remission for 17 Years And Counting

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Jennifer

Jennifer

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Diagnosed when I was 9 years old 20 years ago. Have been in remission since my resection in 1999.

My GI docs: I saw Dr. Ricardo Castillo up until my resection (8 inches of TI removed) who's a GI at Lucile Packard Children's Hospital at Stanford California. He's the best GI I've ever had (my current one, Dr. Thomas Hsia (pronounced "shaw") is ok but we don't have the same history of friendship as my old one).

Schooling: Since my resection I finished high school, community college, undergrad and grad school so I could become a teacher (I'm not yet but will be some day).

Treatment after resection: I was fully tapered off of Prednisone and Budesonide/Entocort and took 2,000mg of Asacol per day (500 2x/day) and 65mg of 6MP. I took the Asacol and 6mp at those doses for 10 years until my most recent GI took me off of Asacol entirely and lowered my 6MP dose to 50mg.

Current Treatment: Currently I'm only taking 50mg of 6MP to treat Crohn's. I was taken off Asacol over 2 years ago because my new GI doesn't think I need it anymore since I'm doing so well. We've both agreed that going off of medication entirely will only invite another flare so I'll be taking meds for the rest of my life which I'm perfectly fine with because I've had very few if any side effects from most of the drugs I've taken for Crohn's. I also take Lomotil as needed and have monthly B12 shots as I don't absorb it well since my resection.

Edit: Current treatment is now only 6MP 50mg.

Diet/Exercise: I DO NOT follow any particular diet plan and the only times I ever did was before procedures or during a very bad flare. I also DO NOT exercise as its a lot of work, boring and makes me tired. :p Well and I'm also dealing with a bout of depression but I'm working on that.

Flares: I've have 3 flares in total. The first one at 9 years old I was bleeding and taken to the ER when I got a diagnosis after 2 months of being hospitalized. I was treated with Azulfidine, Prednisone, Iron, and Folic acid. My GI was 4 hours away and I saw him about 2 times a year. My second flare at 13 years old left me hospitalized again and I was taken off Azufidine and put on Asacol, Prednisone and 6MP/Purinethol/Mercaptopurine. My third flare at 16 years old was treated with the highest doses of Prednisone, 6MP, Asacol and Budesonide/Entocort for my body weight for over a year before they decided to do a resection as the medication was not working.

Procedures/Surgeries I've had: Cat scans (with and without contrast, MRIs, Barium X-rays (both swallow and enema), Colonoscopies, Endoscopies, Ultrasound, Central IV/Porta-cath, and Bowel Resection. My resection site got infected and I had to get it packed with gauze twice a day for a month so it could heal from the inside out.

Why I joined the forum: I joined this forum while I was and am still in remission because I was looking to be able to help people. I didn't have a forum to go to when I was sick and I would have loved to talk to people who were in remission so here I am for all you guys. :D I also have many stories to share (good and bad) if anyone would like to hear any about anything listed above.

Edit: Going on year 15 for remission. :dance:
 
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CrabbyRelish said:
Why I joined the forum: I joined this forum while I was and am still in remission because I was looking to be able to help people. I didn't have a forum to go to when I was sick and I would have loved to talk to people who were in remission so here I am for all you guys. :D I also have many stories to share (good and bad) if anyone would like to hear any about anything listed above.
Click to expand...

That's why I joined too! Twelve years of remission is amazing! I can only hope that I have another ten years! Thanks for sharing your story- it is truly inspiring. Question- how often does your GI have your blood taken to check your levels for 6MP? I always worry that my GI doesn't check mine enough. I'm going for bloodwork this week, so it's on my mind. 6MP is my only medication right now too, and I haven't had any problems with it.

What kind of teacher do you want to be?

Thanks for sharing,
Karissa
 
12 years of remission-well done you thats fantastic.
Rgds
Grant

1st symptoms 1983
Diagnosed 1985
1997 Right Hemicolectomy & Resection
2002 Laperotomy & Resection
2010 Laproscopic Ileocolic Resection

Been on Azathioprine & Pred

Currently on Entocort 3mg every other day
Humira 40mg every two weeks
Calcichew
Pentasa 4gm daily
3mthly B12 Jabs
 
Karissa said:
how often does your GI have your blood taken to check your levels for 6MP?

