I have been in remission for so long now that I might have forgotten what a bad day might be. But today, today might be the start of coming out of remission and into those bad, very bad days.
I have had lots of cramping and been in and out of the bathroom all day today. I think that the stress is getting to me. I know that stress doesn't cause this disease but I do know that it can kick it up a notch. At least in my case stress really gets my UC's engine going.
So what's a girl to do? Easily said, "Not stress right" but NOT easily done. I think about this situation day and night. There are moments when it isn't in the forefront of my mind but it is always there. Lingering around in my thoughts.
Here are some of the things that I think about.
Could the pathology have been wrong?
Should I request another colonoscopy?
Will I find the right surgeon?
Will they operate in time before it turns into cancer?
Has it already turned into cancer?
When can we meet with an attorney to do the will?
Living will, power of attorney, DNR.
Letters. Letters to my children, to my husband, to my family and friends.
Finishing photo books and baby books.
Video, should I make videos?
Will my small intestine be long enough for the J pouch? (PRAY FOR THIS TO BE TRUE!!!)
Will they be able to do this laproscopically?
Will I wake to a permanent bag? (PRAY THIS WONT HAPPEN!)
Will the recovery take longer than 12 weeks after each surgery?
Will I need one, two or three surgeries?
Will my children be scared because mommy isn't around for over a week?
How will they react when they see me in the hospital?
Should they come to see me?
What will we tell them?
How long will it be until I can lift my children up?
Will I become depressed?
Will I become infertile? (PRAYING THIS NOT TO HAPPEN)
Will I lose my hair? Strange but I just read this can be a side effect to a major surgery.
Will my husband love me the same?
Will our marriage grow stronger due to the road we are on or will it start to shatter?
Sex? What will that be like after surgery?
Will I close my heart and mind to God because I am mad?
Will my faith become stronger?
Should I change plans for my daughter's first year of preschool?
Should I withdrawal the kids from fall activities?
Will my mom and I fight? (of course we will a little....we are mom/daughter.Grin)
Will my husband feel tremendous pressure that his heart will withdrawal from family life?
Should I exit personal activities like MOPS?
Will I feel shameful?
Will I be put on steroids?
What will I wear in the hospital?
Will I have to stay longer because of complications?
Will I have my own room?
Will a service dog come to see me? (I hope so, I love those dogs)
Will people pray for me/with me?
How do I tell people? Should I tell people? (OK so I am telling Bloggy world but that's different in a way, right?)
How do I not play with my children for weeks after surgeries?
How do I try to put on a happy face?
Will the pouch work?
How do I not let this consume my conversations with my husband?
How do I talk to him about my desires if things go wrong?
IF things go wrong what will happen to my little family?
How do I not go there....to the "IF"?
How will he tell my children if the "IF" happens?
Will I lose weight due to surgery (OK, I'll be honest..I wouldn't mind this part)
Will I get an epidural?
What will I be able to eat?
Will my legs swell from the Potassium drip? And the doctors believe me when I tell them it is from that? Happens every time....no one believes me. They stop the drip and boom....leg swelling goes down.
Will you be able to notice the appliance I will wear during hopefully only the first 12 weeks after the first surgery?
How will I sleep with that thing on?
Will it leak all the time?
Will I get a skin rash from it?
How do I look at myself in the mirror with it on?
Will I take pictures of it?
Will I celebrate when it is time for the "Take Down" Surgery?
How will I really be after this is all done?
So I could go on and on. Are you even still there? Did I lose you during that list of questions that race/linger in my head and on my heart?
I don't know, I just don't know. But if today wasn't the start of coming out of remission than that day will soon come with all of this. All of this stuff in my head and on my heart.
Questioning,
ML
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Wow -- you do have so much to grapple with. I'm sorry you're dealing with this and know that you've got a whold of people praying for you! In addition, I pray that God can put your mind and thoughts at peace!!!! {{{{{{{{{Hugs}}}}}}}}}
ReplyDeleteJust found your blog and I plan to catch up as soon as I get some free time. I know it can seem overwhelming this side of surgery, but please know that all the pieces fall into place as you walk through it. Don't be afraid, you can do it, and what waits for you on the other side is worth it. :-)
ReplyDeleteChaz
I can't answer any of your questions, but I can tell you I admire your honesty and transparency. Praying for you this morning!
