So, I'm kind of worried. I have some sore spots in my pelvis under the rib cage and the in the lower right of the pouch and although it is better, some continuing difficulty with trapped gas compromising the emptying of my bowel. I was just at Mayo and dxed with ileitis, pouchitis, and a fistula which they sealed off and clipped. I finished a 14 day course of cipro and flagyl which was a hard run with nausea, headaches, fatigue and a general feeling of horribleness. Now I am off the meds and in the wait and see interval before another scope in August to see how the inflammation is doing and if the fistula has dried up and gone dormant. I want to be hopeful but find myself slipping into worries about the possibility of Crohns. Jan advised, and I agree, that it is too soon to face that concern as the two biopsies showed no evidence of granuloma so I am glad for that and glad that my doc did not dx Crohns just noted the indicators that are present. It is just hard to practice the "day at a time stuff" and the "be in the moment" stuff without a freak out about the future. Just thought I'd write this down in a post as I am aware that many of you, if not most, have endured long stretches of uncertainty, pain, and helplessness which are psychologically a big challenge. I am drawing some strength from all of you today in my own personal struggle with fear.
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OK, so rather than assume this is not Crohn's. Let's assume that it is. What will change for you? Not much really. You have the same issues no matter what they call it. If the easy treatment gets you back on track, that is spectacular, but it still does not guarantee that you do not have Crohn's.
What would a Crohn's diagnosis mean? It would not mean that they will order you to have your pouch removed. On the contrary. With a Crohn's diagnosis, the objective is to preserve as much small bowel as possible, so pouch removal is a last resort, same as it is now. A Crohn's diagnosis would open new avenues of medical management, so you'd have more options, not less.
The main downside is knowing that you have a chronic disease that cannot be cured. You sort of have already been living that life, right? Plus, it is depressing to think you have yet another thing thrown at you.
But, I try to keep in the back of my mind that all of us who had a j-pouch for UC can someday wind up with a Crohn's diagnosis. Not a death sentence, but not a party invite either.
You are right, it is tough to live in the moment and not obsess about things out of our control. But, nobody knows what tomorrow will bring. You could be hit by a bus tomorrow and it would not matter what sort of IBD you have.
I hope that you begin feeling better soon, regardless of what your ultimate diagnosis is!
Jan
What would a Crohn's diagnosis mean? It would not mean that they will order you to have your pouch removed. On the contrary. With a Crohn's diagnosis, the objective is to preserve as much small bowel as possible, so pouch removal is a last resort, same as it is now. A Crohn's diagnosis would open new avenues of medical management, so you'd have more options, not less.
The main downside is knowing that you have a chronic disease that cannot be cured. You sort of have already been living that life, right? Plus, it is depressing to think you have yet another thing thrown at you.
But, I try to keep in the back of my mind that all of us who had a j-pouch for UC can someday wind up with a Crohn's diagnosis. Not a death sentence, but not a party invite either.
You are right, it is tough to live in the moment and not obsess about things out of our control. But, nobody knows what tomorrow will bring. You could be hit by a bus tomorrow and it would not matter what sort of IBD you have.
I hope that you begin feeling better soon, regardless of what your ultimate diagnosis is!
Jan
You are so right, Jan, and your solid, voice of reality is always strengthening when I am weak spirited and fuzzy in my thinking!!
Not weak spirited...human! I have been living with UC most of my life, and its many ways of intruding upon my lifestyle. Sure, I have not done extraordinary things, but I am happy to say that I have excelled with ordinary things. Becoming a nurse, a wife, a mother. Yep, I've had to take time-outs to focus on my health (not always IBD or autoimmune related). My family, friends, and coworkers did not discard me for it.
It is only human to worry about the future. Just don't let it consume you.
Jan
It is only human to worry about the future. Just don't let it consume you.
Jan
Thanks again. I think I am also a bit more down because of pain from the fistula repair and my son and grandkids just left to return to DC. It was a fun, good visit but I missed my David and I wanted to share the joy in our son and the grandkids he never really got to know. Grief, pain, being alone and separation from my family really got to me today. I am grateful for this site to express my feelings in words and then move on.....
jan is so right on..she said it all really and so well as usual..
i for one do not know what is going on in my "life of its own intestines" but whatever the dr calls it(pouchitis,s.i.b.o. ips) ..i have to treat it the same way no matter..so it does not seem to matter much and it does not frighten me as it might have years ago..
but that said we all have down times with our situations ... exasperated by other things going on in our lives for sure.. i think its
normal but when i am frightened or down i try to sleep more,get a walk..eat enough..read or distract myself as best i can..
aside from the very helpful idea of expressing yourself on our site as you already do and getting some comfort from that you might try to
concentrate on the above.
i for one do not know what is going on in my "life of its own intestines" but whatever the dr calls it(pouchitis,s.i.b.o. ips) ..i have to treat it the same way no matter..so it does not seem to matter much and it does not frighten me as it might have years ago..
but that said we all have down times with our situations ... exasperated by other things going on in our lives for sure.. i think its
normal but when i am frightened or down i try to sleep more,get a walk..eat enough..read or distract myself as best i can..
aside from the very helpful idea of expressing yourself on our site as you already do and getting some comfort from that you might try to
concentrate on the above.
