Let’s see? Bowel perforation and GCA Flare ?

[Grammy80]

I’ve been absent for a while…Reader’s Digest Version to follow. Though I haven’t been posting, I’ve been reading for a bit, and as usual….” You raise me up,” and I’m grateful.

You may recall I had shoulder replacement surgery in July, and my arm is in amazing condition considering the interruptions in my physio. I had two weeks of treatment in September and then none until last week, but I have great flexibility. I’m quite satisfied with it.

In September, diverticulitis progressed to a bowel perforation. They stopped all my immunosuppressant meds and a few others while I got a few ‘gallons’ of antibiotics IV to clear the abdominal infection. Since I was still on antibiotics for three weeks after discharge…no Actemra for me! At that time, I continued the 1 mg; in retrospect, I probably should have taken more...but~

Not surprisingly, I guess, my head got quite messed up in late October, and I thought maybe I’d had a slight stroke, confusion, and a vicious headache. After 49 months and getting to 1 mg of prednisone, my neurologist and rheumatologist admitted me to the hospital for pulse treatment of 500mg of methylprednisolone for three days, and I was discharged on 60 mg of pred tablets, which I am still taking. I’ll see my rheumy on Friday and see where we go. A neuro-opthalmologist examined my eye, and though my optic nerve of the right eye is pale ‘with a few white spots’; he doesn’t feel I’ve suffered any serious damage. My vision in that eye is blurry….but hopefully, it is all the pred.

Good news…NO stroke! My ophthalmologist said a prescription lens would improve my right eye, but I’ve chosen to wait before buying until I see where the pred goes.

My husband’s dementia is picking up speed, and I do think all these events overwhelmed him and scared him. I’ve been talking to myself and feel I have a plan for the moment and don’t need to borrow from the future.

That is about as short as I could get it…and I'm so happy to be back.💞💞💞

[Merryfield]

Grammy—may you find some mental stress relievers! I read a whole series of Brother Cadfael books, which took me back to the English 1100s—a real mental escape!

[Grammy80 in reply to Merryfield]

Thanks...I checked and I can watch it on Amazon Prime.....in a few weeks💞

[Merryfield in reply to Grammy80]

the tv series stars derek jacobi

[Hunter134]

So sorry for all you are going through.You're a very strong lady and things should get better.Hugs❤️

[Hidden]

Hello dear Grammy80!Sending hugs and very best wishes to you 💐

What a very difficult time you are both going through.

x

[SheffieldJane]

Hello Grammy! Welcome back to the club that loves you. What a bl***y lot you have been through! Keep alert one thing my super optician looks for is a pale optic nerve meaning possible GCA trouble. So sorry that you are both battling your husband’s dementia. I have been there with my mum for 7 years until she died. She had it for about 15 years. I took her when it was clear she could no longer be safe in her own home. As you may know.. How will they treat the bowel perforation?

This relentless disease! 💞💕💞💞💞 Safe hands now!

[Grammy80 in reply to SheffieldJane]

I was an inpatient for ten days , No food lots of antibiotics and then step-by-step healing and getting my intake and output working! After a few days, they did talk to me about a colostomy. But I dodged that bullet. So far so good!💕

[darkred in reply to Grammy80]

It's hard to fathom all you have been through, way more than the average senior. I'm impressed that you came through your shoulder surgery as well as you did. What bravery! Ten days in a hospital (diverticulitis) must have been challenging, to say the least. How scary to have the colostomy mentioned, and yes, you certainly did dodge a bullet.

I was surprised to learn I had diverticulitis with abscesses in early October, this year. Glad I got treatment early (in the hospital) and avoided surgery. Since prednisone predisposes us to infections, I believe my PMR, requiring Pred, was a factor. I've no appetite for months but eat enough to stay alive, with bran and berries a major part of my diet. Fiber, fiber, fiber. Fiber requires a high water intake!!! Your diet may be different from mine; in the hospital, I was on a liquid diet, later progressed to soft.

I do miss my OH! Alzheimer's took him in the end. I took care of him in my home until he died, but at the time, I did not have the health challenges you have. I hope you are getting some outside help, as you surely need it with all you and your OH are going through.

[Grammy80 in reply to darkred]

You can relate, for sure. I had no food, liquid, then soft but I'm now back to normal. Initially, they said nothing with skin and veggies well-cooked. I'm a lover of food, so, I'm happy with where I am. My first attack was 22 years ago, one in the middle and this year.--no nuts, popcorn, seeds, etc.

It was a bowel perforation and my rheumatologist felt the four+ years of high-dose steroids plus Actemra certainly contributed to the situation. I do have a woman come in for four hours twice a week. It really makes a big difference because it allows me to choose where to use my energy, and she'll go shopping with OH too.

Three cheers for the arm, I'm back at therapy only for additional strength...I can do anything but lift a gallon of milk. 💞

[darkred in reply to Grammy80]

Grammy80, you are a strong woman and are getting stronger. It seems just a short time ago, you spoke of your shoulder surgery and here you are, doing some great lifting. The double whammy of the shoulder recovery, followed by bowel surgery!