What kind of teacher do you want to be?
Click to expand...

Once a month. If it doesn't get checked then my prescription doesn't get filled as it requires doctor authorization.

I got my Masters in Sculpture so I'd like to teach college level sculpture, ceramics or even drawing really.
 
Thank you Crabby for you story and thank you for participating in this forum as it truly does help us who are suffering. I wish you all the best on your endeavors as a teacher! I am sure you will be a great one: )
 
WOW ! 12 years ?!!?!!
THAT is impressive and gives me hope !
Thank you so much for sharing your story Crabby :)

~hugs~
 
Wow! I didn't know you have been in such a long remission, especially being you are such an active member; most members have active Crohn's. This is such wonderful news.

I hope you have many, many more years of remission!
 
Wow, your story has brought such hope to us and others on this forum and we wish you many more years of remission.

Well done
 
I hope I can get there someday I'm aiming for the 1 month mark right now but every day for the last 7 months I've had to keep starting over. The closest I've been to being in remission was from May of last year to around December of last year while on 50mg of Imuran and 1g of Pentasa. I would say 70-80% of my symptoms were gone then though I still felt pretty crappy during that time.
 
You guys will get there for sure! :D I just hope you all keep coming to the forum when you do cause there aren't enough people on here who are in remission. :)
 
I'm no longer in remission unfortunately but I'm willing to answer any remission related questions as it was so long and very recent.
 
Sorry to hear about that, especially after you'd been doing so well, but I guess that's the way it goes. Anything changed recently that you could attribute it to? I've been in remission for 5 years and had moments where I thought I was going to flare up, but so far I've been able to keep it in check without increasing meds.

Here's hoping you get this sorted quickly and have another 12+ years in remission...
 
I agree, I'm sorry to hear that your 12 year streak has come to an end :( However, it's quite awesome that you were able to go 12 years.

Artheta, congrats on your 5 year mark too! I've been mostly symptom free since July 1st of this year so I'm almost at 1 1/2 months ;) Today is a bad day though but I'm hoping it's just a bad day in general and not another flareup.
 
I am so sorry about your recent flare.

Let's hope this one passes quickly, and you'll have another 12+ years of remission!
 
artheta said:
Anything changed recently that you could attribute it to?
Click to expand...

Extreme mental stress (grandpa had a massive stroke and I was one of his 24hr caretakers for 6 months and had to deal with my mom having a mental break down because of all the business that happened at my grandparent's house) and being taken off of Asacol last October. Other than that, nothing. My advice, if the options above come up, flee from your family and stay on those meds even if your doc thinks you could go off and be fine. Maybe I would have been fine, dunno. It could just be the nature of the beast and it may just be my time.
 
WELL FALSE ALARM! :p

So went to the GI today and he does not think I'm in a flare. What he told me is that since I've already had a resection chances are I'm collecting a lot of bacteria in my gut at the resection site (due to pockets or abnormalities caused by the surgery) making it so I'm not digesting properly which is causing mucus and showing slight inflammation. Apparently my GP read my blood work wrong. He said my inflammation markers went from an 8 to 25 when really it went from an 8 to a 9.3. Really not that much of an increase over the course of a year.

He wants me to stay on Entocort and the 75mg of 6MP to see how I do (he said both can be used as maintenance drugs) and to start taking probiotics (Acidophilus) to increase the amount of good bacteria in my gut in hopes that they'll fight off the bad bacteria. It was either that or antibiotics but that'll kill the good bacteria too.

He said that this may become common since my resection and that it doesn't mean I'm in any type of flare. So good news really.

So still in remission for 12 years and counting baby!
 
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Happy happy news Crabby!

Congratulations

May it keep on keeping on mate!

So happy for you...:panda::panda::panda:
Dusty. xxxxxxxx​
 
Tku so much for sharing your story. I am new today and am reading how people are getting along - I sorely need hope today. Question - I am going to my PCP in two days for a bronchial infection and blood work. What should I ask for and look for? I will have both my PCP and my GI review the results with me - plus one for my files. Tku so much again for sharing and I am so happy for you.
 
