HealingWell
Search Close Search
☰

Is surgery right at this stage?

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 4/3/2010 5:35 PM (GMT 0)
My wife has been suffering from UC since last 7 years.
There have been ups and downs of flare ups.

My wife 4'11 usually weight 44 kgs, now she is 37/36 kgs since last couple of months.
She has been bleeding almost daily since last 3 to 4 months, stool frequency once per day, with some blood mixed in stool and sometimes 2 to 4 drops of dark brown blood after the stool.

She started again on steroids 4 months back and stopped after 2 month as steroids was not working, this time.
She, along with mesacol medicine, also started on ayurveda since last 2 months, after stopping steroids.
She is still bleeding almost everyday. Cramps when passing stool and blood as usual since last 4 months.
But still, stool frequency is just once per day. No pain or whatsoever, just that she has got too weak due to weight loss and lost of appetite.

Life has come to stand still since last 7 years. We as a family are fed up living in fear daily.

We recently talked to a surgeon about our wish to go for permanent ostomy bag surgery, (that's because from what we have researched on the net, J-Pouch is little more riskier) But surgeon strongly advised against surgery. He said surgery is required only when the patient passes more than 10 stools per day and heavy blood loss.

But the thing is, we don't want to keep living in fear no more. The surgery may be riskier, but my wife is also now ready to take the risk and ready to face either make it break it scenarios.

What would you suggest? Should she still keep taking meds and keep trying to control UC the entire life, until the worst case scenario is hit. Or should she go for permanent ostomy bag?

Please please please share your opinions and suggestions, please we are totally confused and desperate now.

Thanks in advance...
Posted 4/3/2010 5:55 PM (GMT 0)
There are people on this forum at every stage of UC and with every different opinion you could want.
If you want someone to tell you "Yes. Surgery is the answer, it worked great for me" you will get that.
We all understand the fear, the absolute breakdown in normal day-to-day living, something that doctors never want to deal with.
I have been desperate as you and she are and thought that surgery was very near for me.

I don't have your answer. That is for you and your wife to decide. It is your life.

3 months ago I started the Specific Carbohydrate Diet (again) because my husband (who is as caring as you are) saw an article online saying that many UC people were gluten-intolerant which caused the symptoms. I have had UC for 10 years, been tested for gluten (negative) and lactose (negative) but since my meds were not working (except for steroids and Rowasa enemas nothing ever really worked) I had nothing to lose by removing bread/gluten from my daily diet.

That began my recovery. I have written about this many times here so I will condense it and say: please consider diet modification to see if she has reduced symptoms. My daily bleeding stopped in under 3-4 days.
The SCDiet is healthy (not kookoo) filled with protein and some veggies. There is a book "Breaking the Vicious Cycle" that explains it but there is also online information and forums.

http://www.breakingtheviciouscycle.info/

These people don't have any monetary gain from it. I bought the book used online.

This forum is ongoing and won't give you beginner information, just fills in the question marks.
http://health.groups.yahoo.com/group/BTVC-SCD/

One last suggestion: has she used mesalamine (Rowasa) enemas? They really help.

Best wishes.
Posted 4/3/2010 7:54 PM (GMT 0)

GIs tend to want to push medical treatment; surgeons tend to promote surgery.  Your wife's decision is her choice.  Has she tried Remicade? 

I chose surgery over continued medical treatment because I was steroid dependent and because I had no quality of life.  I could never plan to do anything because I never knew how I was going to feel.  I felt like I was a prisoner to the toilet.  It was a hard way for me to live because I am typically very physically active.

I chose  jpouch because I wanted to continue backpacking and I liked the idea of preserving continence.  I am thrilled with my jpouch and have never regretted my decision.  I do 100-200 international hikes and can plan an extended vacation without worrying about my health or where the bathrooms are.  However a perm ileo is a good option to.

It's not up to your GI to say when you wife can elect to have surgery; the choice is hers not his.  You can always consult with a CR surgeon while she continues treatment. At least that way your wife could learn about the various surgeries and recovery.

Sue

Posted 4/3/2010 8:01 PM (GMT 0)
In my opinion it really does come down to one question:

What will make your family the happiest? What will give your wife, you, and your family the best life?

If her UC is reaching a point that it's severely disrupting her life, then perhaps surgery is a valid consideration. She may be happier with an ostomy and being able to live without symptoms.

My concern with surgery is that I will forfeit the possibility of remission w/o the bag. In other words, it's somewhat of a gamble.

