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Carol, did you have prunes? I took one zofran yesterday morning and I haven't been to the bathroom since.

I'm thankful that I didn't injure myself this morning. I slipped and fell down the last couple basement stairs as I was going downstairs. Slightly twisted my ankle but I think it's okay. I'm thankful that I don't work weekends and can rest and crochet today.
 
Cat-a-Tonic said:
Carol, did you have prunes? I took one zofran yesterday morning and I haven't been to the bathroom since.

I'm thankful that I didn't injure myself this morning. I slipped and fell down the last couple basement stairs as I was going downstairs. Slightly twisted my ankle but I think it's okay. I'm thankful that I don't work weekends and can rest and crochet today.
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I did,and boy did they work......:rof::rof::rof:
 
I'm going to be busy today, something is leaking on the water heater. I like being busy.
Right now I am thankful to have a project to do. I needed one.
 
I can have plums as long as I remove the skin. They don't upset my system as long as I take the skins off.

So I tapered my pred yesterday, only a teeny bit - went from 8 mg to 7.5. And I feel pretty good today! Like, suspiciously good. My guts have been quiet, no pain, no cramping, no discomfort, no nausea, no feeling unwell. I don't trust it! :p And I know you guys will be able to relate to that. Are you guys able to just enjoy it when you have a good guts day, or are you always suspicious about what your guts are up to?
 
Mission accomplished!

I actually am a pretty good plumber! I had dad helping me, he was the gopher, (go for this tool go for that tool). Dad is great at doing income taxes but is a lousy plumber. I have fun fixing things. This water heater was like It had Crohn's disease. I had to take apart several segments that were 90% obstructed and solder in new parts. I felt like it was a water heater surgery. LOL
 
CMACK, (sorry Doug), Doug is great at doing income taxes, and lousy at plumbing.:ytongue:

Also have to comment on doctors. People who have had a lot of med problems tend to have fears and phobias and/or dislikes of doctors. Anyone who has known me long knows that has a been HUGE problem for me, but it has calmed down some since they discovered, slowly, that I'm not (just :lol2:)a nut case and that I do have very real (and significant) med problems. I get taken a lot more seriously now, partly because my problems are much better documented, and I suspect a small part because they don't want to be sued (some of my problems were exacerbated because of not believing me, and a couple of things that were ignored I could have died from at the time.) But still, myself, I'm always afraid I won't communicate correctly or be listened to, or worse, that things are going to get worse medically. Bottom line, nobody wants all the things that doctors are associated with. (Not feeling well.)

Oh, Cat, thanks for reminding me that pred does numbers on the skin. I have been having problems lately, and that just explained it. Thankfully, yesterday was my last day of pred. (40 mg for one week only.) I still have a cough that is pretty significant, but found out at the doc's office that the cholesterol med I was taking can cause some dry cough. He switched that med, hope it helps. Between that and a couple other things, I have to go back in a month.

Today I'm thankful it hasn't stormed (yet) doc I can take Allie for a walk.

Trysha, I love your poetry. Kirsty, I hope you get more energy. My biggest complaint often, I understand. (I know Trev does too.)
Gotta go walk the dog, the storm is almost here.
:ghug:
 
CMack...I hope you are practising infection control before touching your vital household necessities......
Carol I think it's called the Crohnie Foxtrot that you are practising...don't indulge the prunes too often too often....
GI Jane.....Hi......prunes are a type of plum also....but there are are plums which do not have the same laxative effect...you still have to be careful not to overindulge though.
I really like the huge black plums as big as 🍎 apples..
Hope you are feeling better Sandy, Kirstie and Ron....
Winning...
 
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I fled Him down the nights and down the days
I fled Him down the arches of the years
I fled Him down the labyrinthine ways
Of my own mind and in the midst of tears.
I hid from Him and under running laughter
Up vistaed hopes I sped and shot precipitated adown titanic glooms and chasmed fears from those strong Feet that followed..followed after....
But with unhurrying chase and unperturbed pace
Deliberate speed majestic instancy
They beat...and a voice beat more instant than the Feet
All things betray thee ,who betrayest Me.

