- Joined
- Dec 9, 2014
- Messages
- 2
Hi- a little brief history. Female, Colon Cancer in 2000. Surgery-right colectomy, chemotherapy. 2004 genetic testing revealed Lynch/HNPCC-MLH1. 2010 complications with reconnect from 2000. Surgery to repair blockage/stricture. 2014 still having issues and had another surgery- this time had a complete colectomy with IRA- ileorectal anastomosis. It has been difficult. I have an ulcer at the reconnect- complete circle around incision. Blood loss- iron infusioins BUT I had to have iron infusions in 2011 as well with an unknown cause AFTER the 2010 reconnect. I've had a small capsule scope to look for bleeding- that's when the ulcer was found- BUT there were also little spots through out my small intestine that looked like ulcers- but not obvious Crohns but something like Crohns. My surgeon went back in and to look at the ulcer and did biopsies of the incision only- and said it ws friable something another but no cauterized or anything. My oncologist had said cauterized might cause other problem because its a blood flow issue at the reconnect. My GI doctor and oncologist says we need to find/fix the problem to avoid the blood loss issues and iron infusions. My GI went in as she wasn't for sure my issues are just the reconnect- I have "flare" ups- it not every day and there is no rhyme or reason to when I hurt. I cramp and will have sudden sharp pains- so she went in and cauterized the ulcer at the reconnect as it was bleeding- as soon as she inserts the scope and free bleeds. She did biopsy another area of erosions and shallow ulcerations in the distal ileum. I haven't spoke with her yet but the nurse called to say it wasn't cancer but was ulcers and the doctor would have to get with me.
I have more rectal pain lately, the other pain is at my reconnect area where your bladder is at. I'm always fatigue. Another issue I've had that I've spoke to my GP about is joint pain. I would wake up with pains in my joints- and it comes and goes too. He actually took me off my cholesterol medication that I've been on for years to see if it would help with the fatigue and joint pains- I didn't. Week before Thanksgiving I get this got awful rash behinds my ear- similar to psoriasis it flaired up behind both ears and itched and burned and then a couple of days it gradually cleared up on its on leaving a dry flaky area. Now I have an upper respiratory infection and got a shot of steroid today and I must say I feel better right now than I have in some time.
Sorry I know I said short- but that really is the short version. I did have lab work today too and hopefully will get that back tomorrow. my oncologist is following my iron/ferriten and iron saturation- binding capacity- says my iron isn't binding due to my iron deficient anemia related to my blood loss- all sounds crazy - I don't know how all that blood stuff works.
Anyway I've been cancer free for almost 15 years! If I could just get past all this living with Lynch and what ever the heck the aftermath I've got?
Thanks in advance.
I have more rectal pain lately, the other pain is at my reconnect area where your bladder is at. I'm always fatigue. Another issue I've had that I've spoke to my GP about is joint pain. I would wake up with pains in my joints- and it comes and goes too. He actually took me off my cholesterol medication that I've been on for years to see if it would help with the fatigue and joint pains- I didn't. Week before Thanksgiving I get this got awful rash behinds my ear- similar to psoriasis it flaired up behind both ears and itched and burned and then a couple of days it gradually cleared up on its on leaving a dry flaky area. Now I have an upper respiratory infection and got a shot of steroid today and I must say I feel better right now than I have in some time.
Sorry I know I said short- but that really is the short version. I did have lab work today too and hopefully will get that back tomorrow. my oncologist is following my iron/ferriten and iron saturation- binding capacity- says my iron isn't binding due to my iron deficient anemia related to my blood loss- all sounds crazy - I don't know how all that blood stuff works.
Anyway I've been cancer free for almost 15 years! If I could just get past all this living with Lynch and what ever the heck the aftermath I've got?
Thanks in advance.
