Been Gone A Long Time - Can We Have a Update on Our Lives/Loves/and Pains?

Many of you don't know me as I am a veteran of this board hospitalized since early March - I would love to get to know the newbies (am now including myself as one) as well as an update on the oldies but goodies.

My name is Bob, I have had UC for 8 years.  After 6.5 years found remicade and some blessed relief.  I am married for 17 glorious years, live in DC and Rural PA (haven't been there since February because of health issues).  Love Gardening, cooking, herbology, pets (cat, fish, bird - I haven't seen them since March 1 as well).  I am truly a nature nut.

Currently in recovery/independent living condo with 24/7 nursing aides - had to have surgery to both legs in March to correct Charkot Disease - got that from a combo of Diabetes and nearly 7 years of high dose steroids/pred dependancy.  Just now able to stand and take some steps - anticipate walking in 2 months when I can rid of the nursing aides and go to the bathroom myself!  (Sounds looney but even going 15x a day alone is preferrable to my current situation of using the aides and a bedpan! hehe  I will never get used to that).

Sadly a complication in April - MRSA bacteria infection of right foot/leg requiring 7 more surgeries to save leg.  Also means not on schedule for return to Remi - so vicous flaring right now.

I am on Asacol and VSL3 for UC at the present - no other drugs allowed.  I am on pain killers for the surgeries/legs that is supposed to be helpful in binding but no luck yet.

I escape with netflix, what do you escape with?  Pets?  Gardening? Etc...

Hope we can all catch up - with love to all here.

Bob

Hey Bob it is good to have you back, we all missed and worried about you, I have had Uc sense 2003, I feel like I am one of the lucky one because I cant take pred. it makes my heart palpitate so therefore they cant keep pushing it off on me. I take asacol and canasa sup. and so for it keeps it to where I can live with it. I will be 52 in Aug. have been married for 31 years and have 2 great kids, well adults now. my daughter is 30 and teaches high school. And my son will be 24 in Sept. he is going to school to get his masters right now trying to decide weather he wants to teach college level are go to law school. We have 2 dogs one outside one in. The one inside is a longhair chihuahua, named Cosmo, He is insane and rules the household . The outside dog is a black lab because my husband duck hunts. I think he is a little insane also getting up before dark to go set in a little cold duck blind, but he loves it. I love my family, my pets and I love to ride motorcycles. I will keep you in my prayers Bob, I hope you get to go home with your family very soon.

Hello Bob,

My name is Jessica. I was diagnosed in November and am still figuring out a set of medicine to work for me. I am a engineering student and I work part time. I have a beautiful Burmese cat named Hana and a blue heeler dog named Penelope. I have been married for two years and have no children. I escape with my math homework, dorky I know but I think it is fun - at least when I can figure everything out. I hear you about the nurses aids and bedpans I don't think I could get used to that either. Hopefully they are nice and like their jobs. I always think it is strange when you meet a nurse and they seem to hate people and helping people and such.

Hi Bob, It is so nice to hear from you. You sure are going through it. Thank God for Netflix. I sometimes escape with them too. I have been thinking of you often. I will continue to say some prayers for you and your recovery. Once again, so nice to hear from you

Janice

Hi Bob,
My name is Donna and I'm an alcoholic..............no, just kidding, lol. I was diagnosed 27 years ago left left sided UC. I enjoyed a very long remission, mostly without meds. I began a nasty flare 2 1/2 years ago, after being scoped, I was told that 3/4 of my colon is now involved.  This has been the worst it has ever been. Went to a new GI and she put me on Asacol, suffered through a 2 year flare without any improvement at all. She wanted to put me on 6mp and I begged again to try the Sulfasalazine which I had been on years before. So, I went on that and after a month with that and rectal meds I went into remission. So, I've been in remission now since around the end of Jan to the beginning of Feb of this year. I am so, so, so happy.........

I've seen different comments on here about you, seems you have alot of friends on the forum that were very concerned for you. Sounds like you have been through a real bad time. Glad you are doing better and hope you continue to improve.

My escape is:  Camping, my husband and I love to go, it's just so relaxing.

Hi Bob! A quick update on me. I was doing very well on Imuran and Asacol until March. I met my new GI and five days later was in a horrific flare. I tried my best to avoid pred with rowasa and canasa. No luck. Two weeks at 40 mg pred brought very little relief :( I ended up being hospitalized in April on IV pred and flagyl for 3.5 miserable days. I had relief until I tapered off of the oral pred. That brought me to Remicade. Now I've tapered off the pred AGAIN - needed it for the time it took to get remi approved, etc. I'm hoping things hold true - I'm experiencing some twinges and squishy feelings since I've been off the pred a few days. Next week will tell.