Francis Thompson.. The Hound of Heaven ( 1893)

In modern times Francis may be perceived as a street person addicted to heroin
He was a handsome well educated individual... poetic and ascetic.
He was rescued from the street and cared for by a married couple who tended him through his tuberculosis to which he finally succumbed.
This is a very long beautiful poem telling how a soul evaded God but was drawn in by Him eventually...because God never lets go of His loved ones.
Thought you might like something totally different.......
 
Hi peeps. How's everyone today? We got a massage today at a local spa and have been in heaven since [emoji14] got it for our anniversary 4 months back, but just got the time to go. Hope you're having a great weekend
 
Cat-a-Tonic said:
I can have plums as long as I remove the skin. They don't upset my system as long as I take the skins off.

So I tapered my pred yesterday, only a teeny bit - went from 8 mg to 7.5. And I feel pretty good today! Like, suspiciously good. My guts have been quiet, no pain, no cramping, no discomfort, no nausea, no feeling unwell. I don't trust it! :p And I know you guys will be able to relate to that. Are you guys able to just enjoy it when you have a good guts day, or are you always suspicious about what your guts are up to?
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I'm so with you didn't feel too bad yesterday....today I made a big mistake of having a little Baileys and not the cramping wont stop...sigh....it's like oh yea no runs today....or great does that mean on compacted....nothing even with my shot of Bailey which always gave me runs....sigh...too much thinking.
 
I hope you enjoy the nature around your cabin. I wish I was way out in the bush, I love the wild places so much.

Hope the liquor kills some bad things inside you too, besides just hurting you,

cmack
 
Thanks for the poem Trysha, I liked it.

I've just had my hair done. I'm so lucky my hairdresser comes to my house to do my hair. We have a good catch up at the same time.

I'm only tired as the azathioprine doesn't work for me anymore and I've stopped the Humira, must be about six weeks ago now. So I've been without effective immunosuppressants for a while now. But on Tuesday that's about to change. I have no idea what to expect with remicade.
 
I've been thinking that crazy should have been one of the seven dwarves. Sleepy and Dopey are a bit similar. I've just been wondering if I was one of the seven dwarves who would I be ... and no I haven't taken too many pills or had any alcohol
 
Hi kirsty, I'm pulling a Kirsty it's 2:30 am andI haven't been to sleep yet. Going to go try again, so g'night all!
(And I loved that poem again Trysha. I thought it sounded familiar as I was reading thru it, then saw the author credit. I'm sure it was one of the poems we studied in a poetry/lit class I took in college.)
Zzzzzzz ....
 
And Madhu, so glad you got your massage. I get them frequently, it's a sanity saver, emotionally (and achy neuropathic leg and arthritic back and other places pain saver.)
 
Thought for the day......There's a switch you must throw,
If you do it now 50% of the worlds population will die'
If you prefer not to do it,all the world's population will die in 100years


What would you choose to do ?
 
Aura, Well my dwarf would be Jumpy since I startle all the time.

scottsma, well it would depend on who the 50% would be....wound only evil people be left?

cmack, Ya the cabin always refreshes my soul. Just nature and being able to see the sky with no night pollution from the city. It's the best.
 
Carol...being an eternal optimist I would do nothing in the hope that solutions would be found before the hundred years was up., but first I would go with changing the switch...good thinking CMack...
Kirsty. With your beautiful smile I would say you fit "Happy" of the seven dwarves.
By the way I found Remicade really effective but being the worlds best reactor to drugs was not allowed to continue it. I am currently in remission.
Sandy..I am sorry to hear of your sleep problems....been there...still there ...know how it feels. I had an improved sleep last week after acupuncture session for headaches....it lasted a few days...looking forward to the session tomorrow.Certainly helped the headaches.

Winning".................
 
