Searching for the Right Doctor....

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UC spouse
Regular Member


Date Joined Feb 2008
Total Posts : 70
   Posted 4/17/2008 8:28 AM (GMT -6)   
My husband is searching for his fourth doctor. We want to get it right this time. I was wondering, does anybody know a good IBD specialist in Houston, Tx.?
 
Thanks in advance!

UC spouse
Regular Member


Date Joined Feb 2008
Total Posts : 70
   Posted 4/18/2008 2:54 AM (GMT -6)   
Sorry, but I need to ask another question...and maybe I should have asked this first....

When does one realize that they need to change doctors? My husband(diagnosed as having pancolitis for almost a year now) has been with his current doctor for about 8-9 months and there have been no results. His doctor seems conservative with treatments(which might be a good thing)and doesn't really seem proactive. But, at the same time, he takes the time to listen. How do we find out if his doc. is out of resources for my husband? Or is all this questioning just a matter of us being impatient?

Also, currently my husband has been on Humira for two months, but I have noticed that most people on Humira are also on predisone. Is this the usual protocal? Should we ask his doctor about this? Then again, there are so many horrible side effects with predisone and every time my husband was weaned off of it, the symptoms returned. So, should he even be wanting to get on this drug again?

Thanks for your input...Ooops! I know I said one more question...sorry for going over my limit. :)

jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 4/18/2008 7:34 AM (GMT -6)   
If your husband is on Humira, I assume you've already been through all the 5-ASA's, immunosuppressants, and other drugs that are generally used before going to Humira. If that's the case, I'm not sure what a new GI could do that this one isn't. But do sit down with the current doctor and ask what his plan is if the Humira isn't working. Beyond Humira, as far as I know, the medical treatment choices are investigational drugs or surgery. Seeing a different doctor won't create new treatments, and staying on Prednisone long-term is really a bad option. I have scars all over one leg and one shoulder to prove that.

Sorry I don't have more positive suggestions, UC spouse. Perhaps someone else will know of other alternatives.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
The information I share on this forum is based only on my own experience and study. It is important to consult your health care provider when making health-related decisions.


$360
Regular Member


Date Joined Dec 2007
Total Posts : 34
   Posted 4/18/2008 8:23 AM (GMT -6)   
It sounds like this doctor is actually pretty good. He's not quick to assign aggressive drugs and he takes time to listen. Thats more than I can say for the good majority of the doctors I've come across is the past 5 years. Has the doc worked on a helpful diet in addition to medications? And has you husband tried supplementing the Meds with Herbal treatment or acupuncture?
EGDOL KCALB EHT NI MI


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 4/18/2008 8:29 AM (GMT -6)   
Am I to understand your husband has cycled through 4 GIs? Is it because he feels that they aren't proactively managing his disease? That's a lot of doctors to go through but I am sure he must have his reasons. I agree with Judilyn, though, if he has gone through the usual meds, rectal enemas, 5ASAs, immunosuppressants, prednisone, and now Humira he's pretty much at the limit of what's out there to control his disease. Some of us just don't respond to medical treatment. Since he's not happy with doctor #4 it is probably best to move on to #5. But I would recommend he go in there with a list of questions about his current condition and have the doctor provide a plan for getting him off prednisone. The long term side effects of pred should be high on your husband's list of immediate concerns. Pred is not designed for managing UC long term. Long term meaning more than 4 months.

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


UC spouse
Regular Member


Date Joined Feb 2008
Total Posts : 70
   Posted 4/18/2008 10:14 AM (GMT -6)   

My husband has gone through 3 GI's, thinking of looking for the fourth.

1st-was a general GI and didn't have much experience with UC, so referred my husband to a second GI.

2nd-He was waaay too busy. My husband had to repeat his case to him each time he saw him. He had no time to even listen to my husband and wanted to start him on Remicade right away. That doc. was into research too...so he had other agendas.

3rd(&current doc.)-He has tried putting my husband on xifaxan, increasing colazal (12 pills a day), and now Humira. Xifaxan seems to reduce the number of trips to the bathroom by a few (1-3)and only for a few days. Has anybody else taken Xifaxan?

It seems quite a few people on Humira are taking predisone simultaneously. My husband is only on Humira and colazal. We know predisone has bad long term affects. He has been on predisone previously for two months. Perhaps he needs a "double punch" as he recently said. Would being on predisone for two - three months with Humira be too risky? I know one said that four months is too long, so we'll make sure it's less than that. Predisone is a bad drug, but isn't losing weight (35lbs. so far) at a steady rate and missing out on valuable nutrients too?
 
Btw, this doc. believes diet has nothing to do with colitis. So, on our own we went to a nutritionist, but she was of no help. SHe just said he should have smaller and more frequent meals. He has been currently taking the probiotic ALign for 2 weeks, no results so far.
 
