Checking In

Cannon · 12-08-2013, 07:06 PM

I wanted to say 'hi' to everyone (old and new). I hate to come back every few months and see more of our sisters gone. I do, however, like to be able to come back and say that I remain NED, and hope that provides hope to others.

I am 7 years out from my surgery date with NED, so that's excellent, but every few months I have something else serious raise its ugly head. I turned 50 this summer, and realized I have been seriously sick for 10 years with one thing and another.

After acute pancreatitis in January, and debilitating fatigue since, my new GI suggested treating my Crohn's more aggressivley, so I have begun Humira. (I had been reluctant because there is very small chance of lymphoma - oy). I am still tired but not unbearably fatigued, so I'm calling that a good thing.

Winter is never a good time for me emotionally, so I've been happy about the relatively dry and mild fall in NJ (near NYC), and fingers crossed for more of the same.

My aunt (a young 67) who had stage 1 in 2006, when I had stage 3, has recurred with stage 4, mets in liver, lungs and bones. She is not HER+, so she's on taxol and avastin, which has stabilized her. She was hoping her mets would shrink (and disappear) but apparently that is not reasonable at this stage.

Wishing you all love and light for the winter days (Northern Hemisphere), and for spring to come quickly!

Paty · 12-09-2013, 09:23 PM

Dear Cannon,

Great to hear from you again. It had been sometime since I last saw your picture. Thanks for the update. i am glad you are doing ok regarding BC and I do wish very badly that you do not have many Chrons's symptoms. I also turned 50 this year (January), and I have also been NED since I was diagnosed 7 years ago. I have recently being diagnosed with colitis and believe me, my symptomps have given me amlot of bad moments and sometimes they have also stopped me from doing what I like, like travelling. I am taking medication, but symptoms does not seem to go away as, I believe, they should. Anyways, I can't complain, after all,I am very thankful that I have had a chance to life so happily all this time. I am very sorry to hear about your aunt, I think there is hope to keep things stabilized and have a good quality of life. Nowadays there are so many treatments out there. Keep us updated and do not go away that long. God bless you. Hugs to you.

Aussie Girl · 12-09-2013, 11:01 PM

Dear Cannon,

I'm a relative newcomer on this site. I'm sorry to hear about your Crohn's disease and pancreatitis is a nasty thing too. I know a few people who have had it. It must be hard to maintain your nutrition with that combination.

I'm hoping the Humira does the trick. It is used here in Australia too for Crohn's, often with good results.

Best wishes to you and your Aunt

Aussie Girl

Cannon · 12-10-2013, 08:11 AM

Thanks Paty & Aussie Girl for the good wishes.

The Humira is definitely helping with the Crohn's, but as my GI said, the longer you've been sick, and the sicker you've been, the longer it takes to heal. So I am trying to think of myself as in a long slow recovery from all the bits & pieces. The big change has been in absorption - my hemaglobin, which has been a struggle to keep above 10, is now 12.6! Haven't had that since I started menstruating!

I also found out last week that my cardiomyopathy, which had been severe (15 ejection fraction) and returned to near normal (50 in May) is back down to 35. WTF? I didn't know it could go down again. But as I always like to say, at least I am here to have these problems.

Paty, is your colitis considered IBS or ulcerative colitis? Either way, you should be feeling better, keep pushing. Have you considered going gluten-free? My GI recommends it for IBS, even if no celiac disease present.

Best to you all,