So much pain

[allieinwonder]

This is a vent. Just sayin.

The pain in my abdomen is getting worse by the day . As you guys know, I am undiagnosed, so I have no end in sight. I am currently on tramadol for the pain (have been since September, but I don't take it every 8 hours, only when needed). Currently I am on 100mg, and I am still a 5 on the scale of a 1-10 in pain.

The fatigue is getting worse too...I barely want to do anything anymore. I want to sit at home and play computer games or watch tv. When I do go out, I am dizzy, tired, and in pain within a few hours. My husband and I went out to finish getting the furniture for our house today, and by the end of it I was doubled over in the car in pain.

I haven't gotten my results from the colonoscopy, the biopsies anyway. But from what he saw through the cam I don't expect anything to come from them. I have an appointment next week with my GP on base, and I don't know what to expect. I obviously will probably need more tests done, like the pill cam, and that will be another referral to a German GI, so it will be a month before I can get the test. And I am so afraid that that test wont find anything either.

Whatever is in pain...it just feels like something is seriously wrong. I've been limping around the house today because of it being so bad. We think its my small intestine now, since the colonoscopy showed nothing...I just hope this gets done sooner than later. I'm so afraid to get too worse too wait and end up in the hospital...the anxiety of being in a hospital where I can't understand what they are trying to say to me would NOT be fun!

My gut feeling (no pun intended) says this is crohns. People have told me since this started (6 years ago) that it might be crohns, and it just seems to fit. I just want proof so I can get treatment! If it isn't crohns, I KNOW something is wrong. This is NOT IBS. IBS would not ruin my body like this to the point where I feel like a cripple. If they figure out its something else, I will accept it with open arms. I just want them to figure this out! I am tired of doctors writing me off since I have had this for so long. It has only been this bad for a couple months. Its to the point where I cannot function. I hate when they say "Oh, you've had this for at least 6 years, you can wait a month more". NO!

I know you guys have times where the pain is bad and you are very tired. What do you guys do to help? Other than pain meds and caffeine? I am allergic to caffeine, and I used to take it in small doses and be fine, but now it makes the pain worse, the D worse, and the dizzyness worse, so I'm trying to avoid it. I also avoid the tramadol, because I hate how I feel on it, plus I don't want to get addicted to pain meds, you know?

 

[DustyKat]

Hey Allie,

I'm so sorry to hear you are going through this.

Although my kids have a diagnosis if they were in the pain you describe then I would have them at the hospital and in many ways I think the fact that you are undiagnosed is even more reason to go. I don't think it would be unreasonable to present as an abdo pain that has increased in severity over the last 2 months and then throw in after a while that you have had niggling problems for a some time but nothing like this! I know what you are saying re having to be in a hospital with a language barrier but it is sounding like you need something done sooner rather than later.

My son has just had a stint in hospital and I took him to emergency because of pain and the fact he could barely walk, he too had been limping and it was getting worse.

As to the dizziness, do you think you may be dehydrated?Could be another good reason to get seen to now.

I hope more than anything you get this sorted soon and find some relief and peace.

Thinking of you, :hug:
Dusty

 

[allieinwonder]

Yeah, I know the hospital might be the best...but I have actually ended up in the ER from this pain 3 times now, and every time they sent me away with no answers. Granted, this was in the US, but I just don't want to waste my time again. The first and second ER just did blood tests and sent me away, saying I wasn't dying, and the third did a CT scan and said there was no physical reason I was sick. So at this point I'm trying to do it a more conventional route.

I did tell my husband tonight though that we need to get everything ready in case I do get worse, because I'm afraid with how slow this seems to be going that I will end up there before getting actual treatment...and the thought really does scare me!

 

[StarGirrrrl]

I can't offer you anything but hugs, I am pretty much going through the same as you right now. My experience with the ER wasn't good either and I am not keen to go back.

My fatigue is awful, on top of my ME, and I've just learnt to go with it, and I sleep every afternoon. I have no life as a consequence and ghet depressed, but in a way I cope better most of the time when i'm not fighting against what my body is asking for. The codeine I take for shoulder doesn't touch ab pains and neither did Buscopan. The Hospital never sent through the request to change the latter so I don't get anything for mine right now. I just try and cope as best I can.