Thanks Trysha... its been raining all day here, glad to recieve the sun from you hun ☺

Take care 💕💕
 
Feel better soon Doug....
springtime will soon be here......the bird is on the wing....now that's absurd...I always thought the wing was on the bird .....( quote:)
Remember Jimmy Durante saying this?..
I know...I'm showing my age....youthful and hopeful...but
Winning....
 
I love spring because the wicked cold weather will finally go away. But my allergies are already starting to act up :(
 
I had a surprisingly good weekend. My guts are still suspiciously quiet. I know they're plotting something!

Madhu, I get year-round allergies so springtime doesn't bother me too much. I think the dry winter air is harder on my sinuses than the moist spring air is. And I love the warmer temps! All the plants are starting to bud, which isn't ideal, because we're supposed to get more snow later this week. Hopefully my garden doesn't suffer too much!
 
I know, not very appropriate, but Burt Reynolds was so good in, "The Best Little Whorehouse in Texas". Of course I love Dolly Parton too so ya....he threw out his back carrying her at the end of that movie. It was a great musical and didn't really show anything just inferred which is nice they wouldn't do that now a days.
 
GI Jane said:
I know, not very appropriate, but Burt Reynolds was so good in, "The Best Little Whorehouse in Texas". Of course I love Dolly Parton too so ya....he threw out his back carrying her at the end of that movie. It was a great musical and didn't really show anything just inferred which is nice they wouldn't do that now a days.
Click to expand...

Even the ads on TV now-a-days show more than I would have been comfortable with back in the days when that movie was made. It sure would be nice to have a little decency. They think they have to show everything. Sometimes leaving things up to the imagination is by far the best (and can have people wondering :ytongue:)
I'm really getting a desire to go fly the coop and go on a trip into the wilderness after reading some of your posts. Now that is another funny saying. The coop doesn't fly. :rof:
 
Sandy, I'm with you, I love escaping into the wilderness when I get the chance. It's cold, dreary, rainy and windy here today though, so I might take a rain check on that and go escape to the forest on a nicer day.

Hah, speaking of odd sayings - when I was younger I took some Spanish classes, and at one point we learned the term "agua fiestas." Which, when you translate it literally, means "water parties" which makes no sense. But it's the Spanish version of saying "party pooper." (Which also makes no sense, except maybe to us IBD'ers, ha!)
 
Well....... the battle with my $^%$@#$& Insurance company continues! I received an explanation of benefits today. They denied the claim on the Entyvio starter kit. I called the insurance company and happened to get the same lady who spoke to my doctor's office. I was told it was denied because the doctor did not get a prior authorization. At my last appointment my doctor's office told me that the insurance company told them they did NOT need a prior authorization. When I relayed this information to the insurance company, I was told "Your doctor's office is lying to you."

The amount of this particular claim is $15,125.00. I have already had 2 infusions so it is not like I can get a pre-authorization at this point to cover those 2 infusions. We do not have the money to pay this out of our pocket. My doctors office is going to check into this.
 
Boy, that sucks! I'm so sorry Doug. Wish the insurance companies tried to be a little bit humane!
 
thats terrible Doug , its inhumane to be treated like that , hope they get it sorted asap for you .
 
Doug, that's insane! I'm so sorry. I hope you can get that worked out. I don't think anybody could afford that out of pocket! That's just horrible. I wish I could say or do something to help - all I can say is, keep fighting them on this.

Ron, sausage always bothers my stomach. Even before IBD came into my life, eating sausage would still send me running to the bathroom. I had a turkey bratwurst at a family reunion thing years ago, and I felt the sudden need to use the bathroom. Of course there were like 30 people there and only one bathroom so somebody was already in the bathroom! I nearly had an accident while waiting for them to exit so that I could use the bathroom. So I don't touch sausage now, it's just not worth it.
 
Oh Doug that is no good at all! I'm very sorry for the angst that this is causing you.

I've just started remicade today
af7ab1f9e4cf599dfee874540872d8da.jpg
 
Well I'm still here. Got hyperglycaemia due to steroids. Waiting on doc to look at what we do next.
 
I'm allowed home now. Just got to keep blood sugars below 20. It cause they gave me steroids in my pre meds.
 
