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My colonoscopy results (surgery or meds?)

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Posted 8/7/2012 6:39 PM (GMT -6)
Just had my scope today. apparently my UC is now in 3/4 of my colon. My GI didin't expect it to be that bad. He mentioned that when the wall of my colon was lightly touch I would bleed. I still got to get the biopsy report, but the main focus of his conversation was on surgery.

I've only been on the level 1 drugs... mesalamine, Prednisone, and Budesonide

His point was to have the surgery while I'm young and healthy enough to recover. I know things get touchy when you get older...but do I risk surgery or keep trying the meds? My next choice would be 6mp....and of course there's the issue with side effects too. I had my first experience with one time pancreatic from the mesalamines. I am very sensitive to the mesalamines to begin with. The next level the type of side effects get worst.

What are your thoughts on keeping with the meds or having surgery?
Posted 8/7/2012 6:46 PM (GMT -6)
Have you tried any type of lifestyle changes focusing on diet....SCD, Gaps or Paleo? What kind of surgery would you be getting....J Pouch?

Personally I couldn't mentally handle the effect of the drugs/steroids and I'd get the surgery if it came down to it and I could have a J Pouch.
Posted 8/7/2012 6:46 PM (GMT -6)
Personally, I'd try more meds before I'd have surgery, but that's totally your call. If I were in a really severe flare, I might be tempted to go to Remicade before trying 6MP or Imuran, as I know they can take a while to kick in, and depending on how sick I was, I might not have the patience.

As for not being able to take mesalamine, and being worried about not tolerating the other meds, I think Sherry is a good example here. She's intolerant to mesalamine, but did fine with 6MP/Imuran (I can't remember which she used) and Remicade.
Posted 8/8/2012 4:58 AM (GMT -6)
Well I'm going to say surgery since I've had it done and know what its like to be be rid of UC and the drugs for good. All I can say is I wish I didn't wait so long messing around with all those drugs but hindsight is 20/20. Life without UC is pretty awesome.

Good luck with your decsision....I know first hand what a tough one it is to make.
Posted 8/8/2012 5:03 AM (GMT -6)
IMO, you should give probiotics, diet modification and LDN a try before doing something irreversible.
Posted 8/8/2012 7:13 AM (GMT -6)
Surgery is no walk in the park & 40% of people need additional surgery because of complications.
After surgery you're still having 10-20 bms a day. I'd try anything and everything before considering surgery.
Posted 8/8/2012 7:25 AM (GMT -6)

beatUC said...
Surgery is no walk in the park & 40% of people need additional surgery because of complications.
After surgery you're still having 10-20 bms a day. I'd try anything and everything before considering surgery.

I would like to see proof of the 40% that need additional surgery....can you provide that please?

The real average amount of bm's after surgery (and after recovery) is 4 to 6x a day...perhaps 8 depending on the person. No urgency and you are not sick anymore.

Yes, it's very true that surgery and it's recovery is no walk in the park but it's such a small blip on the radar map compared to the rest of your life dealing with a chronic illness. 4 months for me start to finish and I was done with UC forever.
Posted 8/8/2012 7:51 AM (GMT -6)
I'm slightly past the point where you are currently - I've recently decided on surgery but haven't had it yet. I would recommend doing a google search on jpouch and ostomy and finding people's blogs to see what their lives are like. Also, listen to people on this board who have had surgery (like ByeByeUC and I think Suebear is another person I see mentioned). Also, go to jpouch.org. Keep in mind that's a support group for people who are having problems, so the problems are a bit over represented. The people with successful surgeries are out living their lives! Don't let fear drive your decisions. If, based on what you are reading, that your quality of life would be improved with surgery then you might want to consider it. In addition, having surgery well you are relatively "healthy", in control of choosing your surgeon, and having the surgery young are definite advantages.

The choice to use more meds is a very personal one. Are you doing ok on your current medication (and by "ok" I don't mean symptom free but are you able to live your life?). If you are doing relatively ok, then you have time to experiment if you want - with diet and alternative treatments in particular if that's a route you want to try.

I've been doing alot of research on the different medications that are out there to combat UC (as in looking at peer reviewed journal articles). The most "successful" med does seem to be 6mp and azathioprine. By successful I mean that many people respond to it. I did not react well to azathioprine and my GI did suggest 6MP as a potential replacement, but I didn't want to potentially mess with my pancreas/liver and cause any further problems in the future. Fewer UC patients respond to Remicade (I think it's like 50% remission) and even fewer respond to Humira. Also, Remicade seems to have a treatment life of a few years before it becomes ineffective. If something works for you, you have to remember that you will be on it for a long time - so you need to balance out the potential side effects.

