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Surgery vs what?

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Posted 4/1/2011 10:00 AM (GMT 0)
After 6 weeks of barely responsive flare reduction to 40 mg pred., twice daily Rowasa enemas and 50 mg Imuran, I was admitted to the hospital on Sunday, March 26. On Monday GI doctor wanted to send me home saying I wasn't bleeding enough to justify being in the hospital. He wanted me to started taking walks around the neighborhood even though I can't even walk to a commode by myself!
A group of nurses became my advocate and went over his head with evidence that I was having bloody explosive D that was going all over the walls, floor bathroom, me and some times them. One of them even saved an episode and demanded he come look at it.
After that he went to the other extreme saying I needed emergency surgery. I told him that the colorectal surgeon I consulted that morning felt that we still had a couple of years before needing surgery and that I should try the biologics first.
The hospital brought in two other colorectal surgeons who agreed with my private consult.
I am still not responding to 60 mg iv prednisolone. I have had sensitivity reactions to some of the pain killers. The hospital is packed to capacity. Three code reds on my floor last night! No one died but it is pretty scary. I know I will be urged to have surgery again today because they want to take care of as many people as possible and I am messing up their triage system.
Need advice and support.
Where is the best place to learn about the pros and cons of each method of surgery? How do you decide what is best for you?
What are the down and dirty facts of living with the surgery afterwards?
Any one had any brilliant pain management solutions? My veins keep shutting down so any iv med is going to be a problem.
Thank you.
SZm
Posted 4/1/2011 10:18 AM (GMT 0)
SZm,
Surgery is a cure for UC, and life with an ileostomy is fantastic, compared to being sick with chronic diarrhea. I know, I've been there, and my heart goes out to you. You can find out a lot of great information by posting your question on the Ostomies forum on this site. Personally, I don't see the point in waiting a couple of years to have surgery. If you want to be done with UC once and for all, just go ahead and have the surgery now. They can give you a PICC line, so they don't have to keep sticking you with needles, and you can have an epidural for the pain.
Wishing you all the best,
Cecilia
Posted 4/1/2011 1:07 PM (GMT 0)
So glad to hear from you SubZ, I wondered how you were faring after your last post. Sorry you were so bad as to end up in hospital.
I don't have any advice on surgery but if you ever want diet mod. advice I'm here.
Best wishes.
Posted 4/1/2011 1:19 PM (GMT 0)
Hi I just wanted to offer some support.

I'm, so sorry you're faced with such an awful dilemma and it sounds like it is being compounded by conflicting advice from your doctors. Your GI who's trying to discharge you one minute and rush you into surgery the next really isn't helping the situation is he! It's almost unbelievable that the first colorectal surgeon said to wait a while and try biologics and yet another two said go ahead with the surgery, no wonder you need support.

I haven't had surgery but came close a couple of times but was always fortunate in being able to get things under control before actually going ahead with it. Clearly getting this flare under control is paramount at the moment as from what you describe you are in a very bad flare and it needs some positive treatment fast. Is there another GI doctor in the hospital who can give you a more balanced view? I know it must be really hard but try not to let the fact the hospital is so busy and the fact that some of the medics want you to have it done influence you too much especially in light of the conflicting opinions you've been given.

I have researched a bit on the surgery and the different types and the general consensus is that the vast majority do very well afterwards. My mum had a colostomy (as a result of a non IBD related condition) and managed extremely well with it. There are loads of support groups here in the UK and I assume even more in the States for people who have had the various surgeries.

Whatever you decide I wish you well and hope that you are able to take the time to make the right informed decision for you.

