Advice for long car journey - moving home & flaring!

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CeeCeeGo

CeeCeeGo

Joined
Oct 23, 2012
Messages
281
Location
Wirral, UK
Hello

Haven't been on here for a while.....

Well, in 2 weeks I am moving to the other side of the UK - from the NE to the NW. I started flaring about 4 weeks ago and have been on Entocort 9mg a day for 3 weeks. My FCP came back at over 300 and tests for infections were fine. The Entocort doesn't seem to be working this time and I am starting to worry about the long car journey to get us to our new home. Oh yes, whilst out and about yesterday, I just about made it to the loo in time.

My GI doesn't normally like me taking Loperamide but I am thinking it may be a good idea to get me through the journey. Also as you can imagine, I am really stressed at the moment about the move.

I would be really grateful to hear your ideas/advice/tips for moving day and if there is anything you think I should do the couple of days beforehand.

Thanks
Carol
 
It's not a good idea to overdo it on Loperamide or take it often, but for situations like this I think it's fine. Probably also best to eat lightly in the days before your move. And have some emergency supplies on hand in the car - wipes, a change of pants/clothes, pads or adult diapers, etc. It might also be a good idea to sit on a towel or plastic bag, just in case. And to help you feel a bit less stressed, it might also be worthwhile to look at a map and mark down any areas where there are bathrooms along your route - that way you'll know exactly where the next one is if you feel the urge to go.

For what it's worth, I also had a flare a few months ago that didn't respond to Entocort. Pred has done the trick, though. So maybe get in touch with your doc if Entocort still isn't kicking in, and see if you can switch to pred instead.

Good luck! I hope all goes smoothly with no issues.
 
Thanks for that Cat & Ron. The towel and plastic bag is a good idea - just in case!
Like you both, I think the bland diet will come into play and hopefully one dose of Loperamide will do the trick. What will be, will be!

PS. Cat - how are you doing now? I was reading your 'Entocort not working' thread this morning.
 
I've definitely brought plastic bags in the car to sit on, you just never know (fortunately I've never had an incident in the car, but the bag makes me feel better). My hubby just bought a car with leather seats, eek, I really don't want to have an accident on those! Plus they are heated seats, so knowing my luck, I'd end up shorting out the wires or something and zap myself in the backside, hah. :p

As for how I'm doing - in a nutshell, going back to the start of this, I had started flaring in late July (I think the flare was brought on by stress - my grandfather died in May, and in June we had to put my grandmother in a care facility as she has pretty bad dementia). I was on Entocort 9 mg for a month but it didn't do much of anything - I had a few good days in the middle of that month but then things got much worse again so I don't know if the good days were a fluke or what. Eventually I couldn't digest any food, not even Ensure, was having watery BM 20ish times a day and couldn't stay hydrated. I lost 17 lbs in just over a month. So I ended up being hospitalized for 5 days at the end of August and was on IV steroids at that time. When I was discharged, they put me on EEN and a 40 mg pred taper, which has worked pretty well, but now I can't seem to get below 10 mg pred without flaring again, so I'm slightly stuck at the moment. I did EEN for 2 weeks after my hospitalization and then transitioned to the low-FODMAP diet, which has also gone pretty well for the most part. I've regained my weight (although it was more muscle before and it's more fat now!) and went back to work. So, if I could just get off of pred without my symptoms coming back, I'd be doing pretty well. I'm also trying to get on a better maintenance med - currently just on Lialda for maintenance, which doesn't seem to be strong enough for me anymore, and since I'm still technically undiagnosed my GI said no biologics and no immunosuppressants, so my options are really limited. I'm trying to get my GI to agree to LDN, but so far he hasn't given me an answer on that. I see my GI next month so I'm going to pester him about LDN again then.
 
Thanks for the update. It really touched me reading your thread this morning. WOW - I cannot imagine what it must be like not having a confirmed diagnosis but having to deal with what certainly seems like IBD.

I know after I had surgery it was really hard trying to find a med that I could tolerate and would also get me into remission. The only thing that seems to have worked (a bit) is Humira but I have had major rheumatological and skin issues since I started it two years ago. My GI thinks now that it may have lost its effectiveness.

What may be interesting for me is that the hospital I am moving to (Royal Liverpool) has a big IBD department and also does lots of research. I think it will be interesting to get a second pair of eyes on my situation and see what they suggest.

