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Posted 12/16/2011 12:46 AM (GMT -5)
Debating surgery and am about 80% sure it is time. I have had UC for 5 years now and have taken almost all medications possible. I am now taking 6MP and Remicade. I have had to increase my remicade infusion from every 8 weeks to 6 weeks do to flaring at the 5-6 week mark. I have been taking remicade for two years now and three months ago began taking 6MP. When the medication doesn't work, I have extremely bad flares and at times have had to resort to steroids. When it gets bad, I am 100% sure that surgery is necessary. But days like today, when I feel normal and am able to have normal bowels it's hard for me to make that decision. I've read that most patients are having 13+ bowel movements a day but I have never been more than 10 or so.

Remicade is a very dangerous drug and the risks may outweigh the benefit, especially since my doctor does not believe I am in remission or EVER have been. It's inevitable that I will have surgery but should I wait a little longer?

Right now I feel as though I am just buying time. Eventually this remedy of medications is going to wear off and I will have no choice but surgery. I want to schedule the surgery rather than it become emergent because I simply waited too long. Does anyone out there have advice for me or think I am rushing the process?

Thanks for all your support and opinions! Us, UCers need to stick together :)
Posted 12/16/2011 2:19 AM (GMT -5)
I am in the same boat as you. Remicade did not work and I was on 6 mp at the same time, which I had started 7 months prior. I only had 4 infusions total. Now I am on 10 pred and talking to surgeons. I had a great thread with some awesome responses to the same question, so highlight my name and you should find it. It was a 10 days ago maybe, perhaps on the ostomies forum.
Posted 12/16/2011 3:35 AM (GMT -5)
I'm not in the same playing field, but I would not be lying to say I'd have had surgery LONG before you would have even considered it.

I've had way too good of a run on the 5ASA oral/rectal. I never want to go on anything more than topical. Systemic immuno/biologic meds aren't what I'd consider.

Sounds as though you've given it your all.  Only you can determine what meds you want to continue or quit.  I agree you're buying time...but for what?  I'd rather learn to function now without a colon than later when I'm much sicker.

I've not read from anyone other than one who's been regretful of having the surgery.  Although one cannot trust everyone regarding motives of statements, I believe the regulars who have had the surgery.  It would be a scary process, but the support would be encouraging to move forward.

q

Posted 12/16/2011 11:10 AM (GMT 0)
Hi, like all of you I had UC and IBS....but I felt that somehow there was an answer or cure. I did all the tests and scopes an scans several Dr.s could think of, but they found nothing. Finally I asked the last Dr. was it possible I had Celiac Disease or at a minimum a sensitivity to Gluten, and could I be "flying under the radar of the test and scopes"....his answer - yes, Sadly my insurance would not pay for nutritionist, so I had to just start experimenter on my own and keeping a food diary As it turns out even though I failed every singe test for Gluten, Gluten caused my UC/IBS...for the most part. So I've gradually put myself on a gluten free diet. It's kind of boring since I'm not a cook and used to packaged food and junk food,but I no longer have the problem.So it's worth it me to give up all those foods that I loved, but I have also found I have problem with fats (with causes pain at the bottom of my rib cage...so I stay away from fats) and I already knew that I was lactose intolerant (so no dairy products..there went my favorite yogert, milk and many other things) I have also found sugar to be problem. No where near the problem that Gluten is, but still a problem. My life is petty normal now and I'm pain free, if I stick to my diet..which is only gluten free foods, fresh fruits and veggie, drink boiled spring water and also I only eat the breast of turkey (it's low in fats).I don't eat red meat as it causes other problems. I just wanted to let you all know that there are times all the tests can say you don't have a Gluten problem...and yet you really can have. That's how it was for me...3 years ago. So I suggest before you have surgery, try a Gluten free diet for 3 weeks and see if by the 3rd week you don't feel better. As for my diet, I am on a gluten free, dairy free, fat free, sugar free and as of today...almost salt free diet. I know you must be thinking what can she eat. Actually a number of things,mostly fresh fruit and veggies(lots of salads). Edunomie (soy beans) make great snacks. I drink boiled water 90% of the time. The only other thing I drink is Almond Milk in the morning, and sometimes caffeine free green tea at night.Caffeine and a lot of sugar ( like in soda drinks-coke, etc) also helped cause IBS in me. I'd suggest you try a gluten free, dairy free diet, caffeine free diet for few weeks and keep a food diary and see if that helps.I know this type of large switch in foods for most people is really hard, but trust me, it's better than the pain you'll go thru with surgery that may not even work. PS I also take a lot of vitamins and 1000K MSM (as an anti inflammatory) and curcumin daily. You won't be miraculously headed in 3 weeks, but you will have a very good idea if food and your bowel being inflamed is at the heart of you UC or IBS. It can take several months or years if you are very slow to adjust to a new diet,but it can be done. You've got nothing to loose if you try it and you could gain a great deal if it works for you.The up side is if you are heavy, you'll slim down..but I'd guess most of you are like me and fairly thin from the IBS, now 115lbs & 5'6" so I think I'm doing Ok now.
Posted 12/16/2011 6:17 AM (GMT -5)
Oh for got to mention in regard to Remicade, have you tried Cholestyremine? It's been around for years. It worked wonders for me and now I'm even off it. It not expensive and non addictive. Here in S. Ca it ran $33. for a 6 week supply (it's powder you mix with a bit of water). That sure was a lot nicer on my wallet than the $400. a month meds the Dr. had me on...that only worked for 2 weeks!
Posted 12/16/2011 9:19 AM (GMT -5)
 

