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How much and how long do you suffer before electing surgery???

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Posted 8/2/2008 10:49 PM (GMT -7)
Hello I am new to this website but certainly not the suffering, I too can tell you where all the bathrooms are in every store I go to and I can at any time gauge w/ acurate percision which is closest before I head for my sprint!

For 5 yrs. I've been told that I had Crohn's, I switched GI's for a second opinion before I would talk about operating. My second GI swears it's Ulcerative Colitis. I asked both GI's to consult and see why the difference in opinion, not sure yet but the both recommend surgery. My first GI told me food didn't play a role in my disease so I ate pretty much as I pleased and paid the price. Finally I put myself on a restricted diet and felt much better, was able to get off the steroids. I'm somewhat back to where I was but blame myself cause my diet is SOOOOOO limited and I get so hungry I just eat (nothing bad really, a piece of bread and if I'm feeling really bold I'll have cookie).

I could probably continue the fight, maybe, and it wouldn't be so bad however 50% of the colon is inflammed probably most of the time. Oh and did I mention my dad's side has a history of colon cancer? My uncle, aunt, and cousin (in her 40's died of colon cancer) As always I'm worried about colon cancer and now on 40 mgs of prednisone I'm really worried about it (steroids makes me somewhat paranoid).

Has anyone been in this position or is it something like they say, when the time is right, you'll know it?????? I'm still waiting to know! 

Posted 8/3/2008 12:07 AM (GMT -7)
Recently I have been thinking about it alot...during my hospitalization,  my GI mentioned it to me for the first time,  but he wasn't recommending anything,  he just threw it out there as an option...he said some thing like "Some people wish they had done it sooner, and some people wish they held onto there colon longer".   Basically saying its all a matter of personal decision....My recent flare caused me to think about it alot...Then someone made a good point in a forum...(wish I remember who it was,  so I could give credit)...but said something like "why are we taking all these horrible meds that potentially give us all the side effects, and potential damage to our bodies,  just to hold onto an already diseased Colon?!?"  wow...good point!!    That phrase has really been haunting me alot lately....But,  anyways,  it seems the idea of surgery is purely personal...unless things progress to absolutely medically Requiring it...like bowel perforation,  or cancer or something.... Good luck on your journey to the decision.     

                                          ~Christie
41 yo RN, happily married, with 2 beautiful daughters, Tianna(14 yo) and Alyssa(10 yo).   Diagnosed L sided Ulcerative Colitis in Jan '04 and Diabetes type 2 in June '05. (Complete remission from Nov. 07 to July 08 d/t Remicade) hoping for remission again after this current flare.
                                         Medications
Remicade infusions ~ 11/6/07, 12/6/07, 12/20/07, 2/14/08, 4/10/08, 6/08, 6-MP 100mg daily, Pentasa 500mg twice a day, Lantus insulin 15 units daily, Amaryl 2mg daily, multi-vitamin daily, Calcium daily, B complex vit daily,  and pro-biotics daily.

Posted 8/3/2008 3:08 AM (GMT -7)

hello Tammyuc

i was reading one of my GI reports from over 10 years ago and he said that i would probably need surgery, and now i have finally made the decision to have it. i have just finished 6 months on the abadacept trial for no benefit and it feels like another 6 months i have put off the surgery decision. 10 years ago i was very reluctant to have surgery but now it seems like my resolve has been worn away. I feel relieved to have made the decision and I am looking forward to resuming a normal life. I can't really say what the turning point was, but it might have been the almost constant pain i was under from cramps (painkillers helped) or constantly feeling tired due to aenemia or the need for toilet spotting.

i still have to find a surgeon and will probably end up going to Sydney. So surgery might still be 3-4 months away. 

i think it is important that you are happy with your decision but for me it took a long time to get there.

good luck with your quest.

