Mary (Registered Nurse). Husband has had Ulcerative Colitis since age 30 (x 25 years). Want to share another positive story about someone who has had the surgery and feel it is a success story for their quality of life.
Some more background:
We live in the Upper Peninsula of Michigan (Northern Michigan). Like the small town setting and enjoy anything outdoors! We are very much into preventive, holistic, and natural diet and health remedies.
My husband has UC. He just had his colon removed (total colectomy) on April 10, 2015.
My Husband’s Colitis:
I am short for time, but just rec’d Rachel from Ohio’s story via email and I just HAVE to reply/respond.
I hope this is the proper method for replying. My husband has had UC for 25 years. He has a history of very long remissions, but very bad flares.
He has had remissions for 5-7 yrs at a time WITHOUT any maintenance meds.
He/we never liked the Azulfidine and similar (Mesalamine etc.) meds because he would get bad headaches etc. and with his long remissions–they didn’t seem like they were worth it for him. Believe remissions were aided by probiotics (yes, there is one that we found superior to others but not sure if allowed to share the name or not).
In recent years we added Vitamin D3 to his regimen after reading that adequate levels seem to relate to reduced flares of IBD (Inflammatory Bowel Disease). Unfortunately, my husband started with a flare this past fall (2014) and ended up in our local E.D. on 12/17/14. Given IV Medr ol and Rx for 60mg Prednisone. He responded beautifully. They scoped him on 1/20/15 (I HATE when they do that before you are completely out of the flare) and colon looked “remarkably” good with just a few small ulcers in sigmoid.
Then they pushed the Apriso and Canasa meds. He weaned down to 10mg of Prednisone and flared badly again. 3 trips to E.D. between 2/22/15 & 3/25/15. Got him connected with another G.I. (2 hrs away)… admitted to hospital w/trial of Remicade. Nothing worked. He lost 30 lbs in 6 wks. Took him to Froedtert hospital in Milwaukee. He had a total colectomy on 4/10/15 and we are both VERY happy. He has 2 more surgeries to be planned within the next 10 months. We (both) are confident that it was the right thing (and right time) to have this done vs. trialing any more biologic therapies.
Husband (Dan) was not on any of the maintenance medications for very long. He used to get headaches from Azulfidine, Asacol, etc. He had very long remissions (5-7 years at a time) without the meds. There is one probiotic that he always found helpful to pull him out if he thought a flare was coming on (Threelac Probiotic) and we have always had that in the house (and consume regularly) for the past 12 years or so.
Dan quit smoking 3 times in the past 20 years and each time produced a flare. The flares scared him into smoking again and I never blamed him for that. As I had previously mentioned, Dan had a flare this past December that responded well, initially, to steroids. We are not sure what happened, but do question a link between scoping his colon when he was still on treatment (although doing well) and the maintenance meds–which have never worked impressively for Dan (I do understand that different meds work better for some people than others).
We’ve never been fond of the idea of Biologics (who is, right?), but we trialed the Remicade and not only did it NOT do anything–but insurance was expecting us to pay $12,000 per infusion if we continued on it. Dan was so sick of being sick… he told me he was worried about future flares and the side effects of the meds as he is getting older. He said he wanted his colon out and I supported his decision 100%. He has had an ileostomy since 4/10/15. He was so ill that he had to be on IV nutrition (TPN) via a PICC (peripherally inserted central catheter) line for days prior. I found him this colorectal surgeon 4 hours away from where we live online. Turns out this surgeon at Froedtert (Milwaukee) is #6 in the world. What a guy! Dan has adjusted to the temporary ileostomy very well. The surgeon told him that if he is not happy after the next 2 surgeries to complete the J-pouch process then he can convert back to the ileostomy. Froedtert hospital told us that the avg . age for an ileostomy is between 25 & 35 (Dan is 55!). This is a large medical center and they have a few surgeons and surgical nurses who have ileostomies themselves (I guess they prefer to keep due to hours standing in operating room for their careers). Dan was SO SICK that we did not question what needed to be done. I wanted to share his story because he became sick in December 2014 (a “flare”) and ended up with his colon out in early April 2015. Sometimes things can spiral fast. Despite the short amt. of time to consider it–we knew that the surgery was what we wanted at Dan’s age. He had been a very lucky UC sufferer (the long remissions) for many years, but the flares were BAD when he did have them and he (we) didn’t want that in his (our) future. The ileostomy has been easy to adjust to, but I am a nurse and was very comfortable with it from the start which might have helped. He is so happy to be able to EAT again and enjoy a cup of coff ee! He is weaning off of the Prednisone still (very slowly… by 5mg every 2 wks–currently at 20mg). He is back on a multivitamin, Vit D3, and probiotic (threelac) for good health. I read Rachel’s IBD story and although I am very short for time I just knew I had to tell Dan’s story for her and others.
written by Mary
submitted in the colitis venting area