day 15 in the hospital....

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Regular Member

Date Joined Oct 2008
Total Posts : 27
   Posted 10/24/2008 12:27 AM (GMT -7)   
hello everyone, my names sully, i've been lurking around this board for a few months now, glad there is a place like this where people can go for information and support, a really good community here....
I'm 29 years old, was just diagnosed with crohn's disease about 3 weeks ago, finally got around to that colonoscopy....I pretty much already knew i had crohn's though from all the research i had done over the past year of the symptoms i had, that just confirmed it.....
It all started last december, i thought i had eaten something bad, all of a sudden i was going to the bathroom, straight liquid diarrhea every hour or less depending if i ate or drank something, it came on hard and strong....after a few days of this i developed anal fissures and hemorroids which added to the party, went to the ER 3 times over the next 3 weeks, all they did was hook me up to IV fluids then send me out the door, no diagnosis, no clue, telling them i felt like i was dieing, didn't help, i was dropping weight, fast, about 3 to 5 pounds a day....they did some random blood tests, after the 3rd visit they found out i had mono at the same time as this mysterious intestinal i recieved no treatment i was just sent home, told to rest and eat this brat diet stuff, bananas, rice cereal, applesauce, and toast to calm things down...looking back, how insane does that diet sound, i would never eat that stuff today knowing i have crohn's, well the toast works for me......anyway, these doctors didn't have a clue, so i lost faith in hospitals....
then i met a neighbor who is into natural healing with food, and got me eating basic foods, brown rice soup, oatmeal, only cooked veggies, chicken soup, etc, he also hooked me up with water everyday through his super crazy magnetic water filter system thing (best water i've ever had, very light and fluffy), and was giving me barley grass powder and lactoferrin....after a bit, all this started to help and the symptoms were backing off little by little until finally by late february my weight had stabalized at 150, i was 210 in december, so 60 pounds in around 3 months....
so now i was strong enough to work again and get out of the house, by keeping myself on track with diet and activity i was able to keep this remission through most of the spring and summer, don't get me wrong, it wasn't all happy times, there were setbacks here and there, constant anxiety about the bathroom and its location to me and whether it was occupied, the usually good stuff.....was having a real hard time trying to have a social life, and going out with friends, outdoors stuff was pretty much out of the question, no hiking this year, well i guess i could have, it doesn't bother me too much to poop outdoors.....constantly fatigued and weak and still trying to work, both my jobs were in kitchens standing all day.......
at some point the disease decided to attack my feet, my big toe on my right foot was twice the size of the big toe on my left, my right ankle was constantly swollen, and the heels of my feet were in constant pain, especially after standing then trying to pick them off the ground, so i was hobbling around all summer long, the only time i felt no pain and free, was when swimming, god i love swimming.....
then around mid august or so the full on flare came back....started making alot more trips to the bathroom, and had to quit one of my jobs....was trying to get control again with diet, since i figured it came back because i strayed from the basics a little too much, but this time it just wasn't working and over the past couple months lost another 30 pounds, so now i'm down to 120, so my family, obviously freaking out, forced me to go to a doctor, after the hour long talk i gave him about my symptoms, he was like, yeah, your obviously a text book case of IBD, and he didn't know why the ER visits last winter didn't figure that out right he immediately got me scheduled for a colonoscopy the next week, where they confirmed crohn's
then a week after taking asacol and prednisone, i was still feeling intense pain in my butt and i went back to the GI doc, she looked at my butt, noticed the insane abscesses/fistulas that were going on there and sent me to the hospital i'm in now right away....i met with my surgeon/doctor, he checked me in, got me in for surgery the next morning, he drained out most of what was in there, then later in the day did a cat scan and saw how much more there was to get, so we let it drain on its own for the next few days....nasty days those were, very incontinent, pooping the bed, getting my butt wiped a few times a day.....getting pumped full of antibiotics, steroids, asacol, morphine, and whatever else.....then we did a second surgery, and it was very successful, got it all out it seems, and its healing nice, they put me on remicade, and i'm now back down from steromedrol to prednisone, off the flagyl, ampucillin and whatever other antibiotics...........i've been trying to keep a list of everything they've put me on over the past couple weeks but i lost track, a bunch of stuff.....
but since taking the remicade, everyday has been exponentially better than the one before, not sure if its just that, or that and the combo of everything else, but I'm finally starting to feel like a person again, and not a disease, my appetite is back in full force, i've even gained a few pounds, i've been healing so well that i should be getting out of here sometime tomorrow, we're just monitoring the surgery sites, my symptoms, and the pain medication right now, everything is looking good....had to switch from percocet to vicadin today though, the percs were just too dopey for me, i was conking out left and right on that stuff, the vicadin seems to be working really well, and i know i need it because i went without pain meds for a good stretch yesterday and over night, woke up feeling the pain in my bum full force.....
so now i finally have some kind of treatment plan for my crohn's that seems to be working and putting me in remission, and i have very good doctors that truly care and treat me like a person, i swear this hospital is the best one around....the staff has been unbelievable through all of this, and the financial person has gone way out of their way to set my life up, she got me qualified for the NH statewide free health coverage due to my income, so hospital visits, including remicade visit is free, she got me hooked up with food stamps, she is working on medicaid, and also social security disability coverage......she knows how to do it, and has done it for many people, really cares about me, and is working hard to get me the help i need.....
my family has also come through for me bigtime, my dad who i haven't seen in ten years has been with me everyday the past two weeks, and is getting me a new apartment near all the family and near all my doctors, so i'll have a huge support system all within half an hour things are really looking up right now, i truly feel blessed........this year has been the toughest of my life, many times where i thought i wasn't going to make it, and i probably should be dead with what my body has been through, but now, finally things have turned around, and i'm surrounded by love and light..........hopefully after a few months of healing, i'll gain my strength back and my weight back, and my life back........
thanks for all for listening to my rant, it got kind of long there....but just wanted you all to know about me, just as i've learned a bit about you from coming to this site over the past year....having a place where we can share our ups and downs, and get advice when we're in the dark is such an important thing, together we can all get through this and overcome this disease and live whatever lives we choose to live...
peace and love