All the best
Carol
 
It is pretty difficult not having a proper diagnosis. I probably mentioned this in the other thread, but I have an aunt who was undiagnosed for 30+ years before she finally got a Crohn's diagnosis just a few years ago. So I sort of look to her to be my inspiration during times like this, if she could survive over 3 decades undiagnosed then I can survive whatever I'm currently going through (it's been just over 7 years since I first became ill so I just hope I get diagnosed before it's been 30 years for me!). And my doctors do fortunately treat me as though I have IBD - my symptoms "fit" IBD and we've ruled out a lot of other potential things that it could be, so I kinda-sorta have a pseudo-diagnosis of probable IBD, but no official diagnosis. My GI is very conservative and refuses to put an undiagnosed person on any of the stronger meds, so my options are super limited right now (he kept mentioning another mesalamine formulation, but at this point I've been on almost all of them and that's not an acceptable solution to me). That's the most frustrating part. Lialda kept me feeling okay for awhile, but it didn't keep me from having this flare. And usually Entocort gets me out of flares, but not this time. So I do feel like I need something stronger for maintenance once I'm off the pred, but I don't know if I'll actually be able to get on something stronger. It's frustrating!

I wish you lots of luck at the new hospital, and I certainly hope they can figure out a treatment or combo of treatments to get you into remission or at least feeling better than you have been. It does sound very promising and I'll be interested to hear what they are able to do for you! Please keep us posted on that.
 
CeeCeeGo said:
Hello



My GI doesn't normally like me taking Loperamide but I am thinking it may be a good idea to get me through the journey. Also as you can imagine, I am really stressed at the moment about the move.

I would be really grateful to hear your ideas/advice/tips for moving day and if there is anything you think I should do the couple of days beforehand.

Thanks
Carol
Click to expand...

Hi Carol, I would certainly take Imodium for the trip!
Sorry to go off topic a bit but do you know why your GI doesn't like you to take it?

I take it when I need it otherwise I just wouldn't be mobile much! I swap it around with Codeine because I prefer the effect and I find it more reliable but obviously don't want addiction problems.

And Cat, it must be so hard being undiagnosed for so long, I hope that gets sorted well within that 30 year timeframe!
 
Hi Layla

The reason my GI does not like me taking Loperamide is because just shortly after I was diagnosed in 2012 with mild to moderate Crohns, my bowel perforated unexpectedly and I needed emergency surgery. Since then, he is always mindful of this and says that he doesn't want to do anything that may 'Block me up'!

Going off topic again - from your signature I see you take magnesium and zinc and a multi vitamin. I am especially interested in the magnesium and zinc. How did that come about?

Thanks
 
Thanks for that explanation, that makes sense. I have to admit that whenever I have even the slightest inkling of a stricture I stop taking anything that may slow things down, even psyllium.

The zinc was prescribed by my dermatologist to counter hairloss- female pattern baldness. That started before I was re-diagnosed to Crohn and in hindsight it may have something to do with it. In any case even on a high dose of zinc my levels remain low, just above the minimum, and my hair is growing back so I'll keep doing it.

The magnesium is also possibly unrelated, I take it for cramps. But seeing as I also have absorption issues with B12 and iron I'm assuming a lot has to do with general malabsorption due to Crohn's, hence the multi to cover most bases.

And I should update my sig as I've moved to Remicade :)

Seeing you are in the UK you might want to ask if Arestal is available. It's loperamide oxide 1mg and I found it just as effective as straight loperamide but much milder on the system. It's not available here but I know you can get it in mainland Europe so maybe in the UK too?
 
Thanks for the advice about Arestal. I will check with my pharmacy.

Also thanks for the info on magnesium and zinc. I have problems absorbing nutrients due to the loss of that part of my bowel through surgery and I am wondering whether I also need to add those two into the mix. A question for my new doctor in Liverpool?
 
I don't really have any advice. It is more commentary. The other day I was going to drive to my newer home. It was to be a 19 hour drive. I didn't make it though. In someways it's frustrating as the stomach is doing pretty darn good along with having good energy most of the time. The problem for me is apparently a sore spot in the colon that when it is aching, everything else in the body aches. I'll have typically 3 good days in a row and then a 4th day of feeling absolutely awful, with fatigue. Anyway, bit of a ramble on my part. I ended up scheduling the begin of my 19 hour drive home on a "4th day". The result was that I made it down the road an hour when I turned back. I'll try again in a few weeks. The home trip can be put off thankfully.

Good luck with your move.
 
Hi Beach

My drive is probably only about 4 hours (thankfully not 19!). I certainly don't envy you that! I gave found that in the last few years whenever I first get in the car I start to feel nauseous and my tummy and bowels feel every bump. It normally settles down within 45 minutes.