Thanks Rebecca,
I also rely on walking and trying to prepare good meals that are pouch friendly (what ever that means at any given time) as a way of coping when I feel really down and discouraged. It also helps to concentrate on listening to others about their lives and struggles and family circumstances as a reminder that life is just crazy hard for everyone. Even joyful events can be overwhelming!! All of those distractions plus a heaping dose of rest and classical music are things that sustain me. Thanks for the encouragement and for sharing the ways you personally cope with the sadness and disappointment that is a part of living with intestinal illness.
I also rely on walking and trying to prepare good meals that are pouch friendly (what ever that means at any given time) as a way of coping when I feel really down and discouraged. It also helps to concentrate on listening to others about their lives and struggles and family circumstances as a reminder that life is just crazy hard for everyone. Even joyful events can be overwhelming!! All of those distractions plus a heaping dose of rest and classical music are things that sustain me. Thanks for the encouragement and for sharing the ways you personally cope with the sadness and disappointment that is a part of living with intestinal illness.
Oh yeah.......I forgot another good way of coping with everything. As a young widow and empty nester, I believe more and more in the comfort of my furry friends. I belong to the church of cats and dogs and it is so helpful!! Just thought I'd say ......
Hi Savannah,
I am sittin g here on the North American continent surrounded by friends and family (this is the annual pilgrimage home)and funny enough, a lot of my pain has dissipated...being distracted, feeling loved and needed, having those people who know you so well and can make you laugh...they all go a long way to comfort us and make some of that awful pain stop screaming so loudly in our bodies.
Hubby is at 'home' in France and I am at 'home' where I belong...in the arms of those who have known me since childhood. I am so busy that I seem to forget to hurt so much. Family does that to you.
You really need a girlfriend fest (or feast). A place full of hugs and love and understanding where David can watch over you with a smile.
I won't say "let go" like so many must...I would suggest that you integrate it all into a new life full of people who can be there for you and hold your hand (not just virtually like us) and hug you hard.
Time to start taking cooking classes, pilates or learn to sail...whatever interests you may have had... start a new business...write songs ( or just sing them out loud in the park...you will make lots of friends that way!)
Hugs from this side of the Atlantic today
Sharon
I am sittin g here on the North American continent surrounded by friends and family (this is the annual pilgrimage home)and funny enough, a lot of my pain has dissipated...being distracted, feeling loved and needed, having those people who know you so well and can make you laugh...they all go a long way to comfort us and make some of that awful pain stop screaming so loudly in our bodies.
Hubby is at 'home' in France and I am at 'home' where I belong...in the arms of those who have known me since childhood. I am so busy that I seem to forget to hurt so much. Family does that to you.
You really need a girlfriend fest (or feast). A place full of hugs and love and understanding where David can watch over you with a smile.
I won't say "let go" like so many must...I would suggest that you integrate it all into a new life full of people who can be there for you and hold your hand (not just virtually like us) and hug you hard.
Time to start taking cooking classes, pilates or learn to sail...whatever interests you may have had... start a new business...write songs ( or just sing them out loud in the park...you will make lots of friends that way!)
Hugs from this side of the Atlantic today
Sharon
Hi Sharon. Thanks for taking the time to respond. I am glad you are in the US surrounded by old family and friends with love, support, and hugs galore. I DO have lots of support from family(despite distance) and a large community of solid, reliable, sensitive, caring and loving friends. These relationships are a godsend and I always worry that they will tire of my health problems but they don't seem to. I try my best, especially when feeling well, to give back generously in all the ways I can to nurture these folks along through the trials and tribulations in their lives. I want so much for my relationships to feel mutual with regard to give and take. So...... not to worry that I have not reached out beyond my dear husband, David. (He was always nervous that he didn't know how to really care for me when I was really sick and how to manage the house, social calendar, etc., so I know he would feel lots of anxiety now were he alive and helping me cope with my present health concerns.) Plus as women, I have always been aware that the chances are great that we will out live our men so I truly welcome trusting relationships with my women friends. They are lasting treasures.