"unnecessary" surgery?

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ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 5/24/2008 10:05 PM (GMT -6)   
Has anyone here opted for surgery when it wasn't completely a last resort or absolutely necessary? I mean, there were still meds you could try or things you could do but you went for the surgery anyway?

I guess what I mean is... I've had ulcerative colitis for 8 years. That's nothing compared to some, I know. And there are a few medications I haven't tried- Remicade, Humira, Lialda, and things that haven't made it to the market yet. I'm not on my death bed and I'm not having severe complications. But still. When I'm in a flare (which I've spent most of my disease life in, and am in now) I can't go grocery shopping by myself because I know I'll have to use the restroom at least once and don't want to leave my cart unattended. I can't go to social outings where there are no bathrooms. I don't even like to go to other peoples' houses because I don't feel comfortable running in and out of someone else's bathroom. I wake up and head straight for the toilet, and usually get out of bed twice before falling asleep. Even if I find a medication that can control the symptoms, there's no guarantee that they won't come back, sooner or later. And who wants to take 20 pills a day for the rest of their life, anyway? Especially when the potential long term effects range from liver damage to cancer, infertility, bone loss, etc. Who knows if it would even be worth it.

I'm not thinking about running out and getting a surgical consult tomorrow. I'm just saying... I think at some time in my future I want to opt for surgery, regardless of how I'm doing, because I just want to get rid of my colitis once and for all, and most people live such full lives after having surgery, and it would be so nice to be able to go shopping AND get some lunch in between without worrying about whether it will ruin the rest of my day because I'll have to run to the bathroom in the store three times before I just give up and go home.

Am I crazy for feeling this way? I mean, most "normal" people would say they wouldn't just give up their colon unless it was life or death and they had to, but sometimes I feel like even though I know it's not hopeless and I can still find a way to "control" the colitis, it still won't be a great way of life and I'd rather just get RID of it altogether.

Sorry for the slightly incoherent rant. I'm a bit tired, and it's a lot to be thinking about!
Female, 22, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in hip & lumbar region of the spine from long term prednisone use.

Current Meds:
10mg Lexapro (for depression/social anxiety)
Digestive Advantage: Crohn's and Colitis formula (2 pills per day, started 5/14/08)
125mg Azathioprine
4800mg Asacol (Four 400mg tablets, three times a day)
 
 
 


slim18996
Regular Member


Date Joined Apr 2008
Total Posts : 99
   Posted 5/24/2008 10:44 PM (GMT -6)   

I don't see where your thinking is wrong or crazy.  I am having surgery this Tuesday, the 27th.  I am not on my "death bed" so to speak but the disease has taken my life away from me completely.  No outings, no trips that are not doctor appointments, I have no life outside the washroom.  I had been thinking the same thoughts as you prior to my most recent hospitalization and that is when "fate" stepped in.  I was in ICU for seven days and almost didn't make it.  The disease went from being a really bad inconvenience to almost fatal in a heartbeat.  This is when I decided I needed a more aggressive approach if I wanted to see my children graduate.

I too have never been on the Remicade or Humira and my GI even said that with the problems I had with the Imuran that it increased my chances of having problems with them.  I talked with him about it first and he also pointed out the continual use of medicines for the next 30 plus years and all of the damage that my other systems would face throughout that time.  It shocked me that a GI doctor would say that considering he was basically "giving up" one of his patients by suggesting surgery.  The surgeon let me know that the one big change everyone notices is feeling "healthy" when it is all done.  I have heard from others, and hopefully some will chime in here, that the slow progression of this disease will keep a person incoherent to how sick they are.  We tend to get use to what we go through and just pass it of as normal.  I have spent this week comparing how "healthy" I feel today compared to say ten of fifteen years ago and I can see that I don't accomplish half of what I would have done back then.

I can't say that I would have come to this conclusion this quick without my little trip to the ICU but I can say that I was starting to entertain it prior to so I would have eventually gotten here.  I would say continue what you are doing which is asking questions and researching.  The surgery would go better if it is done when it works for all involved and not when that is the only choice left.  Surgery is just one more way of treating (actually the only known cure) of this disease.  25% to 40% of all UC sufferers eventually have the surgery, so it is one of the main ways of treatment if you ask me.  Those stats are from the Mayo Clinic so I would guess the accuracy to be better than most.  You said that you could still find a way to control the colitis but in all actuallity you may be letting it control you.  I tried working around the disease and have adjusted so much that I ran out of adjustments I could make, so much for me controlling it.  I hope others who have gone through it already can give you better advice then me since I am just starting the process.

