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9 replies

Do you know how to just BE?

K KiaMember
I've hesitated to post this bc I know many in here suffer so much and have not been fortunate to find adequate relief. So please forgive me, in advance, as I don't mean to be insensitive or like one of those coloned whiney people we've talked about....

But has anyone experienced that feeling after healing that you don't know how to just BE? I mean, how to function like a normal, healthy person without being preoccupied with your gut?

I am going through that now as I recover from pouchitis. I haven't been well in over a decade but now I am transitioning to normalcy. It's been so long that I don't hardly know what to do with myself.

I recognize it bc I felt the same way post colectomy, although that was far more dramatic. Going from raging UC to instant wellness was bizarre. It took a while to figure out who I was and what I was supposed to do with myself. I was my colitis....and then I wasn't. I was in college at the time, so I truly had life in front of me and didn't know where I was headed yet.

Now I liken it to being in mommy mode and then being away from the kids for a weekend. You almost don't know what to do with yourself.

Like I said, it's not as dramatic this time around, but I definitely recognize the feeling once again. I have to remind myself I don't need to hurry through a store; I've become a master at scanning the territory, getting what I need and bolting asap....being tense and anxious the whole time.

I also find myself holding back....afraid to push too hard bc I might wear myself out. I know I am still recovering, but I am conscious of this ingrained habit of holding back.

I know I'm not the only one....I just would like to hear others say the same, lol.
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M mgiamartinoMember
i think it's great that you're getting to that point where you can start to leave everything behind you although i know it's not an easy transition. i had my surgeries this past aug. and nov. and it still preoccupies my mind most of the day. i'm glad to be back into my routine at work because that, at least, takes my mind off of it a bit, but i still worry that something "bad" is going to happen and that i'll be back in the hospital, need surgery for some sort of complication, etc...probably because everything happened so quickly the first time? i don't know. it's crazy to think back and realize all that we've been through but i guess all we can do is take it one day at a time and maybe relax a bit and enjoy where we are right now?...anyway, i just wanted you to know that i can definitely relate and that your'e certainly not alone Smiler best of luck to you, michelle
K KiaMember
Thanks, Michelle.

Yes, I remember that feeling of waiting for the other foot to drop after my first three surgeries. I certainly don't mean to compare what I feel now to what that is like. I remember how hard that was and I want you to know it gets better and the feelings fade with time and distance from the experience.

I wish you the very best of health!
skn69skn69Member
Some of us never get off of the psycological merry-go-round of sick-hospital-surgery-convalecence-heal and start all over again...I usually expect the other shoe to drop any minute and it often does in my world...just when things seem to be healing and going back to 'normal' something usually happens to me (or someone close to me) than starts the whole cycle all over again...but this is the hard part...not accepting that the worst will always happen and that inspite of our medical history we can live 'almost normal' happy lives...
Some of those reflexes can be trained out, others can be worked on and deminished and others will always be knee jerk reflexes like seeing a public toilet and automatically walking in to it...or just remembering exactly where they are located in every single place we go...
Time does heal most wounds and for all of the others there is talk therapy, prozac and other meds and good people who love us and are willing to talk us through the worst of it...
Hang in there...life is short and occasionally good...
Sharon
P Pouch4WfMember
The psychological part of this disease is so devastating. My wife went went through the rollercoaster of every treatment available. Being given the hope that a medication will put her into remisssion, then slowly weaning off of steriods and then having the flare rage back is an absolutely awful existence. After going through this cycle 5 or 6 times, she ended up as a changed person.

We are now recovering from J-Pouch surgery, 1 month post op and as her husband, I think I can finally see a life without disease. However, I think that she still cannot. As much as it is explained that this is a cure, she still is waiting for the UC to come back.

I imagine for people who went from Diagnosis to J-Pouch in under 1 year, the psychological toll is much different.

Hoping for the best, expecting the worst is not any way to live.

Pouch4Wf
K KiaMember
Yes, thank you for all the replies.

Sharon, yes, the toilet tie.....It didn't escape me last week that while I was out and about all day (incredibly rare), that I was most at ease when I was seated on a public toilet.

Instead of fully embracing the outting and jumping for joy, I was pensive. I was thinking how I was grateful for this good day, but I do not expect it to last. That I need to be prepared for that shoe to drop.

I also felt guilty bc I know, compared to so many others, I am very fortunate. After years of this, however, I know it's a process and I just have to walk through it physically and psychologically.

Hopefully it will become a faded memory.

All of you are so strong and I thank you for being here.
mgmt10mgmt10Member
For me I guess I will always have "poop" on my mind, especially when I go out somewhere like going out to dinner (always have to go a half hour after eating dinner) or on an outing for the day or something like that. But the positive side of that is, it isn't like the UC days where those bathroom trips were accompanied with pain and urgency. At least now I can hold it until its convenient to go. But I find myself thinking sometimes when I'm out to dinner with friends how nice it must be not to have to go poop right after a meal. Then I just think back to how sick I used to be and this is actually pretty darn good now. Smiler
skn69skn69Member
Kia,
I remember when I had just gotten out of the hospital post K pouch surgery and my dad took me to my favorite café/French bakery...as we were getting out of the car the 'urge' hit me and I went into panic mode (I was 100% incontenent pre-kpouch)...hot and cold sweats, fear, shaking etc...a knee-jerk reaction to that 'down-there' feeling like it was all about to pour out...it took my concious brain about 1min to inform my unconcious brain that I no longer had a problem and that I had a k pouch...and then relief washed over me...That was 33+yrs ago and whenever I get that phantom pain/pressure I still get residuel panic...some things just never go away.
Sharon
TE MarieTE MarieMember
Pouch4Wf and all other UC related folks,

I thought I was going to be cured of my UC with the operation, I was told that and I was lied to as I was not cured. If you or your family member had the double stapled procedure they left approx 2cm of the rectum attached to the rectal stump. this 2cm can get UC and that is called cuffitis. It is rare and only UC folks can get it.

If you had the surgery with a muscosomy(?) and hand sewn procedure your chances are less of having cuffitis (UC)but chances of incontinence is greater.

Plus with the muscosomy(?) there is no guarantee the potential UC cells might not grow back.

The odds of getting cuffitis are rare but you will read of a lot of us on here that have it. I believe it is 4% of everyone having the surgery but can't remember the percentage of UCers having the surgery.

Also IBD affects other areas of our body. Who knows what happens first or what causes what but many of us have other autoimmune diseases as well as UC or crohns. For example, thyroid, arthritis, lupus, MS, fibromyalgia S.A. etc.

So waiting for the other shoe to drop may be depressing but realistic.

Take care everyone

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