Based on your description of the level of her disease, if it were me, I would not move to surgery.
Posted 4/3/2010 9:32 PM (GMT 0)
Nautanki:

 

Please keep in mind that this post is just my opinion on this subject.  I personally have been where your wife is.  I have had blood stools for months making my life almost impossible and very difficult on those around me.  I choose to try the meds first in a systematic and chronological order which is almost the way UC is treated by most GIs and colorectal surgeons.  Of course there are exceptions but most will start with prednisone, with mesalamine meds.  I was treated the same but it didn't work for me.  I eventually had to go to an immunosuppresant which is common for many UCer's.  I have been put on Imuran which is working very well for me, no blood, no urgency, have gotten my life back.  If this fails, then comes the class of biologics like Remicade or Humira.  Most colorectal surgeons won't even entertain the idea of surgery unless one goes through the various meds first.  When I was having problems a respected colorectal surgeon said look you have UC but you have only taken prednison and asacol, you have just scratched the surface.  You need to try the other meds first.  Once those fail surgery is always an option. 

 

Let me also say that there are many people here in this forum that don't want to take any meds, such as immunosuppresants or biologics but I am not one of them.  I will first try those meds and if those work I will gladly surgically remove my colon.  So, my only advice is to slow down and try the other medications first but this is a personal and family decision.  In conclusion, don't despair there are options for you and your wife, you just have to give it more time and be aggresive in treating your UC.

 

MyUC

Posted 4/3/2010 10:30 PM (GMT 0)
The ultimate decision is your wife's and how her UC is affecting her and her family. My advice is to find another GI--one who will allow your wife to decide what she wants to do.
Posted 4/3/2010 10:40 PM (GMT 0)
Seek a second opinion, I believe surgery is warranted when your quality of life is poor, and your wife's (and the whole family's) quality of life is poor.

Also, you may want to reconsider j-pouch surgery. It is not riskier. It is mostly quite successful and if the outcome does not meet your satisfaction a permanent ostomy is always an option. Your wife might not like life with an ostomy and may wonder if the j-pouch may have afforded a better quality of lift for her. If the j-pouch is successful (most are, remember, the people who have successful surgery outcomes are generally not posting about it on the web, they are out enjoying their health and lives), if the j-pouch is successful your life will go back to pretty much how it was eight years ago.

As far as surgical risk is concerned, it's no more with a j-pouch construction. Research your surgeon and find one with a lot of these surgeries under his belt.

Whatever you decide, I hope it all goes well for you.

Meesh62
Posted 4/4/2010 12:42 AM (GMT 0)
well i chose surgery, cause like yall, i was tired of my life being at a standstill.
But anyway, it is up to you, not the dr, whether you want surgery or not. I suggest a second opinion first.
Posted 4/4/2010 12:58 AM (GMT 0)
     I've had this disease for over eleven years.  Like MYUC, I am trying all the meds before giving up on the colon.  The GI doctor I see I have been with since being diagnosed.  I did seek two other opinions unbeknownst to him and he did send me over to the Univ. of PA Hospital to seek the opinion of a "world reknown" GI specialist last fall.   Every single GI doctor agreed with the treatment I have been receiving from my GI doctor.  He is good but when you don't seem to be responding you start to wonder if something more can be done.

     After my 2nd hospitalization in 2008, I saw a colorectal surgeon who is classified as one of the best in my tri-state area (NJ, PA and Del).  At the time I saw him, I had not tried the biologics yet.  He thoroughly went over my hospital record and past history of my disease.  The advice he gave me was that I was classified as mild/moderate and even if I had the surgery, I would still have to empty the bag 7-8 times a day.  He listed all the complications which could arise from such surgery.  He didn't use any scare tactics, he just laid it on the line.  At the time, he felt that my quality of life would not be any better if I decided on the surgery.

     Since 2008, I seem to be flaring more often.  I don't like (and neither does my doctor) being on steroids so often.  Remicade failed and I am now on Humira, which is my last straw.  I should adhere to my diet a bit better, but don't think I do that badly on it.  Should I opt for the surgery, it will be in one of the major Philadelphia hospitals by a colorectal surgeon who has LOTS of experience.

     Good luck to your wife. 

Posted 4/4/2010 4:15 AM (GMT 0)
to clear something up, if you chose a perm ileo (the bag) unless you just eat a ton of food, you wont have to empty but about 4 -6 times a day and thats pretty much at your leisure.
Posted 4/5/2010 1:16 PM (GMT 0)
I am worried. I am worried because she bleeds every single day. Although stool is just once per day and blood is 2 to 4 dark brown drops and some blood mixed in stool. Stool consistency is normal, except at the start of each stool she passes mucous and a little watery stool, but after that, normal stool.