I relieve stress by wakeboarding at the lake a couple of weekends a month and spending time with my hounds and hubby.

Update on me: I have just found out that 6mp is failing me and I came to the conclusion that when I flare again, rather then start on Remicade that next year I am going to have surgery. Not sure if you remember or not, but I was and still am having such a rough time trying to get into remission and most of my meds are becoming ineffecient. I also recently found out that I have 1 bulging disc and 1 herniated disc in my neck. I have been in tremendous amounts of pain so I finally went in for an epidural injection last Tuesday. I am feeling a tad better but not where I want to be. But to make a long story short, it took doctors almost a year to find the cause of my pain. I went to many specialists and not a single one of them ever thought to do a MRI of my neck can you believe that??

But it is really nice to "see" you again!

Hi Everyone,

Am wondering about your Prednisone/palpitations 'Pottygirl.' I've had palpitations before due to a minor shortcircuit in my heart (not at all serious) but since starting numerous medications including prednisone (since being diagnosed late last year) and have had a couple of longlasting (15min) palpitations coming close to fainting. The palpitations prior lasted 3mins at most. My specialist only knows of the first palp. not the others as i havent seen him since though i will tell him/see him next week. Was the reason for stopping prednisone due to the inconvenience/frequency of your palpitations or for more serious reasons?

Anyway I may as well introduce myself as im a newbie and that is the main request of this thread... (be warned im going to vent the long version as i havent been able to to any of my close friends, my mum suggested these forums as an alternative relief)

Im a 20yo female from New Zealand, love sports and creative interests. Im studying Art and Design specifically photography which is one of my passions along with snow skiing and kitesurfing/snowkiting.

I was diagnosed with Pancolitis in september last year and put on Pentasa(Mesalazine) then corticosteroids enemas shortly after. my specialist at the time wanted to put me on azathioprine but suggested i wait as i was moving back north in the next week. driving north on the day i left i developed severe cramps occuring every 10-15minutes. I rang my mum not knowing what to do as i felt i couldnt drive any further. Naturally she said to ring an ambulance but i didnt want to leave my packed-to-the-roof car to be broken into so drove the last hour to my local hospital. i stayed there for the next 3weeks, 5days on 600mls of IV hydrocortisone daily then 60mg prednisone tapering down. the hydrocortisone wasnt as effective as it should have been however it was enough to reduce the severe cramps though i was still having bowel motions in excess of 14times daily. this reduced gradually but i have been dependant on prednisone since being hospitalised at the end of november. I was started on azathioprine before i was discharged. i have had flares each time ive reduced my prednisone below 2.5mgs (3times) since. the last i was off the prednisone for a week before i had significant signs of the flare though i suspected a few days earlier that it was coming on.

I have now been on azathioprene about 8 months but it has produced no noticeable improvement. I have been on Prednisone for the same length of time. I was enrolled for the clinical trial for Adalimumab(i think..one of the -mabs) in UC but didnt qualify as i was on 10mg of prednisone which keeps my flare ups at bay.This last flare is still current as ive been a bit naughty in that i havent started taking the prescribed prednisone yet. i have managed to reduce my bm's from 7 to around 3daily (though still with obvious bleeding) through avoiding lactose, excess oils and sugars.

My specialist has left me with the options of colon surgery, the -mab drug trials or tapering prednisone down slowly, the later of which i have done up until i flared a week after coming off it.

A surgeon i have seen is 'discreetly' pushing surgery over the -mabs while my specialist obviously pushes the drug trials and on the other hand my mum doesnt like the sound of either and we are veering down the 'alternative' track. Myself? As my mum sees it, im in denial that i have to make any decision soon...

Loving having vented finally,
Antonia

Hi Bob,

I love these posts - it's so nice to hear everyone's stories. Glad to hear that things seem to be on the upswing for you. I know everyone here has been very concerned.

My name is Beth, and I'm from the Boston area. I was just diagnosed this past October when I was pregnant with my second baby. I was brought quickly into remission with pred., and was able to have a fairly uneventful rest of the pregnancy - a month of bedrest at the end, but well worth it when my beautiful new daughter arrived. Two months later, a pretty stubborn flare landed me in the hospital for a few weeks. Terrible being away from my new baby, but I am lucky to have a wonderful family who really stepped up and helped me not to worry too much about her. Ended up with pretty much every side effect in the book from the high steroid dosage (tachycardia, steroid myopathy, hair loss, etc.) , so was put on a fast taper. Anyway, am currently (and recently) back in remission, and have been feeling good.