Peter

49yo single dad 

dx 1985

mesalazine 1.5g, prednisolone 15mg, abadacept 3+3

tried infliximab (remicade), humira, salofalk (5-asa enema), entocort, Azathioprine, steroid emenas

Posted 8/3/2008 4:21 AM (GMT -7)
I have had Uc for 16 years and I have never really had it under control. I am tired of being sick and tired as well as my food, drink and drug limitations. I am going to try and have the surgery next year. I have yet to approach my GI about it but I see him in a month and I plan on bringing it up to him then. So for me, yes I just knew it was time when I got to the point in which I felt that I just CAN'T fight anymore. I gave it good go and for me that makes my decision much more acceptable. I think for some they just get tired of dealing with it all and others have no choice. But if you decide to have surgery, go in with eyes wide open. Do your research.

Oh and btw, welcome to Healingwell :)

 @--->--SHERRY--<---@

Moderator for Allergies/Asthma and Co-moderator for UC

~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),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 & C6/C7~2nd epidural injection 8/14, Neurontin and Skelaxin

To help Healingwell - click here: DONATE

Posted 8/3/2008 6:53 AM (GMT -7)

If you feel your quality of life is compromised due to UC, then it's time for surgery.  I made that decision after realizing at 2 years in a flare I was never going to get better.

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

Posted 8/3/2008 9:49 AM (GMT -7)
What other meds are you on, Tammyuc? Do you think you'll be reaching remission soon? If I were you, I would definitely consider the option of surgery since colon cancer runs in your family.

Surgery is a personal decision and people do it at different times. Some people wait until there are no meds availabe that work, others decide to not use the "big gun" drugs and go straight for surgery, some use big gun drugs to become healthy before surgery, and others unfortunately end up in emergency surgery. (I don't know of actual statistics).

As for me, if the Remicade holds out full 6-8 weeks, then I may put off surgery until the end of the semester or even school year b/c I'm not comforatable with being on Remi for the rest of my life. However, one of the GIs at the Cleveland Clinic told me that there have been some patients who have only used Remi for a year and were able to maintain remission w/ just 5ASA's. I might see if that works, and if not, then have surgery. If Remi doesn't hold out until my next infusion, then I'll probably have surgery as soon as I can get an appointment.
Female, Age 19, Dx w/ UC August 2007

9 Asacol, Rowasa, 1000 mg Canasa, Proctofoam, Rifaximin 2/day

Digestive Advantage (Crohn's & Colitis), 1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (3rd infusion 07/08), 2.4 g Lialda, 1 Forvia, 6 Colazal/day

*exploring the option of surgery

Posted 8/3/2008 2:24 PM (GMT -7)
for me, when I have exhaused all other options. I had a horrible flare for a month and I do not know how ppl can do that for years.........we are all different, I guess.
Beth, 32 ~ hoping to taper pred successfully, wish me luck!

Major Flare Sept/Oct 07

UC dx'd 03/00 (Proctosigmoiditis); Pancolitis since 09/07

Azathioprine 200mg 1xday nightly; Calcium and Vit D 500mg 3xday, Multi Vit, Folic Acid 400mg 2xday, Prilosec, Probiotics.

Minimal Change Disease (Kidney Disorder) dx'd 09/07 - partial remission since 03/08

Prednisone 20mg 1xday, Simvastatin 20mg 1xday, Diovan 160mg 2xday. Tekturna 300mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!

 

Posted 8/3/2008 7:18 PM (GMT -7)
i wasted 8 long years of my life holding onto a colon that didnt' want me, lol. I don't know why, honestly that i did not have that awful thing out right away! i didnt' try all the meds, in fact i didnt' try many at all, i didnt' want to keep trying diff things, and then if something worked, i always wondered how long would it work?
What finally made me decide was when i was pregnant i was in complete remission and i rememberd what it was like to NOT be sick, and then after my son was born, i got bad again, and i was missing out on my son's life. I spent the whole first two years of his life dragging that poor baby into the bathroom every few minutes unable to take him places, unable to do things with him that i shoudl have been able to do.
For me surgery was a way to get freedom! and i have to tell you it's great.
But if you dont' think you are ready, don't do it.
Good luck with whatever you decide
Posted 8/4/2008 6:25 PM (GMT -7)
Thanks for all the good advice, I appreciate it. I'm leaning more towards doing the surgery but for some reason still holding out.

