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Crohn's Disease
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Posted 12/27/2008 11:54 PM (GMT 0)
I was recently hospitalized for 5 weeks for abdominal pain. I was suffering for about 2 years with severe abdominal pain and pressure. I also had diahrea,bloating,gas,and nausea. When the pain got so severe, and I couldn't keep anything down,I went into the ER and ended up having a laporoscopy and having my appendix removed. After a week in the hospital I ended up getting really bad I went for a CT scan and it was discovered that I had 2 large abcesses. One on the right and one one the left. I ended up having to have drains put in and ended up coming home with the right drain in (its out now). The abcesses where putting pressure on my small intestine causing it to obstruct. The right side abcess ended up seaping into my right lung and I had to have that drained too. My doctor's thought I might have Crohn's but the tests came back negative. I still have the pain where my small and large intestine join together. I still get bloated and have the diareeah sometimes. I have to be careful as to what I eat or drink (carbonated beverages are out and so is deep fried foods etc.) I have had my gallbladder out. My Dr's still haven't been able to figure out whats wrong so this is very frustrating for me. I have to go and see 2 more Specialists at the beginning of the New Year. I'm so frustrated now because I have no idea what caused everything or if the abcesses will come back.

   Any thoughts

Posted 12/28/2008 4:29 AM (GMT 0)

Dear Frustrated

You sound like you've had a very rough time for sure.  Sometimes it's hard to sort everything out, and get it all under some sort of control.  I know it sounds like lame advice, but really try to take one day (or one hour sometimes) at a time.  You will see the specialists, and then hopefully you will know more.  It might help to write down any questions you have as you are worrying, then bring the list to the appointments.  That way you won't forget to ask that nagging question.  One thing for sure--we are all on your side, and many members have had very bad times, and do understand alot about suffering.  Keep posting!!!  Tell us what is happening yeah

Pix

Posted 12/28/2008 5:50 AM (GMT 0)
thank you pix for thew thoughts I will keep posting and keeping everyone up to date
Posted 12/28/2008 12:56 PM (GMT 0)
Hi What test did you have done which came back not postive for crohn's ? I had abcess before and had to have it operated on to get rid of it as the CT machine was down when I went in to emerg., hope your new specialist find out what is wrong as it can be worrisome when a person doen't know what is wrong.Stay in touch and let us know how you are doing. What kind of specialist are you going to see? lol gail
Posted 12/28/2008 6:18 PM (GMT 0)
Thank you for your reply. I have had 2 colononoscopies. The first one they couldn't complete because my small intestine was swollen shut (where it meets the large intestine). The second one is the one where is apperantly showed I didn't have crohn's. I have also had a gastroscopy done too and tons of blood work. The specialists that I have to go and see are another GI Dr and an internest. So I'm hoping I'll find something out from one of these two.
Posted 12/28/2008 8:59 PM (GMT 0)
Hi as most crohn's is located in the part where it meets small and large TI area it sounds like crohn's to me and it is good your seeing another GI .With you almost closed up I think they would be suspeting it to be crohn's. Best of luck with your new GI ans internist.I also stay away from pop most of the time and follow low residue diet. lol gail
Posted 12/29/2008 1:51 AM (GMT 0)

I agree with Gacrohn's reply... there is no specific "test" for Crohns--it is diagnosed by biopsy, if you have the ulcers to biopsy.  If your area of involvement is in your small intestine, then they couldn't get to it in the colonoscopy anyway.  Crohns is also diagnosed by a symptom pattern, and it sure sounds like it could be.  Of course, I'm just speculating, and your doctors are the ones to listen to.... turn

One problem with these forums, though, is all the opinions you will get, from all the different people.  Sometimes it is supportive, and sometimes it can drive you crazy.  We all speak our own truth, out of wanting to help.  Good luck tomorrow!

Pix

Posted 12/29/2008 6:40 AM (GMT 0)
Thankyou for your support. It's great being able to talk to people who understand what's going on. Thanks again
Posted 12/29/2008 4:05 PM (GMT 0)
One of the better tests to diagnose Crohns is the pill cam. It is able to see areas in the small intestine that the c-scopes can't reach. Hopefully these 2nd opinions will provide the answers you need. Good luck!
Posted 12/30/2008 10:25 PM (GMT 0)
Hi Frustrated,

I'm sorry to hear you're having such a tough time. What you're describing sounds a lot like what I went through 5 years ago. I went to the doctor thinking that I had a bladder infection. I had been ill for days, thinking it was the flu. I was vomiting, running a high fever and passed out one night. My doctor thought I was maybe having appendicitis and sent me to the ER for tests. The x-rays didn't show anything and the ER doc basically thought that it was all in my head. It was after a resident came back to check my stomach again because she noticed I reacted every time she pushed on my right side, that I was taken serious. I ended up staying 8 days that time. After many x-rays, blood tests and a CT scan it was determined that I had an abscess. So a drain was put it and I was on antibiotics for a couple weeks.