Thanks for sharing this good news and I guess that is what the separate "success stories" thread is about too.

After three days on Prednisone I now remember what "normal" or close to it. We'll have to try to get that same feeling with sustainable meds but to have that long remission as a goal/hope/possibility for me is a big big help. I am so pleased for you and glad you have come in here to help those who are hurting.

Bless you.
 
Just realized another year has passed. Now its 13 years and counting. :D


Sorry I missed your question Pooh. Was a rough few months recently and I wasn't on the forum as much. Hope you got everything sorted out.
 
Crabby, if you happen to read this sometime, would you mind clarifying your month-long ordeal with post-op infection of your resection site & gauze-packing? Are you talking about an internal infection, inside your abdomen where your bowel was resected or do you mean your incision where they sewed your skin back together? I'm having a hard time envisioning what happened exactly? Did you have to be in the hospital for a month for that or not? Any idea why the infection occurred? Were you doing lots of prednisone at the time? My surgeon told me he would want me down to 10mg pred/day before he would be inclined to operate on me, due to the risk of infection when on pred.
 
Luckily the name tagging works Mark in Seattle so I do see your post. ;)

I was on Prednisone and Entocort before my resection. Both were still high doses and I was just beginning to taper off the Pred so I may have been on 50-40mgs at the time (coming down off of 75 or 60mg I can't remember which). They told me that there may be complications healing because of the swelling/water retention the steroids cause over long term use and on high doses. The fat layer above the muscles were too thick as a result.

My intestines healed, the muscles healed and so did the skin layer but the fat layer above the muscles and below the skin did not. I was sent home a week after my surgery. That very night I started having a lot of pain so I took a pain pill in the middle of the night. I woke again feeling nauseated and assumed it was because of the pill on an empty stomach and tried to sleep. I woke again vomiting over the side of my bed. I don't know why I didn't think it wasn't important enough to tell anyone. My father had to work in the morning and I guess I just wasn't thinking straight and still thought it was the pain pill and that we could clean it in the morning (I was 17 at the time). I woke again and my parents had left (we only have one car so my mom drops my dad off at work) and decided to get up and use the bathroom. While I was sitting on the toilet I started to throw up again and with all the violent heaving I guess, my skin layer broke open and a foul smelling orange ooze spilled out. I covered it with a wad of toilet paper and went to see what time it was. 15 more minutes until my mom came home. I laid in bed and waited. Once my mom came into the door I yelled for her and she ran in and I lifted the toilet paper. We drove so fast to the nearest hospital (I had my surgery done where my specialist works 4 hours north of here).

They had me drink some contrast and did a CT scan then suddenly everyone was at the hospital (my dad, grandparents, pastor from our church etc.). They said I needed to go back to my surgeon and GI so we drove up there that night. I don't remember what sort of packing job they did on me at the first hospital. When I got there my GI, surgeon and a whole class of students learning how to be surgeons were there waiting for me. I was given an IV and given Versed. I told them they had to wait, they said they couldn't. On my lap they laid out their instruments one being a nice pair of scissors. I was horrified and yelled for them to wait for the Versed to take effect, they said there was no time and proceeded to clean the area with a saline solution and then all of them hovered around and told me to hold still as the surgeon began to cut the skin back open which had already healed. Truly, I felt no pain as the area was numb but I could feel my stomach opening. I got to see the wound and looked in horror. It seemed almost 3 inches deep. Red, completely unhealed. They said that luckily the muscle tissue was completely healed over and it was simply the fat layer that was poisoning me.

They wet down a lot of gauze with a saline solution and proceeded to pack my wound with it. They pushed it down deep with what looked like a Q-Tip but was just a long stick with one cotton end. It HURT. A LOT. Once it was filled (stuffed tight really) with gauze they placed a bandage over the top and told me that I must wash and repack the wound twice a day until it healed from the inside out. I stayed in the hospital for a week and there my mom learned how to pack my wound. We were sent back home and my mom packed it everyday for ~3 more weeks (could have been slightly longer) after I removed the previous packing and then scrub it clean in the shower (with a loofah and antibacterial soap) which also hurt a lot. My mom did her best to position my bellybutton but there was only so much she could do (dunno why my incision had to be right below it, I had a bellybutton flap for a while). Now it looks like a butt. A tiny butt but still a butt.

