This is long I know but sooo informative.

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New Member

Date Joined Oct 2007
Total Posts : 3
   Posted 10/20/2007 1:20 PM (GMT -7)   
Hi everyone...You probably do not recognize the name too much, because I had to change it. Something happened with my old information and I couldnt use it to log on. But all seems to be okay now. (I used to be always 911)
I just wanted to share some information with you that has happened to me, because it just may save you as well as it saved me. In all actuality, and I truly mean this as no joke, if I didnt speak up repeatedly, and really keep bugging the doctors and refusing to leave the office until what I wanted done was done. I know that sounds crazy and a bit harsh but let me explain.
 For a year,A WHOLE YEAR, I have been complaining to numerous doctors, first my GI, then he sent me to a blood specialist, then he sent me to another blood specialist, (this was all because my right hand every morning when I would wake up was so swollen and sore I couldnt move it until I got up, took a water pill, and some Tylenol and then it would feel better) but anyway, they send me everywhere, and not one of those doctors ordered any tests.  They all told me I was retaining water from my hysterectomy, I SAID IN ONE HAND? WHAT KIND OF SIDE EFFECT FROM A HYSTECTOMY IS THAT? Now what is wrong with that? I'll tell you, its unforgivable, that when someone really does appear to need further investigation, they should get it, no matter if you have ins or not. Now I do have Medicare, but some people do not have anything. Does this mean then they have to go to the county hospital and probably not get the tests needed to determine the underlying cause of their condition?
So I finally got my way, and I told them I wanted a doppler, they said you cant just pick what you want, I said yes I can. I have researched that and I know if you do it this way you will find your answer. (Now keep in mind I have had Crohns for over 20 years and in the hospital for the past twenty years they have never been able to start and IV line on the first try, second, third, fourth, fifth, and so forth. This is very hard on the veins and can cause many problems. So they did the doppler like I asked, I said Thank you and home I went. I was home about 30 mins when the phone rang and it was my doctor telling me in a bit of a frantic tone, he asked how fast can I pack a bag for a week and get to the hospital, I said its going to take a little time I have to find someone to keep an eye on my daughter if she needs something,and I have 3 dogs.He said as soon as you can get here, get here fast. I had no one to drive me and I was a complete reck because when I said I have a right to know what you found and why you are admitting me so fast. (I already had a private room ready for me) I said what did that doppler tell you. He said I have a huge bloodclot that is moving along my blood stream and it is headed for my lungs. I started to cry and they I got angry.So I went to the hospital and started treatment right away, thats Levinox shots in the stomach , and coumadin. It appears to him and the other doctors that looked at me that it started in the wrist area, IV sites and has been traveling. Great just great professionals, if little ol average me didnt tell you what test to run I wouldnt be here today giving you this information.
Okay I go home on coumadin, have to go to the clinic several times a week to makesure it is breaking down the clot. I seemed to be okay so they stopped the coumadin.
2 months ago I was admitted for Crohns problems(again, now remember I went home after the bloodclot insident) and was treated like a drug addict, I oveheard the nurses who were outside my room call me that. Reason being is because I take Dilaudid, every 4-6 hours. Now for 20 years they have been searching for a medication for pain for me that agrees with me and doesnt make me vomit for hours on end. So I wasnt too happy about that and the fact that every time I pushed the nurses button they would turn it off at their nurses circle. This is a very serious issue that yes I have called the hospital and emailed them what happend. They also found Pnemonia that visit so they had treat that as well.
Now just about three weeks ago I was in there again(third time back now) not feeling well and tests came back Pnemonia again. I guess the course of action they used at the time wasnt strong enough. Now I know that I have to take my Dilaudid, every 4-6, my Ativan every 4-6, and then my other meds can go together but not on an empty stomach.The Dilaudid can, because it works better an faster on an empty stomach cause a full stomach absorbs the medication and you dont get as good results. Now I am in the ER for hours not being given any of my meds even by IV if you cant give the PO (orally), nope they didnt give me anything.So now I am going to start withdrawals from the lack of Dilaudid. Which of course as we all know needs to be weaned down. (By the way my GI doc told me to see a pain specialist before any of this happend and I did and he had me taking up to 20 miligrams or  so of the Dilaudid) Needless to say I wont be seeing any pain specialists anytime soon. So here I am not only dealing with the symptoms of why I was brought in in the first place, but with withdrawals also.This particular hosp put me in yet another private room and left me in there alone, it was dark, they said that was better for my right now, they gave me a basin,some ice chips, towels, and a bed a bedpan. I didnt understand this yet but I learned real quick, they were going to do something that  is very bad and I let them know it.  