I was afraid we have reached the point where we are running out of options...perhaps that is why we were looking for a new doctor, for new hope/solution. Honestly, I feel there has to be something else out there that can help him before surgery can. This site has really opened up my eyes to the fact that there is hope. THank you all for that!
 

kb5
Veteran Member


Date Joined Jan 2007
Total Posts : 1015
   Posted 4/18/2008 10:29 AM (GMT -6)   
I know in a lot of cases people are put on humira, remicade, or imuran becuase pred no longer works for them or they are steroid dependent. It sounds like that is your husbands predicament. I would urge him not to go back on to pred if he has a hard time coming off of it. I am just now down to my last two weeks of pred after a year and a half of being on it. Every time I try i flare badly. That's why we have tried imuran and remicade to help me off of it.

Usually before humira one tries imuran or 6mp but then can take 3-6 months to see any results. Humira and remicade usually take less time and it seems docs are suggesting them earlier and earlier. But if your husband has not tried Imuran or 6mp that may be a road to look at or talk to his doc about. Before you opt to change docs again write up a list of questions you want answers to, try to gather as much info as you can. Give your GI a chance to answer your Q's. Ask about imuran, remicade,and why xixafan seemed to work and why he would stop it if it were working. What is his plan if humira doesn't work. How long should it take for humira to work? I hope this helps. Maybe others will have other questions you could pose. Good luck!
Kelly, 30

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, 5mg pred, 150mg Imuran
Prontonix once daily for acid reflux, zofran twice daily for nausea, darvocet for pain
Remicade started 3/1/08...just had 3rd infusion


Mamas Boys
Veteran Member


Date Joined Oct 2005
Total Posts : 1460
   Posted 4/18/2008 10:37 AM (GMT -6)   
If he hasn't already tried Rectal meds - I would add the rectals in addition to the HUmira and colazal.  When I first started Remicade I used Rowasa enemas until I was in a solid remission - then weaned off of them.  Never underestimate the power of the rectal meds!

KTM


#1Chloe
Regular Member


Date Joined Nov 2007
Total Posts : 20
   Posted 4/19/2008 7:10 AM (GMT -6)   
Dear UC Spouse: I forgot how old your husband is?
Mine is 63.
I have nothing to say re schedule of meds but it is so important to get a skilled doctor with interest in you isn't it?. Good luck on this front. What i am adding here is diet. In the beginning before we arrived at the University of Chicago Hospital IBD clinic, we were told that my husband could " eat normally, have wine, eat smaller meals , maybe more fish" - in short useless. The problem is there is little research in the role diet can or does play in IBD but we have now been advised to be on a "low residue diet' ( google it) and when hospitalized this is what is prescribed. This is more restrictive than low fiber. ( not easy for me to combine weight watchers for me though!)
All i can say that now it feels like we have has some guidelines as to helping the colon: I am not saying cure or anything like that but help. I only say all this because once we had something to follow it felt we were on a sensible path. Best luck in physician search... Cheers, Chloe
Imuran 200 mg each day
Vancomycin and Rifaximan for C-diff

Husband diagnosed Ulcerative Colitis Nov 2 07


GISGuy31
Regular Member


Date Joined Feb 2008
Total Posts : 79
   Posted 4/19/2008 3:36 PM (GMT -6)   
My UC was similar to your husband's - pancolitis and had a year of constant flare (no improvement) and felt myself slowly dying as time went on. My GI doctor was supposed to be the best in Akron, OH and went the "conservative" route as well...only prescribing Asacol and Prednisone. I don't think he thought 20 mg a day of prednisone over 6 months was bad. All he did was give me osteoporosis from the year of prednisone, and it was my family doctor who caught it. That's what did it for me and I scheduled an appointment --> surgery at the Cleveland Clinic. I refused to go the Imuran or Remicade route since these had more significant issues with the body/systems...and Asacol and Pred were supposed to be the "light" treatment drugs for UC.