I was in the same position as you in the spring of 2010.  I had developed antibodies to Remicade and my insurance company would not pay for Humira.  Doc told me that I was looking at surgery.  I searched everywhere for an alternative as I did not want surgery.  With the help of my GI doctor, I did find a treatment that was effective for me.  I have been off of all prescription drugs for over a year now and am doing better than ever.  I am back to work, no bleeding or pain.  My doctor did a colonoscopy and verified that I had no ulceration. 

 

Posted 12/16/2011 11:24 AM (GMT -5)
Scarecrow- What treatment is it that you are under now?

2Hawaii- Do you live in SoCal? I did Gluten free for a couple weeks and didn't notice a change. I'll be honest, I don't think I can modify my diet to no sugar on top of no gluten. Working long hours and having a demanding job is not easy without coffee, that I know induces my symptoms so I stay away from that. To take away all sugar as well, I don't know that I would be able to function or have energy to get through the day. On occasion I do have a soda and I don't notice any negative side effects from that. I do know what foods I have to stay away from.. Especially beer! You say you eat tons of salad but lettuce is definitely one thing my body has a hard time with.

Thank you for your posts! :) K
Posted 12/16/2011 11:40 AM (GMT -5)
Caligirl83-
I'm in the same situation as you are, except I can't take 6mp. My remicade infusion starts to wear off around 4-5 weeks after I get it. The GI is increasing the dosage from 5kg to 7.5kg for my next infusion. I've already moved up the frequency from 8 weeks to 6 weeks.
Part of me feels like surgery is inevitable at this point but another part of me wants to exhaust every option-(drugs, diet, fiber, herbs, etc)-before I make the decision to have my colon removed. It's a huge decision to have surgery and I don't blame you for being hesitant. I think you need to be mentally ready to undergo surgery and it's sounds like you are not there yet. My thought is that as long as I am able to function semi-normally and it's not drastically reducing my quality of life, I'm going to hold off on surgery to see if I can find the magic formula to get me into remission.
Posted 12/16/2011 11:43 AM (GMT -5)
Ultimately what I think hinders my decision to have surgery are the people that have chronic diarrhea with the J-pouch and still take a significant amount of Immodium. Or having multiple episodes to the bathroom. Currently, I only have those symptoms 6 weeks after my remicade infusion so 2 out of 8 weeks, I do NOT feel my best. But once I get my infusion I am good to go for another 6 weeks. Just not sure if being sick 2 weeks is worth the surgery if I end up being sicker everyday with UC symptoms.

I work in healthcare and 'scrub' sterile procedures with the physicians. Think 'Grays Anatomy' OR setting. This can also be a huge problem for my colitis. I can't just walk out of the room to use the restroom the moment I have an urge.

