bread and he would wish he had it done years ago. I think he got in his head that he would be drug and pain free for the first time in a long time. Well, it hasn't happened that way and he has really struggled with this. He gets very down and I can't blame him - but I try to keep him going and keep positive. I have been feeling very emotional just recently (we also had earthquakes here in NZ which I am sure have not helped). I worry about his relationship with our 13 year old daughter too. As a typical 13 year old, she doesn't understand that quite often he feels crap - she just sees that he can be grumpy. We have a really good marriage, and we love each other very much - he tells me this all the time. I am just glad I have hopefully found somewhere to communicate with people going through the same.
Thanks for listening Smiler
thanks you guys for your responds and for sharing your stories. i'm happy to have found a place to kinda vent and express myself to others who are going or have gone thru similar situations. definitely staying positive thru this kinds of situations is key as your spouse/partner could tell by just looking at us what we're thinking or feeling. its been hard but i think there's definitely a light at the end of the tunnel. when i wrote my message things were on the down. we were overwhelmed and to a point backed up against a wall. thankfully though the winds have changed a bit and things are a bit better. slowly but surely we'll get thru this.
Peaches, like you said these situations are hard for them because they are physically going thru them, but also hard for us who have to see them endure such pains and discomforts. we have found ways to cherish each moment and appreciate each other thru all of this and the more struggles we get thru together-united, we become stronger as a couple.
Wilson, i'm so sorry for all that you guys are going thru. we've been there. i remember when the hubbs got his surgery the 3months he was with the ostomy bag (his jpouch surgery was done in two portions) he was down and wouldn't even leave his house. i had to drag him out. its a painful process emotionally and physically. stay positive. think of ways to distract him even for a lil bit (a movie, dinner out, a walk in a park. etc) changing his environment or place even if its for an hour can lift his spirits. regarding your daughter, you can kind of explain to her whats going on and having her look up online his condition. the more i read about it, the more i understood him; even if it was just a lil. find ways to spend time together as a family.
As the spouse with the j-pouch, I can only encourage you all that you are my heroes. I don't know what I would've done without my hubby through some of the hardest times of my life. It was stressful knowing I couldn't be there for him much emotionally or physically but his faithful care for me had made me love him so much more and consequently improved our relationship. Not every couple gets the opportunity to show love to one another in this kind of unselfish way. Hang in there!
I am/was the sick spouse...hubby has always been healthy as a horse and never a cold or dealing with a sickness, illness or medical problem was sooo way out of left field to him that he never knew what to do with it or about it.
He tried pity, sympathy, anger, frustration, rejection and every other emotion under the rainbow...he finally settled for passive-agressive. He turned into a frustrated 2yr old. He had no idea how to act.
It was almost the end of us.
Then we found our balance, learned to love each other as we were (gimpy, grumpy and cranky) and move on to a happy place where I was finally feeling good, back to work and confident in us.
Then he had a heart attack. And I finally understood.
It is terrifying. I was lost, panicked and totally undone. Although I had a lot of experience with illness and death I had never felt this lost. I couldn't help him, save him or make his heart beat for him and I couldn't give him mine. I wanted to crawl into his chest and pump it for him.
I managed to get the right people over in time and save him but it left me shaken, shattered and in the throws of PTSD like I had never had when I was sick.
I turned into a raving lunatic, sreaming nutcase and bowl of jello. I cried all the time, yelled at him like never before and nearly broke every dish in the house. I was sleepless, sitting up in bed with my hand on his chest waiting for the darn ticker to stop ticking.
It took months (ok, fine, a full year) for me to climb back in off of the ledge.
He can now go out for a walk without me panicking. He can fall asleep on the sofa without me listening to his breathing (still do it occasionally)...
Being the spouse sucks. NO question about it. You become the silent victim of someone else's disease and are a helpless 2yr old begging for mommy to come back.
I have no advice, no special magic cure except for, Keep talking, never close the other one out and force them to open up. And don't forget the sexuality. Sick does not mean neurtered. We still have desires and needs. Sometimes sex is just a way of reassuring the other that you are still a couple and 'normal'.
Sharon, like you I have had it both ways: as the “patient/recipient” and as the caregiver and can personally attest to the feelings and the will of the ill partner to recover based on the efforts of their caregiver. My wife at the time of my first surgery (J pouch with temporary ileo) essentially abandoned me and started what became an ugly divorce with the initial loss of my two daughters. I experienced no love or intimacy for a long period of time (a real bummer). A number of years later, I met a Polish journalist who had recently been diagnosed with recurrent cancer. Everything went well from the start and we shared our medical “conditions” very early in our relationship. We were married within months of meeting and pursued treatments to attempt a cure. I remember being with her many nights when she experienced severe pain and nausea from the brutal chemo and radiation treatments she underwent. I also remember the many hours I spent online researching her condition and locating clinical trial studies (she participated in 8) and communicating with cancer researchers worldwide. One of the trials was at the Naval Hospital through NIH in Bethesda, MD in which we had to fly there for a three day stay each month for almost a year. Her various treatments extended her life for six years and provided for good quality times together. I feel very good about having been her caregiver and would do it again for someone I loved. That said, I miss her greatly.

Four years later, I met my current wife and the intimacy, companionship and love we have shared has more than made up for all of my bad years. She was with me 100% during my latest diagnosis and BCIR surgery, and I really appreciated it. Being a caregiver can be a very rewarding experience and one in which the person being cared for may be in too much discomfort to express their appreciation. But I really feel that my late wife paid me back by bringing my very loving and caring current wife and me together.

The short answer...yes, as spouses and caregivers we will have our share of anxiety. I can only guess that only the coldest of hearts can watch the person you love and with whom you share your life go through this and not be affected.

The long answer...I've fought depression and anxiety since before my husband and I met. He was diagnosed with UC at fifty, proctocolectomy at fifty-four (about a month after my fiftieth birthday), and J-Pouch construction about seven months later (on our twentieth anniversary this past Mar). Timing in my side of the family is impeccable!

I turned to our family doctor and requested we up my depression med and up my anxiety med while we work through this...a therapist helps too!

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