ReplyDeleteOk, I can't even begin to grapple with what you are dealing with, but I can answer a few of these questions!
ReplyDelete1) Don't leave MOPS! You are gonna need all of your friends, by your side, through all of this! We are all here for you ML - thick & thin girlfriend!!
2) Tell your friends - I haven't seen anything come over email, and I know you are probably leary of telling so many people (that you do or don't know), but you know better than that. We don't judge, we pray!! You need that prayer support right now, more than ever!!
3) Don't leave MOPS! Your hubby & kiddos will appreciate the meals that we will bring to you :)
4) Don't go to the IF's until you have to, and trust your hubby! You guys both said "for better or worse, sickness & health" and you know he meant every word of it! TRUST HIM, and trust God to sustain him when you're down & out.
5) Don't leave MOPS!!!!
Love, love, love you, and am praying for you every day my friend!! :)
All these questions will be answered one day at a time. You have to trust that God is in the center of all of this. Take a deep breath and only search for the answers that are pressing for right now. I am praying for you!
ReplyDeleteEveryone's different, so it's hard to answer these questions and be 100% accurate, but here are the ones that I can answer based on my experience.
ReplyDeleteWill I find the right surgeon?
You definitely have to be comfortable with your surgeon. I don't know if you're still in the Phoenix area. If you are, I definitely recommend Dr. Young-Fadok at the Mayo Clinic. She is probably the most intriguing person I have ever met.
Will they be able to do this laproscopically?
In my experience it depends on the surgeon. I opted for the Mayo Clinic in Phoenix because my surgeon in Reno would not do it laproscopically. Dr. Young-Fadok was able to do a laproscopic surgery and my scarring is very minimal.
Will I wake to a permanent bag?
It is possible. So far I've only had an ileo bag for about 3 weeks and I would much rather have the bag forever than have UC. You may feel differently, but the bag is surprisingly not so bad.
Will I become infertile?
From what I've been told it's possible, but unlikely. This is one of my big concerns and I won't really know until I start trying to have children which isn't for a long time.
What will I wear in the hospital?
I just wore the hospital gowns because the JP drain was leaking everywhere and I didn't want to get it all over my own clothes.
Will I have my own room?
I had my own room at the Mayo Clinic. That's something you'll want to ask the hospital about when you find out where you plan on having it.
Will I lose weight due to surgery?
I've lost some weight, not tons.. but some. More will be lost after I am off the prednisone. You'll probably lose a little because you're on liquids for a couple of days. Honestly, I was hoping to lose a little more than I did. =)
Will I get an epidural?
I didn't. I was on dilaudid for a couple of days, then vicodin.
What will I be able to eat?
They'll have you on a low residue diet.
How will I sleep with that thing on?
I'm still trying to figure this part out. I'm a side and stomach sleeper. I can kind of sleep on my side, but it's still awkward. Truthfully, it's rough for the first few weeks. I think I just barely started getting restful sleep.
Will it leak all the time?
I've had it leak a couple of times, but nothing out of control. It just sucks when it does.
How will I really be after this is all done?
You'll probably be surprised at how much better you will feel.
Oh, ML, I'm sorry that you have had such a rough time of it! Even though I haven't had to deal with this issue, I understand the anxiety aspect and worrying about each and every detail. Each detain feels fundamentally important when you are facing something so big.
ReplyDeleteBut let me tell you a couple of things that I do know....yes, yes, yes, people will most definitely pray for you (we'll be starting today!). Also, I second Jennifer...don't leave MOPS! Take each meeting, event as it comes and don't feel obligated to be there each and every time. We understand, and it doesn't make you any less a part of MOPS.
And about your husband understanding...this pregnancy has tested me/us/him in some pretty gross ways. I mean, I haven't just been dealing with nausea, but some extended colon issues that all of my doctors say they have never seen to this extent in an otherwise normal pregnant mommy.
My husband has become more of a stand-up man through it all. (Not that he wasn't one before...just more than I imagined). He has been more of a protector, more compassionate than I think I am at times, has developed a greater sense of love he says, and believes me to be one of the strongest people that he knows. (I don't see myself that way...)
I know that your husband loves you like crazy, too, and he may grow a lot through this journey with you, but only closer to you!
Of course you can add me to your roll call. Don't hesitate if you have any more questions. I'll do my best to answer them. =)
ReplyDelete