If you need your pain meds then please take them. I worry about getting addicted to mine (joint pain) too but right now my need outweighs my fear!

I know it's hard when you're so ill but try not to go looking for problems, wait until they find you. Remember the biopsies are to check for microscopic problems which wouldn't be visible to the naked eye.

One thing I can suggest is when you have the next test arranged, ask that Dr presumes it'll be clear and arrange the next test or test(s) at the same time so you have all your appointments.

Now you mentioned a GP. Is it possible to change and see someone who is more proactive and supportive? And if you're not seeing a GI, ask for a referral while the tests are ongoing GP end, so things don't get overly delayed.
Sorry I can't be more helpful.

 

[allieinwonder]

I can't offer you anything but hugs, I am pretty much going through the same as you right now. My experience with the ER wasn't good either and I am not keen to go back.

My fatigue is awful, on top of my ME, and I've just learnt to go with it, and I sleep every afternoon. I have no life as a consequence and ghet depressed, but in a way I cope better most of the time when i'm not fighting against what my body is asking for. The codeine I take for shoulder doesn't touch ab pains and neither did Buscopan. The Hospital never sent through the request to change the latter so I don't get anything for mine right now. I just try and cope as best I can.

I know it's hard when you're so ill but try not to go looking for problems, wait until they find you. Remember the biopsies are to check for microscopic problems which wouldn't be visible to the naked eye.

One thing I can suggest is when you have the next test arranged, ask that Dr presumes it'll be clear and arrange the next test or test(s) at the same time so you have all your appointments.

Sorry I can't be more helpful.

Thank you for the advice! Lining up more than one test actually sounds like a great idea...

Yeah, I am calling the GI tomorrow to hear the results from the biopsies. I could have called earlier but I'm nervous about them...I know they could show the bacteria, and that the massive pain I'm in could be where they can't reach, but I don't want to get my hopes up. I've been let down too many times lately!

I know what you mean about the having no life thing...and it really sucks. Before this got so bad I worked full time, went to school full time, was president of a sorority, etc. I was a workaholic! Now I live in Germany with my Army husband and I don't do anything. I guess I'm a housewife, but I don't do anything for the house so..yeah..lol. I have had depression issues because of it too. But when I try and change it, my body shows me that it just isn't possible right now. I'm just too sick. So my husband and I have decided I'm spending tomorrow in bed...I've spent most of my time in bed since last Wednesday, and it just seems to be the better solution right now, no matter how much I hate it. At least I have easy access to a bathroom, right?

 

[StarGirrrrl]

. But when I try and change it, my body shows me that it just isn't possible right now. I'm just too sick. So my husband and I have decided I'm spending tomorrow in bed...I've spent most of my time in bed since last Wednesday, and it just seems to be the better solution right now, no matter how much I hate it. At least I have easy access to a bathroom, right?

That sounds like a wonderful idea to me, think I will copy because I had a couple of hours sale shopping today and I am wiped out, totally!

Fingers crossed for your biopsy results, I will be thinking of you tomorrow! Mine should be back in 2 weeks or so I think. My visual was normal too. Here's hoping for both of us, I totally get what you mean with the "been dissapointed too many times".

 

[allieinwonder]

I will keep my fingers crossed for you too!

 

[Doglover]

Allie,

I am so sorry that you are feeling so "blah." I wish I could offer some advice on dealing with the pain. I was diagnosed with mild Crohn's disease, and until a few days ago only had stomach pain for short amounts of time. On Sunday, I had horrible pain all day and wasn't able to eat or drink anything. For once, I was wishing I could just go to the bathroom for some relief;-). After about 8 hours, I called my husband to come home so he could take me to the ER at the advice of the GI on call. Miraculously or thankfully, the pain subsided by the time he got home and I didn't go to the ER. It sounds like that may have been unproductive according to some of the posts I've read. The best advice I can give is that you know your body better than anyone else and you have every right to be persistent with regard to your diagnosis and treatment. I'm one of those people that doesn't seem to fit the mold with regard to the standard "tests" and it took years for me to get to the GI for a diagnosis. I finally just referred myself to the GI doctor and am glad that I did.

I hope you get some answers soon and feel better each day!