I threw up for hours,partly because of all the aggressive antibiotics they were putting in my bodyfor the Pnemonia and then the medicine, which again I dont understand because they have the prescription pad not me and I only take what they tell me too. . These people are nurses. They should know you never do this to someone, especially with a chronic illness such as Crohns Disease. I even soiled the bed and told the nurse and she said she was going to come back with some fresh linens and a fresh gown so I could freshen up after all that vomitting .  Snever came back and I kept hitting the nurses button and no one came I was shivering from lashying in the mess I made, finally some one came in and said really calm, after I asked what happend to the nurse that was supposed to help clean me up? She said shift changed at 7 which was 2 hours ago and she left.So I finished out my stay there and went home. I was back again about a month ago with Crohns symptoms again and they again found Pnemonia. I forgot to mention the last time before this time in the hsospital I asked them to insert a port into my arm so they can use that instead of having to stick me so many times, so I did have one inserted, its under the skin and when they have to start it it hurts really bad but I would rather hurt once that 12. The person that had to get it started was the doctor that originally started it and put it in cause the nurses couldnt do it, so they got very mad when they found out they needed to take a mandatory class on insertion of the needle into the port. The port wasnt working very well it would take the meds but not give blood, but I could live with that. The doctor said he will look at it in a couple of weeks but it will be find for now. Well the next day I was discharged andthey had no idea I was  to come back so fast with recurring Pnemonia. I had to go back to surgery and the doctor got the port started for me.. It still doesnt give blood but it takes medicine just fine. It could also have something to do with the fact that when they put it in, they hit like a roadblock and I was told that the doctor had to open me up with a balloon like they do in heart surgery. I went back upstairs and they were not happy with me at all cause they were all told they needed to take a class on how to get these ports started when they are not in the chest.
Now this brings me to almost the conclusion, (can you tell its been a long time since I have been here on the forum)  I was feeling pretty good, but said (okay you can laugh if you want) I WANT A DOPPLER. The nurse said oh boy not this again. I said listen lady I found the first one that brought me here no one else did, and I am telling you I feel the same way now that I did then. So they did send me down and a really nice tech was rolling along there and then stopped and said "sweetheart are you breathing okay and I said no, I am out of breathe, why? He gets up and all I can hear is code blue in ultrasound, cold blue in ultrasound, THATS ME.....Oh my goodness.... So he came back in with other people and hooked me up to oxygen. GUESS WHAT EVERYBODY? I HAVE ANOTHER BLOODCLOT BUT THIS TIME IN THE OPPOSITE ARM. AND IT IS PRESSING ONMY LUNG WHICH IS CAUSEING ME TO HAVE LOW BREATHE SOUNDS AND TROUBLE BREATHING SO IN OTHER WORDS, I COULD HAVE FALLEN ASLEEP AT ANY GIVEN TIME AND THEY WOULDNT EVEN KNOW IF I WAS OKAY OR NOT. So that made my stay longer but now I am on coumadin again. Now listen, I made a decision that does not mean you have to (ladies) I have been on HRT for 6 years from a complete emergency hysterectomy. I decided to stop the HRT because I had a gut feeling that it had something to do with these bloodclots an high BP. Stopping that HRT is a personal choice and only you an make it after you weighed all your options. Yes it is very uncomfortable, hot, hot cold,cold, etc terrible but it has been 3 weeks and I havent taken it. That is scary though because I do have osteopenia which is a form osteoporosis, and having a hysterectomy can have an effect on your bones, making them more brittle. I dont know if you remember but I had surgery fro TMJ and the HRT was helping bones, but I believe may have been slowly killing me, little warning signs like short of breath,bloodclots, tightening in my arm, chest pains, etc. These need to be payed attention to and monitored. Plus brittle bones, I should know because  (laugh) I fell down the stairs here and broke my foot, crutches for the next 8 weeks. So now I am currently still taking the Dilaudid, 4 mgs every 4-6 hours, and the rest of my meds including coumadin. Oh I hope all of you are having a better time of it than I am.
Just to really put a spin on things...ready?The people that I live with after I got divorced and couldnt afford the house on my disability wages, have evicted me because I am too much of a risk to have around. So now I am frantically looking for a place to live,for me, my daughter, and three dogs. I do have a little money left over from the divorce but now enough to live on. So I am working with a realtor that is a friend and hopefully something will come through fo me. Say a prayer, because I really need to have a break here.
Thank you all for letting me post this long, it felt good to get that all off my chest.
I hope all of you are doing better.......Jetty

