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

seconder
Veteran Member


Date Joined Jun 2008
Total Posts : 610
   Posted 6/5/2008 8:14 AM (GMT -6)   
Hi Everyone,
 
Long-time listener, first-time caller.
 
I've been reading about the benefits of surgery and lately I've been thinking about it myself.  At my last doctor's appointment, he briefly mentioned colectomy, and I have another follow-up visit next week.  I think I'd like to discuss it with him some more.  I have some questions, though.
 
I've had UC for about six years and it was always kept in check by smoking.  I had periodic flares when I took antibiotics.  Worst case scenario, bleeding for about two months.  I quit smoking last January and last April took antibiotics, entered a flare, and here I am more than a year later still bleeding.  Colonsocopy last May showed chronic ulcerative colitis across the colon.  I have about 4-5 bowel movements a day, mostly formed.  Having to go to the bathroom is not a big deal to me. 
 
The big deal is that I'm totally exhausted.  I've gone from being a high-functioning person to feeling like an invalid.  The joint pain and muscle soreness and all the other symptoms just keep getting worse, too.
 
I'm taking Asacol (2x3/day) and I won't take steroids or other drugs.  I have a hard time complying with rectal meds.  The Asacol doesn't seem to be working that well.
 
As I contemplate surgery my major goal is to eliminate the fatigue and other extra-intestinal symptoms.  (Not bleeding would be nice too.)  I'm not particularly concerned about extra trips to the bathroom. 
 
I'm trying to balance the idea of surgery with 40-50 more years of ulcerative colitis.  For those of you who have had surgery:  Does the fatigue go away?  Am I nuts to contemplate major surgery for these reasons?  Is it reasonable to think that I could make it through the two-step process in three months?
 
Any advice or suggestions appreciated!  Thanks.

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 6/5/2008 8:28 AM (GMT -6)   
For me both the fatigue and the muscle pain went away about a year following surgery. I never had joint pain. I believe, in my case, the fatigue was caused by chronic illness and my body just needed a good rest, and that the muscle pain was caused by long term (2+years) of prednisone use. However, that first year post surgery was not spent lounging, I did hike, travel abroad, work, and participated fully in life. The only difference was that I took a nap every day.

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


slim18996
Regular Member


Date Joined Apr 2008
Total Posts : 99
   Posted 6/5/2008 9:10 AM (GMT -6)   

Welcome Seconder,

First off, I don't think you are nuts for wanting a permanent fix to this problem.  I am not sure what the statistics are but i do know that more then half of the surgeries done for UC are for "quality of life" issues not because of a lack of treatment options.  That doesn't mean that we don't have "real" health issues it is just that we were able to do it on our schedule not on the schedule of an emergency.  Each person has their own fix for this crappy disease so what may seem drastic to one person is well within the limits of normal for the next person.

With the energy coming back, I have seemed to notice an increase but I am only one week post op for the ileostomy.  Mine will be a three step if I elect to do the j-pouch since I was on pred so long.  My surgeon wanted my tissues to gain back their strength when we get off of the pred before making the pouch.  The energy may just be my excitement of a new life after UC but I can say I did have a feeling of being "healthier" or "cleaner" right after surgery.  Like the internal argument in my gut was finally done.

From the research I have done if you are able to do the two step it should be able to be done in three months.  As long as you haven't been on prednisone for a long period of time and your other organs and tissues are in good shape they should be abe to build the pouch on the first surgery then between two and three months later do the reconnect surgery.  I am sure that the time frame varies with each surgeon but that is the average time frame I have found in my research.

I would definitely talk to your doctor about it and get his take on it with your reasoning.  He will be able to set you up with a surgeon if he is unable to answer your questions.  I can completely understand with the taking meds for the next 40 plus years.  My GI was the one who pointed out that surgery would be the fix for that.

John

Total Colectomy with End Ileostomy May 27th, 2008


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 6/5/2008 9:33 AM (GMT -6)   
Hi Seconder,

I am considering surgery myself as I don't know if I am buying or wasting time w/these meds. I may end up not having an option. Though for a me, I guess I want to know I have tried everything available. That is just my own personal feeling, I see where you are coming from too, these meds are no picnic.

Wish you all the best!
Beth, 32 ~ small flare - hoping caused by aspirin - hydrocortisone e's
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 5mg 1xday (tapered from 60 = ), Simvastatin 20mg 1xday, Diovan 160mg 2xday. Enalapril 20mg 1xday, Fosomax 70mg 1xweek. MCD may be from hypersensitivty to 5ASA drugs.  Do you have edema? If so, check your blood protien level!
 


seconder
Veteran Member


Date Joined Jun 2008
Total Posts : 610
   Posted 6/5/2008 10:44 AM (GMT -6)   
Thanks for the advice.
 