Thanks for your good wishes and I hope you manage to get home soon. :ghug:
 
Carol, for those first 45 minutes, would a hot water bottle help? Or you can make or buy a microwaveable heating pad. I have a "heat therapy" stuffed animal that I pop in the microwave, and it holds its heat for about an hour. There are also instructions on sites like Pinterest for how to make one yourself - I think it's basically, just make a little pillow (you can even use a clean sock) and fill it with dry uncooked rice, something along those lines anyway. Something like that might help you get through that first rough patch during the drive.

Beach, 19 hours??!!? That sounds just awful. I hope you weren't planning on doing all 19 hours in one go? I flew to Japan this past spring, which was a 13 hour flight, and that was not a fun flight at all - and I was able to get up, stretch, use the restroom, etc. Driving for that long, just nope! Can I ask where you're driving from/to? You must be moving clear across the country?
 
Oh just the though, I wish I was flying as it is only a 2 and a half hour flight from here. That would be so nice and wonderful.

I'll be driving from Illinois to S. Florida. It's typically a 2 or 3 day event. It looks like I now have a driving partner to help out incase I experience another fatigue episode. Room will need to be made in the packed car for a second person. It will be a 2 day trip this go.
 
Well.....
This time next week we will be on the move to our new home.
As I am sure you can imagine, the stress is starting to build, especially as the move was only confirmed for sure last Friday!
Please excuse this post but just needed to get it out there! :ybatty:
 
Best of luck CeeCeeGo! Hope the trip goes smoothly and without issues.

I'm off to Florida Thursday bright and early!, I hope. I am reading stories this morning of a gas pipe line explosion near where I'm driving. Some fear there could be a gasoline shortage in the state of Georgia. Hopefully not. Incase there is I'll plan on filling up more frequently as I drive. 2 complete fill ups is all that it takes.

I saw this video of a self driving truck the other week and it had me excited. I need one! That would make long trips much more bearable. I like the idea of a break room while heading down the highway.

"Otto and Budweiser: First Shipment by Self-Driving Truck"

https://www.youtube.com/watch?v=Qb0Kzb3haK8
 
CeeCeeGo said:
Well.....
This time next week we will be on the move to our new home.
As I am sure you can imagine, the stress is starting to build, especially as the move was only confirmed for sure last Friday!
Please excuse this post but just needed to get it out there! :ybatty:
Click to expand...

Wish you the best.
 
Good luck, Carol! I hope all goes well! Please update us again once you've arrived and are settled in to your new place. Hopefully everything goes fine, but even so, I know it's a stressful time when you're moving. Take care of yourself!

Beach, from what I've read about self-driving vehicles, it's apparently still required that there has to be a human behind the wheel who is paying attention and can take over driving the vehicle if there's a malfunction or an emergency situation. The technology is still so new that they require a person to be involved and at the ready at all times just in case. So it wouldn't be much of a break, at least not yet - maybe once self-driving cars become more common and the technology is fine-tuned then you'll be able to take a break while the car drives itself for you. But I would guess that's still at least a few years off in the future yet.
 
Cat-a-Tonic said:
Good luck, Carol! I hope all goes well! Please update us again once you've arrived and are settled in to your new place. Hopefully everything goes fine, but even so, I know it's a stressful time when you're moving. Take care of yourself!

Beach, from what I've read about self-driving vehicles, it's apparently still required that there has to be a human behind the wheel who is paying attention and can take over driving the vehicle if there's a malfunction or an emergency situation. The technology is still so new that they require a person to be involved and at the ready at all times just in case. So it wouldn't be much of a break, at least not yet - maybe once self-driving cars become more common and the technology is fine-tuned then you'll be able to take a break while the car drives itself for you. But I would guess that's still at least a few years off in the future yet.
Click to expand...

Cat, you need to watch the video. You don't have to watch it all. You can move over to 1:20 seconds into the video. The driver gets up and takes a break.... reads a magazine in the back room.

Good thing there isn't a door between the back cab and front drivers area. I have an uncle that would love this job. It would give it new meaning to drinking and driving. Not that he is an alcoholic I believe. He just enjoys his Budweiser. That and coincidently he is a government engineer that designs roads. Fewer off ramps in the future if he has his way. :p
 
So......

Yesterday whilst I was lifting a box that had been packed, my wrist decided to give way. After spending this morning in Casualty, they think I have a fractured scaphoid and I have to wear a splint for the next 6 weeks. Happy days!

At least I can get out of all the lifting.....

:highfive:
 
Oh my goodness! That's definitely a good news/bad news situation. Good that you don't have to help with the lifting, but bad for your poor wrist! Hopefully you're not in too much pain and it heals well.