If I missed something feel free to ask.

Edit: I made it talk in front of my brother after my shower one time by opening and closing it (he's 6 years younger than me). His face was priceless but my mom yelled at me.
 
Crabby you are a hero...but hey beware i m here to break your record or remission period.lol.... :basketball:
 
Well done for 12 years remission, I have 4.5 years remission and am grateful for everyday and hope that I reach 12 years remission and then I will be back here sharing my story just as you are
 
Hey Crabby, so glad you're doing well for so long! Just wondering though, does my 25+ years in between my diagnosis count as remission? See my signature for history- it seems I must have had Crohns Colitis from the beginning. I'm still wondering how it all happened as well. :)

On a side note, when does the remission actually start? I'm not yet off Prednisone but I did come off the first time in August and my flare up got worse. So this time my last day of Pred is scheduled for Feb 19. If after that date I don't get worse, does that mean I'm back in remission?
 
This is an interesting question. To me (having once had three months remission) there are three options: flare, active controlled, remission. With Humira I am in active disease, controlled mode. When I eventually get remission back I will "feel well" mostly. Roll on.
 
Hobbes650 if you had few to no symptoms and tests were clear of active disease then yes I'd say you were in remission. Could have been a misdiagnosis from the beginning, I really am not sure. There's remission, clinical remission and flare. remission should have few to no symptoms and tests should show all clear. Clinical remission (measured by the Crohn's Disease Activity Index (CDAI)) will show some symptoms and most testing should be clear. A flare is when symptoms get worse and the disease is active and can be seen during testing.

If you come off the Prednisone and go back to having more symptoms with more inflammation then you're likely back into a flare but if things don't get worse then you're likely in the clinical remission or remission stage (I say this because I don't know if you're having any minor symptoms at all right now).

Most people do have a hard time coming off Prednisone so hopefully this time it will be a really slow taper and I hope your symptoms don't get worse or return. :)
 
Crabby said:
Hobbes650 if you had few to no symptoms and tests were clear of active disease then yes I'd say you were in remission. Could have been a misdiagnosis from the beginning, I really am not sure. There's remission, clinical remission and flare. remission should have few to no symptoms and tests should show all clear. Clinical remission (measured by the Crohn's Disease Activity Index (CDAI)) will show some symptoms and most testing should be clear. A flare is when symptoms get worse and the disease is active and can be seen during testing.

If you come off the Prednisone and go back to having more symptoms with more inflammation then you're likely back into a flare but if things don't get worse then you're likely in the clinical remission or remission stage (I say this because I don't know if you're having any minor symptoms at all right now).

Most people do have a hard time coming off Prednisone so hopefully this time it will be a really slow taper and I hope your symptoms don't get worse or return. :)
Click to expand...


I hear that. I'm an old pro now when it comes to tapering off Pred. On 10mg per day and my last day is Feb 19 so that's pretty slow. Soon after I stop I'll get scoped again and hopefully my doctor will declare me "out of the woods" so to speak. Not quite there yet, but I've been vey fortunate in that I'm really not having any symptoms from the disaese. No pain, no fever etc, just a little gas/belching. The Pred is what's kicking my butt right now.

As an fyi, I hate to use the term "misdiagnosed" even though it's clear I did not have Ulcerative Colitis. Problem is, there were zero signs of Crohns until this year. Everything about my initial experience showed UC, even the pathology report of the colon/rectum after removal confirmed UC. My surgeon said it wasn't really noteworthy- the colon looked just like every other one he'd removed for UC. All of that proved to me that surgery was necesssary and indicated I was "cured" of UC. However when my j-pouch kept having problems one hypothesis was that the little stump of rectum left behind (where the anastamosis was) could have some disease left which was causing the problems but nobody could prove that. That seemed to be the case with me as my j-pouch problems were like the Energiver Bunny- they kept going, and going so we ultimately went with ileostomy. I only share the story because I've noticed that with IBD people use the term "misdiagnosed" a lot. One can easily go nuts trying to figure this illness out. :ybatty:

I also share the story to illustrate anything seems possible with this illness. Your 12+ year remission could turn into 25 and I wouldn't be surprised one bit. But I'll still be keeping my fingers crossed. :)
 
Hi guys,

Crabby, would you recommend surgery? I have had Crohns since 2008, at initial stage I was placed on Prenisones and Asacol 500mg. The prenisones i tapered down. Asacol worked for a while, then my doctor put me in Azathiprine 2010. no meds seem to work unless i am taking prenisones with it. I have been in hospital for flare ups 3 times since Nov 2011, i am scared of having surgery donw as the is risk to it and the reality of the crohns returning. I have read your story and I would give anything to be in remission. What is the recovery like after surgery, i have read and heard recovery is also difficult. :(

General: Has/Is anyone on biological injections? Revelex?
 
Zahid Hassan said:
Hi guys,

Crabby, would you recommend surgery? I have had Crohns since 2008, at initial stage I was placed on Prenisones and Asacol 500mg. The prenisones i tapered down. Asacol worked for a while, then my doctor put me in Azathiprine 2010. no meds seem to work unless i am taking prenisones with it. I have been in hospital for flare ups 3 times since Nov 2011, i am scared of having surgery donw as the is risk to it and the reality of the crohns returning. I have read your story and I would give anything to be in remission. What is the recovery like after surgery, i have read and heard recovery is also difficult. :(

General: Has/Is anyone on biological injections? Revelex?
Click to expand...

The biologics have good success with Crohns. Humira is injected, and Remicade is dripped in through and IV. There are others, but I don't know their names. I would think your doctor would recommend one of these before going straight to surgery.
 
Zahid Hassan said:
Hi guys,

Crabby, would you recommend surgery? I have had Crohns since 2008, at initial stage I was placed on Prenisones and Asacol 500mg. The prenisones i tapered down. Asacol worked for a while, then my doctor put me in Azathiprine 2010. no meds seem to work unless i am taking prenisones with it. I have been in hospital for flare ups 3 times since Nov 2011, i am scared of having surgery donw as the is risk to it and the reality of the crohns returning. I have read your story and I would give anything to be in remission. What is the recovery like after surgery, i have read and heard recovery is also difficult. :(

General: Has/Is anyone on biological injections? Revelex?
Click to expand...

Zahid Hassan I didn't have surgery until all options had been tried. Surgery cannot and should not be used as treatment for a chronic illness like Crohn's which will just keep coming back. We only have so much intestine to work with. If you haven't tried biologics yet then I'd suggest trying all medication options first.

Biologics weren't around at the time of my surgery and I would have tried them before surgery if I could have. Since my resection I've changed meds and have started on the biologics. Started with Humira but stopped that because I kept getting recurring upper respiratory infections. Now I just got my tonsils removed to try and give Remicade a fair chance at keeping me in remission (I don't go med free just because I'm in remission, its still a battle to stay in remission on the right meds for me). I'll be starting Remicade mid January. I'm told if that doesn't work out then next up is Cimzia.

I believe I posted my surgery recovery story in this thread. Its not an ideal recovery story because I got an infection which made healing not so fun and made it take longer to heal as well. I'll edit my post and paste it again for you. :)

"I was on Prednisone and Entocort before my resection. Both were still high doses and I was just beginning to taper off the Pred so I may have been on 50-40mgs at the time (coming down off of 75 or 60mg I can't remember which). They told me that there may be complications healing because of the swelling/water retention the steroids cause over long term use and on high doses. The fat layer above the muscles were too thick as a result.