After I was released, I went in for a colonoscopy and the doc couldn't get the scope all the way into my small bowel. I was sent home and told to call if any other issues. 2 days later I was running a fever again, called the doc and was told to just take some tylenol. Within a few hours I had a terrible ripping sensation across my lower abdomen when I was urinating and knew something wasn't right. I went back to the ER and they immediately did a CScan and I had another abscess. This resulted in a 7 day hospital stay and during that time it was believed that I "might" have Chron's, but it wasn't postive. I was given a PICC line for the antibiotics and sent home with another drain.

I then went to see a GI, who wanted me to see a surgeon. The surgeon then showed me the scope results and said that although it still wasn't 100% percent in the doctors minds that I had Chron's, he was 100% certain that I did and recommended surgery. I had a resection, in which he took out 12 inches of greatly diseased small bowel, my TI and appendix. I've had some flare ups since then, but nothing like how sick I was prior to surgery.

Keep pushing your docs for answers, I know it can be tough. Thankfully I had some really good docs and my diagnosis didn't take forever like some, although I had symptoms since I was a child and just didn't know any better.

Best of luck to you.
Dani
Posted 12/31/2008 1:20 AM (GMT 0)
Went ot ER yesterday did ultrasound and blood work. Sent me home and said that everything came back normal. Nothing they could do. Just keep my appts and take metimucel. No explanation for the pain again. This is really getting frustrating now.
Posted 12/31/2008 1:33 AM (GMT 0)

dear frustrated2

So lets take it day by day then.  When are your appointments?  How are you feeling now?  what is your plan for tomorrow? 

Pix

Posted 12/31/2008 2:20 AM (GMT 0)

thanks Pix

My appointments are January 5&6th so I'm hoping I can hang in there till then. I'm still having alot of pain and have had diahrea and no appitite for the last 2 days. I'm just going to take it easy tomorrow. No big party plans.

Posted 12/31/2008 8:14 PM (GMT 0)

Do you have any medication for D or pain? ("D" is our short-hand for diarrhea...clever,huh?.....;-) idea .   Please be sure to keep drinking water, because dehydration makes everything worse.  If you can keep your energy up with fluids that have calories, that is good, too. 

No big party plans, huh?   I guess that makes you a ........ready.?........real party pooper~!  (ouch, ouch--sorry....)   tongue

Get lots and lots of rest.  Just lay around, for real.  You don't want to get more infections, and a rested body fights better.

Keep posting!

Pix

Posted 1/3/2009 2:07 AM (GMT 0)
Wishing everyone a Happy New Year and the best in 2009.

Getting nervous about Mon and Tues. As I said before I hope that I get some answers. Have had a lot of pain and
diarrhea over the last couple of days. I've been really careful this holiday season with what I've been eating I've just found out that I can't eat radishes and bananas anymore. Did I ever pay for eating those. Ended up having to take Tylenol yesterday and today.

I'm just taking one day at a time right now. I guess it's all I can do right now.
Posted 1/3/2009 4:15 PM (GMT 0)

Good luck on Mon and Tues!!!!!!!!!

Do you have your questions ready for the doctors?

The food intolerance varies, and you might be able to eat bananas again when you are feeling better.  Man, it sure sounds like Crohn's to me....Just obey your body!!

Only today and sun to get through, and then maybe some help and relief.

Pix

Posted 1/4/2009 1:39 AM (GMT 0)
It sounds like a typical case of Crohn's to me. The D, abdominal pain. intolerance to carbonate drinks and fried foods. These were my very first symptoms. I have had Crohn's for 25 years and even during a flare my blood work comes back okay. I totally agree with all the advice and would take it one day at a time. Keeping a food journal will also help.  Best of luck to you

Elizabeth

Posted 1/4/2009 12:51 PM (GMT 0)
Iknow exsacally how you are feeling i have crohns and have been to er about 10 times in the last 8 mnths test kept coming back as ok but i still have pain in my lower abdo and you feel like thay dont care and thinking is anyone going to help me get better or is this how its gona be ,it took my docs 3yrs to first diagn me i was 15 at the time and by time they realized my bowels were a mess but you hang in there sounds like the new gi will help demand it i would will be thinking of you and all the best.
Posted 1/4/2009 1:32 PM (GMT 0)
Hi Just wanted to drop in wishing you all the best tomorrow .Keep in touch and let us know how things are going. Be sure to tell him about going to emerg and all the things going on with you.I keep a journal of all my appointments, in it I have the meds taken and what test I had done. It really is good to be able to find info on my personal situation and I can skip over it when I need to check on things. lol gail
Posted 1/4/2009 9:14 PM (GMT 0)
Thank you for all your support. the last couple of days haven't been the greatest. Every time I eat I fell like I'm going to puke and have alot of right side pain. Been to the bathroom 4 to 5 times/day. Beigining to feel afraid of eating anything. I will keep everyone posted on whats happening with the DR's I've been keeping a food journal. (Great advice). Still trying to figure out all the questions I want to ask the docs. Have some written down.
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