Can a daily bleeding ulcer cause spread the disease even further? or even worse, cause other organ failures?
Posted 4/5/2010 1:27 PM (GMT 0)
I had daily bleeding for over 2 years. It lead to chronic illness anemia and low iron counts. But it didn't cause problems with other organs nor did it make my UC worse. Seeing blood is scary and should be monitored but don't worry. As long as your wife is candid with her GI about her symptoms he/she will be able to react to changing symptoms.

Sue
Posted 4/5/2010 1:47 PM (GMT 0)
Nautanki:

Please take a deep breat.  It merely sounds like you and your wife need to meet again with her GI doc.  Your description of her signs and symptoms are very consistent with UC, just not well controlled UC.  Many people on this forum have shared your wife's situation at one point or another.

UC is a very limited disease process.  It resides in the large colon exclusively.  Yes it can have other effects in other parts of the body such as the skin, eyes, arthritis and liver but primarily it effects the large intestine.

My only input is to reconvene with your GI doc and explain as clearly as you can what your wife is going through.  I would be surprised if the doc did not make changes to the current treatment regimen.  Surgery is always an option but my previous post explains my personal viewpoint on that. 

MyUC

Posted 4/5/2010 4:46 PM (GMT 0)
This is a very personal question that only you and your wife, along with your GI and surgeon can make. There is never a right or wrong answer unless one needs emergency surgery. Both docs will give you their opinions and then it is up to you to decide. The norm seems to be that your GI will put off surgery while the surgeon will want to operate as early as your wife is ready since recovery is much better the healthier you are going into the surgery.

As you weigh all your options ( and make sure that you are fully informed) you will, with a little time, be able to make up your mind. You may reach a place where you are either so fed up with life the way it is, or that your wife's health is greatly diminished that you are willing to risk the possible complications of surgery. You may also find that life is actually quite livable the way it is and maybe there are other drugs to try. Again, it I think it all comes back to being fully informed.

For us, my son's health had diminished terribly and he was no longer in control of his life. We had tried most of the drugs that for us we needed to try, to know in our hearts, that there was not a comparatively "easy" fix out there. That being said I absolutely hated the idea of him being on those drugs for decades and decades. Surgery for us was a blessing. My son had many complications but all could be dealt with. Even though he had a comparatively hard time he would do it all over again in a heart beat. Truly our only regret is that we did not do this earlier. He is now completely healthy, has more energy than he can remember and is living life the way a teenager should.

My best advice is to speak with as many people as possible and spend the time to get the very best colorectal surgeon that you have access to. Make lists of all your questions and make sure you get them all answered.

This is always a very difficult question that we have all struggled with.

I wish you all the best,
Cathy
Posted 4/5/2010 5:50 PM (GMT 0)
Nautanki,
I know you are in Mumbai and I don't know what is available there in terms of probiotics, medical treatments for UC etc. Are the biologics easily available (and affordable)? I'm not sure if your wife is against more aggressive medical treatment (for reasons which I can understand) or if she is at the end of the treatment chain? As all of the above have said, it's such a personal decision which only your wife can make (with your support of course). If it were me, I would chose surgery. Since I have to decide how to procede for my young daughter, the decision is much more difficult, especially with research indicating a new generation of biologics within the forseeable future with many many less potential side effects. But then, there are no guarantees with these things and your wife could be out living her life free of UC in a year or so. Good luck with whatever you decide.
Posted 4/5/2010 6:05 PM (GMT 0)
She does not sound that bad. Losing a little blood every day won't hurt you, your body can keep up with that.
So I wonder, why does she have no appetite? It seems there is another issue causing that.
Are you obsessing about it too much so that she is more upset than she needs to be?

After seven years, it gets old. I understand that all too well. Maybe I should have had surgery a long time ago, instead of dealing with it for so long. But having her colon replaced with the bag might not help her appetite.
Posted 4/5/2010 6:34 PM (GMT 0)
Hi Nauntaki,
First of all, you are such a caring partner - you deserve a hug for that!

Secondly, you might remember that I am one who also tried Ayurveda. It did not work for me (I'm sure it works for some). From your post, I think you might be putting too much hope on Ayurveda when there are SO MANY other things to try. Particularly enemas. On this site, you will find many, many people who found them really helpful. There are all herbal ones and prescription ones and both have in my experience worked when nothing else could "touch" the inflamed areas and stop the bleeding.