My intestines healed, the muscles healed and so did the skin layer but the fat layer above the muscles and below the skin did not. I was sent home a week after my surgery. That very night I started having a lot of pain so I took a pain pill in the middle of the night. I woke again feeling nauseated and assumed it was because of the pill on an empty stomach and tried to sleep. I woke again vomiting over the side of my bed. I don't know why I didn't think it wasn't important enough to tell anyone. My father had to work in the morning and I guess I just wasn't thinking straight and still thought it was the pain pill and that we could clean it in the morning (I was 17 at the time). I woke again and my parents had left (we only have one car so my mom drops my dad off at work) and decided to get up and use the bathroom. While I was sitting on the toilet I started to throw up again and with all the violent heaving I guess, my skin layer broke open and a foul smelling orange ooze spilled out. I covered it with a wad of toilet paper and went to see what time it was. 15 more minutes until my mom came home. I laid in bed and waited. Once my mom came into the door I yelled for her and she ran in and I lifted the toilet paper. We drove so fast to the nearest hospital (I had my surgery done where my specialist works 4 hours north of here).

They had me drink some contrast and did a CT scan then suddenly everyone was at the hospital (my dad, grandparents, pastor from our church etc.). They said I needed to go back to my surgeon and GI so we drove up there that night. I don't remember what sort of packing job they did on me at the first hospital. When I got there my GI, surgeon and a whole class of students learning how to be surgeons were there waiting for me. I was given an IV and given Versed. I told them they had to wait, they said they couldn't. On my lap they laid out their instruments one being a nice pair of scissors. I was horrified and yelled for them to wait for the Versed to take effect, they said there was no time and proceeded to clean the area with a saline solution and then all of them hovered around and told me to hold still as the surgeon began to cut the skin back open which had already healed. Truly, I felt no pain as the area was numb but I could feel my stomach opening. I got to see the wound and looked in horror. It seemed almost 3 inches deep. Red, completely unhealed. They said that luckily the muscle tissue was completely healed over and it was simply the fat layer that was poisoning me.

They wet down a lot of gauze with a saline solution and proceeded to pack my wound with it. They pushed it down deep with what looked like a Q-Tip but was just a long stick with one cotton end. It HURT. A LOT. Once it was filled (stuffed tight really) with gauze they placed a bandage over the top and told me that I must wash and repack the wound twice a day until it healed from the inside out. I stayed in the hospital for a week and there my mom learned how to pack my wound. We were sent back home and my mom packed it everyday for ~3 more weeks (could have been slightly longer) after I removed the previous packing and then scrub it clean in the shower (with a loofah and antibacterial soap) which also hurt a lot. My mom did her best to position my bellybutton but there was only so much she could do (dunno why my incision had to be right below it, I had a bellybutton flap for a while). Now it looks like a butt. A tiny butt but still a butt."
 
Hello~

Just joined this forum today hoping to also provide hope to other's with Crohn's disease as I have been in remission for 20 years as of March 12th,2013!!

I am a 45 year old married female with three children, ages 10-18. I have been married for 19 years (yesterday was my Anniversary ~ I spent it prepping for my colonoscopy today, lol). I was very sick in the late 80's while I was in college with poor doctors in my area who failed to diagnose me in a timely way. Many chalked my illness up to stress and one doctor even threw me out of his office due to my "hysteria" and told me not to come back "until I pulled myself together". Two weeks prior to my major hospitalization, I was sent home from a "local" ER after the doc did a rectal exam and told me I was OK. They tried to sue me for the bill. Needless to say they lost and were lucky I didn't return the favor by suing them!!

I did complete college but became very ill and finally saw a doctor at Presbyterian Hospital in Philadelphia who saved my life. His name was Dr. Frost. Unfortunately, it was late in the game and I needed surgery. I was admitted on 2/28/93 and my resection was scheduled on 3/12/93. The next day was a horrible blizzard in Philadelphia and he couldn't get there to see me but called me routinely and checked in with the overworked nurses to keep track of my progress. I had an ileocecal resection with an appendectomy (why not, it was attached?). I was released days later. I had been engaged in December 1992 and went home to try to resume a normal life and plan my wedding. I was weaned off of prednisone rather quickly (probably too fast) and was placed on Asacol every day. I remain in remission to this day. I continued taking the Asacol but eventually switched to Pentasa when it was released. I remained on Pentasa through the birth of my second child in 1996 and have been off of all meds since then - 16 years!!!

