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

New Topic Post Reply Printable Version
29 posts in this thread.
Viewing Page :
 1  2 
[ << Previous Thread | Next Thread >> ]

schrek-chewbacca hunk
Veteran Member


Date Joined Jun 2005
Total Posts : 2666
   Posted Today 11:51 AM (GMT -6)   
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

bellski
Regular Member


Date Joined Apr 2008
Total Posts : 499
   Posted Today 12:07 PM (GMT -6)   
Hi Bob, I'm Lori (Bellski). Wow, you sure have had a hard time latey. I hope you heal quickly and can get some normalcy back. I am pretty fortunate (hope to stay that way). I have Ulcerative Proctitis, diagnosed in Feb or Mar. this year. I went in for a colonosopy thinking they would find internal hemmeroids, much to my surprise I have this disease I'd never heard of. The asacol and canasa worked quickly. I have mild flare often but no blood and the colon looks much better (the doc just did another flex sig). I was so thankful, at first they said dysplasia (I was nervous that I'd have to get the colon removed). Then this last flex-sig showed no signs of dysplasia. (O: I am a teacher, age 43, this will be my third year teaching as I went back to school to get teaching certificate after I raised my kids. I have 2 kids ages 21 and 19 and a husband of 23 years. I love my job teaching second grade, I hope my health will allow me to do it forever. This website has helped me so much. I feel so bad for everyone that has such bad cases of this disease. I forgot to mention the newest addition to our family. "Rocky" is the most adorable maltese in the world. He is about 10 months old and has brought an amazing amount of joy to this house. We are a little obsessed with him. He even sleeps with us. You would love him, he is so good. I look forward to hearing from you, I will keep you in my thoughts and prayers, Bellski
Lori (Bellski)-age 43 from Illinois
Diagnosed February 2008 with Ulcerative Proctitis,
Currently: mild symptoms / flare ?
Medications:  Asacol 400mg X 6, Canasa X 2 
Vitamins:  Calcium 600 + D X 2, Centrum, Citrucel caplets, Probiotics
High fiber diet
"I thank God that  I found this website!"
 


potty girl
Veteran Member


Date Joined Dec 2006
Total Posts : 835
   Posted Today 1:22 PM (GMT -6)   
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.
Rona

synthroid .088 mg, lowpressor 50 mg x 2, cozaar 25mg x2, imdur 30 mg
nitroquick, proventol, plavix 75 mg, protonix 40 mg x 2, asacal 400mg x 9
carafate 1 gm x 4, zyrtec 10 mg, rhinocort aqua nose spray, fish oil,
potassium.


potty girl
Veteran Member


Date Joined Dec 2006
Total Posts : 835
   Posted Today 1:24 PM (GMT -6)   
I forgot to add one thing I am going to be Grandma in Jan. I cant believe I forgot that. must be the meds.
Rona

synthroid .088 mg, lowpressor 50 mg x 2, cozaar 25mg x2, imdur 30 mg
nitroquick, proventol, plavix 75 mg, protonix 40 mg x 2, asacal 400mg x 9
carafate 1 gm x 4, zyrtec 10 mg, rhinocort aqua nose spray, fish oil,
potassium.


hana24
Regular Member


Date Joined Dec 2007
Total Posts : 354
   Posted Today 1:31 PM (GMT -6)   
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.
Jessica 27/F 20mg pred
dicyclomine 10Mg as needed
Citalopram 20 MG
omeprazole(for acid reflex)
Tried (Entorcort EC 9ml/day and Prednisone, Asacol ,colazal, Culturelle)


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted Today 4:04 PM (GMT -6)   
Hi, Bob. I'm another oldie but goodie. I'm in my third year of remission with Remicade after a 5 year flare from the time of my initial diagnosis. Currently I'm finishing out the last six weeks of my career, preparing to retire the end of August. We will be moving (with our pound puppy Kirby) to the beautiful Tennessee mountains to garden, play golf and whatever.

I'm another victim of long-term steroids. In my case it was Entocort and in addition to osteoporosis, it gave me very painful avascular necrosis.

