Seeing IBD Specialist Tomorrow - Decision?

Tornado, how you doing today? Calmer, I hope... not that you were worked up, but I hope your mind isn't racing as much as it has been! Are you leaning towards anything?

Ha! Normal is boring anyway, right??? Why are you opposed to a j-pouch, if you don't mind me asking? Seems like it's the closest to "normal" we could get. I'm freaking out too- after a disastrous day, with 3 accidents, & I worked the full day.... here I am, nursing a giant glass of wine, & trying to imagine an ostomy bag on my abdomen. The wine helps!   What does your GI doc say about the stricture? Have you asked him/her if you let it go, what you can expect? That's what I need to ask my GI- so if I decide to wait another year, what can I expect? Surely these docs have had patients like us, where they recommend colon removal, but the patient is adamantly opposed to it. I'm almost embarassed to ask my GI though...

The long term complications keep me up at night. I am over statistics when it comes to this disease because 1) I have large bowel strictures with UC, and 2) 'normal' can include several standard deviations from the average. Adhesions and obstructions and needing to stay on meds and fighting for an inviable pouch is just plain scary. Finding out later that I have Crohn's...

(sheesh, maybe I've seen too many posts from a certain English girl)

We did ask about waiting. No meds in the pipeline (or off label Crohn's drugs) are going to heal the strictures. She said the cancer risk is very real, and screening would be tedious. I would only be buying myself time, but not a better option. They are going to need to come out, and I am not on steroids and 'healthy' otherwise right now.

Tornado6 said...
(sheesh, maybe I've seen too many posts from a certain English girl)

I'm so sorry! ;_;

I wish I could promise you both that if you had surgery, everything will be okay. But I can't make a promise that I can't absolutely guarantee, so all I can do is hope that everything will be okay. Don't take my past negativity too much to heart: I get very depressed at times and that makes me see everything in a bleak light, including having a stoma. But now that I've been in a better mood for a while, the stoma hasn't seemed as bad either.

My situation was somewhat different. My surgeon was very pro-surgery, but my GI wasn't. He told me if I could have a resection, he would be fine with that, it would be no problem: but a colectomy and end ileostomy, no. The surgeon clearly thought I was wasting my time trying anything beyond Remicade, but I think some professional code of conduct forced her into being neutral: otherwise I think she would have just told me to have surgery.

(Obviously it wasn't an emergency situation, otherwise my informed consent wouldn't have come into play.)

Anyway, long story short, I spent an entire year dithering over the decision to have surgery. In the end, I think two things forced my hand: a fear of being on steroids long term (I could not get off them) and a flare-up in Jan 2013 being the final straw which broke the donkey's back. I was tired and worn out, and surgery seemed like the only option guaranteed to work.

And... it did work. I know I have moaned endlessly about having a stoma, but that's partly because I'm only happy when I'm moaning <_<. But I'm off all the meds, and functioning normally without them.

I'm tiring now... so I'll stop waffling. I just want to wish you both strength and good luck!

I think I've decided. I've been thinking & praying since Tuesday.

I am not having surgery on February 21st. I'm going to call to cancel that tomorrow.

I am not going to try the resection. It is tempting, but there is no chance I'll be off of meds, and I won't have many options if the meds stop working for me.

I am going to try to wait it out until summer. My son is graduating on June 5th, and the kids I teach have their state competition that weekend. I'm going to try to keep to lower residue and less gassy foods until then. I'll probably only have two more Remicade infusions, maybe three if they make me take the last one in June.

I really think that they have as much information as they can have now about my diagnosis. Odds are in my favor that the post-colectomy pathology will show UC.

I am still terrified of my post-colon life. I am pretty sure that my QOL after surgery will be worse than it is now. I am hoping that I'll have time to turn that around, because attitude does make all the difference.

Eva Lou said...
yup, me too. I've been "waiting" for about 5 years now, & every year my scopes look worse. I've even talked with my work, because I don't qualify for FMLA due to being part-time. I haven't worked enough hours in the past 12 months to be eligible. But, they will hold my job for me, for up to 12 weeks.

Eva,

I was back to work within 2 weeks after being discharged from my 1st-step of my surgery, 2 more steps to go. My surgeon said not to lift anything over my head for about 6 weeks but I could do almost anything else within reason. The hospital stay was only 5 nights, I went in on a Wednesday out Monday morning. So I only missed 2 1/2 weeks of works total. If you have a physically demanding job than it will take longer before you can go back to work.

Eva Lou,
If you are going for an permanent ileo the procedure isn't complex and recovery time should should be pretty quick (with no complications of course). You wouldn't need anywhere near 12 weeks time.

I called to cancel today. Obviously the doctors aren't thrilled, but they're just going to have to get over it.

His graduation has been a goal of mine since I was 19. It is totally psychological, getting past that date on the calendar. I don't want him to remember his senior year as 'the year my mom had surgery.'

The computer only goes out three months, so I can't reschedule just yet. I have a potential trip to my son's last Int'l competition in the end of July. (He is going anyway. I missed it last year because of UC. I'd like to go if I can, but I already have family signed up to take him.) Sometime between Father's Day and my birthday seems like the right time.

My QOL now is good. I am not running marathons, but I do most of what I what I want to do and eat what I want. My two biggest complaints are fatigue and gas/bloating. My doctor does not know for sure if surgery will improve those or not. I know I will be in the bathroom more than I am now. I can even pass gas, but of course ladies don't. I might not even be able to discontinue my meds, but I hope I will.

The chance to get off of meds is why I would choose the j-pouch over the resection.