John


  • Diagnosed with UC 2003 (but had sympoms as far back as1993)
  • Hospitalized 3/08 for sepsis, 7 days ICU due to complication brought on by prolonged use of steroids
  • Current status = flair (no remission in five years)
  • Prednisone 40 mgs
  • Asacol 1200mg three times a day
  • Protonix 40 mg twice a day
  • Levbid 0.375 twice a day
  • Calcium 600 mg


Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 551
   Posted 5/25/2008 12:22 AM (GMT -6)   
We have had the same feelings as you. My daughter had her first flare only a year and a half ago. No symptoms ever before that. She is on her 3rd flare. Each time she would try a new medication. It would seem to work (of course she was on prednisone also) and then, a new flare. She has tried almost all the medications. Back in the fall (her 2nd flare) the doctor recommended that she see a surgeon "when she was in remission" just to get details. We thought it was a great idea and figured this spring would be the time. Unfortunately she flared again in March. Each time she flares, she has a horrible first month. 30+ trips to the bathroom (with urgency) within the first 4-5 hours when she wakes up. Then she is just plain wiped out for the rest of the day. Once the medicine (probably the prednisone) finally kicks in, she slows down to a few times a day and very little urgency. When she is first flaring, surgery sounds fabulous.
 
We did meet with a surgeon 2 weeks ago. Surgery is becoming more and more of a reality to us. However, she is starting to seem like her old self again and, along with a thousand other reasons, surgery sounds so drastic. But the reality is that the medicines (Remicade, 6-mp) aren't really working and it is the horrible prednisone that is keeping her out of a serious flare. When the prednisone is finally out of her system, who knows. She missed 16 weeks total this year from school. She doesn't want to have to worry about if and when she will flare again. She doesn't want to take large amounts of probably toxic drugs the rest of her life in the hopes that she won't flare.  She doesn't want to get to the point where the decision for surgery is not her choice but because of an emergency. So the probability is that she will have surgery at the end of June/beginning of July. This will give her time to recuperate and adjust during the summer and before her senior year starts.
 
I would suggest you meet a surgeon. Find out as much as you can about what he suggests and what he does. Ask lots of questions. This way you will be as prepared as possible when, and if, you choose to have surgery.
--Mom of bratcat (17 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Current meds:
Asacol - 4 pills/3Xday, 2 tabs 6-mp/1.5 tabs 6-mp every other day, 35 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!


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 5/25/2008 7:55 PM (GMT -6)   
ediekristen-your story is almost exactly, word for word, what mine was, only i did try remicade and i didn't go shopping alone because of my child.
I didn't try all the meds, in fact all i tried was asacol, immuran, 6-mp and remicade. I never tried an enema, i would much rather have had surgery than do that. I was like you i knew that even if i found something that worked, i would always be waiting on it to fail, for the other shoe to fall. and i didnt' want to waste my life like that. If i hadn't have been complety symptom free while preg and wasn't missing out on so much with my son, i would probably never have considered surgery, but it just wasn't worth wasting time when i could be "cured" and be done with UC forever! the first time i went to the GI to talk to him about it, he said that was def an option but he wanted me to try remicade, it worked for two three months, i wish i hadn't tried it. Then i went back and he didnt' try to talk me out of it. I caught some flack from people for not trying everything. And there are alot of people who are dead set on keeping their colons, no matter how sick they are, and that to me, seems odd, but to them me having surgery before i ran out of options seemed odd.
I wasn't on my deathbed either, but i was sick, not my worst flare ever, but it is better to have surgery when you are healthy, or healthier, than to have it on your death bed.

homern
New Member


Date Joined May 2008
Total Posts : 13
   Posted 5/26/2008 1:09 AM (GMT -6)   
i'm really going through the same thing as you right now,same thoughts .im also in 8 years of almost non stop flaring with urgency and avoiding social meetings, anxious every time im in a public place and everything else you mentioned and im also having alot of thoughts about going to surgery before trying out all the meds out there- right now im taking  purinathol (like imuran) and predisone temporarily and also 5asa.
ive been offered remicade but im trying to avoid these type of treatments because im afraid of the long term effects like lymphoma even though they are very small.
 
 
 
my dilema is wether in a few years there will be new effective treatments for colitis that will replace the current not so amzing treatments (like supressing the imune system or steroids) which is good waiting for and "stalling time" for.
 
 
also ,in my knowledge even surgery doenst have 100% healing success right?