To hear that the fatigue goes away is reassuring.  To hear that one is able to go out and do things while recuperating is even better.  I've had to cancel my longstanding racquetball game the last two weeks, I've cut back on running, and I just cancelled a weekend trip because I can't muster the energy.  I feel like a zombie at work and it's a demanding one.  I'm taking two short naps now to make it to 8-9 pm to go to bed. 
 
I was reluctant to think about surgery until my neighbor had to have an emergency resection.  I thought he'd be laid up for months.  He was back to work three or four days later and feeling great a month afterward.  I understand there's a big difference between the two surgeries, but that was also reassuring.
 
My biggest desire -- as slim points out -- is to do this on my schedule.  If I can't do it all in three months, then I have to wait a year, which isn't a big deal to me as long as it can be done in that timeframe.
 
Thanks again.
 
Can anyone else comment on the extra-intestinal effects going away after surgery?

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 6/5/2008 1:09 PM (GMT -6)   
I had no complications with surgery and was back to work 3 weeks after both my first and 2nd step. My surgeon does his sugeries in 6 week increments barring no complications. I was back to hiking at about week 5 after the first step but had done a lot of walking from the day after surgery and gradually increasingto week 5. My surgeon does not discharge his patients until they can walk one mile continuously and it's marked in the hospital hallway.
Every surgeon does things differently but I think the one thing they all agree on is that you have to get out of bed the day after surgery and walk and the more you walk the sooner you will be discharged.

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 6/5/2008 1:17 PM (GMT -6)   
Seconder, I agree with what everyone has said so far and I really hope you find the reassurance that you're looking for! I certainly understand the fatigue problem... I would love to get back to doing yoga, jogging, ANYthing, but I'm either too dizzy, weak, or just the movement gets my bowels hurting and I can't do it. And then I know not exercising makes me even worse. I'm planning on buying a bike soon, maybe even today if I have enough $$ left over after bills, I'm hoping since it doesn't involve much jostling around or stomach movement, I should be able to do that with no problem. It's really quite frustrating and annoying though.
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 6/5/2008 3:16 PM (GMT -6)   
for me, surgery cured the fatigue problem, well at least the fatigue that was coming from the UC (didnt' help the fatigue from the kid that still won't sleep, lol) but just a few months after surgery i was out working in the garden all day, and mowing and all that stuff. i only work whenever i want to, so that wasn't really a big deal, but when i do work i feel much better and can work longer. I am a year past surgery and i walk on the treadmill, 2 miles, i try to do it four times a week, i have been doing that for about three months, and before that was walking a path of 2 miles for about two months. I lift weights, like the nautilus machines, and stuff like that.
In general i just feel much better!

zast
New Member


Date Joined Apr 2008
Total Posts : 6
   Posted 6/5/2008 4:02 PM (GMT -6)   
Hello: a surgoen in my town does colon surgeries laparoscopicly. Either total removal of the colon or total removel of colon and rectum. The surgeon makes three small incisions around the navel for the insurments and one three inches long just above the pubic bone. The colon and rectum are removed through this opening, also through this opening he will connect the small intestine to the anus. the average surgery time is 163 minutes and the average hospital stay is 5 days. He has done over 50 of these procedures. His study was published in the Bridgewater NJ. BASED American journal of surgery in may. Good LUCK!

matt
New Member


Date Joined Jun 2008
Total Posts : 1
   Posted 6/6/2008 3:15 PM (GMT -6)   
I had an ileoanal anastomosis (j pouch) January 2006 and experienced no post-operative complications or infections. I was diagnosed with left-sided colitis in 2000 and the disease remained in a smoldering stae until I opted for surgery when all my medications failed in November 2005. I lost all control and was in terrible pain. Ultimately, there was no choice but to have the surgery. I was on prednisone and 6-MP for a very short time and did not have Chrones disease which made me a candidate for the j pouch procedure. In retrospect being left with no option but surgery was the best outcome. It cured me of the disease, my immune system is no longer taxed by chronic illness, I am med-free and unburdened of the anxiety of the disease itself. The post-recovery is hard as it takes time to gain your strength back. I went back to work about 6 weeks after coming home from the hospital and it took about 4 months until I started to feel myself. I have 4-6 BM's a day which poses no QOL issues compared to the disruptive nature of the disease.
 