Regular Member

Date Joined Jun 2006
Total Posts : 267
   Posted 10/20/2007 2:07 PM (GMT -7)   
Oh my goodness cutlass, aka 911, I can't believe you have been thru such a horrible ordeal! I would be livid at the health care professionals "treating" you, that's just insane. You could have died if you hadn't insisted on the doppler, but they wrote you off an a hypochonriac or neurotic or something...that's absolutely nuts. When are health care professionals going to realize that we (the patient) know our body better than anybody and we should be taken seriously!? I am so sorry that you went through all of the trauma and pain you've experienced of prayers are with you and your family that your health will improve and you will find a place to live. Please take care of yourself.
38 years old, dx with Crohn's disease March 2006, currently on Humira, Entocort and hydrocodone (for pain), and Effexor

Veteran Member

Date Joined Apr 2006
Total Posts : 1885
   Posted 10/20/2007 3:34 PM (GMT -7)   
Thanks for sharing. I had no idea what a doppler was. 

Veteran Member

Date Joined Dec 2006
Total Posts : 1986
   Posted 10/20/2007 3:39 PM (GMT -7)   
Well my hospital now has a standard of giving coumadin for most patients in the hospital because of inactivity. I had it post surgery and had huge bruises all over my abdomen. My nurses freaked out every time they saw them.
49 years old, Crohn's Disease   
Six resection surgeries, permanent ostomy, adverse reactions to Remicadeback on 6MP for maintenance, hoping for a long remission from this last surgery. 

Veteran Member

Date Joined Sep 2006
Total Posts : 2527
   Posted 10/20/2007 7:49 PM (GMT -7)   
I never knew what a doppler was until I worked in an animal hospital. we use it on all our surgical patients. I no longer work there they said after my 3 CD surgeires this yr I was a liability to work there as a vet assistant. While in the hospital I did see dopplers but didnt know they could detect clots. At the animal hospital you use a doppler with an infant BP cuff to take an animals BP with a different type of reading gauge.

I hope things start to look up for you soon, hang in there. I myself had complications with all 2 surgeries this yr resection, colon didnt wake up 1 week later temp ostomy, abscesses etc after that one. HAd the reversal and the CD is back already (reversal was in June) and now I have a fistula) the sond Stronger by Kanye West (even tho I am not a big fan of him I like the refrain just cuz I think it should be my anthem and probably many mroe of us as well.
Dx with Crohn's 1987, symptoms as early as 1984.
Temp iliostomy February 2007, reversed June 2007, Ovarian cysts, migraines, allergies (incl food allergies) , oral allergy syndrome (diff than true food allergies), Asthma, Gall Bladder removed 1999, Inguenal hernia 1987

Veteran Member

Date Joined May 2003
Total Posts : 9448
   Posted 10/21/2007 12:54 PM (GMT -7)   
You know Cutlass, since you get such "good" (tongue in cheek) medical care, you might want to suggest they run the test for the blood clotting factor - I've forgotten the name - that some people have that causes a high tendency to blood clots.

Try yahoogroups and thrombosis. That should find it for you.
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.

Veteran Member

Date Joined Mar 2007
Total Posts : 4527
   Posted 10/21/2007 2:53 PM (GMT -7)   
Hi Hope things just keep improving for you and you find a good home. Thanks for all your advice. lol gail

Veteran Member

Date Joined Mar 2005
Total Posts : 4305
   Posted 10/21/2007 7:06 PM (GMT -7)   
I am so sorry that you are having all of these problems but please know we are hear for you and please know that you re in my prayers and thoughts.Just remember that thing's will get better.

Veteran Member

Date Joined May 2007
Total Posts : 1488
   Posted 10/21/2007 7:12 PM (GMT -7)   
Cutlass- I believe I am a newer member to this forum than you. I'm so very sorry you have been treated by the medical profession the way you have! I appauld you for taking responsibility for yourself and not backing down on seeking the right tests & diagnosis! I try and stay educated about my CD and sometimes I feel as though I need a PHD in molecular science to boot! However, in the last one and a half years since I received the "right" diagnosis after 5-6 years of misery, I have come to realize unless I am totally comatose I will ALWAYS have an active role in my therapies & surgeries. Having said that, even my own brother & sister-in-law do not care for my GP. But he does LISTEN to me when I tell him something is wrong and ACTS upon my inclination(s) with tests and follow up until he narrows down the problem. CD is a freaky, systemic disease that not enough is known about even in the medical profession. Furthermore, you were wise to request that port. I had such a nasty staff infection when I had my resection done and was on such strong antibiotics that my veins kept colapsing and at no time was I offered a port...wish I knew they existed at the time! As to you discontinuing the HRT and being that I am peri-menopausal or possibly post menopausal (haven't had a period in 2 months now) my GYN has suggested we may start me on natural hormone replacement therapy which does not contain ANY estrogens. The natural HRT requires a script and is specifically compounded by the pharmacist for YOU depending on YOUR hormone levels. Also, will require an educated GYN in natural HRT cause some feel it's not a tried and true approach. I can tell you we have a long list of patients in our pharmacies that says otherwise! Please seek out a compounding pharmacy/pharmacist in a independent pharmacy store and discuss if this is available in your regional area. It's a viable option that you may want to consider. I wish you well and thank you for sharing your story!
Dx'd Jan'06, 1st Resection 7/06, Predinsone, Humira, Imuran, B12 injections, Nexium. Secondary conditions: Psorasis, Acne, Fatigue, Joint Pain, Lactose Intolerant, gallstones, fibroid cysts, peri-menopausal.

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