I'm so happy to see you feeling well enough to visit with us again! Hope your recovery proceeds uneventfully from this point forward.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from steroid therapy.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


jano437
Veteran Member


Date Joined Jul 2005
Total Posts : 1614
   Posted Today 4:59 PM (GMT -6)   
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
Diagnosed July 2005 with Pancolitis
Asacol 4 tabs 3 times daily
Pro-Bio
Forvia
calcium
Diosmin(for leg and vein support)


princesscolon
Veteran Member


Date Joined Apr 2006
Total Posts : 733
   Posted Today 5:35 PM (GMT -6)   
Hi Bob,
My name is Adrienne and I am 27, I am a SAHM with 2 young boys. I was 1st d'xd with left-sided UC in 1995. Currently I have Ulcerative Proctitis and have been having a rough time with one ulceration in my rectum since 2004. The ulcer was closing up when I was on Remicade but suddenly the Remicade lost its oomph, I got it more often, then higher doses, resulting in a weird and painful reaction. I started Humira in April and have been disappointed so far, had a scope in June that did not look good for my rectum again, now I am taking 6MP in addition to Humira. I have had a tough case of UC, but have decided I would try to avoid surgery for now but I am considering getting an illeostomy if things get too tough.

For hobbies I enjoy watching tv and movies, I worked at a video store a couple years back even. I enjoy Sim video games like "The Movies" and "The Sims" and of course I am addicted to the internet. I love to travel when possible, my favorite place I've been to so far is Las Vegas. I hope to go on a cruise one day with my family. I am thinking about going back to college possibly soon.

I am sorry to hear what you have been through. That is a lot of surgery for one leg. Also sorry to hear about the flare and bedpans. I have heard other members on here speak very fondly of you from time to time. I was wondering if you have see the movie "Amazing Grace"? What are some of your favorite movies or some new good ones?

Adrienne
Diagnosed with Left-sided UC in 1995 at age 15, Prednisone, Rowasa & Hydrocort. Enemas, Proctofoam, Sulfasalazine, Asacol, Probiotics, Fish Oil, Aloe Juice, Canasa, Enotcort, Colazol, Anamantle, Remicade, etc... had 1 inch deep rectal ulcer 2004, put on Remicade, August 2007:Increased Remicade dosage-700mg every 6 weeks,diagnosed w/ Psoriatic Arthritis & Fibromyalgia Current meds: Clorazepate, Lomotil,  Tylenol pm, Lyrica started 1/17/08,  Humira started 4/4/08, 6MP started 6/24/08


munchkindd
Regular Member


Date Joined Oct 2007
Total Posts : 348
   Posted Today 6:10 PM (GMT -6)   
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.


*******Donna*******
 
diagnosed with uc 27 years ago.  Enojoyed 20 year remission with just minor blips here and there (approximately 16 of those years without any meds)
 
In a flare for 2 very long years which Asacol didn't help at all.  Finally in remission again since Jan 2008, can't believe it..............
 
currently on Sulfasalazine 2 tabs 3x day. Folic acid, mesalamine enema once a week. Omega 3, Probiotics, multi vitamin, calcium supplement, Biotin 5000mcg, Fibercon.
 

Post Edited (munchkindd) : 7/18/2008 5:18:25 PM (GMT-6)


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted Today 7:05 PM (GMT -6)   
Bob! Welcome back! It's lovely to see you here again. We've missed you!

It sounds as if it has been a rough and traumatic time for you and I know things are still hard, but it's so good to hear that you might be up and walking soon.

We've been so worried for you. It's great to have you back.

Ivy.
Co-Moderator Crohn's Forum.


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted Today 7:34 PM (GMT -6)   
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.
Pan-colitis and GERD diagnosed May 2003
Osteopenia (hip and spine) diagnosed Feb 2006
Status:  Remission?!?!?
Asacol 12 per day,  Azathioprine 100mg, Aciphex, Forvia, and Pro-Bio
Remicade: 1st infusion 06/17/08:  Next (3rd) infusion 08/12/08
Last Prednisone dose:  7/15/08
 
Co-Moderator UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 552
   Posted Today 11:01 PM (GMT -6)   

Hi Bob, it's great to see you posting again on the forum! Hope you keep posting regularly!

Bratcat had her 3rd flare this past March. So she missed 9 weeks of school for her first flare, 9 weeks of school for her 2nd flare, and another 7 weeks of school this spring. She seemed to always be either in a full flare (no minis for her) or in remission. Unfortunately she went through most of the routine drugs but it seems only prednisone got her into remission (but didn't really keep her there).

On July 3 she had step 1 of the J-pouch surgery. She was in the hospital for 6 days. She went to the doctor today and she removed the staples (she had a full incision). That has been a big help. The pain hasn't been horrible and emptying the bag is going well. She hates having anything stick to her body (never even liked bandaids) so the wafer of the ostomy appliance is making her nuts. The good news is her biopsies came back fine! It was definitely UC so she should be disease free! Sometime around or after October she will be able to get rid of her stoma and start using her new j-pouch.