Shaz032
Forum Moderator


Date Joined Feb 2003
Total Posts : 1246
   Posted 5/26/2008 4:46 AM (GMT -6)   
It's really weird. You'll probably find that most of us who have had surgery will say we would have had it sooner and not have wasted so much time trying out all the meds if only we'd known how well we would feel afterwards. I guess hindsight can be a wonderful thing.
I have had an ileostomy for 32 years now due to UC.
 
Moderator of the Ostomy Forum
_______________________________________________
 
I'm not a complete idiot - some parts of me are missing!


lp
Regular Member


Date Joined Nov 2007
Total Posts : 29
   Posted 5/26/2008 9:26 AM (GMT -6)   
Ediekristen;
I think it is realistic to be thinking about your options. It may not be a life or death decision but a life quality decision now (it could be life or death in the future but you don't know).I don't know what type of outcome I would have had if I had waited for a non surgical cure - I was diagnosed in 1964 although symptomatic several years prior. If I had kept holding out for a non surgical cure I am not sure if I'd still be alive but I am sure that I would have not had a high quality life and would not be who I am today.Here I am, almost 40 years later and I can still remember the misery of UC. Would I have rather not had surgery - you bet - but only if I had a healthy colon. Having read the pathology report, I know that I made the right - and only - decision. So I had the benefit of confirmation of my decision based on that report, so I didn't have to undergo "buyer's remorse".

That said, having an ostomy is life-changing. How positive that change is depends to a certain extent on your physical recovery and your attitude. Have I always felt positively about having an ostomy - no, but I can say with all honesty that most of the time I don't even think about it because I am so darn busy with my life - and I don't have leaks or problems so I don't have to think about it anymore than people with colons have to think about their toileting.

Sometimes we have to make decisions without having all the data - even with all of the improved medical diagnostics there is still uncertainty. You could have the surgery today, and then a miracle cure become available tomorrow. Or you could still be waiting, 40 years later. It would be an easy decision if it was life or death. Since it isn't you have time to make a thoughtful decision and weigh the options. Only you can judge if this seems right for you - but there are no guarantees that the decision is the right one. We just do the best we can with the information we have at the time.

Best wishes.
UC diagnosed 1964
Ileostomy 1969


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 5/26/2008 5:00 PM (GMT -6)   
i had the same thoughts about waiting on a "cure" but i didn't want to waste my life waiting on a cure that may not ever come.
And as for it being a complete cure for UC, it is. If damage was already done to your body by the meds or the disease, that isn't cured, but the UC is gone, all the way!

ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 5/27/2008 12:24 PM (GMT -6)   
Thanks for the replies, everyone. They were very comforting!

Everytime I mention thoughts of surgery to people, they act like I'm crazy- especially people who don't have UC, like my family. But even some people with UC seem like they would do everything to keep their colons in hopes of a cure, which I certainly understand but at times it just seems almost pointless. I mean, I'm young and have so much that I'm missing out on, and what if I wait and wait and the cure never comes or it comes when I'm like 70 and I missed out on my whole life because I was clinging to this idea of a cure. Or what if I wait and then one day end up with cancer? Or I take all these maintanence meds and end up with osteoporosis and lymphoma and whatever. There's just so much to think about. And most people seem to think it's drastic and way too early to be thinking things like this, but the way I see it is if I get used to the idea now, if and when it comes time to actually do it, I'll be more happy about it and not so depressed or traumatized!

There was one other thing I was thinking about... Are ostomy supplies covered by most insurances? Or do you pay for it all out of pocket? I looked up some, didn't look too much into it but I was just curious, and it seemed like they were pretty expensive! How does the whole set up work exactly??
Female, 22, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in hip & lumbar region of the spine from long term prednisone use.

Current Meds:
10mg Lexapro (for depression/social anxiety)
Digestive Advantage: Crohn's and Colitis formula (2 pills per day, started 5/14/08)
125mg Azathioprine
4800mg Asacol (Four 400mg tablets, three times a day)
 
 
 


nene205
Regular Member


Date Joined Jun 2007
Total Posts : 302
   Posted 5/27/2008 12:53 PM (GMT -6)   
I can relate to the way you feel because I had those same feelings and fears for most of my adult life. I had UC and tried many, many sure-fire "cures". None of the enemas, patches, medicine, meditation, or natural stuff worked. I just became worse and worse. I was up to 80 mg of prednisone a day before my surgery. Then the last colonoscopy proved I had almost put it off too long. My doctor found dysplasia on the right side of my colon. I still wanted to put off surgery so I had another opinion and another opinion. Unfortunately, they all said the same thing. Last summer, I finally had the surgery. I felt like UC had won and I had been defeated. However, I am doing fine now. I have adjusted to the appliance that I have to wear and eat what I want.