I would like to say I have some miracle plan for all of you to help you achieve and maintain remission - however, I do not. I can only tell you some important decisions I have made throughout my illness:

1.) Eliminate as much stress in your life as possible.
You're saying "yeah, right, what planet do you live on???!! But seriously, I maintained remission through my marriage, 4 pregnancies (I lost one child early on and it was not related to my illness or meds), raising my children, career choices, and changes, a series of serious illnesses for my dad and my subsequent care taking, and a host of other "normal" human stresses. The trick is to prioritize and realize your capabilities. You are no good to others if you are not healthy.

2.) Find a doctor you have faith in.
In my case, I had a doctor I loved like a grandfather. He ended up moving to Maine and actually worked at the Pentagon and was there on 911. He saved many lives that day. We have lost touch but I think of him almost daily and thank God for placing him in my life. I also had a great surgeon. After my doctor relocated I remained at Presbyterian for a while but really didn't like the doctor that much. Sometime in the 90's I transferred to Jefferson and started treating with one of my original doctors partners. They had left for Jefferson after Penn took over Presby. It was the best move I have ever made. He is the Director of the GI Division and has kept me and a family member on. Again, I am very grateful that he has kept me on.

3.) Continue regular follow-up no matter what.
Even when you feel well you have to go see your doc for lots of reasons. If nothing else, you will continue to build a relationship and this is sooooo important with ANY chronic illness. I have yearly exams and colonoscopies every 5 years. I had my most recent today and am thrilled to tell you all looked well. I hate them but I do it anyway. When I have a problem and call the office, I ALWAYS hear back from them promptly because they know me so well that they realize I would never call if it wasn't a valid concern or problem.

4.) Watch your diet and listen to your body.
There are lots of things I can no longer eat. It has been a slow and steady process of elimination over the course of my life. Ironically, I am overweight at 5'4" and 190 lbs. I can eat all of the junk food carbs I want but I am lactose intolerant and have difficulty digesting meat (I eat no read meat at all except ground beef occasionally), I can't have any caffeine either. There are lots of things I love but don't touch them because I know better. It's not worth it, I'll eat a brownie instead.

I feel pretty crappy right now. The scope today was difficult and I am not feeling so hot. I was perusing the internet looking for others to explain this because I have never experienced it in all of my six colonoscopies. Usually I feel great and I am starving and eat whatever I want. Today I was nauseous and have fire butt diarrhea and no appetite. But I came across this thread and felt compelled to write. I have never done that before. Maybe it was the Ellen Shows "Kindness Week" show today that compelled me to "pay it forward" and try to help others. I don't talk to others much about my disease. When I do, most people don't seem to take seriously how very sick I was (near death actually, I had a perforated bowel when I was admitted) because of how well I am today. I hope this post provides HOPE to someone else, even if it's one person and for one day!! It has not been an easy road with this disease, and there have been many sacrifices and tough decisions along the way. But I have always said that if this is the worst I must endure, I feel grateful. It is not a death sentence, it is treatable, it is not terminal, it can be overcome. I pray every day my remission will continue. I also pray for better medicines or even a cure in case it does not and for all the others suffering. But in the meantime, I know that I am not alone.....and neither are you!!
 
Kimberly1967 said:
Hello~

Just joined this forum today hoping to also provide hope to other's with Crohn's disease as I have been in remission for 20 years as of March 12th,2013!!

I am a 45 year old married female with three children, ages 10-18. I have been married for 19 years (yesterday was my Anniversary ~ I spent it prepping for my colonoscopy today, lol). I was very sick in the late 80's while I was in college with poor doctors in my area who failed to diagnose me in a timely way. Many chalked my illness up to stress and one doctor even threw me out of his office due to my "hysteria" and told me not to come back "until I pulled myself together". Two weeks prior to my major hospitalization, I was sent home from a "local" ER after the doc did a rectal exam and told me I was OK. They tried to sue me for the bill. Needless to say they lost and were lucky I didn't return the favor by suing them!!