Usually she escapes with friends, our 3 cats (2 think she is their mother), her computer, and work (she works at the library). The past 2 weeks she hasn't really wanted to speak to her friends (they call and leave messages), she rarely turns on her own computer but uses mine once and awhile to surf the net, she probably won't go back to work for another few weeks. She is just starting to play with the cats again (they gave her space for awhile when she came home).  I told her starting next week she must talk with her friends (no taking messages for her). She also has 6 more lecture classes for drivers ed (she missed them this spring). They are 3 days each over the next 2 weeks.
 
Like you, she is taking baby steps forward in the right direction. It can be frustrating at times but sooner or later, you will get to the right place. Stay well.
--Mom of bratcat (17 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Current meds:
Asacol - 4 pills/3Xday, 15 mg prednisone, Remicade
 
11/14/06 - started prednisone; 1/28/07 - finished prednisone!
3/3/07 - began to taper off hydrocortisone sloowwly! Summer 2007 - slowly began tapering Rowasa. 9/07 -- flaring? Nightly Rowasa. 9/21/07 -- added hydrocortisone enemas. 9/30/07--added prednisone. 10/31--started 6-mp, stopped the enemas. Started lowering prednisone. 3/08-another flare!  7/3/08-Step 1 j-pouch surgery


Red_34
Elite Member


Date Joined Apr 2004
Total Posts : 23551
   Posted 7/19/2008 7:30 AM (GMT -6)   
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!
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs), Hydrocortisone E's, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Allegra
~Secondary Reynauds Syndrome-'04-Norvasc~Spinal Stenosis~Sacroiliitis-epidural injections~bulging and herniated discs C5,C6&C7~2nd epidural injection 8/14
To help Healingwell - click here: DONATE
 
 
 
 

 
 


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 7/19/2008 7:51 AM (GMT -6)   
Welcome back, Bob! Jeez, you've had a rough time of it... glad you're feeling a bit better, at least related to your surgeries. I'm doing alright- still on the double dose of Remicade every 6 weeks. It's working well enough for me- I wouldn't say I'm in remission by any means, but it's manageable. I haven't been on steroids since February, which is very good! Just upped my Imuran to 150mgs/day, in an attempt to close a fistula medicinally rather than surgically. And it may help the UC too. I just started to use a fiber supplement, Metamucil wafers, & the results have been better than any drug I've taken in the past year or so! So things are definitely going as well as they can go, while still "flaring". If & when the Remicade fails for good, I plan to hit Humira & take it from there. After 2 scheduled proctocolectomies, which I cancelled, I've come to the conclusion that I just cannot opt for surgical management of my UC. Right now I hit the beach to relax (I live on Cape Cod), & read, nap, hang out with my cat, & spend time with my family. And Red- sorry to hear about the 6MP- but you seem content with your decision, which is very nice.

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
Culturelle
 
 
 
 


Snowkiter
New Member


Date Joined Jul 2008
Total Posts : 7
   Posted 7/19/2008 8:38 AM (GMT -6)   
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

Hans C
Regular Member


Date Joined Dec 2006
Total Posts : 89
   Posted 7/19/2008 9:48 AM (GMT -6)   
Hi Bob,

Seen your name mentioned frequently. I'm from Europe but living in Vietnam, Hanoi, since September where I teach. I'm a big reader - mostly English literature. I like film and I play Go (not much now I've no partners!). I haven't cooked even a sausage since January 07 which is when I left Europe.

I'm hoping my UC is mild I hadn't really accepted it as a major problem untill the current flare which coincided with a new laptop and hence access to information. It became hard to ignore that I was being irresponsible regarding my UC. I think my current flareis a result of an antibiotic malarial that a tropical disease specialist (with knowledge of my UC) recommended I take for 3 months.

I meditate daily for about an hour. I don't do that because of my UC but I know it will be instrumental in the course of this disease. I'm now self-medicated as per below and entering remission.