My Blue Cross pays 80% of the cost for supplies. They don't seem to mind how much I order because they continue to pay Edgepark each month. Some people may have better plans. However, the cost isn't much for me to handle.

ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 5/27/2008 2:34 PM (GMT -6)   
After reading some posts and researching online, the J-Pouch seems great but at the same time, it seems like it would still feel like having colitis! They say most people go up to 10 times a day after surgery with diarrhea and it can take up to a year to fully adapt where you still go a few times a day. Does anyone here have the j-pouch? How did you deal with that? It seems that would be a little discouraging, getting your colon removed so you can stop running to the bathroom all the time only to have the same problem afterwards.
Female, 22, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in hip & lumbar region of the spine from long term prednisone use.

Current Meds:
10mg Lexapro (for depression/social anxiety)
Digestive Advantage: Crohn's and Colitis formula (2 pills per day, started 5/14/08)
125mg Azathioprine
4800mg Asacol (Four 400mg tablets, three times a day)
 
 
 


Tom1
Regular Member


Date Joined Mar 2007
Total Posts : 258
   Posted 5/27/2008 4:09 PM (GMT -6)   
Every now and then I complain about my ostomy then I bring myself back to reality by saying...remember the pain...remember the pain...remember the pain.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 5/27/2008 6:24 PM (GMT -6)   
lol tom1 that's a good thing to do.
my insurance pays for my supplies, i am not sure what percentage, but it's cheaper than all those meds!
i have heard other people say this, andi think they same, why are people fighting so hard to keep something that is literally tearing them up from the inside? this may seem like i am trivializing this but's its just alittle analogy. If you had a house plant, like some ivy, that was going crazy and taking over everything in your house, but it was always diseased, and you tried diff chemicals on it, but things weren't working. Would you spend the rest of your life trying to fix a diseased plant that was taking over everything?
No you wouldn't. And yes i know a colon is a lot more important than a plant, but it's the same basic thing.

i had the same thoughts about the j-pouch and that is why i didnt' have one.
Suebear on here has one, and she has had lots of success with hers. She will happen by soon i am sure.

nene205
Regular Member


Date Joined Jun 2007
Total Posts : 302
   Posted 5/28/2008 11:42 AM (GMT -6)   
summerstorm, I would definitely eliminate that sorry plant!!!

I would like to say that I never want to go back to 6 or 10 or 20 bm's a day either. I have read about some people having the j-pouch surgery who were very unhappy with it. Later on, they reverted back to an ileostomy. But then there is Suebear. She is one of the lucky, blessed ones.

I'm waiting for some miracle invention that can help me. Don't know what, but I am the eternal optimist*******Well, if scientists can put a "smart" robot on Mars, there is hope.
Jennie

ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 5/28/2008 12:55 PM (GMT -6)   
I don't know... I've been thinking a lot about it and I've decided that when I go for surgery I will probably go for the j-pouch first and if I don't like it or it doesn't work out then I will try out the BCIR because you can try that after a failed J-Pouch but not with a permanent ileostomy I don't think. And the Florida location that does the BCIR surgery is about 30 minutes at the most from my house which is great.
Female, 22, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in hip & lumbar region of the spine from long term prednisone use.

Current Meds:
10mg Lexapro (for depression/social anxiety)
Digestive Advantage: Crohn's and Colitis formula (2 pills per day, started 5/14/08)
125mg Azathioprine
4800mg Asacol (Four 400mg tablets, three times a day)
 
 
 


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5692
   Posted 5/28/2008 1:49 PM (GMT -6)   
I have a jpouch and do not have diarrhea.
Frequency is higher but there is no urgency, pain, or prolonged periods on the toilet. Emptying a pouch is as easy and quick as urinating.
None of the surgical options will give you the life you had with a healthy colon.
There are trade offs.
Recovery and adapation are about a year but that's not a year of sitting on the couch. I returned to work within 3 weeks of surgery and I returned to hiking within about a month. I traveled through Europe at 3 months post surgery and did a half marathon at 6 months. At year 2 I did a 200 mile hike across England. I have been back to Europe for hikes 2X since the England hike, have hiked in Patagonia this past December, hiked in and out of the Grand Canyon in September and am headed to the Sierras for an 80 mile hike this coming September and a 2 week hiking trip in Turkey in October. I am as active as I ever was with a healthy colon. I feel great and wouldn't choose to have my colon back!