48 yr old male

MarriedToUC
New Member


Date Joined Apr 2008
Total Posts : 3
   Posted 6/6/2008 4:08 PM (GMT -6)   
My husband has been considering surgery as well, and we've been doing some research. We found (thanks to this forum) a very informative photo diary kept by someone who went through the ileostomy and j-pouch surgery. For us, it was great to actually see what things might be like for him if he opted to have the surgery.

http://www.flickr.com/photos/markandmegan/sets/72157600800413847/

Best of luck in whatever you decide.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 6/6/2008 6:02 PM (GMT -6)   
those are pretty neat to see. i dont' really get to see my stoma, i didnt' know that was what it looked like.
There is a photobucket page, the username is crohnsdisease and the password is 6mp3asa that has pics of some of the people on here with ostomies, so you can see that you really can't see the diff. I even posted a kind of "test" where i put up two pics, one of me before the ileo and one after, and noone could figure out which one was which.

bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 6/6/2008 9:03 PM (GMT -6)   
For those of you who have already had surgery, was it done laproscopically or the "regular" way?
Female, Age 19, Dx w/ UC August 2007
Seasonal allergies
9 Asacol/day, 1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis) 3 pills/day, 1 Florastor/day
1 DanActive/day


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 6/6/2008 9:47 PM (GMT -6)   
mine was done the regular way, my surgeon didn't do them laproscopially, and he said there would be a diff in recovery time, but i knew that it would take forever to get an appt with another dr, and i looked and researched it and stuff, and the diff in time and stuff didnt' seem like enough to keep being as sick as i was.

seconder
Veteran Member


Date Joined Jun 2008
Total Posts : 610
   Posted 6/7/2008 9:02 AM (GMT -6)   
Thanks for the responses and info. everyone.  Definitely some things to talk about with the doctor next week.
 
It's the uncertainty of the disease that drives me nuts.  Yesterday, I had a great day.  Two bowel movements, little blood.  I felt energetic and made up for lost time and got a lot of work done.  I even painted a room that I'd been putting off.  I thought I was nuts for thinking about surgery.
 
I woke up with cramps in the middle of the night, spent all night tossing and turning, and have a lot of urgency and cramping today.  So much for that.  I feel like I'm always waiting for the other shoe to drop. 
 
So, although my symptoms seem minimal compared to other people, I do think it's time to seriously consider surgery.
 
(I also want blood work to see if that could be the cause of some of my problems.)
 
Thanks.
 
 

seconder
Veteran Member


Date Joined Jun 2008
Total Posts : 610
   Posted 6/10/2008 8:32 AM (GMT -6)   
Thanks again. 
 
Saw my doctor yesterday and we talked about surgery.  He thinks it's premature right now and suggests we wait until my next six-month visit to discuss it in earnest then if I still want to.  Aside from surgical complications, he worries that dehydration and malabsorbtion will be a long-term problem.  He thinks we can still get the inflammation under control, but he also understands that micromanaging one's body can be draining in the long run.
 
He changed my meds from Asacol to sulfasalazine to see if that will help with the joint pain.  He again pushed prednisone and I again refused.  He suggested Remicade, but I said no to that as well.  He then offered a five-day course of prednisone, but I'm not sure I want that, either.  (I plan to start a thread on that.)
 
He also ordered tons of blood tests for the fatigue, and he wants more in a couple of weeks after a fast.  X-rays of my pelvis, too.
 
I find this all annoying, but we'll see. . . .

Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 6/10/2008 8:37 AM (GMT -6)   

Seconder, you may have posted this somewhere, but why are you not going to try Remicade? Or prednisone? I guess I can understand why people avoid prednisone... but I also know that when I am really flaring badly I'll take anything the doctors throw my way- if they claim it will help, I'll try it!


diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Culturelle
 
 
 
 


seconder
Veteran Member


Date Joined Jun 2008
Total Posts : 610
   Posted 6/10/2008 8:54 AM (GMT -6)   

There are a whole host of reasons, all of them impolitic to voice, I'm sure.  On the one hand it's because I'm a stubborn control freak (Ha!) and on the other I'm just not interested in dealing with the side effects of either of those drugs.  (Maybe that's the same reason. . . .)

As far as the symptoms of uc go, it's the devil I know.  I'd rather consider surgery than steroids or biologics.


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 6/10/2008 8:56 AM (GMT -6)   
I am curious why your doctor would think you would have problems with malabsorption or dehydration with surgery? Is there something unique and different about your physiology? Very few people end up with either of those problems so I don't think that is reason enough to discount surgery if you ever have to make that decision. I agree with you on staying away from prednisone!

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


seconder
Veteran Member


Date Joined Jun 2008
Total Posts : 610
   Posted 6/10/2008 9:06 AM (GMT -6)   

As far as I know, I'm built like everyone else, Suebear.