Well I hope you improve quickly and get back to your garden and pets

Hans C
age 26  ------------- diagnosed 2004 (probable left sided)

Multi-vitamin                                       Lactobacillus acidophillus sachets
Aloe vera - Omega3 fish oil                    Asacol (8x400mg)                     
Iron, folic acid and b12 supplement__________________________________________________ 


bap06
Regular Member


Date Joined Jun 2008
Total Posts : 57
   Posted 7/19/2008 11:24 AM (GMT -6)   
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!
*Diagnosed 10/07 (6 months pregnant w/ 2nd baby)
*Currently in remission
*Lialda (3 x a day)
*Canasa
*Prilosec
*Calcium, multivitamin, Metamucil, iron


Supa
Veteran Member


Date Joined Jul 2008
Total Posts : 748
   Posted 7/19/2008 1:29 PM (GMT -6)   
Hi Bob and all-I am a newbie as of a today, and glad to have found this board.

First, let me say my thoughts and prayers are with you, Bob. You certainly have been through the ringer as of late, it sounds like.

I am Laura, a 33yr old SAHM. I have been married for going on 8 years, and we have 2 daughters, ages 3 and 20 months. After my second daughter was born, I had some troubles and was diagnosed in early 2007 with UC. I have had some ups and down and was hospitalized in April of this year for a few days. Got a few units of blood and was put on pred. I switched to a new GI, who got me started immediately in a Humira trial-I am currently 12 weeks in and am responding well. My sigmoidoscopy at the 8 week mark showed vast improvement!

I started tapering off of the pred at the 8 week mark as well, and am now down to 15mg/day. I was doing pretty well with that until recently, so I am may slow it down (I am now on a schedule of dropping 2.5mg/week, but they said I could hold off on dropping more if I felt I needed to). I am also still taking iron and take Asacol-6 pills a day.

I am in dire need of some new escape methods, so I am gearing up to get back into my exercise routine now that I am feeling stronger. I also enjoy gardening, but man has it been hot for that lately! (I am on the east coast too-in MD) I am a singer as well, so I do some singing at church and am anxious to get back to that now that I can commit to actually being there. I have also become a big fan of acupuncture recently, and have been lucky enough to find someone whose daughter is also living with UC. She has helped me immensely with the symptoms from being on pred.

I am so glad to be here and looking forward to getting to know everyone!

Laura

potato
Regular Member


Date Joined Jun 2008
Total Posts : 281
   Posted 7/19/2008 3:02 PM (GMT -6)   
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! 
Potato...  Female, 58, dx mild left sided ulcerative colitis 11/07
asacol 3 3x a day   asacol 2 3Xday
rowasa tapering to 2 x week
culturelle, citracell
Centrum, Vitamin E 400 mg
omeprazole 2x a day
oxazepam (anti anxiety) when needed
 
 
 
 
 
 


PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 7/20/2008 12:43 AM (GMT -6)   
Hi Bob. I've thought of you often, glad you're able to post here again! You've had a really tough time of it, I'm glad that despite all the problems, you sound upbeat. I hope the light at the end of the tunnel appears soon for you. My family has had a pretty rough year too so far. My husband who previously had only a diagnosis of ulcerative proctitis, ended up with a c-diff infection, and had to be admitted to the hospital due to dehydration etc in early March. After a few weeks, they finally realized that he didn't just have c-diff, but also very severe crohn's inflammation in the transverse colon. That was quite a shock - I've always told myself that the worst we'd have to do is surgery for UC - a surgical cure at least existed. Now we have a diagnosis of crohn's, and that was difficult to accept.

In any case, after about 6 weeks in the hospital, and after my husband lost 40 lbs of muscle (he had not much fat to begin with), and a drop foot in his left leg, he was finally discharged (thankfully without surgery) on vancomycin (for c-diff), pred, and remicade. He's still recovering, and we've had a few scares with possible demyelinating polyneuropathy (caused by remicade, that we're still monitoring for, since his nerve conduction velocities are slower than normal). But he's putting on weight, and things seem to be on the way up for us, though I am still shaken by everything that's happened this year.

I now understand some of how you must feel, and what your family must be going through, to see you in so much pain. My heart goes out to you and your family, I truly hope you get back on your feet, and get things back under control. Hang in there.

Big hugs,
PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff
Home now after being in hospital for 45 days
Canasa, Lialda, Vancomycin, Flagyl, Colestipol, Pred 80 mgs, Remicade (3rd infusion due 5/22/08), VSL#3, FloraStor
Still having problems, hoping for a remicade miracle
Need to get off the pred ASAP


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 7/20/2008 11:03 AM (GMT -6)   

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!


