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My Husband’s Ulcerative Colitis and His New Quality of Life

Intro:

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.

Symptoms:

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.

Medications:

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




5 Responses to My Husband’s Ulcerative Colitis and His New Quality of Life

  1. Eileen June 5, 2015 at 2:39 pm #

    Thank you for sharing your husbands story. I am trying the SCD as my last resort. So far I have been doing ok. Been on it for two months strictly. I have had UC for 12 years and have had good days and bad days, but never have I been in remission. Been on prednisone all the years with colozal. Except I have been off all drugs for three months now. I hope the diet works….

    • Mary June 7, 2015 at 5:34 am #

      I wish you the best with the dietary changes. I know that, for some, it makes all the difference. Off drugs for 3 months is a very good sign!

  2. Rosanne
    Rosanne June 6, 2015 at 8:36 pm #

    So happy your husband is on the road to good health!
    It makes it sound like with the right attitude and doctors and support that an iliostomy can be the beginningof a new chapter! Good luck! Thanx for sharing!

  3. PeterNZ June 7, 2015 at 7:23 pm #

    Hi Mary,

    I been through the same thing and now have a J Pouch. Had it for about 6 months now. I have incontinence at night (mostly) that takes a bit of getting used to. I’d like to share with you my “toolkit” for dealing with arseburn. When you are reconnected you will get nappy rash. This is worse for me than any pain from any surgery but it can be helped. I wish someone had told me this before!

    I’d recommend the following to have on hand:

    * barrier cream – as mixture of castor oil and zinc ointment
    * dimethicone cream (or nappy rash cream for babies available at a pharmacy)

    Use these from the beginning and after every poop.

    Also have proctocedyl ointment and suppositories. I was dipping the suppositories in Manuka honey (google manuka honey as a topical medicine if you like).

    Next you will need to abandon using normal toilet paper. I use flushable moist wipes. They are still abrasive so a bidet would be ideal or rinse-off in the shower instead of wiping if it hurts too much. You can dry with a hair drier.

    Panty liners also work to contain any leakage at night. You still have to get up and address it but there is less mess.

    The area must be keep clean and dry 24/7.

    I also use Metamucil (psyllium husk) to thicken the poop. This is bulk forming. If your poop is too watery you can’t hold it in. I’d be lost without it to tell you the truth. I take the Metamucil with Enerlyte to keep hydrated.

    Bob’s your uncle.

  4. Mike from Ohio
    Mike H June 24, 2015 at 9:23 pm #

    Hello Mary,

    He made the right decision. I have had a J pouch for two years and my quality of life has improved greatly. It does take the body awhile to adjust to such a small j pouch but once mine did it has been great. Most of the time I forget I even have one. I never had one day of the so called dreaded butt burn, no issues with leaking at night and no pouchitis. Just adjust the diet and things will be ok. Please note that UCers that have suffered for years and are disease free with a Jpouch will tend to start over eating and gain alot of weight since the body can now eat whatever it wants with no ill affects, I did not fall into this trap but I certainly can say that it is possible because my appetitie has definitely grown.

    After his second surgery he will have what is called a loop ileostomy which I am sure he will not like as much as the regular ileostomy he has now. The loop is much harder to take care of so ask your surgeon to see if he can have it stick out at least an inch. many of them are flush with the skin once the swelling subsides which is difficult to manage. Also tell him that the recovery after the second surgery is a bitch compared to the first one but it does get better. The third surgery is a breeze. I was back to work two days after. Let me know if you have any questions. I was 44 when I got my pouch at the Cleveland Clinic and advice form fellow J pouchers helped me tremendously.

    Mike

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