I've been married for 5 years, and have two amazing little girls - aged 2 1/2 and 6 months. I have taught special needs kindergarten for almost 10 years, and love it! After being sick and in the hospital, my favorite way to escape is just being around my family. I could watch my girls interact all day long - they are just too cute (in my completely unbiased opinion)! Thanks for starting this thread, and so nice to "meet" you, Bob!

Hi Bob,

What a lot you have been through!  I'm continually amazed at the strength of people here and their challenges with IBD. 

I was diagnosed with left sided UC, after a colonoscopy, last fall.  Since I was mostly unconscious (ha) when the doctor talked to me afterwards, I didn't really understand the implications of IBD.  It didn't seem like that big a deal, and 6 pills a day (asacol) seemed pretty over the top to me.  After a few weeks, I thought I was having too many side effects, so when he prescribed Rowasa instead, yikes, I really thought he was overreacting.  I didn't think I was that sick, so I quit all meds and went into remission for about a month.

Then in Jan., the week before I was going on a cruise, I went into a flare.  I managed it throughout the trip by eating every other day and imodium.  When I got home, the docs put me back on asacol and prednisone, and I took this DD much more seriously.  I tapered off pred in March and would not say I'm in remission but managing.  I have some good days and some not.  I'm so glad to have found this forum where I've gained so much info, and it's helped me put my disease in perspective, but still approach it cautiously.

I do the bookkeeping for our family business, I'm into yoga (2 classes a week plus breathwork) and exercise at least 3x a week (I'm kind of compulsive about it) even if it's at slow speed.  I participate in a couple other forums for ex smokers and people who are trying to quit, read, and like gardening, too.  I have the coolest cairn terrier in the world, named Toto.

I love your attitude! 

Hi Bob,

It hasn't even been a year since I was officially diagnosed, and I'm already on the big drugs and talking to surgeons. I started off on a mini-flare in February and it went into a full flare in May (luckily after final exams). Before that, I was in remission just with 6 Asacol/day (*sigh* fond memories). I've had two Remicade infusions so far, and it has helped w/ firmer stools and less urgency. But I'm still losing a lot of blood. I'm really hoping that the third infusion this week will result in a significant improvement. Otherwise, I might just go for surgery, which I'm a bit frightened of, but I don't think I can wait around any longer w/ this flare. I'm currently going crazy b/c college starts in a month and I don't know whether Remi will work and I'll be going back or having surgery! I hate not knowing how things will work out and I love/have to plan things ahead of time, and that's not something I can do w/ UC!

I have been escaping with TV (it's horrible, I know--I should pick up a book!).

Bob, I really hope everything settles down and you start feeling better!

Hi Bob! Nice to meet you, and I'm sorry to hear about your recent troubles. I will definitely be saying a prayer for you and your leg and your awful-sounding flare.

I'm kinda new to the forum. My name is Katie and I'm a wife and stay-at-home mom to a beautiful 2-year-old son in the suburbs of Chicago. I used to be a project manager for a big insurance company. Leaving my job to raise my son was an (added) blessing in disguise, because I would have had to leave my job anyway after being diagnosed with ulcerative proctitis in January '08. At first it wasn't terrible but has progressively gotten quite bad.

I've tried lots of meds (check out my signature), but I'm convinced that my healing will come through a more natural course. I truly believe that one's diet and lifestyle can heal him/her, but I've yet to find the right combination (or missing elements) of foods and my stress levels are quite high. I think its a matter of time and trial and error.

I did try a book that gave me quite a bit of success - "The Self-Help Way to Treat Colitis and Other IBS Conditions" by DeLamar Gibbons. It eliminated several kinds of sugar and wheat bran fiber, and after two weeks I was feeling TONS better physically-speaking, but mentally I was a wreck. Cutting out all that sugar left me very moody and unhappy, so I'm putting that diet on the backburner as a last resort. Right now I'm trying the sunflower seed thing that everyone's been talking about. I just started tonight, so I'll let everyone know how it goes in a while.

I've had a terrible time adjusting to all the foods I've had to cut out. I'm a huge foodie who LOVES to cook and entertain, so its just killing me not to eat my favorite foods. The idea of never eating BBQ ribs again is enough to make me hang myself (I'm kidding, but barely).

So that's me. Its been nice hearing everyone's story, so thanks for posting your request for an update on the group. Keep in touch and let us know how things progress with your leg and flare. Best wishes for a fast recovery!

Katie

Things have gone very sour for me. No drugs are working and my colitis is now so bad I am in hospital.

Looks like I will be having to have surgery as there are no further options.

Surgeon came today and explained the procedure they would use and the risks involved. So at the moment, am scared stupid. I expect however that I'll settle down with a good nights sleep.