Veteran Member

Date Joined Oct 2005
Total Posts : 1250
   Posted 10/24/2008 2:36 AM (GMT -7)   
Sully, welcome to Healing Well! I'm so glad things are looking up for you! You'll find a wonderful family here, as I have. Blessings, Julie
Diagnosed with Crohn's March 2006
Asacol 3 times a day, Remicade 8mg/kg every 6 weeks, Prednisone 12 mg, Miralax as needed, Prevacid 30mg, Vit B12, Hydrocortisone enemas as needed
Imuran stopped 9/8/08 (possible Pancreatitis)
Paxil 40mg daily (for Panic disorder)
Xanax .5mg as needed (for anxiety attacks)

Texan with Crohn's
Regular Member

Date Joined Dec 2007
Total Posts : 362
   Posted 10/24/2008 4:25 AM (GMT -7)   
Greetings, Sully.

Welcome and best wishes to you! That's wonderful that you have received so much financial assistance, by the way. Many do not. That will help you more than you will ever know!!!

Keep healing and hang in there!!


Regular Member

Date Joined Oct 2008
Total Posts : 27
   Posted 10/24/2008 4:37 AM (GMT -7)   
thank you!

thought i'd add a few clarify

the first hospital i went to, last winter, that didn't do anything for me was monadnock hospital in peterborough, nh, not sure if anyone lives in this part of the country, but don't ever find yourself at this hospital, people have a way of coming out in worse shape than they go in....i hate talking down about people, but for some reason its true, and they just made me feel like a patient there, not a person.....small town hospital, underequip and incompetant.......

the 2nd hospital, the one i'm in right now, is the exact opposite, i'm at the Elliot hospital in manchester, NH, i've never felt more safe and comfortable in my life, i truly feel that every single person on this staff that i've encountered has cared about me and for me like they are my own family, they have worked a miracle in getting me back on track, and i can't tank them enough.........and the comforts here are amazing, beautiful view out my 8th floor windows of all the fall foliage, i have wireless internet, cable tv at my bed, all the food and snacks and drinks i want at any time i want, a dietician to help me with my food decicions and to make a special menu for all my meals and snacks while i'm here, a physical therapist to make sure my body isn't wasting away, doctors and nurses and aides checking on my often throughout the day, clean comfortable rooms, bathrooms, beds, blankets, hospital clothes.........can't say enough about this place, if your in NH and you need to go to the hospital come here.......

