NHMike wrote:Horrible time yesterday and today. Constant bathroom trips and quite a bit of pain this morning. I had a look at my sleep chart and it's 6 hours of sleep getting up every ten to fifteen minutes to go to the bathroom. A fair amount of blood on the pads. So my problems:
- I had some very dark thoughts
Mike, I'm sorry you're having a rough time of it. I had seen many quotes here and as well on LARS research papers that it can take 2 full years after resection for Bowels to continue to improve towards pre-treatment normals. So keep in mind IT WILL GET BETTER.
My experience was vastly different than most. I had LAR with reconnect during the removal of my tumor. So I was connected back up from the get go.
Overall I was thankful with that, but I think to this day I'm still dealing with some inflammation of the bowels as a result of this approach. Of course I was relieved of the temporary ostomy etc..
My experience post surgery was somewhat similar to yours. It was very rough. Like 16-20 bowel movements each and every day. Constant fluctuation from hard to clusters to liquid. This continued on through chemotherapy, but improved slightly after removal of oxaliplatin from treatment and to this day continues to improve. I noticed a couple things really helped normalcy come with my bowel movements. Obviously healing from the chemotherapy, but I also noticed an increase of exercise - specifically biking helped eradicate the sense of urgency. It may be the muscles used in biking and position sustained while biking. But when I started biking again I still had a sense of urgrency from time to time while not biking. Within a month of biking it seemed that urgency was non-existent. I was a bit concerned about long bike trips without bathrooms at first, but interestingly enough I never felt any urgency to go while pedaling away. I really think this specific exercise helped me gain more normal bowel movements. I think timing and healing as well, but I don't think I'd be were I am now in terms of toilette habits had I not spent whats now over a thousand miles on the bike. So while it may be way too early for you to get into some serious biking, perhaps give a small ride a try or even if you have a stationary. Perhaps you'll find some increased function like I did. Today at 16 months out from surgery I am down to a pretty normal 2-4 times a day, which is in line with what I've always been. I do still experience a flare about once a month, but it's usually nowhere like the days of early on. I might have a 6-8 movement day twice a month, but even those seem to still be improving.
Also for cleaning, I installed a removable showerhead that I can just pull off and wash away. It was a very valuable thing to have during those frequent bowel movement days. It cleaned the area thoroughly as well as gave some sense of relief to the overused tissues. Also desitin worked well for me.
Mostly, just remember IT WILL GET BETTER!
Keep on keeping on.
3/29/17 diagnosed CRC - 44 y/o Male
4/17/17 ULAR - Straight anastomosis - no ostomy.
Path: low grade T3n1m0 - moderate diff.
KRAS - NO, MLH1/PMS2/MSH6/MSH2 - Normal.
5/3 med port install
5/22 folfox - first treatment.
3rd treat, delayed - low ANC - reduced to 90% OXI
zarxio all treatments
Treatment 7 reduced to 75% OXI
Treatment 8-12 - NO OXI, just Luke and 5FU
10/20/17 CT- NED
3/18 Scope - Clean
7/18 CT-Scan - Clear, but CEA 4.6
8/30 CEA 2.6