Carol
Posted 4/1/2011 1:30 PM (GMT 0)
I was in the hospital in a similar situation to you last September. I am surprised your doctors haven't suggested Remicade. Mine did after I was in the hospital for a week and massive doses of Prednisone weren't working. I actually would have preferred surgery over Remicade as I didn't like the idea of getting infusions of that drug every 8 weeks for the rest of my life. Still, I got an infusion as I also didn't want emergency surgery because I was in really rough shape and very weak. The Remicade worked wonders and ended my flare in about 5 days. I ended up having painful side effects from the Remicade that were ruining my quality of life worse than UC, so I opted for surgery a month or so later anyway. At least by then though I was in fairly good health again and out of the flare. The surgery went really well and I am so, so glad I had the permanent ileostomy. I feel better than I have in years. Still, if you want to go the medication route, Remicade might be just the thing you need to rapidly end your flare and get you out of the hospital so you can have some time to figure out what your next steps will be.
Posted 4/1/2011 2:37 PM (GMT 0)
Your alteratives are biologics, diet modification(which I am an advocate of; 2 weeks of 40 mg of prednisone did nothing, and 7 weeks of the SC diet has me in remission), and finally surgery. From hearing testimony of people who have undergone surgery, it's not a cure-all. Some, not all, this have problems afterwards. I'm a big advocate of diet change, and like Iamagardener, ask away if you have any questions.
Posted 4/1/2011 4:06 PM (GMT 0)
Couldnt you get a jpouch?
Posted 4/1/2011 4:07 PM (GMT 0)
The Ostomy board here on HW is a great resource, people with ileos and j-pouches there, many people happy with each. You can also go to j-pouch.org to learn abotu j-pouch. Your GI sounds a bit unstable to me, one day you're not sick, the next you ened emergency surgery? Please see someone else before you make any decisions. I don't think surgery would be a bad choice, I see so many people who are extremely thankful to have had surgery, but maybe you have some more options.

Are you in the theraputic range for imuran? 50mg is a low dose... You could try adding allopurinol if you're not in range, I did and it helped me! Have you considered LDN? Are you taking probiotics? Have you tried dietary changes (didn't work for me but works for some)? Fecal Transplant can help in some cases.

Have you had stool tests? It is possible you have c diff or another bug on top of youre colitis that is making it more difficult to treat. If you get a negative, retest! Stool tests give a lot of false negatives.

I hope you are feeling better soon.
Posted 4/1/2011 4:11 PM (GMT 0)
Your situation is a great reminder to everyone with UC to research the options before getting too ill. I think a wise course of action for you would to start be to start Remicade and if you respond positively, start researching your surgical options. Basically you have 3 choices, permanent ileostomy, k-pouch, or j-pouch. Most people either choose the ostomy or the jpouch. The kpouch is usually selected if one has a failed jpouch or ostomy. You should also consult with a top surgeon. Doesn't sound like any of the surgeons in your current hospital are worth meeting with. You can get great referrals at www.jpouch.org

I just acheived 10 years with my jpouch. Life has been OUTSTANDING since I had my colon removed. No meds, no weird diets, no travel or social restrictions. I got my life back.

Sue
Posted 4/1/2011 4:27 PM (GMT 0)
     I have great compassion for you because I understand exactly how you feel.  I suffered with UP for twelve years before surgery.   My GI doctor would not refer me to a colorectal surgeon.  He said he didn't know of any rolleyes .  Although I never had the explosive diarrhea such as you describe, I did have severe urgency, bleeding and cramping.

     Since I live in south Jersey, I looked on the internet for a reputable colorectal surgeon in Philly.  I don't trust the surgeons in my area or the hospitals..lol.  I ran the gamut of meds...6MP, Remicade, Humira...nothing kept me in remission.  I became prednisone dependent for two years before surgery.

     Sometimes you just have to take matters into your own hands.  I don't know where you live but try to find the best colorectal surgeon in your area and get a consult as soon as possible.  It sounds as though you aren't getting the best of care.

     Good luck and keep us informed.

Posted 4/2/2011 12:04 PM (GMT 0)
I can totally understand how you must be feeling! I was just in the hospital for 10 days asking myself if I should get surgery. After a week of bowel rest and prednisone I was better to go home and will start imuran. Like others said, I suggest you try another drug and use that time to do more research on surgery and maybe plan for it.