I think it was the best choice for me since I'm only 31 and have several years left and didn't want to mess up the rest of my body with these drugs. 2 months after surgery, and I'm back to the state I was in before having UC. No pills, no pain, I can eat everything again, can travel, do the normal duties at work, etc.
Age 0 to 30 - 100% healthy, no meds, no doctor visits, no hospital stays
Oct. 2006 - Symptoms of UC began
3/5/2007 - Diagnosed with UC - Pancolitis (entire colon involved)
20mg-40mg/day Prednisone, 4.8 g/day Asacol - didn't work at all
10/12/2007 - Steroid Induced Osteoporosis from Prednisone and Anemic
add Actonel (75mgx2 pills/month) and daily Iron Pills
2/12/2008 - open Subtotal Colectomy with Temporary Ileostomy Surgery
Off all meds except Actonel and feel normal again
Aug. 2008 - J-Pouch Surgery and possible Ileo Reversal Surgery Scheduled
"When life gives you lemons...make lemonade"


UC spouse
Regular Member


Date Joined Feb 2008
Total Posts : 70
   Posted 4/20/2008 2:15 AM (GMT -6)   
#1Cloe-I agree following some kind of plan at least feels you are doing something proactive to combat this disease.Have you guys seen positive results with the low residue diet? My husband is 32.

kb5-does steroid dependent mean when you are weaned off of predisone, your symptoms come back?Thanks for the good questions. Do you think it would be insulting to ask the GI, what is his success rate with UC patients?

KTM-I know u suggested rectal meds. My husband did try mesalamine enemas, but it didn't seem to help. However, I thought we could ask his doc. about the foam rectal meds. Have you tried those? Also, we were once told that rectal meds. aren't good for pancolitis, b/c it doesn't reach the entire colon. Is this true?

GUISGuY31-Do you recommend getting the surgery when you are young? Sounds like you are pleased with the surgery. I have read even after the surgery one has to go 5-7 times in a day? If so, then what is the point of the surgery? Do you have to go that many times? Sorry, If I am getting too personal. When do you think one should say, it's time to get the surgery? Is it very painful?

Thank you all for your help and support!
Husband diagnosed with pancolitis in May 2007 at the age of 31

Predisone 40 mg for two months-every time weaned off, symptoms came back, Mesalamine(substitute for Rowesa)enema for 21 days-didn't see results in 14 days so stopped taking it, symptoms seemed to get slightly worse.
Xifaxan-on and off
Current meds. : Humira, Colazal 12/day, Probiotic-Align, Fish Oil
Has never gone into remission


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 4/20/2008 8:00 AM (GMT -6)   

UC Spouse,

Going 5-7 times per day is not anything remotely like going 5-7 times per day with a colon.  Emptying a jpouch is as quick, painless, and easy as urinating.  In fact most of the times I am headed to the bathroom to pee my pouch empties too.  I think this is one of the hardest concepts for prospective surgical patients to understand.  Surgery should be considered if the medical treatment is not working, if the patient has a low quality of life, or if the patient is steroid dependent.

As for looking for doctors who are successful at treating UC, it's not always the doctor who is to blame for a patient not reaching remission.  There are difficult cases (mine included) whereby no doctor could have improved my flare.

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


GISGuy31
Regular Member


Date Joined Feb 2008
Total Posts : 79
   Posted 4/20/2008 10:27 PM (GMT -6)   
UC Spouse,

Sorry for the long post, but it is typical for me.

Nothing is too personal at all to ask me...nothing bothers me. I just want to help other UC suffers learn more quickly about their disease than I had to. In fact, I was going 12+ times a day and at least 3 to 4 times a night, sometimes every hour on bad nights during my initial "flare" that never went away. I was in constant pain (3 on a scale of 1-10 with 10 being the worst) and suffered major sleep deprivation and lost all of my energy and nutrients due to constant diarrhea (over a year) --> became anemic. My blood work just got worse and worse as time went on...and the different meds/prescriptions just kept going up. On top of that, every BM got more and more painful...and always had the feeling of having to go and "random" urgency-->accidents...so that was the worst part of it for me. In fact, sitting on a riding mower to mow my lawn for 42 minutes would wipe me out. I felt like a 100 old person (at age 30!!!)..and I decided I couldn't continue living life that way. I was at a point where I was just existing on a couch watching TV and not living a "normal" life at all. After suffering a few "accidents" I stopped going places and began to close down to friends and family...and everything just got worse. At that point, everyone was now coming to my house to visit me. I felt being dead was better than living like that...and if surgery would help...I was all for it. Last year, I missed 2 weddings, 1 funeral, and a years worth of family gatherings around the holidays.

I would say my mental capabilities were only at 50 - 60% of normal and my energy levels were at 50% of normal during UC because it was so draining. I was not my normal self because of UC and because of the multiple drugs (negative side effects) I was taking too. That was hard to deal with also...knowing your taking these 20+ pills a day and they are killing you...and without any improvement.

In fact my GI in Akron said the same thing about the 5-7 BM/day when I mentioned I wanted surgery to him. He said "Surgery is not an improvement because you'll still have 5-7 BM a day!!!" I'm sure they would change their mind if they themselves suffered from the disease. My thinking was "Take these multiple pills a day for 40-50 years and see what happens to you...while feeling like crap...literally and figuratively!!!" Asacol only has an 8 week study and that is what it takes the FDA to say it is safe to take for the rest of your life....and there aren't any studies for taking other multiple drugs with it. What a joke. I was shocked at this is how the medical world operates. I'm an engineer and if we built buildings like that...nothing would match and I'm sure the buildings would fall apart in a short time, and we would just scab other pieces onto it to hold it up.