I have a dumb question that I'm still tring to figure out... what is remission? I don't know that I've ever achieved it?? If your in remission does it mean you tolerate more foods??? When I did the remicade, I didn't notice any difference in the way I felt nor did I notice any less trips to the bathroom, however my GI did a colonoscopy and said that there was improvement in the bowels. I'm thinking maybe if I would of stayed away from certain foods at that time it would of gotten better? Also when I did the methotrexate I was still on steroids and when I did like my 12th injection I tried stopping the steroids but the next day I broke out in a fever (which happens when my bowel are really bad)

Is anyone on any type of steroids for maintenance? Both of my GI'S said it is not a long term solution however one of them was willing to keep me on it at 5 mg plus the mesalamine and it seemed to work for a while. The other says to many side effects from the steroids.

I meet with the surgeon on Thursday, My GI said he will not do the surgery just because he recommends it so I'm interested to see what his thoughts are.

Is there any subject here where we can grade our doctors? I'm doing my research and checking out my docs however it would be nice to hear others' experiences with theirs.

Tammy

2001 diagnosed

medication history:

pentasa, other forms of mesalamine, remicade, methotrexate, imuran (side effect pancreatitis) currently using Lialda and nicotine patch (patch works better than Lialda) and the wonderful cure all for me prednisone.

Posted 8/4/2008 6:37 PM (GMT -7)

Your doctor is correct, prednisone should not be used as a maintenance medication for UC.  The long term side effects are too devastating and you often don't realize you have them until you are weaned completely off the drug. 

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

Posted 8/4/2008 6:42 PM (GMT -7)

Sue, what does the j-puch mean for you? I've been told that I will still have 5-8 trips to the bathroom in 24 hours but do you still have the sense of urgency? Have you had any problems with it? How was the surgery for  you and the recovery time?

Tammy

2001 diagnosed

medication history:

pentasa, other forms of mesalamine, remicade, methotrexate, imuran (side effect pancreatitis) currently using Lialda and nicotine patch (patch works better than Lialda) and the wonderful cure all for me prednisone.

Posted 8/4/2008 7:01 PM (GMT -7)
pred is some evil stuff, lol. It is not good for a maintenance drug, and if a dr ever tries to put someone on pred for maintance, they should get a new dr, lol.
Remission means diff things for diff people. To me, i dont' think i ever achieved it, except when i was pregnant. I guess for me remission would have been no blood and going to the bathroom like a normal person. I was only like that for a few weeks during remicade.
Posted 8/4/2008 7:38 PM (GMT -7)
Remission for me is having no more than 4 BM's per day and having no blood. Remicade is able to heal your bowels. But if it's not getting rid of the symptoms, then Remicade is not fully working. Looks like a spoke too soon in my earlier post--as of last night, Remicade is not working and I've already scheduled surgery.

I'm not sure if diet is your issue. For some, certain foods can aggravate symtoms; and for others, like me, food/diet is not a factor.

Steriods are bad! They're only for short-term use.

There are websites that rate doctors, but you usually have to pay a fee to access it. If I recall correctly, on the Ostomies board, you said you were going to the Cleveland Clinic. Cleveland Clinic has a pretty good reputation for digestive diseases and colorectal surgery, so you should be in good hands.

jpouch.org is a good site to get information. However, you might read some not-so-great stories, but the thing to remember is a minority of people face problems w/ their jpouches (3-7%) and they're the ones who need to post on a support site. Recently, there's been a good thread called something like "Calling all Good Stories" on the General Discussion forum, so you might want to check that out. Also, Sue answered some questions here on a thread called "jpouch recovery time." You may also want to see ucstory.wordpress.com, in which Mark documents his surgery.