So now you may be asking, if you work in healthcare why are you here asking questions. The truth is colorectal is not my speciality as a professional nor do the doctors I work with know much about the disease or surgery. With that being said, thanks for all your replies and bits of advice and personal experiences!
Posted 12/16/2011 12:01 PM (GMT -5)
talking on the ostomy board with people who have had surgery would be useful. In two years, I've never gotten remission, but I am currently just living with a bit of D and occasional urgency - so bothered but functional. I might try other meds or new therapes, but I am not contemplating surgery right now. Durnign the worst periods, I did think about it. As for the question of buying time for what, it should be noted that there is a lot of work going on right now to figure out the immune system pathways in UC, and new treatments should be just a few years out.

I found this diary of one man's surgery to be informative: http://ucstory.wordpress.com/about/

good luck
Posted 12/16/2011 1:44 PM (GMT -5)
Caligirl,

I had jpouch surgery 11 years ago for UC and I don't have permanent diarrhea or do I take bowel slowers. My GI tried to talk me out of a jpouch for this very reason. I had surgery to get off prednisone and to get my life back. Fortunately Remicade wasn't yet on the market when I gave up drugs after trying 6MP. These past 11 years have been fantastic; surgery was the best decision in my case. I had my surgery in Los Angeles. There are some terrific surgeons in CA and my only recommendation is you pick the best surgeon, not necessarily the one closest to where you live. I live 2 hours from LA but after surgery never needed to see my surgeon again. That's why it's important to go to the best if you decide surgery is for you.

Sue
Posted 12/16/2011 3:05 PM (GMT -5)
Hi Caligirl,

I suffered with UC for almost 6 agonizing years (had it longer than that but officially diagnosed in 2005.) I went thru all the drugs with Remicade being my last resort. Everything failed. I tried diets and acupuncture with no luck either. I didn't want to have surgery (who does?) and I was really against it. Then one day I just woke up and I knew I could not go on living like I was. I have a family and I was too sick to care for my kids. I couldn't even drive them to school 5 minutes up the road without having an accident. I was so weak and bone thin I was starting to freak my friends and family out. I knew I had to do the surgery. I had no choice.

It was the best decision I ever could have made. I was sick for so long that I forgot what it's like to be normal again. This surgery had been a Godsend and I cannot believe what a difference it has made in my life. As scary as it is, it is a blessing. I can eat my favorite foods again, I can go out and not have to worry where the nearest bathroom is. No more nasty harmful drugs. I no longer look like the walking dead. I look like me again!

I really believe you just know when it's time and enough is enough. I just wanted to get back to living again and I have done that thanks to my J pouch. All the best to you with your decision. :)
Posted 12/16/2011 4:48 PM (GMT -5)
Caligirl,

If you want a consultation with a very good SD CR surgeon, contact Dr. Elisabeth McLemore at Scripps La Jolla. The phone number is 858-822-6173. I know someone who had jpouch surgery with Dr. Lemore and she raves about her.

Sue
Posted 12/16/2011 5:14 PM (GMT -5)

suebear said...
Caligirl,

If you want a consultation with a very good SD CR surgeon, contact Dr. Elisabeth McLemore at Scripps La Jolla. The phone number is 858-822-6173. I know someone who had jpouch surgery with Dr. Lemore and she raves about her.

Sue

Yes, the gal Sue is referring to who had her surgery done by this dr. cannot say enough great things about her. She also does the surgery robotically which is so cool. Very gifted surgeon and a wonderful human being too from what I have heard.
Posted 12/16/2011 6:14 PM (GMT -5)
DBwithUC-- Buying time in the sense that it is inevitable that I am going to need surgery eventually. I may be feeling 'ok' right now, but I am on a high dose of very toxic drugs that have negative side effects. Clearly, based on my colonoscopies I am NOT IN REMISSION & my doctor doesn't think I ever have been.. That is quite bothersome. So although my colitis is not in remission I am still able to function. Sure, thats great and maybe better than having surgery but what else is going on in my body due to these toxic drugs that are not making me 100% well. These drugs are hard on your kidneys, liver & skin. A co-workers sister-in-law was on remicade for other reasons, for only a year and developed a tumor. Also, the major eye opener for me was when my doctor said I was not well enough to get pregnant.. I am only 28 years old, so that is very bothersome. I want to be a mother someday and that will never be an option as long as my colitis carries on like this.

Marianne & Sue- I live in San Diego so I will definitely check out your recommendation. Also, who was your physician in LA? I want to have my surgery while I am well so that I don't run into more risks or complications if I wait till its too late and I don't have a choice. Thank you for your input on this.. All these posts have been so helpful and encouraging for me.