These GI "specialists" cannot pick up the "emotional/psychological" side of the disease by reading about UC in a medical book!!! Doctors feel great that they can give you multiple pills to prolong your life with UC but shudder to think that the drugs they are giving you may make you feel like crap and eventually kill you too...just more slowly. I think they need to put themselves in our shoes and live what they preach/prescribe.

Here's what the positives are about the surgery and why people and doctors who don't have the disease cannot understand what we go through.

1. I now can "control" when you need to go to the bathroom. No more urgency. These are the big ones!!! I currently have a temporary ileostomy so I can control when I need to empty the bag....about 5 times a day (usually when I need to pee anyway), not any times during the night...which is a million times better than no control and random 12+ BM times a day/night with UC and drugs!!! The temporary ileostomy is not a problem either, but it seems some people are freaked out about this part and refuse the surgery solely because of this. It really shouldn't be an issue at all. If this becomes permanent - if J-pouch fails (only 3-5% at the Cleveland Clinic) - I can easily live with the ileostomy. It took me a month to accept it and to find the right supplies and having a good system...never had a leak yet. I'm just glad to be rid of the defective colon, UC symptoms and drug side effects. With the J-pouch...you should be able to hold it for up to an hour before needing to go to the restroom.

2. I can sleep throughout the night without needing to wake up. No more sleep deprivation.

3. I can now travel without worrying about where the next bathroom is. I can travel 3 hours in a car easily now...I could barely make the 15 minute drive to work before...without fear/having an accident inside the car!!! I travel all the time due to work...and missed this all last year.

4. I don't think about UC anymore. It was on my mind 24/7 all of last year...it sucked.

5. The daily ritual of taking multiple pills throughout the day is now over. I only take Actonel for osteoporosis (2 pills once a month...on the 10th and 11th). This was my main reason for surgery. I hate taking drugs...I think they cause more issues and are worse than UC itself.

6. You can eat/drink everything again without worry of causing a flare. I love beer and fried things. I never deprived myself of bad/good foods while I had UC...since it all passed through me anyway. Plus, you cut out so much of the food pyramid, it might just look like a single brick out of that pyramid. Then, I'm sure the doctors would be happy to prescribe you some supplements to take to make up on the nutrient deficiencies.

7. Your immune system is no longer suppressed. I work in an office with 40 people in my section. Anyone who came in sick, I got it the next day...and I was very limited on what "cold medicines" I could take...so I just suffered through them, usually they lasted 3 days with the steroids I was on. So I'm now happy to have my immune system back and I take any cold medicines when needed...but now I don't get sick at the drop of a hat anymore.

8. I'm totally "cured" of UC. My colon is gone, so there is no chance of UC coming back. No yo-yo between flare and remission...even though I never experienced a remission. One thing UC websites will not tell you about UC but my GI doctor did. Even if you find the right "magical" food/drug/herbal combination to bring you into remission and you feel "normal," your colon cells on the cellular level are still inflamed...this is why your colon cancer risk goes up 32X a normal person 20 years after the initial UC diagnosis....whether you feel fine or not. So my thinking was...your never cured...just masking the symptoms with the drug route...so why take these drugs that ruin your otherwise healthy organs for a colon that will more than likely be removed 20 - 30 years down the road anyway. I wouldn't like these surgeries at age 50 or 60. I should do it now while I'm young and skip out on the years of drug use and preserve my other healthy organs. People have a hard time with this issue!!!

9. Colon cancer risk is eliminated. This was just a bonus in my mind and for the reason mentioned in #7.

10. I feel the same way as I did before getting UC...I cannot tell/feel that my colon is missing. The only thing that reminds me of it is the 10" scar on my belly and the bag when I lift up my shirt...otherwise I feel normal again. I just get thirsty more often. Sex life returned about a month after surgery...although still a little sore. People worry about this as well!!!

11. If my j-pouch fails or I get chronic pouchitis later on...I'll just go back to a permanent ileostomy. This would be the worst case scenario for the surgery route and my furthest from being normal. With the j-pouch I'm as close to normal as I'll ever be and I know I tried everything available to me. I have no regrets at all...and would still recommend it to anyone who was in a similar situation.

I remember reading about the surgery when I first got diagnosed and said...I hope I never have to do that. 3 months afterwards I was ready for it. That's how bad my UC was.