Let us know how your consult goes on Thursday.
Female, Age 19, Dx w/ UC August 2007

9 Asacol, Rowasa, 1000 mg Canasa, Proctofoam, Rifaximin 2/day

Digestive Advantage (Crohn's & Colitis), 1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (3rd infusion 07/08), 2.4 g Lialda, 1 Forvia, 6 Colazal/day

*surgery tentatively scheduled for September

Posted 8/4/2008 7:58 PM (GMT -7)

A jpouch to me means that I have control of my life again.  No, there is no urgency with a jpouch; I can hold it for 1-2 hours if I need to.  Frequency is higher but to empty a pouch is as quick, or quicker, then urinating.  I have been very pleased with the jpouch.  When the idea of surgery was proposed to me I really thought I would rather die than have surgery but I have come away with a completely different experience.  Surgery is not easy and adaption can take up to a year.  But I would still take the surgery and a year's recovery over living with UC.  I have never regretted my decision and have never felt the need to mourn the loss of my colon.

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

Posted 8/4/2008 8:01 PM (GMT -7)
For me,  remission meant feeling and eliminating like a "non-UC" person.  I was in what I considered total remission after starting remicade in Nov,  until I began a flare in July.    I felt GREAT,  had normal BMs with no blood,  no mucous,  no diarrhea,  and no urgency or pain.   The only issues I had were right at my monthly menstrual period,  but so do alot of  non UC people.   I hope to be feeling that way again soon!   I'm nearly there now,  just tapering off the EVIL drug pred. 

                                          ~Christie
41 yo RN, happily married, with 2 beautiful daughters, Tianna(14 yo) and Alyssa(10 yo).   Diagnosed L sided Ulcerative Colitis in Jan '04 and Diabetes type 2 in June '05. (Complete remission from Nov. 07 to July 08 d/t Remicade) hoping for remission again after this current flare.
                                         Medications
Remicade infusions ~ 11/6/07, 12/6/07, 12/20/07, 2/14/08, 4/10/08, 6/08, 6-MP 100mg daily, Pentasa 500mg twice a day, Lantus insulin 15 units daily, Amaryl 2mg daily, multi-vitamin daily, Calcium daily, B complex vit daily,  and pro-biotics daily.

Posted 8/4/2008 8:43 PM (GMT -7)

suebear said...

A jpouch to me means that I have control of my life again.  No, there is no urgency with a jpouch; I can hold it for 1-2 hours if I need to.  Frequency is higher but to empty a pouch is as quick, or quicker, then urinating.  I have been very pleased with the jpouch.  When the idea of surgery was proposed to me I really thought I would rather die than have surgery but I have come away with a completely different experience.  Surgery is not easy and adaption can take up to a year.  But I would still take the surgery and a year's recovery over living with UC.  I have never regretted my decision and have never felt the need to mourn the loss of my colon.

Sue

How long before you went back into work/daily public after the first surgery?

Thanks

Posted 8/4/2008 8:56 PM (GMT -7)
there was a thing on the internet a while back about the top rated hosptials for diff things, and cleveland clinic was rated number 2 for GI stuff. I can't remember who was number 1. They way they did it was rate the hospitals by things. Like one was top five for heart surgery, one was top five for childrens stuff etc...
Posted 8/5/2008 3:25 AM (GMT -7)
Whats it like being able to hold it in for 1-2 hours? I recently heard back from a colorectal surgeon that pouch operations were relatively uncommon (in Australia) because of the medications now available! Have i missed one? Anyone know what sort of questions i should be asking surgeons and anything else I should be looking out for? Thanks Peter 49yo single dad  dx 1985 mesalazine 1.5g, prednisolone 15mg, abadacept 3+3 tried infliximab (remicade), humira, salofalk (5-asa enema), entocort, Azathioprine, steroid emenas
Posted 8/5/2008 7:17 AM (GMT -7)
Gastro rankings: http://www.usnews.com/directories/hospitals/index_html/specialty+IHQGAST/

Y2K Bug, It seemes like you've tried at least most of the drugs--Humira and Abadacept are still in trials in the US. I think the most important question to ask is how many jpouch surgeries has the surgeon done---is s/he experienced? You should also ask if they perform surgery laparascopically or traditionally, and how many steps your surgery will be.