Indycat23-

You were just diagnosed with UC this year and you are already on a strong regiment of meds. My focus would be to get well and get in the best shape you can and plan for surgery. It took me three years before I had to resort to Remicade. I surly have had my phone with prednsione and I never want to see those days again. The sicker you are when you go in for surgery the more likely you are to have a long recovery and experience pouchitis. I know I am going to have my surgery in a couple months, but like any normal person I am nervous about it. If there is anything I can help you with or any questions please ask away. It seems like we have had a similar history with UC.
Posted 12/16/2011 6:34 PM (GMT -5)
I just wanted to add : For those of you who are "putting off the inevitable" let me just add my two cents. Just do it and have surgery! Don't waste anymore precious time to this awful disease. I wish I had done it a lot sooner but you know the saying: Hindsight is 20/20. Of course I am saying this to the people who really need surgery. . . .not the people who can control their UC. I don't want to get bombarded with "you are a surgery pusher". I am just speaking from experience on how life can be without UC and it's wonderful! Best of luck to all who are in this predicament right now.
Posted 12/16/2011 7:50 PM (GMT -5)
its purely your decision however there are hundreds of alternative therapies that people swear by. i personally think nothing is worse than having them remove your colon as there is much hope for better treatments as early as 2013 from a french drug company. i would exhaust all of my options first. i too am on alot of meds but i only have about 2-3 bms a day so i am not as bad but i was much worse before. i held out and let myself heal. i would try alternative therapy and save the surgery for emergency situations. try scd diet, probiotics, enemas, supplements, fecal transplant, LDN, etc.
Posted 12/16/2011 9:03 PM (GMT -5)
Mikey- When were you diagnosed with UC? You are on an awful lot of medicines all at one time! How to you keep up with that kind of schedule... Do you have neg. side effects from the combination of drugs? I too, only have 2 or maybe 3 bm's a day when my remicade is working accordingly. Thats why its hard for me to decide if NOW is the right time for surgery. New medications come out all the time. There was a time when remicade didn't exist and maybe before it was released they thought it would be the UC cure. Waiting another 2 years may jeopardize the rest of my health and now properly functioning organs. Do you kind of agree with that or do you think the benefit of waiting outweighs the risks involved with steroids and remicade?
Posted 12/17/2011 2:47 AM (GMT -5)
My surgeon was Dr. Robert Heart now at Glendale Memorial Hospital.

Sue
Posted 12/17/2011 10:41 PM (GMT -5)
I am on the verge too, but I am still worried about chrohns, thatbis what is getting me, even though my GI is 90 percent sure no. I don't know why I feel this way. I stopped 6 mp and wonder if thet was controlling some upper GI stuff, though not the colon.
Posted 12/17/2011 11:43 PM (GMT -5)
If you are sick enough for surgery, it does not matter if it is crohn's or uc.

Sue
Posted 12/18/2011 1:37 AM (GMT -5)
That is not thebimpression I get. I don't think with chrohns they are so quick to remove the entire colon in case you end up with small bowel and need resection there also. That is why they need o know as much as they can. Also mentally I would prefer to be way more positive than I feel now going into surgery, that it will be the end to medication, except perhaps antibiotics for pouchitiis
Posted 12/18/2011 8:06 AM (GMT -5)
Caligirl83,

How about giving LDN - low dose naltrexone - a try before surgery?

Many on this forum have found it very successful.

Do some research on LDN - low dose naltrexone, you can search this forum as they are several threads on this. I can tell you it works! Here's the Penn State research done by Dr. Jill Smith with LDN and Crohns Patients.
http://www.ncbi.nlm.nih.gov/pubmed/21380937

https://www.healingwell.com/community/default.aspx?f=38&m=2204683#m2222188, https://www.healingwell.com/community/default.aspx?f=38&m=2129791&p=1

 

What do you think?


Posted 12/18/2011 8:42 AM (GMT -5)
Cali I have consulted with 2 surgeons and there percentage of good outcome is pretty high except I was told 30% do get pouchitis, which requires cipro. Told only 2% develop chrohns afterwards, which gives me good odds but I feel so unlucky
Posted 12/18/2011 8:46 AM (GMT -5)
beatUC,

Thanks for sharing beatUC. I agree with you 100%.

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