Not well at all ... desperate for advice

[CookieCat]

Hi to everyone who remembers me and hello to the newbies too,

I feel terrible about coming here for advice and support when I have not been around to support anyone else, but I am really desperate. I just don't know what to do....

I've been plodding along, having my good days and bad days like everyone else. But last Saturday, I woke up with worse than usual stomach pains. I put it down to probably being from vovulous - I have an abnormally long bowel that gets twisted from time to time and causes a bit of a blockage. Usually it resolves itself within 24 hours, and I was much better the next day even tho' not great. Still felt sick on Monday and Tues, but it was bearable. But on Wednesday morning, I woke up early with terrible pains - worse than I have had since my op (exploratory laparatomy). I took an oxycontin tablet... then another... then another... and that, on top of paracetamol and codeine finally got it within a range I could cope with. But I had to keep on taking painkillers to deal with it all day.

Finally I gave in early on Thursday morning and got my very reluctant mother to take me up to the hospital. For those who might remember, I don't have good experiences of my local hospital at all. They gave me some IV painkillers (fentanyl) which finally brought my pain score down under five... but I could still feel the pain. They did an Xray which showed some twisting of my bowel plus "fecal loading" (lovely), so they gave me a muscle relaxant and I had another Xray which showed the bowel had straightened. So I got a 'blast up the arse' (enema) and was sent home.....

Well, to put it politely, I don't think I am blocked up anymore at all.... but I am still in pain. Not as bad.. I'd say about a 6-7 out of 10. But it's not great. And I feel very, very unwell. I think I have had temps.... been shivery and shakey, had headaches, I hurt everytime I even sigh.

I just don't know what to do. Do I go back up to the hospital? I feel so embarrassed about the other night, but I kind of think that the doc saw the 'fecal loading' in my colon and decided I was just constipated. Even his discharge letter was dismissive - said I 'appeared distressed from the pain'... well, yeah! I think anyone would be distressed with that sort of pain! Like I said, I am not as bad, but I don't feel right at all. I thought of going to my GP, but don't know what she would do anyway. And then I think I should just sit it out....

In the meantime, I haven't been able to keep much down at all. I know I am dehydrated and losing weight, which is an issue for me as I am still very underweight. I just don't want to be told it is all in my head.

If anyone out there has any advice, I would really appreciate it so much. I have to say I am a bit scared and feel so alone in this. I also feel I need a really good reason to go to a doc or up to the hospital - my Mom was pretty annoyed the other night and I know she thinks I was exaggerating and it wasn't necessary that I went up to the hospital. But I honestly couldn't deal with the pain anymore.

Just wish there was someone here who could look after me right now. Even having a shower today was a huge struggle, and I feel so damn dizzy I have fallen over twice today.

Please help if you can. I hope everyone else is doing OK. I do read from time to time, just don't know what I can say to help anyone...

 

[danman]

Don't feel bad Cookie. I don't know what to tell you.

Perhaps it's time you changed hospital/doctor. If your not getting relief at present, you deserve better treatment. No one should go through constant pain, even with this disease.

 

[Guest]

Cookie, sometimes we have to be our own judges and to a certain extent our own doctors.. i know this sounds easier to say than to do, but try not to consider what your mother or the hospital staff think. you know your own body, you know when something feels wrong, and you have every right to reach out to the correct people for advice and help when you think you need it.

right now, i'd say you need it. whether or not you were blocked up due to a twist, if it had righted itself your pain levels should be abating now and you should be feeling better each day. merely sighing should not be so painful, and there's no way that falling due to dizziness should be ignored. please, just go back to the hospital, or another one if that's possible, and make sure they understand just how bad you're feeling - tell them all the stuff you've told us here.

good luck. let us know how you get on.

 

[ladyB]

Cookie, hi, it's good to hear from you, although sorry you aren't feeling well.
I think danmans suggestion about another hospital is a good one. I've learned to go in and tell them what I want done. And then have them run tests or get a second or third opinion. Don't settle for less then what you are satisfied with, it's your life and your health.
Keep us posted if you can.

{{{HUGS}}}

 

[CookieCat]

Thank you so much for your support.

Unfortunately, going to another doc/hospital isn't an option. I live in a small town and the next hospital is more than a day's drive away.

I think I might see how I go tonight and go to the GP tomorrow if they are open and I am still no better. Its just so damn hard to fight for yourself and your right to be listened to and treated right when you feel lousy. But I agree with you dingbat, that the pain should have gone by now if it was 'just' the vovulous/blockage. While it is better, it is by no means gone. I just wish I knew what could be going on.

Thanks again for your support and feedback and also for the hugs - I certainly need them atm.

 

[CookieCat]

Hey Pen, I missed you too!!!

I am doing a little bit better today, thank god! I didn't end up going to the GP because it was closed but I think I will go on Monday if I am still in any sort of pain. This can't be normal.