People must understand that once you have UC...your never going to be "normal" again...despite the warm fuzzy sounding websites you may have visited. You can only try to get as close to "normal" again. Living without a colon is not normal, but having to go to the bathroom 5-7 times a day (controlled) is wonderful compared to living with UC going 12+ times a day uncontrolled. Taking 20+ pills a day + their side effects, constantly worrying/watching what foods/drinks you can have is not "normal" either...especially if you have to take these drugs for the rest of your life 40+ years. Imuran and Remicade are terrible. My aunt is a pharmacist and said Remicade is classified as a chemotherapy drug...not for me. They give you Imuran if you have a kidney transplant so you don't reject it...not for me either...these were my next options with medicines. You'll just have to take drastic measures to restore your life to as close as normal as you can get.

For me, the benefits of surgery outweighed the risks of long term drug use!!!

I'm not going to lie, surgery did hurt. My 10" incision hurt for 2 weeks. The stuff they did on the inside hurt for 8-9 weeks. It was a much milder pain that only hurt when you touched the abdomen. But you know that the pain from UC is gone a week after surgery. I have a post of my surgery experience if you search for it on this website...or search my postings. It's very detailed and long...as often my posts are. I have surgery #2 scheduled in August to create the J-pouch and reverse the ileostomy. I was/will be off work for 8 weeks for both surgeries. I was in the hospital for 4 days. Surgery #1 cost $55,000, my insurance got it down to $18,000, and I only paid $630 out of pocket. Best money I ever spent.

Yes...being younger is in your husband's favor for the surgery. I was the perfect candidate and was negative for all tests for Crohn's (pill camera for upper GI and small intestine, colonoscopy with biopsy, blood tests). I was 31, no prior surgeries...the only negative was my year on prednisone 20-40 mg/day. Prednisone as with all steroids...same for asthma and allergy medicines will turn your internal organ walls into the consistency of butter during constant long term use---after 6 months. I wonder why this isn't listed on the drug fact sheet!!! They will not hold stitches or staples....this is why many people have 2 or 3 stage j-pouch surgery...and not necessarily due to the condition of their health...as they are often told. I had my colon removed during the first surgery and they stopped (they were going to do the j-pouch then but didn't). I stopped all meds that day...was tapered off prednisone a month later. Now my organs are healing and returning to normal so they can hold stitches and staples for my August surgery where the surgeon will make the j-pouch and may reverse the ileostomy.

Hope this helps. I'm open to all topics/issues and nothing bothers or upsets me and I don't hold anything back. I feel that I was lacking some key pieces to the puzzle when doing my surgery research as well as my research for UC in general. There's a lot of "watered down" sites/postings out there. I was on my computer day and night for a year religiously researching this stuff before surgery. Hopefully, I filled in a few missing pieces of the puzzle for you.
Age 0 to 30 - 100% healthy, no meds, no doctor visits, no hospital stays
Oct. 2006 - Symptoms of UC began
3/5/2007 - Diagnosed with UC - Pancolitis (entire colon involved)
20mg-40mg/day Prednisone, 4.8 g/day Asacol - didn't work at all
10/12/2007 - Steroid Induced Osteoporosis from Prednisone and Anemic
add Actonel (75mgx2 pills/month) and daily Iron Pills
2/12/2008 - open Subtotal Colectomy with Temporary Ileostomy Surgery
Off all meds except Actonel and feel normal again
Aug. 2008 - J-Pouch Surgery and possible Ileo Reversal Surgery Scheduled
"When life gives you lemons...make lemonade"


UC spouse
Regular Member


Date Joined Feb 2008
Total Posts : 70
   Posted 4/21/2008 2:40 AM (GMT -6)   
suebear-i didn't realize going to the bathroom after surgery was a whole diff. concept than pre-surgery. You are right, a doctor cannot be blamed if the meds. aren't working. It's not that we're blaming him, but I guess we are desperate and hoping for that magic doctor to make a change in my husband's life. We also wanted to just meet with a doc. who actually specializes in UC and not just a general GI. Thanks for the reality check though, that is why I posted here. I didn't know if looking for another doc. was just us being blinded by our quest for hope or if we really needed a fourth opinion. Looks like we were blinded;)

GISGuy31-Please don't apologize for your detailed mssg. I should be thanking you for taking the time to explain things. I have asked my husband if he was interested in getting the surgery. As of right now, he seems unsure. I think we need to research a lot more before we take the leap. We really don't have a clue how it works. I am so confused about the difference b/tw ileostomy, J-pouch, etc. Do you have any recommendations for sites you can suggested, that explain the surgery accurately? Is this pouch on the outside, b/c I heard nowadays the pouch is on the inside? Can that pouch break? Well, I am glad to hear you are doing well.
Husband diagnosed with pancolitis in May 2007 at the age of 31

Predisone 40 mg for two months-every time weaned off, symptoms came back, Mesalamine(substitute for Rowesa)enema for 21 days-didn't see results in 14 days so stopped taking it, symptoms seemed to get slightly worse.
Xifaxan-on and off
Current meds. : Humira, Colazal 12/day, Probiotic-Align, Fish Oil
Has never gone into remission


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 4/21/2008 5:36 AM (GMT -6)   
UC spouse, here's a site that has excellent information:

http://www.j-pouch.org/Whatis.html
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
The information I share on this forum is based only on my own experience and study. It is important to consult your health care provider when making health-related decisions.