Doglover

 

[Silvermoon]

Sleeping is the body's way of telling your brain "OK I've had enough and I need to rest and heal a bit, so you are going to sleep now" ... lol. With all the crap (no pun intended) that is thrown at our bodies, and all it is trying to deal with, there is no shame in spending the day in bed to let your body try and heal a bit (of course, I am better at GIVING advise than taking it myself, but after 25 years, I am starting to learn lol).

As for the pain medication, the first step to not becoming addicted to it is being aware that it could be an issue. You are very aware you don't want to be addicted, so you are going to know what to look for. However, right now, with the amount of pain you are in, it is better to control it rather than let it get to bad and try to bring it back under control. So take your pain meds on a fairly regular basis. Keep your pain under control so it doesn't get away from you. If you do happen to become physiologically addicted to them, you can deal with that after.

As for the depression, I wish I could help you more other than offering a sympathetic ear to listen and a big shoulder to cry on. Anyone who has to go through all the crap we go through is going to get depressed. Not only is the pain exhausting and causing you to be sad and angry, but there are also chemical reactions in the body due to our whacked out systems that are going to change the chemical processes in the brain that keep us sane. Again, no shame in asking your GI or GP if an antidepressant could be prescribed for now. If you are like me, you hate the thought of adding yet another medication to your regime, but sometimes we all need a little bit of help once in awhile......

Sending healing thoughts and squishy hugs......

 

[StarGirrrrl]

Any news on your results?

 

[allieinwonder]

nope it seems like they are taking forever to send the results of the colonoscopy to my army GP. They say they should be in for my appointment on Tuesday though *crosses fingers*

I did end up sleeping the day after I originally made this thread, lol. It did help build up my strength a little. With the pain medication, I only take it maybe every three days or so to give myself a break..with three months straight with this stuff, I really don't want to get addicted.

 

[StarGirrrrl]

I can understand that ailenwonder but as another member said it's good you are aware of the dangers so please please take it when you are in pain. You can easily self monitor.

 

[allieinwonder]

Yeah, I take it when the pain is pretty much not tolerable anymore. I was taking it pretty much nonstop back in October (my pain is pretty much been persistent since September, worstened by certain foods/movement/eating in general), which was suggested by my psych, who I was seeing because of the situation health-wise and being alone here because of my husband deploying. Towards the end of me doing this my body was starting to get used to them, so the dose I am on (50mg) wasn't doing anything for the pain, just helping the D. I weaned myself off slowly to make sure my body didn't freak out, and now I only take it when it is just too much to take or I can't get the pain to subside by resting/not moving.

Like everyone else, I just can't wait until I wont have any nasty symptoms to cover up with serious pain meds!

 

[StarGirrrrl]

Fingers crossed for Tuesday! Mine will have been 2 weeks Wednesday but with all the holidays more like one working week. Still going to ring up and see if they are in though, getting impatient too!

 

[allieinwonder]

Thank you so much! I'm calling the actual doctors office tomorrow to see if they know the results, I don't think I can wait till Tuesday, lol. The holidays have made this seem so long!

Fingers crossed for you too!

 

[allieinwonder]

So I went to my appointment today. No test results as of now. They said once the doctor send them they have to be translated, so this process is extra slow. Plus, the clinic I went to is on a different base than when I got the referral, so they think that base might have the german results, but just haven't gotten around to translating them into english and putting them on my electronic record.

The doctor said if the results come back as everything normal, she wants me to drive to the military hospital for a second GI opinion. Its four hours away. She said the only other test they will even consider is exploratory surgery. We asked about the pill cam (my husband was in the room), and they said that they probably wont even consider it. She did, however, do blood tests to check my thyroid function.

I guess I am calling the other base tomorrow and seeing whats going on. I am really hoping his full report has solid recommendations...the best thing that could happen is that the biopsies showed something!!

They refilled my Tramadol, saying I need to stay on it until this gets figured out.

I'm crossing my fingers that it gets figured out before I need to return the states to graduate from college! (I'm going back in August)

 

[mizgarnet]

allie- Please beg, plead, bribe, the doctors to check your protein levels- and other nutritional needs. The limping could be from low levels. Doctors seem to overlook this. It is a simple blood test.

Hugs!
Wendy

 

[allieinwonder]

Thank you for the suggestion! They did draw blood yesterday to check nutritional levels and thyroid function. The limping is only when I'm in extreme pain though, but it never hurts to check.