I don't know why he thought dehydration and malabsorbtion would be a problem.  I think he may have been trying to emphasize the idea that once my colon was gone, there was nothing I could do if malabsorbtion became a problem.  I think.  I don't know.  

I didn't question him at the time.  He seemed reluctant about surgery which is odd since he brought it up last time.  (Maybe he was trying to scare me into steroids then?) 


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 6/10/2008 9:15 AM (GMT -6)   
Okay, you can let him know that most people GAIN weight after surgery because they are finally healthy. Those that have malabsorption problems tend to have had their ileum removed which is NOT a part of the jpouch, k-pouch, or ileostomy surgery. Some ostomates do struggle with hydration, especially shortly after surgery but it often resoloves itself after a period of recovery. My hydration is fine most of the time but I do pay close attention to it during extreme physical activity both in and outdoors. I think these are great points to keep in mind and it's good that your doctor point these things out.

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


seconder
Veteran Member


Date Joined Jun 2008
Total Posts : 610
   Posted 6/10/2008 9:35 AM (GMT -6)   
Thanks for the info. and I'll bring it up with the doctor.
 
As a runner, I'm fairly alert to hydration issues, and I'm pretty good and consistent about it.
 
I haven't lost much weight but I'm having trouble keeping the pudge off and the muscle on.  My body shape has definitely changed in the past year and a half or so.  My doctor chalks this up to malabsorbtion and, when I've lost my appetite, a taste for easy-to-digest carbs.  That may play a role in his thinking.
 
I initially picked him because he's really nice and not much older than me and a runner, and those things were important to me.  But I'm beginning to think he may be a little on the green side when it comes to uc.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 6/10/2008 9:43 AM (GMT -6)   
you should probably get a second opinion if you aren't sure of what your dr is telling you.
I think that, rarely, people have problems with dehydration, its' just because their bodies are processing their food very very quickly, but usually with a change in diet and adding some immodium to give you some extra time to adjust it clears up. I watch my liquid intake very very closely, and you can tell when you are startign to get dehydrated, and then you just drink, drink, drink, lol.
I def agree with suebear about the weight gaining thing, lol. That's all i have done. Since i can finally eat, i am makign up for eight years of not eating. I love to eat nachos, and my sis was laughing at me the first time i had some, cause i was just eating them like they werent' gonna ever be another tray of nachos ever, and i said, hey i got eight years of nacho eating to make up for!
there are a few nutrients that absorb mainly through the large intestine, so you can either take them as the pill that dissolves under your tounge, or if the pill is crushable, you can just do that.

bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 6/10/2008 2:57 PM (GMT -6)   
Just out of curiousity Seconder, what are you planning to do to make your flare better if you aren't going to use stronger meds? Have you talked to your GI about 6MP? I refused to take prednisone as well, so they put me on 6MP. But my GI said that it could take 4-8 weeks before I notice reduction in symptoms and 3-6 months before I go into remission (if it works for me). He did say that there have been a few cases of lymphoma and that Remicade will be next if 6MP fails. I can't help but to think of surgery as a better option...
Female, Age 19, Dx w/ UC August 2007
Seasonal allergies
9 Asacol, 1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis), 2 Florastor, 50 mg 6MP


seconder
Veteran Member


Date Joined Jun 2008
Total Posts : 610
   Posted 6/11/2008 6:02 AM (GMT -6)   

I don't really have a plan, comedydork.  Keep on truckin'?

I'm around hundreds of people every day, and someone is sick all the time, so my doctor and I are both reluctant to start tinkering with my immune system.  At certain times of the year, I have no choice but to be at work, so I don't get sick days when I want them.  That's a big consideration.  There are long stretches when nothing short of death can keep me from work.

I also hate going to the doctor, so I see any surveillance as a huge imposition.

I'm leaning toward surgery.  As it happens my mother called yesterday to see how things went with my appointment.  She had read the uc column in the nytimes over the weekend, and out of the blue she suggested I get surgery before I start messing around with the heavy-duty drugs.  That's a change in her opinion.

New Topic Post Reply Printable Version
26 posts in this thread.
Viewing Page :
 1  2 
Forum Information
Currently it is Monday, April 23, 2018 11:12 PM (GMT -6)
There are a total of 2,954,897 posts in 324,162 threads.
View Active Threads


Who's Online
This forum has 162193 registered members. Please welcome our newest member, Richard_NZ.
239 Guest(s), 4 Registered Member(s) are currently online.  Details
Tim G, Stray, Girlie, kit49