GISGuy31
Regular Member


Date Joined Feb 2008
Total Posts : 79
   Posted 4/21/2008 7:59 PM (GMT -6)   
UC Spouse,

Judilyn posted a great link.

Also, if you want pictures of someone who actually went through the surgery...go here http://www.flickr.com/photos/markandmegan/801514025/in/photostream/ .

It totally prepared me for the surgery and you get to see what to expect from this guy named Mark in Oregon. I'm really glad he did that, it answered most of my questions and I knew what to expect about the surgeries. The hospitals love using the clear bags...I have the beige ones so I don't see "what's in my bag." It's just not my thing.

The J-pouch surgery is basically a operation where an artificial rectum is made from the end of the small intestine after removing the diseased colon and rectum and is done usually over 2...sometimes 3 surgeries. They first remove the diseased rectum and colon, then fold up the last 6 inches of the end of the small intestine (called ileum) onto itself and staple it together and cut a seam on the inside and make a hole at the bottom of the "J" that is sewn to the last inch of rectum...rectal cuff. It's called "j-pouch" because this section of the small intestine looks like a "J" when they make the pouch. This then serves as the new internal pouch to hold waste.

In the meantime, the patient will have a temporary ileostomy. This is when they pull the section of the small intestine through your belly so waste can be eliminated when the colon and rectum are removed. Waste are emptied into in external bag at this time. This is temporary and gives the internal j-pouch a chance to heal. Then, the ileostomy is reversed about 3 months after the j-pouch surgery. Sounds drastic, but not as bad if your husband is really suffering from UC and the medicines are not working. You go to the bathroom normally (except 5-7 times a day) and don't need an external bag or ileostomy if the J-pouch is functioning normally.

I feel wonderful 2 months after the first surgery....where they just removed the diseased colon and gave me an "end" ileostomy. They will do the j-pouch portion in August and I'll have the ileostomy reversal/removed in November....or possibly during the August operation. You generally will not know until you wake up from surgery to see how far the surgeon was able to go. Some people are lucky enough to have everything done in one surgery without an ileostomy...but this is very rare.

The biggest complication from j-pouch surgery is that the pouch may develop pouchitis over time. This is where doctors believe bacteria goes wild inside the pouch from it not emptying completely and you feel like you have UC again. They treat this with antibiotics, usually over a couple of weeks. If the pouch fails totally...usually in only 5-10% of patients or pouchitis is chronic, then you have to revert back to a permanent ileostomy to live normally again. A small price to pay in my book...since I'm experiencing that part (living with an ileostomy) now and it isn't bad at all.

Hope this helps.
Age 0 to 30 - 100% healthy, no meds, no doctor visits, no hospital stays
Oct. 2006 - Symptoms of UC began
3/5/2007 - Diagnosed with UC - Pancolitis (entire colon involved)
20mg-40mg/day Prednisone, 4.8 g/day Asacol - didn't work at all
10/12/2007 - Steroid Induced Osteoporosis from Prednisone and Anemic
add Actonel (75mgx2 pills/month) and daily Iron Pills
2/12/2008 - open Subtotal Colectomy with Temporary Ileostomy Surgery
Off all meds except Actonel and feel normal again
Aug. 2008 - J-Pouch Surgery and possible Ileo Reversal Surgery Scheduled
"When life gives you lemons...make lemonade"


Mamas Boys
Veteran Member


Date Joined Oct 2005
Total Posts : 1460
   Posted 4/21/2008 10:05 PM (GMT -6)   

UC Spouse - just because the mesalamine enemas did not work the first time around does not mean they won't work this time.  Sometimes you just have to get the right combo of medications for them to work.  Unless they caused a worsening of symptoms I would revisit them.  Otherwise - there are steroid enemas like Colocort or the steroid foam - like Cortifoam.   The colocort steroid enemas were not good for me - but the foam was great.  I would definitely ask for something.

I disagree that enemas are not good for pancolitis.  The oral meds only reach to a certain point in the colon and the enemas come up from the other end and reach what the oral meds miss.  Between the two you are covering the whole colon.


