Failing Stelara, Opting for Ileostomy

So I had to cancel my surgery.

My husband had a heart attack (38 yrs old) and has been on life support in the ICU since Wednesday. He is getting better and they took him off the ventillator and he is sort of conscious (heavily sedated).

I upped my pred to 30mg and I'm just dealing with it.

Plucky - I'm so sorry about that :/

38 is really young to have a heart attack - I hope they can find the cause and prevent it from happening again. Not much consolation right now, I know, but at least your husband survived it. An ex friend of mine had a heart attack in the summer and didn't make it. I wish I'd had the chance to make amends with him before he died.

Best of luck to you both.

clo2014 said...
Plucky,

Oh my gosh.....I am so very sorry. I am praying for you, your husband and your family during this time.

You have done your research so you know that you will be ok in a holding pattern. This will also give you time to ensure the surgery is what is required. You will also be able to be there for your husband.

My spouse had heart surgery last November. Plano Texas heart hospital is one of the best.... Dr. Shapira...I think that is the right spelling. I know it ends with an "a" and not an "o" as his office corrected me a couple of times.....he specializes in AFIB...and I can't remember the other doctors names......they were all good.... I know you probably don't live in the Dallas/Ft. Worth area...but maybe the info will come in handy... They can do so much to help....so take a deep breath and try not to worry your self into a flare....

Hang in there and remember to ask others for help when you need it. Hopefully his family is there and they can be there and help both of you.

I have learned that when a door closes there is usually another window or door available--so don't get discouraged. Hang in there my friend...

Sending lots of healing thoughts to you and your family. (((HUGS!!!!)))

Clo

Clo--
Thank you...
He's at OLOL in Baton Rouge and I feel they are giving him exceptional care (and as a chronically ill patient whose been to hospitals across the country I do not give false praise).

He's awake! His long term memory is quite good! But his short term is very poor and he is still very hazy and out of it. Its so hard to see him this way. And the toddler is very upset because he's gone and she knows he "has a boo boo on his heart" and poor sweet baby is worried and I havent seen her much (usually we are together 24/7) and it's just... Hard.

Plucky,

My niece was in BR and she said that hospital does have really good ratings for care...so rest as easy as you can knowing they are doing everything they can for him. He is now awake...so you all can slowly start moving forward.

Just a thought....you might want to let the nurses there know you have Crohns. When I did...they were very accommodating on seeing that I had crackers or 7-up if I needed it... Or using their fridge for my snacks from.home....

The short term memory....it may take a little while to kick back in. He will probably be frustrated. They will work with him on that. It is difficult for the caregiver (you) during this time and even later on. There will probably be days when you know you said or did something and he will not remember.. And then you will get confused... Hang in there...it does get better!! I run around looking like big bird sometimes...I have notes to remind me to remind him....lol... The meds he is on can also make him forgetful...hazy and just out of it. Once they lower the dosage or leave some of them off...he may be able to focus more. We also played classical music....Mozart, Hendley, Bach...its supposed to stimulate learning and memory. Beethoven for lower blood pressure.

Heart attacks are such scary things. They impact not only health....they impact everyone and everything. Even the things you never thought about before...Now...with my spouse...I find that I can't fight with him like I used to. Let his face get red, or have him take a deep breath or touch his chest...and suddenly it isn't as important as just being with him. 36 years and I still just want to be with him.... Of course sometimes I really miss waving my arms in the air and screeching like a banshee...but we both have given up things we really miss. He misses caffeine and I sometimes miss acting like a fool.... Lol..

Toddlers are so loving and honest. It probably is hard on both of you...all.of you actually....to be apart. Try to consider this an opportunity to learn new ways of doing things and keeping in touch. My daughter has one of those apps that show your face when you talk....maybe...if you can....you can use that so your toddler feels connected. You will need to explain the hospital will not allow little people in to see the people with boo boos so this is the best way to do it. It will be a scheduling challenge for you. I don't know who cried harder when my daughter did it...her, her kids or the person at home with her kids. After a few tries...and doing it multiple times a day it got easier and better. (She used an old phone and used some Trac phone service for the baby phone part...just a thought) and if not just calling lots seemed to help. Her toddler told her not to hang up. Put it on speaker so he could hear her breath. It broke my heart and made me laugh at the same time....and that was how they went to sleep...with the speaker on and they could all hear one another.

You all are in my thoughts and prayers!

Clo

UPDATE:

Thank you all for thoughts and prayers.

My husband is miraculously out of ICU and his memory is coming back--he sounded like himself yesterday! It is truly a miracle.

They did a cardiac catheter on him Monday and found no blockages. He hasan enlarged heart/cardiomyopathy but nothing to explain his arrythmia (v-tach to v-fib) and collapse. His blood work looks good--cholesterol is good, etc. He is very large at 6'6" and 430 lbs but very active--even with risk factors nothing explains his sudden cardiac arrest at age 38...

Except...

It appears to be genetic.

His (slightly) older brother followed the exact same script and is still alive today because of the defibrillator implanted on his heart about 10 years ago.

I do plan to change husband's lifestyle including regular meal (he often skips meals) with proper macronutrients and calories (he doesnt eat half the calories he should and that slows the metabolism and makes weight loss difficult or impossible). He must cut down hours at work and take care to find healthy ways of managing stress.

It's a miracle he's alive. The cardiologist said "if you had 9 lives then you just used up 8 of them".

For me, I found a way to have the surgery this Tuesday Oct. 17th. I need off the pred and relief from symptoms.

However...

Yesterday I felt poorly. Tired. Colon hurting. Hard time making it to the toilet.

Then...

I got the chills and spiked a fever of 102.3 °

I called on-call GI and asked about c.diff and if I had to go to the ER last night--I didnt feel up to it. He said I could wait. I had hoped that fever would be gone this morning but it's still 100.2° so I suppose I'll havevto go get tested for c.diff in the ER today.