enough about that.........

i'm also very into diet, it seems dietary research has been my life's focus over the past 11 months, i've studied and used alot of different diets, taking something from alot of them, just trying to find, through almost trial and error what about all of them works for me............i've used the makers diet to some success, and i've studied and used traditional chinese medicine as a guide to success.........seems theres common threads in alot of IBD diet plans, alot of things that work and are true for a great number of us, but theres always going to be things that work for one person that doesn't work for another, we are all different, and crohn's is a big grey area.......keeping a journal definitely helps.......sometimes a food that every diet says we shouldn't have might actually work for you, and you'll never know unless you try it, so i think yes use these diets, but just as guidelines, not as the end all be all of your excistence, allow yourself to stray every here and there to see if some other foods will work for you, sometimes it leads to a day or more of suffering, sometimes your pleasently surprised and have a new source of calories and nutrients........just be sensible about your choices.....hammering down a bag of chips or a pint of ice cream is never going to be a good choice, lol.....

anyway......i'm glad to be here, glad to be alive, and if i can be of any help to anyone, i'm here to do just that.....a book i would like to suggest that i'm not sure has been brought up around has helped me through alot with this disease and other ailments that have come and gone over the past year.......

Healing With Whole Foods: Asian Traditions and Modern Nutrition by Paul Pitchford

this book is also used as a textbook for the course of the same name at the Heartwood Institute in Northern California..........its goes into detail of lots of different foods and they're specific healing properties, what parts of the bodies they affect, when to avoid them, when to use them, how to use them, why to use them, recipes, etc......this book has been an invaluable tool for me over the past year....highly recommended!!!

ok enough out of me for now......happy healthy healing vibes for everyone :)

Veteran Member

Date Joined Mar 2007
Total Posts : 4527
   Posted 10/24/2008 5:02 AM (GMT -7)   
Hi Sully Glad you finally have the help and support that will get you on your feet again .Nice to see your getting good care as well and that your family has been there to help you threw this .Sometimes people are very alone and having to cope. Hope the meds continue to bring health and happiness your way. Thanks for letting us share your story. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still gail

Veteran Member

Date Joined Feb 2007
Total Posts : 734
   Posted 10/24/2008 11:00 AM (GMT -7)   
Sully, You have been through so very much this last year. I'm glad your feeling better. Sounds like everyone around you are really helping. That's awesome. Hey, I am on the Southbeach diet. I don't consider it a diet it's a new way of eating for me. It has really helped my Crohn's. Take care,

Regular Member

Date Joined Oct 2008
Total Posts : 245
   Posted 10/24/2008 12:26 PM (GMT -7)   
Hi Scully, and welcome. You will find some great people here and they really care about the advise that they give you, as I have found out.

I am sorry you have been through so much, I am in the same situation as you just now. I think that a good diet seems to be the way to go. Try Probiotics, I had never heard of them until I cam hear and they really work miracles. Keep up the good work and prayers for you.



Veteran Member

Date Joined May 2005
Total Posts : 4219
   Posted 10/24/2008 6:18 PM (GMT -7)   
Just saying welcome!
27 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I also take a birth control pill to allow some fun in my life.

Veteran Member

Date Joined Feb 2004
Total Posts : 6518
   Posted 10/24/2008 9:38 PM (GMT -7)   
Hi Sully. Sorry you are in hospital but it looks like things are turning around for you. Glad to hear that. This is a great site with great people. Feel free to ask questions or rant or whatever you need to do. Looks like your in pretty good hands now but if I may make one suggestion. Its real important to keep up with what meds you have tried and which ones work or had little or even bad effects. You will be glad you did this later on. Your doc will be glad to help you get your list up to date. It also does not hurt to keep track of food for a while in the same manner. You may find certain foods are not that good to you and knowing this is a big help in keeping you feeling as good as possible. Hope you get better every day and are soon on your feet again, or should I say , in the swim again.
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.

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