KTM


UC spouse
Regular Member


Date Joined Feb 2008
Total Posts : 70
   Posted 4/22/2008 12:51 AM (GMT -6)   
Judilyn= thank you for the informative site. It was helpful to understand the steps of the surgery.

GISGuy31-thanks again for the detailed post about the surgery. I apologize for saying this, especially since you've been through the surgery, but to be honest it sounds so scary and the pictures are difficult to digest. I guess my husband should see those pics. before considering surgery...but, what if that discourages him? How did you find the courage to go through this? His question would be if he still has to get up at night and go and he still has to go 5-7 times a day...how is that better. I know somebody wrote that it is better since you are without your colon. So, does that mean the urgency is not there once you have the surgery? Can you really eat and drink whatever you want after the surgery? Once the colon is removed, is there any chance of the colitis returning or getting Chron's?

KTM- You made a good point about he enemas working or perhaps he needs to try a diff. one. I agree with your second paragraph.That both will cover the entire colon. We will ask his doc. for the cortifoam. It seems that has helped a lot of people out on this site.

Thank you all for your support and sharing your knowledge! :)
Husband diagnosed with pancolitis in May 2007 at the age of 31

Predisone 40 mg for two months-every time weaned off, symptoms came back, Mesalamine(substitute for Rowesa)enema for 21 days-didn't see results in 14 days so stopped taking it, symptoms seemed to get slightly worse.
Xifaxan-on and off
Current meds. : Humira, Colazal 12/day, Probiotic-Align, Fish Oil
Has never gone into remission


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5187
   Posted 4/22/2008 10:17 AM (GMT -6)   
UC Spouse-- I agree with your wanting hubby to consult a gastro who subspecializes in IBD treatment. Wish I could advise you on the Houston TX area doctors, but I can't. You would like an assessment by someone who knows enough to rule out Crohn's, allergies to 5-ASA meds, even targeting treatment per recent research in the field. This seems totally reasonable to me. There is still the possibility that some avenue of relief was missed during his switch among doctors over the past 11 months.  Have you read over the Salix Pharmaceuticals Newletters (Archive) on their Website? That would be a way of reviewing/comparing main points in diagnosis/treatment of UC advocated by leading American IBD subspecialists with what your husband's recent doctors have recommended for him. No question that it's a grueling process to get the best help with difficult cases of UC, but you're entirely justified in not wanting to "leave any stone unturned" before considering major surgery. I think your husband has one awesome wife!!!!!!! / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

GISGuy31
Regular Member


Date Joined Feb 2008
Total Posts : 79
   Posted 4/22/2008 8:16 PM (GMT -6)   
UC Spouse,

When the symptoms from UC are bad enough and the medicines make you feel even worse without any improvement in UC, then surgery doesn't seem that bad of an option. I was at a point where I felt death would be better than living the way I was. It could be that your husband's symptoms are not that bad yet or somewhat controlled with the drugs he's on. I didn't like the surgery either, but after 3 months with my UC, it seemed the only logical choice for me. I think I spent more time convincing my family that I wanted surgery than I did...they had more of a hard time accepting it. Now, they say I'm just like how I was before I had UC. I sent that website link to all of my friends, family and co-workers. It did all of the explaining for me which made that part of it easy!!!

For surgery...I just felt myself gradually leaning towards it. I waited a whole year before doing it, now I just wish I did it sooner. If he's freaked with the site, that's good. At least he'll know the details of that option, and it will constantly be in the back of his mind and he'll rationalize between drugs vs. surgery. I think you sort of go through the grieving process and once you come to accept it, then your ready for it.

For the other questions...yes, urgency is instantly gone once the colon is removed as well as UC. With pouchitis - inflammation of the j-pouch - usually occurs in roughly 10 - 25% of patients within 5 years of surgery, urgency will return (as well as all other UC symptoms but this is not UC but pouchitis) while you have pouchitis but is usually cured with antibiotics in a few weeks. If the pouchitis is chronic, then they will take out the internal j-pouch and leave him with a permanent ileostomy...therefore no more urgency, no more UC symptoms ever. This only happens about 5 to 10% of those patients (where their j-pouch fails). If the j-pouch is successful...there is no urgency and you can hold it for up to an hour (80 - 85% chance of this happening for me).

For the question about "... if he still has to get up at night and go and he still has to go 5-7 times a day...how is that better." read my 11 reasons posted earlier. It should make sense to him. I was going 12+ times a day...so only 5-7 was much better for me either way. Once at night is the norm with the j-pouch. I don't go at all with the ileostomy...just empty the bag before I go to bed and when I wake up.

