What would you do?

[allieinwonder]

Ok, so if you don't know, two months ago I was rediagnosed with severe IBS. The GI who did this did not do any tests than blood tests, and my small bowel was never checked.

Well, about a week and three days ago my pain started to get worse. It feels like a gaping open hole, middle left side (looking down on my own abdomen). It got to the point where I can't function, and my body doesn't seem to want to absorb the pain meds I am taking. I have a giant crack on the corner of my mouth, which I have been told means malnourished/ vitamin B deficiency. So thats why I think the pain meds aren't working...anyway, I am in severe pain, severe D (past few months 8 - 12 times a day). The spot that has been in pain is also now swollen and hot to the touch compared to the rest of my body. I am also not eating much due to the pain and nausea (my husband makes me drink lots of gatoraide though).

My GI did not plan on seeing me until May since the meds he put me on aren't working (amitryptiline). We called him on Monday and told him my symptoms, and he is worried about the swelling and heat from my belly. He suggested we go to the ER to get me on pain meds and to make sure there wasn't anything serious going on.

OK, so obviously I didn't go. It hasn't gotten any better since Monday. The reason I didn't go is because I have been to the ER three times because of this illness, and they sent me away saying there was nothing they could do; one time they even refused to help my pain. Also, I am from the US, so I am nervous about going to a German ER. We could travel 3.5 hours and go to the military hospital, but my husband and I know that isn't practical. I do not speak German very well. German ER's also keep you for a long time compared to the US...my husband got a concussion and they kept him for 24 hours and ran at least 5 different tests on him.

If I could get treated, after a year of this agony, I would go...but I do not want to go if it is just going to be more torment than its worth. My husband and I both know I'm getting worse, and thats why I'm asking you guys, since I really still think its an IBD they can't find proof of.

So, if you were in my shoes, would you go get help? Do you think it will pass? Have you been in this situation and the ER helped, maybe even helped you get a diagnosis? I kind of want to know what chronies think is the time that the ER is necessary and needed I guess.

I am afraid something is seriously wrong, but I have been rejected so many times by so many doctors that I don't know if I can go through that again....

Thanks so much in advance. I'm a little confused and scared, and I know you guys are great at this kind of stuff.

 

[Cat-a-Tonic]

Allie, this sounds bad. I've never had a warm spot in my belly so I don't know what that means, but it sounds bad to me! I know that hospitals in the US offer translation services over the phone for non-English speakers, maybe the German hospital would offer something like that? At any rate, even with the language barrier, they should be able to feel the warm spot on your belly and know that things are very wrong, right?

If it were me, I'd go to the ER. If the German ER can't help you, I'd drive as fast as I could to the military hospital. Whatever is going on in your body, it sounds like it needs attention sooner rather than later (and it sure doesn't sound like IBS!). I haven't been in your situation, neither the belly warmth nor being ill in a country where I don't speak the language, but if it were me I would want to be seen. If you've got malnutrition bad enough for your mouth to crack, then something surely should at least show up on a blood test, and I would think that whatever is causing the heat in your belly would hopefully show up on CT or MRI.

I'm sorry I can't be more helpful, but I am worried about you and I hope you get some help and relief soon! It sounds awful! Hang in there, I'll be thinking of you. Please post an update so we know how you're doing and if you went to the ER.

 

[sherry3535]

I agree with Cat and think that you should go to the ER! I have been going through something very similar to you, and i was advised to go to an ER in Boston! I have not gone yet, because i just keep thinking that i am going to be brushed off and sent on my way! But the last couple of days i have been in so much pain in my stomach and rectum, every bm kills again! I cant take it anymore so i am finally going to go to the ER in the morning! I have it all worked out with help with my kids and someone to bring me1 I am very nervous, but i just hope and pray that they can help me start to get better! I wnated to tell you all that because i am worried about you and hope that you decide to go to the ER! That warm spot really concerns me as well, and your other symptoms! i just know i am at my wits end and i am like my health is way too important! PLEASE GO! Keep us posted! I will be thinking of you!
(((HUGS))

 

[Grumbletum]

Oh Allie, I think enough is enough, hun Have you been to the military hospital before? I know you've not got a lot of confidence in the ER that you've been to and unless maybe you have a German speaking friend that could go with you, I think I would take the long trip to the military hospital.
You're obviously getting very run down physically and mentally and these new symptoms do not sound good. I know it is even more impractical, but if I was feeling the way you are, my instinct would be to fly home to get some help. Is that totally out of the question?