Good luck!
Posted 4/2/2011 4:22 PM (GMT 0)
Sounds like your first should be to get a new GI.
Posted 4/2/2011 4:24 PM (GMT 0)
Yes, with the right surgeon you can lead a very active life. At age 52, with a jpouch that's 10 years old, I am in the top 1% of physical activity for my age group.

Sue
Posted 4/2/2011 5:10 PM (GMT 0)
Go to the site jpouch.org.  You can read about real people who have had the surgery. Some are thrilled with it (like me) and others are not. The surgery has a huge success rate.

Last year at this time I was at death's door with the UC. Surgery was the best decision I ever made. Good luck to you.

Posted 4/3/2011 3:46 AM (GMT 0)
Just erased my yesterday's weird post because I realized I must have been totally stoned on pain killers when I wrote it. It made absolutely no sense. I am very sorry! I don't even remember writing it.
Thank you everyone for your great suggestions. There are so many postings, I hope I don't miss anyone in my responses!
Suebear, your happiness with surgery is what started opening my mind to seriously looking at it as an option. I still have a lot of irrational fears to deal with. My grandfather's colostomy was a failure and ruined his quality of life. I will start with the places you and ByeByeUC suggested. You are completely right about doing the research before you need it. My fears contributed greatly to this flare's seriousness.
The other main reason I reached this serious a flare level was my being afraid to go to a hospital or doctor because I had no insurance. If I had insurance back at the end of Jan 2011, I would have started treatment immediately and probably already be in remission. I had no idea how understanding and helpful institutions could be. I have a payment schedule set up with everyone, but almost all of the costs are being absorbed by the hospital and doctors. If anyone else is in my position, please swallow your pride and get help. I wish I had done this a long time ago.
Never underestimate the kindness of strangers!
I am doing remarkably better today. Switched to a mid-line iv instead of a normal iv. It is wonderful not to keep having veins collapse. Pikk line may be next but I am very happy for now. I actually was able to eat something for breakfast!
Have a fantastic week-end.
SZm
Posted 4/3/2011 3:56 AM (GMT 0)
Cecilia,
Thank you for your success story. I need to read as many as I can to help work through my fears. I have four children. Two are in college plus both my husband and I are out of work. I need to wait until at least one of us has insurance and a job. I have not been able to find a way to have someone else pay for the surgery, yet. I am still looking but it is hard while you are in the hospital in quarantine. The children have gotten jobs and scholarships so at least some things are looking up!
Szm
Posted 4/3/2011 4:00 AM (GMT 0)
imagardener2,
It is actually a very good thing to be in the hospital and be forced to face my fears about surgery. I feel like I have a chance for a quality of life that I haven't truthfully had in decades. Your support is very welcome. I hope you are doing well.
Many hugs,
SZm
Posted 4/3/2011 4:29 AM (GMT 0)
Carol,
It looks like the prednisone is finally starting to work. The bleeding has been dramatically better today and the pain level is lower. Thank you very much for your caring. It meant a lot to me during a very frightening time.
I am just taking things one step at a time and not rushing into anything. At this point, I listen to everyone's opinion, do some research and then trust my gut reaction. Everyone seems to be all right with this so the tension level has dropped to almost nothing.
In my business I am always having to deal with conflicting advice so that isn't the part that scared me. It was not knowing enough and being in too much pain to think clearly. I think the pain also made me feel full of panic. SueBear's suggestion of learning as much as you can before you even need to know it is priceless advice. After I make my decision, I am going to put it in writing with lots of people so if something like this happens again, I'll know what I intended and other people can give me the right kind of support.
Thank you again for your generous support.
SZm
Posted 4/3/2011 5:03 AM (GMT 0)
Surgery vs what?

If depends on whether or not you have found a treatment that works for you, that will continue to work for you, and that does not harm your body.

If you haven't, then it is...

Surgery vs suffering.

