Recently Diagnosed w/Crohn's

[lisa_mc2]

In early December 07, I thought ( as did my Doctor) that I was having a problem with my gallbladder. Of course, the ultrasound was negative, so a few weeks later I was scheduled for a Pipida Scan. After suffering for about another week, waiting on somone to call me with the results of the scan, I called in to my Primary Care Doctor's office on a Friday afternoon. She immediatly called me back to say that the scan showed that my gallbladder was only working at 20% and that should head to the hospital for surgery/consult that evening....well..ok..here we go. Being the weekend, and I was not bleeding from all orifices, I was made NPO and scheduled for some additional tests. I finally had my gallbladder removed on January 14th. After 4 days post-op recovery in the hospital, I was ready to head home.

The day after I got home (Friday), I thought I was getting a stomach flu. I really was very sick with nausea, vomiting, and diarrhea fever & chills. I felt so bad I didn't want to go to the ER and I knew My Primary Care was not on call, so like a dummy, I waited it out until Monday morning and went to see my PC first thing Monday morning. Needless to say, I was immediately hospitalized, with a request for a GI, Surgery, and Infectious Disease Consults. After numerous tests (upper/lower GI , Small Bowel Follow Thru, Various Labs, several antibiotics and IV fluids, I was sent home with a diagnosis of cholitis after 13 days in the hospital. After recovering at home for 3 days, I was feeling well enough to return to work that Wednesday.

Wednesday and Thursday I was able to make it through a half day of work. Thursday night I woke up around 3 am with all raiging vomiting and diarrhea again. I could not beleive it I was back at my Primary Care Doctor's Office, then admitted for a third time (this time for 4 weeks, but with answers!!! ).

Working through my medical history with my GI and PC Doc, we discovered that I have had Crohn's for a while now and one of my triggers is abdominal surgery/trauma. I have had this similar senario play out after an appendectomy, hysterectomy, and having ovarian cysts removed. No other doctor ever connected the dots or diagnosed Crohn's.

At this time I am now taking all of the various "Crohn's Medications" along with the meds I already take for Migraine Headaches "Pentasa 1000 mg 4 times a day, Prednisone, Potassium CL, Metformin, Promethazine, Protonix, Ambien, Oxicodone, Topamax.

The Prednisone has me wired. I only sleep ablut 1 1/2 hours a night, even with the Ambien. I have tapered from 60 mg to 20 mg, but am beginning to experince symptoms again, so my PC feel that we may need to increase the Prednisone again.

OOOhhh... During this third hospitalization. You know what they say about the longer you stay in the hospital, the sicker you get??? Well., I'ts TRUE!!!

On the 5th day of the of my third hospitaliazation, I was diagnosed with VRE (vancomycin-resistant enterococci) Thanks to all the antibiotics. I was placed in isolation and everone comming in/out of my room was to be fully gloved/gowned/masked etc.. When someone comes in/out they are to wash their hands.... If I were to leave my room, I was to take the same precautions.

So....This being said, you would think that I would be pretty safe from outside germs, seing that all these precautions are being taken. Well, your wrong. Some of the Nurses and Nurse Techs didn't think that the precautions were to work both ways. Somehow, my PIC/ IV Line got infected with MRSA staff blood infection. I spent an additional 7 day in the hospital and then was able to convince them to let me go home with Home Health IV Vancomycin for the remaining 7 days.

I am now home, Not feeling so great, but not feeling too bad either. I'm now 3 day off of the IV Vanc. taking 20 mg of prednisone. I am experincing nausea, cramping , low grade fever, headache, but no diarrhea. I am scheduled to see my GI on 4/2. My goal is to make it to that appointment without a hospitaliazation before.


Thanks for letting me vent...

Lisa

 

[Mazen]

Hi Lisa. Sorry to hear how much you suffered. Hope now that it ends and you can recover once again. If you have any questions , please feel free to post. People in this forum have all suffered a lot and can help you as much as possible.