That's good news that you get to go home...steroids will complicate matters...have a good night's sleeep and hope for better things tomorrow
Remember that song Tomorrow is a lovely day....
Hugs...

Trysha
 
On Wednesday I will be starting at a rehab day programme for a couple of months....shorter than that if I do well...which I think I will.still getting lots of pain at night plus bursitis which is very stubborn...my knee remains quite swollen ...strangely the pain is so much less during the day....nights can be a nightmare.,it is so slow to heal.
Looking for a miracle at rehab...it's a whole day....they pick up and drop off so I don't have to worry about transport....lunch provided...very civilized..
They have an interesting speaker one day ...another day might be music,this is while waiting for space in the gym which is one on one with a physiotherapist...that can be a bit tough...
Then the day finishes with a topical film.
That's all for now..Good Evening Everyone...

Winning......
 
Today while the blossoms still cling to the vine
I'll taste your strawberries I'll drink your sweet wine
A million tomorrows shall all pass away ere I forget
All the joy that is mine today..
.(old folk song)
 
Good to hear from you Kirsty...hope you are now comfortable at home with a nice cup of tea....
 
Trysha said:
Today while the blossoms still cling to the vine
I'll taste your strawberries I'll drink your sweet wine
A million tomorrows shall all pass away ere I forget
All the joy that is mine today..
.(old folk song)
Click to expand...
That song ages me
 
We are stuck in traffic due to a bus breakdown. Should be home in an hour
 
Kirsty...That's what you call an end to a perfect day...
Hope you are Home soon
 
Doug,Sandy,Kirsty and Trysha.....thinking about you all and sending gentle hugs and support your way..all my other chronie family, be well and be good.But I know that's not easy for some of you.wink,wink.
 
Hey everyone! How have you guys (and gals) been? Hope the insurance works out for you, Doug. All the best for your Remicade infusion, Aura. And good luck with the rehab programme, Trysha. Hope you all have been thriving Ron, Sandy, Madhu, Cmack, Cat, GI Jane and CP! :ghug:

Some updates on my life: School came to a standstill when I was admitted into the ER for excruciating abdominal pains, fever, chills and a throbbing headache that wouldn't subside with painkillers early this morning. Since then, I've done a full blood count, liver function test, pancreas function test, X-Ray, ultrasound, blood culture, oxygen level test and glucose level test. I feel like someone coming back from war since my hands are all covered with bandages XD

Three doctors, including my GI doc who had to rush to the ER because of me, have took a look at my blood work, and all three of them, each on different occasions, have given me their preliminary diagnosis as pancreatitis and gastroenteritis, which can be a result of Azathioprine intolerance. I've been given a nil-by-mouth order since early this morning, so I've not ate a single thing today. Everything is given to me intravenously, including Omeprazole and Paracetamol. Looking at envy at the seven other people in the ward with me, all enjoying their delicious meals ._.

There has not been a discharge date in sight yet, but I hope this visit would not burn too large a hole in my parents' wallet. I also hope that I won't have to undergo surgery for the pancreatitis :/

In conclusion Crohn's really does suck! :(
 
CYY, oh my! That sounds awful, I hope you start feeling better very soon. I know it's easier said than done, but try not to worry about the money right now. Just focus on resting and healing. You mentioned an intolerance to Aza, I presume this means you'll be stopping the Aza - have your doctors come up with another medication plan for you?

Thinking happy thoughts for you and sending you gentle virtual hugs! Feel better and I hope you get to go home soon!
 