 

[nomad]

Dear allieinwonder, if I was in your situation I would go to ER right away and make sure they understood your level of concern. The alternative is this agony of not knowing what is going on, which to me sounds worse than any visit to ER...

Language barriers can be overcome in these situations. And what you describe about their "over"-concern with your husband, to me it actually sounds like a good thing...

Best of luck!

 

[Astra]

What would I do?
I'd go home.
hope you get something sorted soon Allie even if it means a foreign A&E, good luck
xxx

 

[peaceandsmile]

Hello there,

I am really sorry you are undergoing such pain and problems, unfortunately I do not know anything of heat and swelling in the area either, but I have to agree with Cat, I would do whatever it takes just to get better. So I also recommend you to go to the ER, if they cannot help you, then to the Military or German hospital. Good luck and best of wishes. I hope you will get better soon. Please keep us updated.

kisses and hugs, Aya

 

[ameslouise]

I'm with everyone else - ER if you feel you can get the help you need, if not, drive the 3.5 hours, if you feel you can make it.

A "hot spot" most certainly means a fever or localized infection. It is not a good sign. Don't mess around with this. At the very least, you should probably be on antibiotics.

Good luck - please let us know how you are doing.

- Amy

 

[Cat-a-Tonic]

Allie - I haven't seen you on the forum today so I am hoping that means you went to the ER or the military hospital? Please update us when you are able to so we know you're okay!

Amy - thanks for clarifying what the hot spot would mean. Sounds like attention is definitely needed quickly if an infection gets so bad that it is hot to the touch.

 

[allieinwonder]

Wow, I have to say this support forum is woderful. Thank you for the support and I am very grateful.

I ended up in the german ER 12 hours after I posted this. They kept me hostpitilized until today. It was not a fun experience to say the least. The er thouroughly examined my stomach by hand and said "bowel inflamation" and in minutes I was hooked up to an iv of fluids and pain meds. They told me they were admitting me and I was put in a room upstairs. They started tests yesterday, an upper endoscopy and ultrasound. Both normal. Colonoscopy was suppose to be today, but last night I was throwing up the prep meds, and I started to throw up blood and they realized they had done damage during the endoscopy. I drank water and prepped for the colonoscopy anyway, but then they decided they wouldn't do it since I didn't drink the liquid they wanted me to drink (whatever was in it was agrivating the endoscopy wounds, as soon as I drank a sip I would vomit). I had gotten the other meds down fine and the water had worked (which is what I had done last time and my bowels were clean), but they refused. I asked to go home because they were not going to do any more tests and I knew the probability of finding something via colonoscopy was very slim (the swollen and warm spot is higher than my colon, probably small bowel which has never been tested). the doctor said I must have ibs because I am married to a soldier, which made me very angry because I have had whatever this is for 6 years. I was basicaly at square one and fed up, and wanted to go home.

Well, the head dr, the boss of the one who had said ibs, came in and said we would like to do a pill cam. I was relieved, but I knew that I would end up not eating again for the prep, and at this point I had been prepping for or doing tests so I hadn't eaten for two days. He said he wants to eliminate the possibility of crohns in the small bowel, when the other doctor said he wouldn't do it(he was in the room at this point and was very mad). I told him I would love to but I was losing a lot of weight and didn't think I could go through it now, and he said we will discharge you and do it as an outpatient procedure. Finally, a doctor is not dismissing me. I really hope my military insurance approves it!

I wish they had taken a better look at that certain spot though. The only meds they would give me is pain meds until they could prove something. My blood tests were fine though, so I think infection is out of the picture. I just hope I can get that pill cam, and I hope it shows why I am always in pain there, along with all my other symtpoms! Living without a treatment for whatever this is is really starting to wear me out.

I agree with you cat, it doesn't sound like ibs. That's why we went. Swelling and fever because f a brain to gut problem? I don't think so. Add the malnutrition, mucous/black stools, etc...it just doesn't make sense. I'm hoping I'm onn the road to figuring it out though!