I'm prone to injury myself lately, I went to the gym last week, and during my workout I felt a "pop" in my foot just behind the big toe - I apparently now have "turf toe" and need to immobilize my big toe for at least 2-3 weeks. So I feel your pain, it's no fun getting an injury out of nowhere like that and having it take weeks to heal! Hopefully we both heal up soon and don't injure ourselves again for a long time.
 
Oh Cat
What a pair we are?
I must admit 'turf toe' sounds cooler than scaphoid (if injuries can be cool but I am sure you know what I mean). Hee hee!
Just sitting here chilling while hubby gets me a drink. I'd better make the most of this as I am sure he will get fed up soon.
Take care
 
I must disagree, I think "scaphoid" sounds cool and science-y. "Turf toe" makes it sound like I'm a big bulky football player (I'm definitely not, ha ha!). Enjoy your drink and being waited on while it lasts! :)
 
Terribly sorry to read about the wrist problems. Hope you heal well and quickly.

I'm off tomorrow for warm Florida. As usual on these trips I'm nervous, have been nervous for a few days. Thankfully I'll be in an automatic driven vehicle. It's the old fashion type as I'm riding with someone for the long trip south.
 
Hi Beach
All the best for an easy safe trip to Florida. I look forward to comparing notes next week after my shorter trip to Liverpool.
Take care
 
I made it! I'm in Florida as of this afternoon. Long trip but thankfully largely uneventful. Probably the worst for me was the first 3 to 4 hours of driving. Mornings tend to be the worst time for my stomach. When sitting and bouncing around in the car after breakfast the stomach can be tender. I was a poor conversationalist those first few miles driven. Thankfully after everything settled down it was smooth sailing.

Well, it happened. My condo in Illinois is for sale. I've had it on the market for a few months. I've been joking that while on the road to Florida this is when I'm most likely to receive a call from a serious interested buyer.

That's what happened. After driving for 17 hours, with 2 hours from my destination, my real-estate agent called that a serious offer has been made. Hard to say how negotiations will go. With luck though the condo will be sold in the next few weeks. And if a condo deal is reached I'll need to return to Illinois to arrange the moving of remaining items in the condo.

I think I'll fly when returning! I've had my fill of long drives for the year. Well, unless this deal falls through. If that happens I might need to take another long drive.

Good luck once again with the trip to Liverpool CeeCeeGo. Hope it is safe and uneventful.
 
Beach said:
I made it! I'm in Florida as of this afternoon. Long trip but thankfully largely uneventful. Probably the worst for me was the first 3 to 4 hours of driving. Mornings tend to be the worst time for my stomach. When sitting and bouncing around in the car after breakfast the stomach can be tender. I was a poor conversationalist those first few miles driven. Thankfully after everything settled down it was smooth sailing.

Well, it happened. My condo in Illinois is for sale. I've had it on the market for a few months. I've been joking that while on the road to Florida this is when I'm most likely to receive a call from a serious interested buyer.

That's what happened. After driving for 17 hours, with 2 hours from my destination, my real-estate agent called that a serious offer has been made. Hard to say how negotiations will go. With luck though the condo will be sold in the next few weeks. And if a condo deal is reached I'll need to return to Illinois to arrange the moving of remaining items in the condo.

I think I'll fly when returning! I've had my fill of long drives for the year. Well, unless this deal falls through. If that happens I might need to take another long drive.

Good luck once again with the trip to Liverpool CeeCeeGo. Hope it is safe and uneventful.
Click to expand...
Glad you made it okay, Beach.
 
Hi Beach
Glad your trip went well. I know what you mean about the first few hours for your tummy especially with the poor condition of our roads nowadays!
So glad your condo seems to have sold as well. It is always the way that things seem to happen at the same time!
I am sure that the weather where you are is oodles better than here. There are rumours that we are due for frost and snow.
Take care
:thumleft: :dusty: :rof: :drink: :banana:

Oops went a bit silly with the smilies!
 
Well, we got here eventually last night after an awful journey with horrible weather - ended up snowing towards the end.
Removers turned up this morning and we now need to unpack. I cannot remember the last time I spent 12+ hours standing up - I am in bed now and my feet feel like they are in heaven!

:dance:
 
Hope you can put an order in for a foot massage! Congrats on successfully making the long journey. Best with the unpacking and hope the hand is doing better.

Kicked up relaxed feet sounds just right to me. It's been a whirlwind for me since getting into Florida doing this and that, and additionally with yesterdays election keeping me up in suspense. I plan to sleep well tonight.
 

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