Yes, I can eat and drink everything again. I had a whole bag of popcorn last Saturday night. I ate at a chinese restaurant today (or any restaurant) for the first time in 1.5 years. I had hot wings and beer last Sunday. Yep, you can eat and drink everything again. No inflammation, no problem. Also, I'm off all the pills I was on before. I was on 20+ pills a day.

You must check before having surgery that your husband does not have Crohn's. It is absolutely necessary. If he has Crohn's then surgery is off and only the medicine route is available...because he would begin attacking the pouch and lose it. If he has a firm diagnosis of UC, then the surgery option is available to him.

Hope this helps.
Age 0 to 30 - 100% healthy, no meds, no doctor visits, no hospital stays
Oct. 2006 - Symptoms of UC began
3/5/2007 - Diagnosed with UC - Pancolitis (entire colon involved)
20mg-40mg/day Prednisone, 4.8 g/day Asacol - didn't work at all
10/12/2007 - Steroid Induced Osteoporosis from Prednisone and Anemic
add Actonel (75mgx2 pills/month) and daily Iron Pills
2/12/2008 - open Subtotal Colectomy with Temporary Ileostomy Surgery
Off all meds except Actonel and feel normal again
Aug. 2008 - J-Pouch Surgery and possible Ileo Reversal Surgery Scheduled
"When life gives you lemons...make lemonade"


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5187
   Posted 4/22/2008 9:48 PM (GMT -6)   
GISGuy31-- you had your colon chopped out after 3 months with UC? / Old Hat (nearly 30 yrs with left-sided UC; currently on 3 Colazal daily for maintenance of remission)

suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 4/23/2008 8:41 AM (GMT -6)   
Old Hat,

There are many UCers who had fast and furious cases of UC that did not respond to medical intervention and in order to save their lives surgery is the only option. I imagine GISguy31 was in that category. I have met others who had surgery within 1-3 weeks of their diagnosis.

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


UC spouse
Regular Member


Date Joined Feb 2008
Total Posts : 70
   Posted 4/23/2008 1:12 PM (GMT -6)   

Old Hat-You are so sweet for saying that. THanks! But, I hardly think I am...I have my ups and downs too. OldHat, that's exactly why we wanted another opinion. My husband has never been to an IBD specialist. Perhaps they have more resources. How would one know if they have Chron's. Wuuld not responding to medication be an indication? Thanks for directing me to Salix. That's a very interesting site. Are you referring to Volume 1 of the newsletters? I am not sure if I was in the right place.

suebear-If you don't mind me asking, I noticed in your signature, you wrote you lost all of your B12 stores. What does that mean? You know, I heard that a person got symptom free from getting Vitamin B injections. Have you ever heard of this?

GISGuy31-How does one check for Chron's? My husband has already had a colonoscopy and they only mentioned UC. Does that mean it's a strong case? I guess my husband is not there yet, at the point where he feels he is so miserable that he needs surgery. But, I think he is getting there. Unfortunately, I think I am like your family, very hesitant for him to get it. It just seems so painful and life altering, but then again so is dealing with UC.

 

 


Husband diagnosed with pancolitis in May 2007 at the age of 31

Predisone 40 mg for two months-every time weaned off, symptoms came back, Mesalamine(substitute for Rowesa)enema for 21 days-didn't see results in 14 days so stopped taking it, symptoms seemed to get slightly worse.
Xifaxan-on and off
Current meds. : Humira, Colazal 12/day, Probiotic-Align, Fish Oil
Has never gone into remission


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 4/23/2008 2:01 PM (GMT -6)   
Surgery is one of the viable treatments for UC. There are some people who go straight to surgery for their own reasons. As with any medical decision, it's their option. I remember one young woman who used to come here several years ago, who opted for a permanent ileostomy as soon as she was diagnosed. She had just started a surgical residency, and needed to be reliably able to stand in surgery for hours at a time while complex procedures were being done. She was very dedicated to her career choice and felt the negative impact on her life would be less from an ileostomy than from medical treatment or a J-pouch.

Obviously that hasn't been my choice, but that doesn't mean it was a wrong choice for her. There are a variety of "natural" treatments, a variety of medical treatments and a variety of surgical treatments available for UC. In the end, it's the patient who decides. Delaying surgery as long as possible isn't everyone's goal, and that's okay too.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
The information I share on this forum is based only on my own experience and study. It is important to consult your health care provider when making health-related decisions.


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 4/23/2008 2:11 PM (GMT -6)   
I bled straight for over 2 years and became severely fatigued. My GI ordered a CBC to look for anemia and to check for B-12 levels. I was both anemic and short on B-12 so I had to get regular injections. The B-12 did not help the UC but did give me a bit more energy. After surgery my B-12 bounced back on it's own as well as the anemia was immediately resovled.

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

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