I did complete college but became very ill and finally saw a doctor at Presbyterian Hospital in Philadelphia who saved my life. His name was Dr. Frost. Unfortunately, it was late in the game and I needed surgery. I was admitted on 2/28/93 and my resection was scheduled on 3/12/93. The next day was a horrible blizzard in Philadelphia and he couldn't get there to see me but called me routinely and checked in with the overworked nurses to keep track of my progress. I had an ileocecal resection with an appendectomy (why not, it was attached?). I was released days later. I had been engaged in December 1992 and went home to try to resume a normal life and plan my wedding. I was weaned off of prednisone rather quickly (probably too fast) and was placed on Asacol every day. I remain in remission to this day. I continued taking the Asacol but eventually switched to Pentasa when it was released. I remained on Pentasa through the birth of my second child in 1996 and have been off of all meds since then - 16 years!!!

I would like to say I have some miracle plan for all of you to help you achieve and maintain remission - however, I do not. I can only tell you some important decisions I have made throughout my illness:

1.) Eliminate as much stress in your life as possible.
You're saying "yeah, right, what planet do you live on???!! But seriously, I maintained remission through my marriage, 4 pregnancies (I lost one child early on and it was not related to my illness or meds), raising my children, career choices, and changes, a series of serious illnesses for my dad and my subsequent care taking, and a host of other "normal" human stresses. The trick is to prioritize and realize your capabilities. You are no good to others if you are not healthy.

2.) Find a doctor you have faith in.
In my case, I had a doctor I loved like a grandfather. He ended up moving to Maine and actually worked at the Pentagon and was there on 911. He saved many lives that day. We have lost touch but I think of him almost daily and thank God for placing him in my life. I also had a great surgeon. After my doctor relocated I remained at Presbyterian for a while but really didn't like the doctor that much. Sometime in the 90's I transferred to Jefferson and started treating with one of my original doctors partners. They had left for Jefferson after Penn took over Presby. It was the best move I have ever made. He is the Director of the GI Division and has kept me and a family member on. Again, I am very grateful that he has kept me on.

3.) Continue regular follow-up no matter what.
Even when you feel well you have to go see your doc for lots of reasons. If nothing else, you will continue to build a relationship and this is sooooo important with ANY chronic illness. I have yearly exams and colonoscopies every 5 years. I had my most recent today and am thrilled to tell you all looked well. I hate them but I do it anyway. When I have a problem and call the office, I ALWAYS hear back from them promptly because they know me so well that they realize I would never call if it wasn't a valid concern or problem.

4.) Watch your diet and listen to your body.
There are lots of things I can no longer eat. It has been a slow and steady process of elimination over the course of my life. Ironically, I am overweight at 5'4" and 190 lbs. I can eat all of the junk food carbs I want but I am lactose intolerant and have difficulty digesting meat (I eat no read meat at all except ground beef occasionally), I can't have any caffeine either. There are lots of things I love but don't touch them because I know better. It's not worth it, I'll eat a brownie instead.

I feel pretty crappy right now. The scope today was difficult and I am not feeling so hot. I was perusing the internet looking for others to explain this because I have never experienced it in all of my six colonoscopies. Usually I feel great and I am starving and eat whatever I want. Today I was nauseous and have fire butt diarrhea and no appetite. But I came across this thread and felt compelled to write. I have never done that before. Maybe it was the Ellen Shows "Kindness Week" show today that compelled me to "pay it forward" and try to help others. I don't talk to others much about my disease. When I do, most people don't seem to take seriously how very sick I was (near death actually, I had a perforated bowel when I was admitted) because of how well I am today. I hope this post provides HOPE to someone else, even if it's one person and for one day!! It has not been an easy road with this disease, and there have been many sacrifices and tough decisions along the way. But I have always said that if this is the worst I must endure, I feel grateful. It is not a death sentence, it is treatable, it is not terminal, it can be overcome. I pray every day my remission will continue. I also pray for better medicines or even a cure in case it does not and for all the others suffering. But in the meantime, I know that I am not alone.....and neither are you!!
Click to expand...

It's now mid 2017 but I am so grateful to have found this. It gives me hope for my 9 year old daughter, just diagnosed. Thank you for the hope which is so desperately needed.
 
Thanks for sharing experiences, I come here to learn from other's experiences and for some company. One can learn a lot from others who have to live with the scourge, and if I may say my health is better for it.
 

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