Hello CYY
Thank you for the kind thoughts.sorry to hear you are in hospital and hoping you feel better very soon.
Some years ago now
When I had a similar bad reaction to Azathioprine it was more supportive measures .....plus..watch and wait. As you can see I did get better so the hospital stay was brief.
It is not a drug you will be given again...
It is a sad indictment of the medical system and the greedy drug companies that anyone should have to worry about hospital costs...bad enough being there.
Get well soon
Hugs
Trysha
 
I get a kick out of you being called "Fuzz" Mandy (aka Fuzzy Butterfly). I hope you are doing well.
CYY, I'm so sorry about your latest news. That is horrible!! I hope they can figure out how to help you the best and the fastest. Cat is right, don't worry about the money. For one thing, you are too young to have to worry about such things. Also, your parents have to know that you don't cause expenses out of your own free will. Even if your parents are upset, it has to be at the situation and not at you. Money it's just a tool, and things have a way of working themselves out (tho as we know stressful at times). Hang in there and know you are being thought of and have friends here. Keep us posted as to how you are doing. I hope that is a very short visit indeed.
Kirsty, I am so sorry about the steroid side effects. I had something weird happen that has never happened before. (I'm always in anomaly.) When I was on the 40 mg of pred for the week, my blood sugar's went down! Very strange. I mentioned that to my doctor the other day and he gave me a confused look, had never heard of that before. (It was time to check my A1C level and other things anyway so I had all sorts of blood levels drawn, just routine. Get the results in a month with my next appointment.) With the pred, I also slept better then normal except for the first day. Very strange indeed.
And wow Trysha! Your physical therapy sounds so much nicer than it ever is around here. Lunch and transportation provided, wow! Wow, wow, wow! Because of the time I had where I couldn't drive because of seizures, I have often wondered what would happen if I needed therapy and couldn't get there. I'm not close enough to public transportation as a general rule.
Just a thought, nights are the hard time with my toe that needs the joint replacement also. I think it is because we have used those joints all day and then they ache at night. No, it isn't good for the sleep. I sure hope your knee starts cooperating a little better and no more bursitis!
Again it seems like everyone is going through a lot around here. I hope things pick up for everyone. :ghug:
Myself, I have a bit of fun news. (It is something that Cat would relate to. And I'm not talking about what she calls "retail therapy," because I am looking at this as a tool for getting healthier, and want to keep up on the cardio workouts after PT, and even what I'm doing at home myself now.) I bought myself the equivalent of a Fitbit yesterday (a Samsung gearfit 2) one that interacts with my cell phone and an app I have been using quite nicely already. The problem is, is that my cell phone can't read my steps or other things when I put it down. The gearfit does a ton of other things such as keep track of my heart rate (even when I don't tell it to periodically according to my settings), and can keep track of a lot of other workouts, food and water intake, caffeine (I only use with migraines because of my SVT), keeps track of my sleep, and will even tell me when I've been inactive too long. It is perfect for me. Almost everything it keeps track of is according to the settings I give it. It can also notify me of incoming phone calls or text messages, calendar items etc., or most other basic phone notifications if I so choose, and can also be used as an alarm in the morning. (And a timer and stopwatch for my workouts.) It can even turn on the music in my phone (to use with or without workouts). I have to admit, though it was not meant for retail therapy, it is making me smile.:ysmile::ysmile::ysmile::ybiggrin:
 
☺ Sandy good luck getting your head around all that your new gadget does.... its lost me already. Im now confused.com just reading what it does 😃.
 
Sandy, that's interesting about you sleeping well while on pred - that happened to me as well at first. When I was hospitalized, I had been on Entocort but it wasn't doing anything for me. So in the hospital, they put me on IV steroids, I believe it was equivalent to 60 mg per day. And I slept great while in the hospital! I hadn't been sleeping well at all due to the flare, the pain and urgency would wake me at all hours of the night. The night before I was hospitalized, I remember I had finally gotten to sleep close to midnight, but a sharp jolt of pain woke me up at 2 AM and I couldn't get back to sleep after that, and ended up in the ER at 8 AM and was admitted around 1 PM that day, and slept great that night. I think the IV steroids worked quickly enough to get things under control enough that I was able to sleep through the night. That's my theory anyway. I was woken up at about 5 AM every day while in the hospital as the nurses felt it necessary to do blood draws at that time, and the hospital helicopter seemed to take off and land almost directly above my room, so those things woke me up, but my guts didn't.