Also, have you tried probiotics, and some of the different diet suggestions? (salmon and high omega-3 foods, spinach and sunflower seeds, etc.) Also, I tried ordering meds from India (via Canada) at one time, but the Asacol formulation (I forget the name) is not bio-identical and it did not help me like my expensive US Asacol does. Just something to ask about.

I have been bleeding almost constantly since 2007 (only enemas stop it, but I'm not very regular at those). I take extreme care to keep my iron levels high. I also eat very high calorie foods at every meal (thank heavens for avocados and mayonnaise!)

Surgery might be the right option for your wife - but either way, she should focus on regaining her weight, iron counts, and strength right away. Then make a decision from there.
Posted 4/5/2010 7:04 PM (GMT 0)
hi nautanki...... i would suggest just relax..... What you say about your wife's condition does not sound that bad to me....so relax and do not take a hurried decision of surgery. I guess your wife has Ulcerative Proctitis and not ulcerative colitis. Try out other stuff...check out the foods she needs to avoid (if any), if yoga/meditation helps her, check out auyurvedic/homeopathy (i am planning to start something soon!!) ...if one ayurvedic doctor doen't work check out other..... all i mean to say is keep trying & keep searching. Something my husband tells me is "start living with it & stop resisting it- accept that UC will be a part of you & find joy in life with it-make her understand this - my husband has after these years successfully made me accept this life long friend :-)
Also, do let us know medicines she is on..since i am guessing she has Ulcerative proctitis-is she on rectal medicines.
Again- her condition as you describe is not that bad and no need to worry so much. there are many in this forum who are suffering many times more and still trying not to get surgery.
Posted 4/5/2010 11:26 PM (GMT 0)
Hi Nautanki, Your wife’s symptoms do not sound very bad. I had J-pouch surgery about 1 ½ years ago and I do feel better than before but only a little. Most people who have had surgery say they felt much better right after their colon was removed. It took me over 6 months to say that surgery was better. My symptoms were 7 to 8 BMs per day with lots of blood and extreme urgency. I now have 5 to 6 BMs per day with mild urgency and no blood. I struggled to decide on surgery and feel if my symptoms were any less than they were I would not have had surgery. I still feel that way. Before surgery I filled the toilet bowl with blood almost every BM for over 3 years. Blood was never an issue with me because it never caused any problems. If it would have made me anemic it would have been different. If I didn’t look in the toilet I would never had known I was bleeding. If I had your wife’s symptoms I would never have had surgery.

I had a temporary ostomy for 3 months and it was terrible. I had problems with the skin burning around the ostomy and also with leaks. Over night my bag would fill with gas like an over inflated balloon and start to leak. The only way to prevent that was to set my alarm to wake me in the middle of the night so I could empty the mag. Because of my anatomy I had to have the ostomy located above my belt line. That meant I couldn’t keep it under my pants and I couldn’t tuck my shirt in. If I wore a bathing suit my ostomy bag would be in full view for everyone to see. With your wife’s symptoms should think hard and long before considering surgery. Some surgeons won’t even consider doing it with such mild symptoms.
Posted 4/6/2010 1:32 AM (GMT 0)
I think, that regardless of how bad the symptoms sound, if they are bad enough that they are affecting your quality of life, then surgery is an option.
And what may not sound like a bad case of UC to one person, may be horrible to another. It depends on how your body can deal with the stress of a diseased organ doing its best to make you miserable!
Some people can deal with the loss of blood much better, however, losing blood, regardless of whether it makes you anemic or not, is not good for your body. And any illness, even something as simple as the flu, takes a toll on your whole entire body, and a serious illness can really wreak havoc in a short period of time.
So, its not so much the severity of the symptoms, its how they are affecting each person.
Posted 4/6/2010 7:29 AM (GMT 0)
You all are so much great help. How can we thank you all.
My wife gets very tempting to eat good food, and I can understand that. 7 years is not a short time.
But yes, her skin is very very sensitive, so with leakages will not be easy to deal with, so j-pouch seems better that way.

We will think more about what to do next. For now we wait and watch for few weeks. In the meantime, she will start eating just about everything and see how it goes. If things do worsen, we go for surgery. If it bleeds a couple of drops daily, so be it.

Visiting doc this weekend.

I will for sure update this forum on next development.
✚ New Topic ✚ Reply