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 5/28/2008 2:13 PM (GMT -6)   
Well, lucky for me I don't really remember life with a healthy colon! :P Of course I have times in remission and I know I could get lucky and go into one of those life long or many year remissions like some but I doubt it. And it's no way to live always waiting and hoping.
I'm so glad to hear you're doing so well and were able to do so much after surgery. I work as a secretary in the surgery department of a large hospital (and probably the hospital I would have my surgery at!) so I think going back to work would be very easy for me. At least I'd know if anything happened, there'd be at least 5 experienced doctors in the same building able to help! Haha

The more I think about it, the more fond of the idea I'm becoming. I think I'm just going to read through all the past posts here, talk to my new doctor in July and take it one step at a time.
Female, 22, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in hip & lumbar region of the spine from long term prednisone use.

Current Meds:
10mg Lexapro (for depression/social anxiety)
Digestive Advantage: Crohn's and Colitis formula (2 pills per day, started 5/14/08)
125mg Azathioprine
4800mg Asacol (Four 400mg tablets, three times a day)
 
 
 


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 5/28/2008 8:48 PM (GMT -6)   
Sorry for being a pain everybody. I just have another question...

How did you get your family to understand when you decided to have surgery?
I mentioned tonight to my boyfriend that I am thinking about it, and he instantly was like "No way! Why would you get rid of something irreplaceable when you could just wait for science to catch up?" And I was like "I'll probably end up with cancer way before that ever happens" and he just said "No you won't" and then we stopped talking about it. It's not that he doesn't want me to end up with a bag, it's that he, like most people, doesn't understand that you actually CAN live without a large intestine and think it's more like removing your heart. My family has had similar reactions when I started to mention surgery.

Did everyone act like you were crazy when you told them your decision? It almost feels to me like I'd just have to tell everyone "Oh, they found dysplasia so I have to get it removed" to get anyone to be accepting of it.
Female, 22, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in hip & lumbar region of the spine from long term prednisone use.

Current Meds:
10mg Lexapro (for depression/social anxiety)
Digestive Advantage: Crohn's and Colitis formula (2 pills per day, started 5/14/08)
125mg Azathioprine
4800mg Asacol (Four 400mg tablets, three times a day)
 
 
 


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 5/28/2008 9:33 PM (GMT -6)   
my mom was fine with it, my husband didnt' think i would be able to find a dr to do it, he didnt think i was bad enough off, my dad told my mom that nobody else was helpign me at least this would My grandma acted like a crazy woman about it! she was like, why do you want to do that, why are going to do that? i explained it to her, and she was fine with it, it was just harder on her to understand i think she just didnt' want me to have to do that. i was most worried about my sis, cause she is like me, we hate "bathroom" germs, (what that means is anything that goes into the bathroom, for instance if either of us should take a drink cup in the bathroom, we throw it away) and that is the ultimate in bathroom germs. It was stupid of me to worry though, i asked her if she would be grossed out and she got mad at me and told me i was being stupid for eventhinking i would be worried.
I think it helped that they had seen how extremely sick i had been, and all the hospital stays and all that.
I think what you should do is getlots of info about it, maybe even have them read on here about it

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5692
   Posted 5/29/2008 7:08 AM (GMT -6)   
I had zero family support (they thought I had celiac or that it was just a "food" problem) and I also lost 2 friends who were horrified (don't ask me why it affected them more than me) that I made this decision. At that point I didn't care what anyone's opinions were. Sure, I looked fine on the outside but I was not fine on the inside and I vowed to get my life back. You cannot convince anyone this is best for you, at least that was my experience. My family came back on board after my surgery when they realized how enormous the surgery and recovery were. My friends never did reach that same conclusion and I am better off without them.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 5/29/2008 12:24 PM (GMT -6)   
I printed out a lot of literature today from UOAA.com that I plan to read myself and then show points to my family/boyfriend... I also made a list of the potential (and scary!) long term effects of all the medications I am/could be/have taken and what my options are. Right now I'm at the point where I've tried almost everything but Remicade and although I know Remicade could be the answer, it's also a question of whether I'd rather take that forever and risk the very serious potential effects, or just get rid of the problem altogether. I think putting it this way may help them understand. At least, I hope so.
Female, 22, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in hip & lumbar region of the spine from long term prednisone use.