Good Luck and God Bless.....

 

[D Bergy]

Just happened to be reading about antibiotics yesterday and found out a little about Vancomycin. Due to the single action of all antibiotics, bacteria can fairly easily develop a resistance to them. The ones that survive the antibiotic proliferate and now you have a dominant strain that is unaffected by that particular medication.

Where it gets really frightening, though, is that bacteria swap genes like politicians swap favors -- which brings us to vancomycin, the antibiotic of last resort. When all other antibiotics failed, doctors knew they could count on vancomycin. But then vancomycin resistance was discovered in a common hospital microbe, enterococcus. By 1991, 38 hospitals in the United States reported the variant. Just one year later, vancomycin resistant Staph bacteria were observed with the same gene. What this means is that not only are bacteria programmed to "evolve" defenses against antibiotics, but once they produce such a defense, they are also programmed to rapidly share that defense with other bacteria -- thus rapidly spreading the resistance.

This common characteristic of antibiotics is why they are not effective for a long period of time.

Probably does not help your situation, but at least if we understand the problem, we can find a better way to deal with bacteria.

Dan

 

[Guest]

hi lisa, aw i'm so sorry that such an awful time recently has brought you here, but i'm glad you found the forum anyway.

i do hope you're over the worst now, and its just a matter of time and healing ahead of you.

you brought back a memory for me.. years ago my daughter was admitted for an emergency appendectomy. of course i stayed in hospital with her, and 4 days later when we came home, we both came down with a horrific stomach virus which had been sweeping the hospital & closing wards. my daughter got over it in days. i suffered for months & months, it went into IBS - which i'd never had before. i had to take stool samples every day for a week to my gp, lost loads of weight. yup, i can definitely say i was much healthier before i set foot in hospital, than after, that time

have you been advised to try & boost your immune system at all? just wondered, with everything you've been through, if this might be something worth looking into.

 

[lisa_mc2]

Thanks everyone for the reply's! At this point I have titrated down to 15 mg of Prednisone a day along with all of the other various other meds that have been prescribed. The only prboblem is with the lower dose of Prednisone, I am now suffering from almost constant nausea and stomach pains. I see my Gi on 4/2 and suspect that we will be going back up on the Prednisone dosage. At this point, I'm willing to do just about anything to feel better.

 

[Kev]

HI Lisa Welcome to the Forum. Sorry to hear about your troubles. Hope it turns around for you real soon. In the meantime, vent all you want, and feel free to ask any questions. Just keep in mind we're just fellow sufferers, OK, and our particular take on this may be no better informed than your own.

In many aspects, your situation mirrored my own.. Dr thought my primary issue was a gall bladder thingy (WRONG). I thought I had the flu (WRONG)
apparently I also had (in hindsight) crohns for years, triggered by stress OR even cutting out tobacco.. (yeah, that's a weird one.. got 3 drs now who won't let me guit smoking - at least not yet - we're going to experiment with that later - IF my current wonder drug continues to work wonders for me).
I was also exposed to a number of 'bugs' during hospital stays.. luckily I didn't contract any.. like MRSA.. but my exposure had me 'red flagged' for a while... Anytime I went to hospital, clinic or doctors office they treated me like I had the plague.. And the testing for it was just totally humilating.. "Pardon me, but it's time for me to do another groin swatch test on you!"

Surgery for me was a breeze... and the recup time was like a vacation. I was symptom free... So we differ there... I never had migraines till I got crohns, and in my case, they're a side effect of the meds. I managed to tweak meds so I rarely get them now... But it is like adding insult to injury, isn't it...

Anyway, reading your entry about desparate to try anything, and keeping in mind that surgery seems to trigger a downturn, and since you can't stay on pred forever... you may want to check out LDN and run it by your doctors. I use it, so do a few others on here; and it seems to be a safe/effective med..

All the best, once again welcome. Take care and keep on posting here, OK?

signed: another mic or is it mac