It's good you are blessed with loving food. No one has warned me about having vegetable skin, nuts, or seeds, but I've stayed away from them. Popcorn seems like a definite no-no. My gastroenterologist simply stressed fiber, bran specifically. Along with plenty of water, it keeps things moving, so that one doesn't have to strain. Reading online, I note the recommendations and things to avoid are varied. Who to believe?

I'm glad you do have some help, if only for short periods. Yes! Three cheers for the arm!

[Grammy80 in reply to darkred]

The internet can be confusing ! Once your system has settled down, skin and raw veggies are fine. However, nuts and seeds...no. Check diverticula on the internet-- you don't want little nuts, seeds etc. that can cause inflammation.💞

[Bcol]

Hi Grammy, good to hear from you, we have missed your dulcet tones. So sorry though to read of your latest problems, 1mg back to 60mg is, to say the least a bit of a "drag" (being very polite there!!). Not really surprising your head got a tad "messed" up. Hopefully it sounds as if things are getting under control again and that you have a plan for going forward. Couple all that with looking after hubby with dementia and you have a lot to contend with. Love the Cadfael books by the way and well worth watching the TV series or possibly better listen to the audio books. Lots of hugs and best wishes to you and hubby. 🫂🤗

[123-go]

Dear Grammy, I’m so sorry for all you’ve had and are having to bear. If anything will get you through it’s your humour and courage although I suspect you may feel like having a scream at times (nothing wrong with that). I’m sure your doctors are secretly a little in love with you 🥰!

[Millah]

Hi, you have been through so much. So very sorry for all you have been through. Very glad to read you didn't have a stroke. I have been in the field of nursing and taken care of patients w dementia. It can be very scary at times for them, as well as family members who care for them. He is lucky to have you in his life. I am glad you are doing better overall w your health issues and your right eye is ok. You have been through a lot. ✌

[DorsetLady PMRGCAuk volunteer]

Oh blimey what a time you’ve been through - again. Good job you’re made of stern stuff… hope things soon improve, particularly eye. Difficult times again for both of you…

All my very best, and lovely to see you back.. and Christmas cactus. 🌸

[Kendrew]

How lovely to see you back on the forum again Grammy...but not so lovely to hear of all you've been dealing with!Let's hope everything is beginning to get back on track again and that you're now receiving all the appropriate help and treatment for the best possible outcome. Sending you much love. ❤

[Sharitone]

Lovely to have you back, Grammy: we've missed you. So gracious of you to keep smiling😀

[Pixix]

What a rotten time for you. Hope this is the start of improvement! I’m sending hugs, S x

[Missus835]

Lovely photo Grammy. I'm so sorry to hear all you're going through. You're resilient and strong and I know you've got this. Glad you're back! Positive vibes only ~ Deb x

[Grammy80 in reply to Missus835]

💞 Seeing the word strong, made me smile. Sometimes I'm as weak as can be and scared. Usually, I have to spend some time by myself and sort of think; pro? con? control? nope! So how am I going to handle this....whatever 'this' may be? I might pray and cry...but usually come out the other side with a plan. I laughed because when I saw the neuro-opthalmologist and he examined my eye....I said..."I'm tough you know, I'm strong!"...he stepped back and said, "Believe me, I know!" I convinced myself.💪🏼

[montebello]

Grammy, it's always so good to hear from you in spite of all that you are going through. I've said it before and I'll say it again -- you are QUITE an inspiration. Know that you're in my thoughts and prayers dear lady.

[Grammy80 in reply to montebello]

💞It all helps. I went to my rheumatologist today and he only cut my pred from 60 to 20 mg per day, along with my Actemra. He is right...and I'm glad he is cautious at this point. My body is fighting a chest cold as well. He prescribed an antibiotic and told me to continue my injections. Usually, he does not prescribe that. I'll see him next week.

It feels so good to be 'back in the groove' here; you are all so important to me. Hey! Hey! I got accepted to participate in a GCA study here in the States and looking forward to it.

[Grammy80 in reply to montebello]

PMRpro reached out and it was PMR2011 who posted it....I'm pasting it because I have difficulty finding specific posts, so here you go......

Pillar Patient Advocates is seeking 25 adults whose GCA is currently moderate or severe to participate in a 5 day online board. Participants will be asked to log in 30 minutes per day to respond to different prompts. In appreciation, participants are paid $300 for their time and input. If interested, please complete our short registration at research.net/r/ZM5GPPN or email Erin at [e-mail] with a phone number you can be reached at. This study is for US residents only.

💞

[montebello]

Can you say more about the GCA study? I'm in the states too.

[Grammy80 in reply to montebello]

Sure!! When I got on the forum last night I saw a post from PMRpro regarding a study in the US for GCA patients. I telephoned and left my contact info and they called today. They asked a few questions and then told me I would be accepted. They would require my spending 30 minutes a day on a 'bulletin board' on my computer; at any time of day.

I couldn't find the post today...send Pro a private message and she will give you the link, I'm sure. As a bonus...you earn $300, they say. Good luck.💞

[montebello in reply to Grammy80]

Thanks!

[PMRpro Ambassador in reply to montebello]

See below

[PMRpro Ambassador in reply to Grammy80]

Wasn't me - it was PMR2011 ...

healthunlocked.com/pmrgcauk...

[montebello in reply to Grammy80]

Thanks Grammy. Yes, I found the link