Travel

[Anne smith]

Hi! Just want to share your feelings on travel!
Over the last twelve years of suffering with pn I have continued to work and(play) with the help of a few restrictions and a lot of meds, but my last holiday( sharm el shake) from my local air port(five ish hours) has been a disappointing trial !
I have at last accepted that lying(or trying) to lye on a sunned all day! Plus long lunches, sit ing in bars socialising, breakfasting at leisure, has become horrendous!!
Am I to be a martyr to to this complaint for the sake of my partner, as he lives for his holidays abroad ? He now knows long haul is out!! Or face discord in my relationship!( he has been through many failed surguerys) and nursed me through to the best of his abilities! Going back to the holiday, it was only on the tenth day I was feeling any relief and ( thank god for achahol)
For those of you who have not been able to travel for years! Please don't think I am a winger! I have just tried so hard to keep the cart on the wheels as I'm sure many of you have! Yes I did take a favourite cushion, but it did little to help.
Isn't it hard when the rest of the world it seems is lolling about on couches and chairs without the slitest notion that you feel like crying!
I promise to make the next post more cheery! I am usually so posative( but we all have off days!
Please let me know your feelings on this.
Anne

[calluna]

So sorry that your holiday was so difficult.

I've heard that others have found it helpful to take icepacks - wondering how this works with the 100ml restrictions, though. Are gelpacks exempt? Seems unlikely, so a doctor's note would be needed. Did you use ice at all?

I would have thought that flying wouldn't be too bad though, the only time we have to sit is when the seatbelt light is on for takeoff, landing, and turbulence - and also for meals, of course. Other than that it is fine to stand. It would still be a tough day though.

Would self catering accommodation make things easier? That's what we usually do, then there is no requirement to sit in bars or restaurants, we can just do our own thing. Also there is easy access to ice as well, very necessary when things are painful.

And yes, hooray for alcohol, it does help.

[Anne smith]

Thanks calluna
I am lucky calls a that I have vague problems in my girlie bits, some time bait of numbness , sometimes a little burning! My pain is of the more rectal kind! Deep gnawing aching and worst off all the deep burning like having(excuse the detail) armed hot sword inside you! This pain type doesn't seem to respond to ice,but thank you so much for that advice.
You are quite right about the possibilitys of self catering, cooking isn't a chore for me, as we all know we can stand to do it! So it's just a case of putting this to my partner as an alternative!he likes to travel abroad in the winter and enjoy the summers here(well when we get any??) but I'm afraid it looks like compromising and taking the shortest option(Europe) maybe two ish hours instead of five or six, and he could enjoy shopping the markets for fresh produce,( Whitch he loves)
All in all like all of us it's about adaption I know! Thanks so much again for your advice! I find you and people like Helen such a help with your common sense and wisdom!
Anne

[Violet M]

Anne, I'm sorry your vacation did not turn out well. I used to take extra pain medication on trips -- although that also means you have to take extra laxatives to prevent constipation. Have you tried any local anesthetics for the rectal area? There are some topical compounded medications with various meds like baclofen, gabapentin, ketamine, valium suppositories etc. that some people have found helpful.

Violet

[Anne smith]

Hi violet
Thank you so much for your reply! You have mentioned a couple of meds I haven't tried! At the moment I'm on pegabalin 150mg a day amitriptalene 50mg. I think that because I want to funtion like my partner and have that(ok I'm on holiday) gin and tonic, I trade extra medication to do it!(wrong I'm sure) I'm a pretty much get on with it kind of person! And I feel almost guilty to vent my "spleen" , but it was not money well spent for the first few days to be layed in room(no matter how lovely) on tramadol!
Just to give an example of my need to please and (be "normal") on the last evening I cut and blow dried the hair of the p.r of our hotel who couldn't get a good hair cut!
Thanks again violet!!
Anne

[Jax87]

Hi Anne,
I'm also sorry to hear that your recent trip was so rough. I agree with Violet, see if you can try some different medications. I remember one trip to Texas (4 hour flight) when I was in so much pain I cried most of the way. Now I take Cymbalta and Lyrica, and I can travel much more easily. The Lyrica made me sleepy at first, but I guess my body adjusted, because I don't notice it anymore. It's great that you sound like you have a supportive husband, and I hope that you can find a way to have more enjoyable vacations in the future.

Hugs,
Jackie

[Anne smith]

Thanks jax
We seem to be on similar meds I'm on lyrica and amitriptalene. I have now been on them for several years and I do think they tend to lose there potency a little! But we do have to keep positive I know and I'm sure there is a solution! As for my partners support? Yes so far so good, but when you are limiting another's life and adventurers spirit! There can always be a limit!
Thanks again! The support here men's a lot
Anne

[kathyd]

Hi Ladies
I was reading your posts and can so relate to the travel issues..So sorry Anne, I know how bad the rectal pain can be. Due to it we have to travel by car with me on a mattress etc. We have had some good times this summer tho and for one trip the pain actually lessened...wish I could figure out why, cause it later came back with a vengeance.

Anne, and everyone, what helps with rectal pain for you? Mine is the gnawing, aching toothache like type ..felt right at the anal opening on the right..(i also have perineal tightness in the middle vulvar are on that side,
Ive used dilaudid suppositories for the rectal pain for about a year ... and gone up to the highest level 12mg... and its not doing much anymore..

Im on a naroctic med which I want to get off as it hasnt helped much..(tho probably better than nothing). Its too much of a battle with constipation and not worth since I don't feel better.

I want to take something non-narcotic and have expressed this to pain mgmt but they don't seem to have any ideas.. (my regular pelvic pain doc is new to me as my long term doc stepped down..and I'm now seeing her colleague..She referred me over to pain mmgt tho I wish she would help me come up with a med for me,
Ie Lyica....etc..... or another combo of supposiltory .

What has helped you get by with the rectal issues?
I know nothing's perfect but just something that would offer a little relief. ...as this rectal stuff has gotten so bad..

I never had this kind of pain until an ill-advised peripheral nerve surgery ...
My pain was originally bladder IC stuff and severe tightness when trying to pee... hard to empty...That eventually progressed to sit bone pain in 2010... and later this horrendous
rectal stuff probably from scar tissue from surgery... altho I also have other thougths about the source of the pain.

Any med suggestions would be so appreciated.
I hope you all get relief as well and are able to enjoy yourselves.. I so agree that it is so hard to watch folks relaxing in their easy chairs not knowing how wonderful that would be!

[janetm2]

I am with you on travel limits but since surgery I have made 1.5 hour car trip and finally after 3 years 1 hour plan trips to my brothers first as a visit this summer and now his funeral services. As for rectal pain I am on 1500 mg gabapentin neurontin and started a new ointment special compound I will send later as we need to get to breakfast and church for services. I also use 50mg Tramadol for flares or oxycodone(of course that is narcotic).
Janet

[kathyd]

Thanks so much Janet
Look forward to hearing more about what type surgery you had and what meds help manage your rectal pain.
Thx!
Kathy