I know it's a lot of painkillers, and I don't take them lightly... but I haven't had much choice. I also get side effects from that many painkillers - get itchy and my breathing feels 'heavy', but I would rather put up with the side effects than have to deal with the pain.

I haven't had a resection. There was talk about it - if for no other reason than to shorten my bowel so that it is less likely to twist and cause these problems. But the docs don't want to touch me with a barge pole when it comes to surgery because I am at high risk of infection etc. As it is, I am putting up with the pain of a large cyst on my left ovary from endometriosis - they don't want to put me under the knife even for that.

My gastro doc is away on maternity leave atm, and there is no-one in town to take her place. As it is, I didn't get the results from the tests I had done in December until two weeks ago - my GP finally tracked them down. They had been sent to the hospital, but because my gastro wasn't working they just got filed. Great system, huh? They didn't show much anyway, just 'some' inflammation. My GP said that it showed that whatever they were doing was working... but that was five months ago and I am now on 10mg less of Pred!

To tell the truth, I am sick to death of the lot of them! I know I should be pushing for answers, but I just don't have the energy. I can so understand where soupdragon is coming from on that score (have been reading your thread). It is so unfair that we should have to fight for what should be our right to fair and reasonable treatment.

I am hoping that I will feel better again tomorrow and that this will just go away. I am tired of feeling so sick - it puts my usual 'bad' days into perspective anyway!

Hope everyone else is doing OK. I have missed you all heaps.

 

[Kittee]

(((hugs))))

I hope you find some relief soon.

 

[CookieCat]

Thank you to those who bothered to reply to my post and offer support.

I am doing OK now, although it took a week to start feeling even semi-normal again. I still don't know what really happened there. I didn't bother going to my GP in the end - just too tired and feeling too crap to fight it out with her. I couldn't stand being told it was 'all in my head' or that I was 'just constipated'...

Pretty sure that the 'fecal loading' wasn't the cause of the problem, only a symptom. I have had the opposite problem ever since the enema last week and it doesn't seem to be letting up! Think it has more to do with the reduction in Pred. But hey, I am not a doctor am I? I just happen to be the poor sod who lives in this stupid body that is falling apart on me!

Sorry, not in a good space right now at all. But I wanted to post an update for those who might be interested or even care.

 

[ChefShazzy]

coooooookie cat! we care!! take good care of yourself, it will be better soon.

 

[CookieCat]

Thanks Pen and Sharon. Sorry I was just in such a funk the other day when I wrote. I feel embarrassed now. Things have been so damn tough, sometimes it is hard not to let it get to me. I guess you guys all know about days like that too though.

It does help finding out that other people have the same problems - not just with symptoms and suffering and depression and stuff but having to fight to get decent treatment. At least I know it's not just me. But why? Why do the docs make it so frickin' hard for us? I don't get that at all.

It seems so much easier to back into my corner and lay down rather than stand up and fight. All the docs from my GP and gastro through to my neurologist seem to be saying just 'put up and shut up' with it all. But I just keep on thinking that there's got to be more to life than this. I am not even forty and I am like an old woman and every day is filled with pain.

Tell me, has anyone out there got success stories of actually getting somewhere with the docs? And if so, how did you do it? I need some inspiration bad!

 

[Guest]

hey Cookie, i care too!

your hospital - do you know how the complaints procedure works? here, we can take issues higher, not necessarily have to file a complaint, but we can appeal for help with something related to the hospital via contacting the Trust’s Patient Relations Department. i just wondered if this might be worth pursuing for you, and maybe arranging to have a chat with the governing department, telling them the whole story...

 

[kello82]

jeez cookster, i dont know. my dad is REAL good at getting those people to listen to him. i will call my doc, basically get brushed off, then my dad will call them and well look at that, i have an appt the following day!
i have no idea how he does it, other than the fact that he is a 6'3'' big guy with LOUD booming voice and when someone tries to brush HIM off? well, sheesh they turn into a meek little servant real fast lol!! doesnt work so well for us who are little skinnie minnies, exhausted, and dont sound very threatening at all.

you know...even he cant get them sometimes though.
immediately after my surgery, when i was in the recovery room absolutely twisting in pain and waiting for new meds...the woman next to me needed an xray and the tech THREW one of those lead protectives things on me. right on my freshly snipped stoma and my chopped up abdomen. HEELOO!?!? of course i couldnt even speak with the pain that just seared through me, i just tried to lift the thing off of me.

later when my parents came in i squeaked out what had happened and my dad went over to a nurse and said "GET ME THE PERSON IN CHARGE NOW."
he told them and all we got was "well, its policy. we have to protect the surrounding patients...la de da de da....". no one even said sorry for the roughness of the xray tech.

soooooooo my point is that even the most assertive and take charge kind of people cant get through. i dont know what it is with hospitals and whatnot...but its unfortunate and i guess we just have to stand up for ourselves as best we can, huh?