Current Meds:
10mg Lexapro (for depression/social anxiety)
Digestive Advantage: Crohn's and Colitis formula (2 pills per day, started 5/14/08)
125mg Azathioprine
4800mg Asacol (Four 400mg tablets, three times a day)
 
 
 


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 5/29/2008 6:21 PM (GMT -6)   
remember that it is your life and no one else is living it.  You are your best advocate and you have to do what you are comfortable with and will give you the best quality life.  Don't settle for anything else.

DixieS
Regular Member


Date Joined Nov 2005
Total Posts : 92
   Posted 6/2/2008 3:58 AM (GMT -6)   

 

I just glanced down the list here as I was thinking of posting, and you already posted what I was going to ask/say!!!

I am in just about the same spot as you are right now.  I am starting my first Remicade infusion (I have UC) in July.  I am thinking of just saving myself the time of trying Remi, having it fail like all of the other meds have, and then having surgery.  My husband is a nurse, and thinks that I am crazy to not "want" to try Remicade first (I am still scheduled, but want to talk to my GI first). 

I just don't think that over 5 years of meds is great, especially the steroids and immunosuppressants.  Remicade, Humira, and then all of the others (in trial stages) seem more scary, not to mention the cost.  I think of all of the things that I miss being chained to the toilet.  I want my life back!

I am currently in a flare, but this one seems less intense.  My cscope in Feb showed that this time was left sided UC, and not pancolitis, as before.  My longest remission was 6 months.  When is enough... enough?  How bad off does one need to be to have surgery?

I think that the j-pouch sounds like a good option for me.  Does this have to be a 2 or 3 stage process?

Dixie

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 6/2/2008 4:53 AM (GMT -6)   
I tried all of the medicines, including Remicade, and every natural diet for 7 years, but ultimately, nothing worked for me. I was the one who was anti-surgery, so my doctor recommended that I get a temporary ileostomy for 6 months to see if my colon would heal. Since I knew it was reversible, I agreed to try it out.

I was so surprised that I loved it! It gave me a freedom that I had not had in years. I could go anywhere and do anything without worrying about where the bathroom was. I could also sleep through the night without having to get up every hour to go to the bathroom, and I had energy again.

After 8 months, I started bleeding from the rectum, even though I wasn't using it, and that's when I said, "Enough is enough. What am I holding onto here? A diseased colon that could lead to cancer? No thank you! I'm keeping the ileostomy and getting rid of this diseased colon." I called the surgeon the next day and asked her to put me on her surgery schedule. That was in October 2006, and I have never regretted that decision for one second.

A couple of my family members (surprisingly BOTH doctors!) questioned if I was doing the right thing, and found out after seeing me healthy that I was. An ileostomy is completely hidden under your clothes, so nobody can even tell you have one. All they see is that I'm healthy, happy, and living my life to the full, and that's what really matters. :-)

Cecilia
Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again :)


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 6/2/2008 12:31 PM (GMT -6)   
Thanks flchurchlady. It's so nice to hear success stories and here from people who are so happy now even though they have a bag which most people would be unhappy about.
You know.. I've noticed, everyone I've talked to who has had surgery for UC/Crohn's has been VERY happy and hasn't regretted the surgery at all. The only people I've found so far that have been upset about it are people who a) had surgery for something else, like cancer with no previous symptoms, or b) people who had emergency surgery before they had a "chance" to live long with their disease. It seems like those who elected to have the surgery were the happiest, which is why I know I'm making the right choice in researching instead of waiting in denial until it's too late. I think I could get used to it if it meant no more pain and suffering and waiting for the worst with this disease....

Oh I wanted to ask... Are you in Florida? I assumed the "fl" in your name meant you are. Do you mind me what area you are in? I'm in the Tampa Bay area and I found there are three colorectal surgeons on my insurance plan so I plan on trying to find out which one is "the best"... Not sure how to go about doing that other than maybe visiting one of the ostomy support groups and asking around to see what surgeons everyone went to.
Female, 22, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in hip & lumbar region of the spine from long term prednisone use.

Current Meds:
10mg Lexapro (for depression/social anxiety)
Digestive Advantage: Crohn's and Colitis formula (2 pills per day, started 5/14/08)
125mg Azathioprine
4800mg Asacol (Four 400mg tablets, three times a day)
 
 
 

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