Or

Surgery vs harming the body only to have to get surgery later anyway.
Posted 4/3/2011 1:46 PM (GMT 0)
Kiolm,
Perhaps you missed the beginning of the thread? I had an emergency hospital admittance 6 days ago for what I thought was a very bad flare
not responding to weeks of prednisone or other medications. I woke up to find hospital staff surgeons telling me I needed emercency surgery. My GI came by next and said I was fine and could be treated at home. Needless to say this caused panic since I was peeing blood from my anus no D.
My private consult colorectal surgeon came by and said I needed to stay in the hospital for at least 2 to 3 weeks to take care of this flare and then look at surgery options and decided what was the best choice for me. I have still not decided on surgery, but I switched immediately to a better gi!
I remain on this section because of the uc support I still need and the friends I want to continue to support. This site is also very important for keeping informed on effective long-term pain management, diet information, current research, bad research, medication and accurate patients responses not disguised by statistics.
I have no idea why you are accusing me of being a pimp. I find this very insensitive and inappropriate. I will be personally blocking your future posts because they are very hurtful and thoughtless. I don't want to see you hurt anyone else, they way you have hurt me.
I have had uc more decades than you have been alive. I hope that one day you will decide to mentor others instead of kicking them when they are down.
Posted 4/3/2011 2:21 PM (GMT 0)
kiolm:

If I may....

I had the first part of my surgery a little over a week ago, thus I no longer have UC. So why am I still here? Because arriving at this point was extremely difficult, both emotionally and physically, and if I can share that experience with someone else and help them then I am going to do that. If that makes me a pimp, then whatever. I don't want to try to speak for sue or any of the others who give advice and feedback about their surgeries, but I assume they hang around for a similar reason.

I have zero to gain by sharing my surgery experience with others. I don't make any money from it. I'm not connected to the industry in any way. Honestly, if people are able to achieve a remission they are happy with through drugs, diet, supplements, or some combination of those things then I am thrilled for them and don't think they should have surgery. I do think everyone with UC should become familiar with the options and know what they would want to do in the event their current treatment plan fails.

I found your post to be extremely belittling, insensitive, and out of line. You should be ashamed of your pompous attitude.
Posted 4/3/2011 3:01 PM (GMT 0)
SZm,

Back in 2006, I was hospitalized because of a severe flare up that was not responding to oral pred. I had just moved to Arizona and was slow getting treatment started for the flare because I didn't have a GI doc yet and was waiting for an appointment at the Mayo clinic. Once a flare reaches a certain point, it can be very hard to get under control. I also made the stupid mistake of stopping my rectal meds when I started the oral pred thinking that they would be unnecessary because the pred would take care of everything. Yeah, I know... really stupid, and I paid for it.

In the hospital, the GI Doc put me on continuous drip IV steroids. It seemed to take forever, but eventually I did get back into remission, and in fact was in remission for over 3 years. Glad to hear that you are finally responding to the steroids.
Posted 4/3/2011 3:03 PM (GMT 0)
kiolm

Your disgraceful post really doesn't justify any response. Suffice to say I too have had UC probably more decades than you have been alive and find it appalling that in order to court controversy and draw attention to yourself you deem it necessary to make such disparaging comments.
Posted 4/3/2011 3:57 PM (GMT 0)

Subzeromambo - I'm glad your IV is starting to work. I found IV steroids and IV Infliximab to be the only treatments to completely stop my bleeding.

kiolm - don't be so closed minded. I too like a lot of others on here have been forced to think about surgery seriously as the drugs haven't worked. Although I am expecting surgery in the next few weeks, it has been a massive help to me to be able to come on here and read of the experiences of others having gone through the whole experience. As with any surgery, there are still often things to deal with in the aftermath and it's definitely helpful to be able to come on here post surgery to draw from other peoples experiences. Also these people out of the kindness of their heart post on here regularly in order to help others.

Posted 4/3/2011 4:25 PM (GMT 0)
Subzeromambo, I am so glad to hear you are finally responding to the IV steroids. I have been following your posts for the past several months and know you have been through a difficult time. Being unemployed and worrying about finances only makes it worse. I too have been out of work for a while and it is scary. Luckily I have COBRA but that wont last forever. It is good to hear that the hospital and doctors are working with you financially. I find that comforting as I worry about my own future. Keep getting stronger!
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