 

[Cat-a-Tonic]

Allie, I'm so glad to hear you might finally be getting somewhere! I really hope you are able to have the pill cam. And it's so good to hear that the head doctor didn't brush you off as having IBS! I swear most doctors seem to ignore the diagnostic guidelines for IBS, the ones that say that things like weight loss, bleeding, fever, etc are NOT part of IBS! I've actually had to explain that to one doctor when I went to urgent care once, he told me I have IBS and as I was explaining to him why I don't have IBS, he cut me off and said, "I don't know that stuff, I'm not a gastro doc!" and then he walked out of the exam room before I had a chance to say anything further. I would have said, if you don't know the diagnostic criteria of IBS, then don't tell people they have IBS, stupid quack! Sheesh!

If it might help, here's a link I found showing what's NOT part of IBS (look towards the bottom, the heading about Red Flag symptoms):
http://www.helpforibs.com/footer/rome_guidelines.asp
I know I saw a different link at one point that included frequent dehydration as another thing that is not part of IBS, but I can't find that one now.

Anyway, I'm getting off track here, but I'm so glad to hear that you're hopefully getting more testing and finally have seen a doc who is taking things seriously! That's wonderful news!

 

[allieinwonder]

Thanks cat. I agree, I have many symptoms that aren't IBS related. They actually saw slight inflammation markers in my blood at the hospital but ignored them (well, the one dr did anyway when he said this to me when he was refusing the colonoscopy). ~.~

My regular GI also seems to miss that I have signs of crohns of small bowel that doesn't match up with IBS. He can see from previous doctors appointments (military keeps all health records together from every kind of doctor, its actually very convenient) that I lost 10 pounds in a short amount of time, then I keep telling him the mucous and the dizzyness and the hair loss and the pain...and it just doesn't seem to get through. I'm hoping this GI saying "we need to look at her small bowel" gives the push to get things going! We were going to push for either trying a treatment(thats not amitriptiline) or small bowel test. Hopefully this will get some answers!

 

[Grumbletum]

Poor you, that was a bit of an ordeal! But it sounds like maybe, at last, you are getting somewhere. I really hope they do the pill cam too and the fact that Crohn's was mentioned as a possibility is encouraging.
OMG, only here could we be pleased to say something like that, but you know what I mean. Hope you're resting up after all those tests. :rosette1:

 

[tiloah]

AUGH I can't believe it could be so bad they would hospitalize you and they are still pretending it's IBS. Sometimes I think these docs are sticking their fingers in their ears and going "LALALA IBD doesn't exist."

I hope they figure this out for you soon. Have you ever had a CT or something? That seems to be the standard at my GIs office to see what kind of inflammation you have going on. I hope your endoscopy induced wounds heal up and you get to do some tests that show what the heck is going on with you.

Hold on, you're so close! My thoughts are with you.

 

[allieinwonder]

I completely understand with that statement. Whenever a doctor goes, "but its good that we didn't find anything, nothing is seriously wrong with you!" I think, "um, no, it means I wont get better because you will think its nothing".

Yeah, the upper endoscopy was the worst part. I actually woke up halfway through and threw up in my hair (spit...nasty >.<). I am still having issues keeping anything down (or bad D 10 minutes after eating), and the colonoscopy meds are done, so I think I will need to heal from the damage of the that test.

 

[allieinwonder]

AUGH I can't believe it could be so bad they would hospitalize you and they are still pretending it's IBS. Sometimes I think these docs are sticking their fingers in their ears and going "LALALA IBD doesn't exist."

I hope they figure this out for you soon. Have you ever had a CT or something? That seems to be the standard at my GIs office to see what kind of inflammation you have going on. I hope your endoscopy induced wounds heal up and you get to do some tests that show what the heck is going on with you.

Hold on, you're so close! My thoughts are with you.

ha ha I agree too. Like I said, even my regular GI seems to be doing that. So annoying! I keep telling them that I'm not trying to act crazy, I'm not trying to get attention, something is wrong and it needs to be addressed!

I have had a CT, last September in fact in an ER in the states. They said it looked fine and I was sent home. They used that info this past weekend and didn't do another one due to radiation issues. But the ultrasound didn't find anything (and I made sure he went right over the swollen spot).

 

[Cat-a-Tonic]

Whenever a doctor goes, "but its good that we didn't find anything, nothing is seriously wrong with you!" I think, "um, no, it means I wont get better because you will think its nothing".