Female, Age 19, Dx w/ UC August 2007

9 Asacol, Rowasa, 1000 mg Canasa, Proctofoam, Rifaximin 2/day

Digestive Advantage (Crohn's & Colitis), 1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (3rd infusion 07/08), 2.4 g Lialda, 1 Forvia, 6 Colazal/day

*surgery tentatively scheduled for September

Posted 8/5/2008 7:32 AM (GMT -7)
I had a 2-step surgery and went back to work 3 weeks post the first surgery and then 3 weeks after the second surgery. I have a desk job so it was fairly easy to get back to work. Most people are out 6 weeks after the first surgery so I am atypical. The day after surgery I immediately got back to regular walking. My surgeon does not discharge his patients until they can walk a mile which is charted in the hospital. I kept that up once I got home and within a couple of weeks I was back to hiking. Not great distances but I worked hard at regaining all I lost when I was sick for those 2 years.

It's great to be able to hold it!! And what's even better is the freedom of not having to know where all the bathrooms are if I am out in public. I never knew how liberating that could be!

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

Posted 8/5/2008 12:32 PM (GMT -7)
Ok, one BIG question. My son doesn't have health insurance and no will even consider him because he has colitis. I'm sure that surgery is extremely expensive. He has his own little business with just himself and would have to pay for it. I know it would be well over $150,000 for the whole surgery, and he couldn't even begin to pay for that. What could he do?
Posted 8/5/2008 3:38 PM (GMT -7)
not sure where ya'll are, i am in NC, and my entire bill for surgery was about 40k. I dont' know how old he is, sometimes hosptials and drs will work with teens and children. How is he getting his meds and stuff?
Posted 8/5/2008 4:33 PM (GMT -7)

summerstorm, was that 40k after insurance or just in total (if you don't mind me asking)??

I started thinking about that the other day when my endoscopy/colonoscopy cost me $500 (wth?!) and the thought popped in my head of "Oh yeah, insurance certainly isn't going to cover everything, how will I afford this surgery anyway? Will I be stuck in debt forever just because I want to get rid of my UC?"

Sad we have to worry about things like that when it comes to our health.

Posted 8/5/2008 6:45 PM (GMT -7)

Does anyone's health insurance co. give them a hard time with having a chronic illness? With the non-stop visits, hospital stays, expensive meds, surgery, impending surgery we're always worried about them dropping us because we are self-employeed and have a small group policy. 

However, from what I understand is if we are a "group" policy they cannot drop us, but can raise our rates. (at least in Ohio).

CRA43, if your son is self-employed w/ 1 employee he may have a hard time finding insurance. You could check w/ ins. agents in your area and see if some accept 2+ people as a group, if so it would be easier to get group coverage rather than an individual policy.

 Good luck.

Tammy

2001 diagnosed

medication history:

pentasa, other forms of mesalamine, remicade, methotrexate, imuran (side effect pancreatitis) currently using Lialda and nicotine patch (patch works better than Lialda) and the wonderful cure all for me prednisone.

Posted 8/5/2008 6:54 PM (GMT -7)

ComedyDork,

Wow how fast that happened, sorry to hear. Have you already met w/ your surgeon?  Yes, I too will be going to the Cleveland Clinic. I'm anticipating the surgeon I meet w/ on Thurs. will do his evaluation and whatever he does and I wouldn't probably be able to have it done for a couple of months. I will let you know how I make out. Let me know how things go for you.

Good luck.

Tammy

2001 diagnosed

medication history:

pentasa, other forms of mesalamine, remicade, methotrexate, imuran (side effect pancreatitis) currently using Lialda and nicotine patch (patch works better than Lialda) and the wonderful cure all for me prednisone.

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