Freaking life and it's curve balls...

Plucky,

I was so very glad to see that you checked in. I was preparing to drive from Dallas to BR , go to the hospital and start running down the hall screaming Plucky! Are you laughing yet?

On the Defibrillator....my cousin had the very same thing happen....and it was ruled genetic too. This happened in 1970?....very long time ago. She was always tired as a child and they could never figure out what was wrong with her. Then she just went down one day...but she regained her memory.... So no worries.

They have made such improvements! When my spouse was in the hospital they did a defib as an outpatient. I think the gentleman was there for a total of 36 hours. He was in the room next to my husband. He did really well. If you go that route please research how many that specific doctor has completed yearly. Hmmmm..I wonder how they classify that as outpatient......

On your surgery.....if needed go to ER. Your GI will test you for everything prior to surgery. Well...mine did so I am assuming. Maybe someone else has experienced something different. Please try to get some family to help you prepare and to help you afterwards. My surgery was September 11 2016 and my spouse had heart surgery November 8th. What a challenge. Two old farts shuffling around trying to help one another...

I too appreciate you so much. If you are ever in the Dallas area you should let me know. We can meet for a drink....tea....coffee...soda...water...lol..

I often think that if all of us lived close to one another we could help each other so much. We could solve the worlds problems...lol...

You hang in there!

(((HUGS)))

Clo

I am so happy things are working out. I wish your husband an easy procedure today. It's going to be tough having surgery and being away from your toddler, but in the bigger picture, the surgery will give you the ability to be healthier, happier, and able to do more with your family. The long-term is likely to give you your life back, free you of drugs and doctor appointments. Of course you still have to do routine appointments, but it's so much less restrictive. You can go wherever, whenever.

clo2014 said...
Plucky,

Checking in to see how you all are doing. I know that surgery is quickly approaching and your husband had his procedure. I hope and pray everything went well for him and that everything goes well for you.

I know you have so much on your plate. Hang in there....it does get better.

Clo

Thanks Clo!
Yes, husband had his defibrillator implanted on Thursday and came home from the hospital on Friday! Unbelieveable--it's an absolute miracle. He's resting and slowly getting better but his short term memory is still not what it was--I'm told this should improve in coming weeks.

I've been SO BUSY! My sister left in a cloud of smoke on Wednesday (I love her and am grateful she came to help but good riddance) and I had no help until my aunt & uncle arrived Saturday evening.
My toddler and husband adore aunt & uncle so they should all get along fine in my absence.
I'm up and down all night due to toileting & trying to get toddler to sleep in her own bed. I'm beyond exhausted after these last couple of weeks and I can hardly wait to be in the hospital so I can sleep (I can sleep through really any noise but will take ear plugs/headphones).
I just need to be cleared by my PCP for surgery today. Then barring further catastrophe, I'll have surgery on Tuesday! It's a bit scary, but I am so hopeful for a good outcome--your thoughts and prayers are appreciated. Hugs Clo!

Guys!
My surgery is tomorrow afternoon! I'm kind of freaking out with excitement and nerves! I'm also kind of hating the bowel prep (miralax + gatorade) but it's not nearly as bad as Golytely--I thought I might die from that prep.

Things I learned today--I'm more anemic, hemoglobin is 9.1 and that sucks. And I've lost 12 pounds in 2 weeks (but it's ok because I'm a bit heavy to begin with thanks to prednisone and not being able to workout). Despite these things I still feel strong. I'm packed. Will shower in the morning. Now I've just got to finish this bowel prep...

Plucky,

Thinking of you and hoping everything went well today.

Sending healing thoughts your way.

Clo

Guys!

I DID IT! I'm an ostomate! Surgery went very well, was laproscopic with a bikini incision in lieu of the midline incision, and only took 2 hours vs. the usual 3-4 hours. Surgeon said my colon was on of the worst he's seen, like in the top 20% of the worst cases, so that is very validating. And I saw the diseased portion next to the healthy portion and the diseased portion looked like chopped liver. Gross, eh?

I'm healing beautifully as far as I can tell. I went without any pain meds for 12 hours today and was up and walking around! I ate solid foods (low residue) for every meal today and that feels like a bit much, but I was starving after 3 days (really 3 weeks) of mostly liquids. I will eat less and eat smaller meals. But my stoma is working great! It's cute--perfectly round, on the smaller side, not flush but doesn't stick out too much. I tried the sensura mio one piece with the filter today and I don't like it. I liked my first one piece bag w/o the filter better, but I believe I will ask my ostomy nurse to help me try a 2 piece system tomorrow--hoping my skin doesn't break down from frequent changing but I detest this bag--debri gets caught on my stoma and the filter and I have to rinse the bag each time I empty and it makes a freaking mess. Ostomy nurse says I probably don't wantbto try a 2 piece yet but I really think I do. Talked to Coloplast and Hollister reps for samples so far and hoping ostomy nurse spoke with Convatek as well.

I do feel much better with the colon gone! It's incredible not to have to jump and run to the toilet. And I have more energy (also owing to corticosteroids).

Gotta go, shower time! XO

Hi Plucky, I m sorry I’m late to this post And I’m so proud of you!!!!! Are you in any pain??? You are tougher than me!

I have failed Stelara too, so now im going on xeljanz.. I’m waiting my insurance to approve, right now im in terrible pain and so much blood, so I started steroids today both oral and rectal. Nothing has helped, but I will keep trying, I’m in the same boat as you and again, I’m sorry for this late response I’m usually on the UC board. Hugs to you!!! Oh yes and you’re husband, my my my, I will truly , for your whole family, pray for strength and healing!!!!!