I know exactly what you mean! When they've said to me that they didn't find anything and therefore I'll be fine, I've thought, "Oh no, that means I've got something so bad that it's literally evading detection!" and I've also thought, "If I'm feeling this bad now and they can't find anything, how much worse do I have to get before this shows up on a test??"

 

[allieinwonder]

I know exactly what you mean! When they've said to me that they didn't find anything and therefore I'll be fine, I've thought, "Oh no, that means I've got something so bad that it's literally evading detection!" and I've also thought, "If I'm feeling this bad now and they can't find anything, how much worse do I have to get before this shows up on a test??"

This is a perfect sentence for the situation!

I just translated the letter the hospital gave me and it says examination of small bowel is needed via pill cam to ensure crohns disease is not present. I squealed it made me so happy. The biopsies from the endoscopy haven't come back yet either so I'm hoping that will show something (but I doubt it since they didn't see anything).

 

[nomad]

This sounds like progress, Allie. Keeping my fingers crossed!

 

[peaceandsmile]

Your poor thing, having to undergo so much! I really do hope the pill cam will show something. I cannot believe the doctors are being so ignorant in a sense as to what could be a serious dilemma, like Crohn's, which it is. I wish you the best and hope you will be able to recover soon. Whatever you have should be treated immediately, its dreadful how much you have to suffer in order to get some proper treatment!I am sorry you had to suffer so much otherwise, I hate upper endoscopies myself! I nearly, literally died in my first one, my doctor kept telling me to breath as I was unable to; I threw up as well afterward, its just miserably horrible.. Anyway, take care, keep us updated!

kisses and hugs, Aya

 

[ameslouise]

Good luck with the pill cam, Allie. And I DO hope they find something, but only so that you can get on the road to finding something to make you feel better!

Take care - I hope it passes easily!

- Amy

 

[allieinwonder]

nomad - Thanks!

peaceandsmile - thats horrible what happened with your upper endoscopy! When I woke up I'm pretty sure they injected me with more meds since they were not anywhere near finished. I never opened my eyes, but I remember feeling the spit in my hair and them telling me everything was going to be ok. I understand with the healing part, which is exactly why I didn't stay and get the pill cam now, because I need to heal from the endoscopy. Whats funny is my last upper endoscopy I didn't even realize they did it until they gave me pictures of my stomach (they had done a colonoscopy at the same time).

Amy- Thank you! By the way, I love your signature. I hope the walk goes well! I would definitely join a walk in the states if I was still there. In a few years I guess!

 

[TheMrs]

I'm sorry that happened to you. My second round of 'oscopies were done in the docs office instead of the surgi center and my body doesn't "take" the demoral/versed combo so I was awake and alert for both. The upper was much worse. They started and I said "I'm awake!" and the doc said, well we already started, might as well finish! I also gagged all over my hair and the dumb nurse said "oops I meant to tell you to put your hair up!". All chipper like. Grrr.

 

[allieinwonder]

I'm sorry that happened to you. My second round of 'oscopies were done in the docs office instead of the surgi center and my body doesn't "take" the demoral/versed combo so I was awake and alert for both. The upper was much worse. They started and I said "I'm awake!" and the doc said, well we already started, might as well finish! I also gagged all over my hair and the dumb nurse said "oops I meant to tell you to put your hair up!". All chipper like. Grrr.

oh my goodness. I would have screamed and gotten them to stop...just the little amount I remember of gagging and moving is enough to give me chills. That nurse is also not nice. :/ I didn't put my hair up either, and I regret it because of the spit situation. >.<

 

[TheMrs]

I've since fired that doc ( for multiple reasons) and the last round I got I was nice and asleep with milk of amnesia! (propofol). It really was awful, the colonoscopy wasn't as bad, I guess cause there's no gag reflex? . I did however watch the whole thing on the monitor which was very strange.

 

[Debbie]

I have often wondered why it is so hard for some Doctors to admit you have crohns.They have no idea how painful this disease is or they wouldnt dismiss it as no big deal as some of them do.Believe me I have had some of those Doctors over the years.I have great Docs now,thank goodness.I have cancer now thanks to crohns,so yes it is a very serious disease with many,many complications.You keep fighting till someone finds out whats wrong with you,this is your life.I wish you the best and hope you get answers soon.