Your fitness tracker sounds very similar to my fitbit! I love my fitbit, I'm very much a data person and I like to know what my numbers are for each day (I'm on my 2nd fitbit now, I lost my first one and couldn't deal with not knowing what my numbers were, so I immediately bought a new one). When I was in Japan, it was super helpful to know how much I was walking per day - we were averaging 8 to 10 miles per day! And when we walked up Fushimi Inari in Kyoto, my fitbit tracked how many flights of stairs we walked up - Fushimi Inari is basically a lot of stairs that go to the top of a small mountain. My fitbit said we walked up about 70 flights of stairs that day. And I got in over 25,000 steps in one day at Tokyo Disneyland! I love geeking out over stuff like that. :p Oh, and it can totally be a necessary tool and also retail therapy at the same time. That might be the best kind of retail therapy! :)
 
Oh, and as for what would happen if you couldn't drive to therapy - when my grandpa was still alive, he had dialysis 3x per week and eventually he gave up driving. Sometimes my grandma would drive him to dialysis, but as her dementia progressed I'm sure he didn't want her driving as much. There was a special medical taxi service, I think it's called "Cabulance." I'm not sure if that's just a local thing or not. But they'd pick up my grandpa, take him to dialysis, and bring him home again - I believe his insurance paid for the service, although I know he did keep a wad of cash on hand to tip the cabulance driver (we found a huge wad of $1 bills after he died and my grandma said that's what it was for). So there may be a service like that in your area - may be a thing to look into just for future reference.
 
Aura said:
Oh Doug that is no good at all! I'm very sorry for the angst that this is causing you.

I've just started remicade today
af7ab1f9e4cf599dfee874540872d8da.jpg
Click to expand...

Hey we were twins yesterday....well except I was having Vedolizumab....feel like I was hit by a truck today.
 
I hope both of you get over your infusion side effects soon. Though not from the same reason, I too know that feeling.
Cat, I almost got a Fitbit! The only reason I decided on the device I did is because it would interact with notifications from my phone better. I really like that feature. There were times I would miss phone calls or texts in a timely manner (something urgent) because I didn't hear the notification or ring tone, like when it was in my purse while at the store or driving. Of course I don't answer the phone when driving anyway. I really like having the vibration on my wrist let me know when anything has happened.
The only thing I don't like so far is it didn't record my one flight of stairs to do laundry. Boo, hiss! How dare it miss my one measly flight of stairs! (Maybe because I paused halfway up?) And it does take a while to learn to use it, but I was familiar with some of the features from my fitness app on my phone. I just had to input those manually in most cases. And I am still trying to figure out some of the settings on the gearfit.
Regarding Transportation, I am sure there is not a service like your grandpa had (we don't even have a taxi service in this county without paying them to come from Salt Lake, about 25 miles) but there is a service for something similar called "paratransit" ran through the public bus service. It will pick you up and drop you off where you need to go but you can basically count on wasting about four hours each time you use it because of the wide window of time they need both before and after. And if you are not ready when they get there, although you have to be ready and waiting, a couple of hours before and I have seen it take three hours to get home after. It depends on how many other customers they have and where they need to go. And they don't wait if you are not ready. Another issue is that it is mostly mentally challenged customers who use it and I would not fit in well (but that part doesn't really bother me, I'm used to dealing with mentally challenged people from when we had foster kids. In fact, I like working with them.) The last issue is that you have to jump through all sorts of hoops and pre-approvals (doctors forms and recommendation and their own testing) in order to qualify to use it, and it can take weeks or months. There is a small fee each time or a monthly pass but that doesn't bother me either.


One last bit of good news if Doug hasn't beat me to it. I got a call from the doctor's office regarding the pre-approval of his med. It turns out that the insurance company who very blatantly accused the doctor's office of lying about talking to them to get approval, has a reference number of their saying that no pre-approval was needed. Basically of reference number for a pre-approval. We also have the person's name who the doctor's office spoke to, the date, and a couple of other notes about the conversation. His approval should be re-approved. (Is that a word?)
Happy Days Are Here Again!
Tee hee, I just got notified it's time to move again.
 
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