Female, Age 19, Dx w/ UC August 2007
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis), 1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (2nd infusion 06/26/08), 2.4 g Lialda, 1 Forvia, 9 Colazal/day
*exploring the option of surgery
 


marty1976
Veteran Member


Date Joined Nov 2005
Total Posts : 2045
   Posted 7/20/2008 2:35 PM (GMT -6)   
yeah   yeah yeah yeah yeah yeah yeah yeah yeah So happy to see you are back buddy! yeah yeah yeah yeah yeah yeah yeah yeah
 
 I was getting really worried about you.I see from your post just how bad things became for you.That MRSA bug is so dangerous too, you have went through hell by the sounds of it.Hopefully the next few months will fly be and things start going a bit better for you.
 
                                                    Marty
                                     keep the faith 

         asacol/proctifoam/Zoton (lansoprazole)/pred/colofac


       
            http://www.myspace.com/martybuzz1<FONT]


Kiss520
Veteran Member


Date Joined Jun 2008
Total Posts : 742
   Posted 7/20/2008 7:34 PM (GMT -6)   
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
Female, 30.   Chicago 'burbs.
DX:  Ulcerative Proctitis (10cm) January '08
Current Treament:  Rowasa 60 ML 2X daily, Cortenama 100 ML 1X daily, Bentyl 20 MG 4X daily (as needed), Tylenol, and Acidophilus 2X daily.
Diet/Exercise:  No sugar (including fructose, sorbitol, mannitol, and lactose) or wheat bran fiber.  Daily yoga, walking, or cardio w/weights.
Previous Treatment:  Canasa suppositories, Cortifoam, Prednisone, Colazal, Symex DuoTabs, Vitamins.
Status:  Flare (showing some improvement)
 
 


Jjc2007
Regular Member


Date Joined Apr 2007
Total Posts : 194
   Posted 7/20/2008 10:34 PM (GMT -6)   
Hi Bob

Welcome back and hope you continue on a positive healing path. You have had a rough time of it.

I have only been on the bbs for about a year or so but I have lived with UC since I was a teen. Now I am 62, and my total years with UC is coming up on 47 years. I guess I am lucky in that my flares have been minor for quite a while now. I was at my worse from 15 to about 35. My mid twenties were my worst when I quit going to doctors for a while. But somehow I muddled through, continued to teach (was a great disciplinarian in that my kids alway know their behavior had to be stellar whether I was in or out of the classroom as I never knew when I would have an urgency problem). But I made it every time, and am still here in tact.

And then three years ago I had to have open heart surgery to repair my aorta which had an aneurysm in the root...it's a familial thing. I figured the surgery might set off a flare but it didn't.

I don't know that I have ever been in total remission but for some reason the flares became less intense after menopause. Some of the women might understand that because when I was younger my UC flared monthly sometimes along with my cycle. I always wondered if there was a hormonal connection with women who have this disease. I got sick about one month after my first menstrual cycle at 15 and it came on fast and furious.....all at once. I started getting better after "the change."

Anyway my best to you. I see my GI tomorrow to schedule my yearly colonoscopy.

Take care.
diagnosed with UC in 1962
regualr meds:
Asulfadine (500mg tablets, 6 daily)
Folic Acid
Zantac as needed
open heart surgery in 2005 for removal of aortic root aneurysm


Severin
Regular Member


Date Joined Oct 2007
Total Posts : 320
   Posted 7/21/2008 5:50 AM (GMT -6)   
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.
"We are dreamers, shapers, singers and makers..." - Elric, Technomage
  • 28yo male. Brisbane, Australia. Diagnosed at 16yo. Currently enjoying severe pan-colitis.
    - Participating in the Golimumab trial as of 1st May, 2008;
    - 2x Colazide, twice a day; 25mg of 6-MP a day; 1xAllopurnol;
    - 1x teaspoon of Metamucil 3 times a day;
    - 3x Garlic oil capsules & 7mL Olive Leaf Extract twice a day.

New Topic Post Reply Printable Version
29 posts in this thread.
Viewing Page :
 1  2 
Forum Information
Currently it is Thursday, July 19, 2018 10:45 AM (GMT -6)
There are a total of 2,983,165 posts in 327,091 threads.
View Active Threads


Who's Online
This forum has 161895 registered members. Please welcome our newest member, lejame.
424 Guest(s), 11 Registered Member(s) are currently online.  Details
Michelejc, Lapis_29, Kent M., ashleylynn, Zen9, Michael_T, skeaibe, Tudpock18, jmadrid, RobLee, delisa