You will see other people mention LDN (low dose natroxen I believe?). The two published research articles on that show good success (80%), however the authors now have a conflict of interest in that they have applied for a patent for using LDN with IBD. In addition, it is a fringe treatment. The advantage with LDN is very few side effects.

I'm personally having surgery sooner rather than later. One big driver in my choice not to experiment anymore (with drugs, diet, etc.) - is that prednisone is loosing it's effectiveness for me. I don't want to end up in horrible health facing surgery or in an emergency. Plus, I've been through a few more treatments than you have.
Posted 8/8/2012 8:43 AM (GMT -6)
peaceandharmony, definitely keep trying meds!! you never know which one could be your silver lining.

after i woke up from my colonoscopy last week, all my GI wanted to talk about was surgery! i was so annoyed because i haven't tried humira or cimzia or any experimental drugs out there. i even saw my nurse yesterday and she says "so your doctor says you want the surgery right away?" i said "heck no!! that's what HE wants." so she is the one who gave me a script for 6mp again to see if it can help. definitely don't let a stupid GI bully you into surgery when you still have other options.
Posted 8/8/2012 9:59 AM (GMT -6)
Bananagirl brings up a valid point. Don't let your GI doctor push you toward surgery or a drug you are not comfortable with for that matter. Some of them can be very pushy. It's your descision and yours only. I was fortunate to have a GI doc that worked with me every step of the way and was supportive. And there is absoutely nothing wrong wrong with skipping the drugs...it's all a matter of what you are comfortable with. I will add that I tried a few more of the drugs that you have not tried yet before I decided to have surgery. Keep in mind it takes 6 mp a good 6 months to really kick in if it works.
Posted 8/8/2012 10:46 AM (GMT -6)
I would see about getting into a trial for one of the several new drugs in the pipeline. MDX-1100 or one of the new biologics. It does sound like your UC is spreading with only 1st-level treatment.

I am really fearful of 6mp and immunosuppresants too. I think the risks are fairly small, and reversible. I just do not feel lucky. But, you could try for 6 months and see.
Posted 8/8/2012 12:39 PM (GMT -6)
I would give 6mp or azathioprine a try. I used those and had an almost 5-6 year remission. It took about 3 months to kick in for me. I have bloodwork every 3 months to monitor my cbc. Besides some fatigue (but heck that could be the UC in general) I never had any side effects.
Posted 8/8/2012 7:28 PM (GMT -6)

ItsAlwaysSomething said...
IMO, you should give probiotics, diet modification and LDN a try before doing something irreversible.

Did that, Done that....did nothing for me :(
Posted 8/8/2012 7:40 PM (GMT -6)
I've been on Pred for over a year. and it wasn't very effective at 40mg....was on for 5 weeks and was told to taper due to safety reasons. Mesalamines only worked up to a point and I already experience the effects of an inflamed pancreas due to them too! (PAINFUL...and I have a mild case!)

Right now I just want to get into remission and try and save up some sick days so I can do 4 months off for this. I'm sure it's no walk in the park, but it's doable. I haven't seen any stats on the surgery. If I do go that way I wouldn't get the J-pouch...one surgery is enough and I seem to be pron to rectal inflammation and they use mesalamines to treat it which doesn't work for me down there.

If I get it done I'll probably go to Mayo Clinic. I want a surgeon who has a good track record. Best to get it out when you're at the healthiness so you can recover with less complications. I feel all I'm doing is putting off surgery with the meds. It's been a rough 2 years!
Posted 8/8/2012 8:42 PM (GMT -6)
I struggled with UC for four years and nothing really helped for long. I was steroid dependent, I got severe anemia, I did try Remicade infusions and they provided some relief, but stopped lasting as long and I didn't want to keep upping the frequency. I fought hard against surgery, in part because of what I had read here on the boards. Spoke to my GI about my concerns and he did say that people not doing well tend to be a lot more vocal than people who are doing well -- the people doing well are off living their lives and not reading and posting on forums devoted to illness.

So I consulted with a surgeon and decided to go for it. It was a grueling surgery and a long recovery but I feel fantastic. I don't go to the bathroom 10-20 times a day. I don't really keep track to tell the truth. Mostly my BMs tend to be soft or even liquid, but I have control and can hold it in for as long as I need to, without discomfort. Sometimes I manage to eat just the right things and actually have an honest to goodness formed poop just like a "normal" person. For the first couple of years I tended to dehydrate easily, and while I am still careful to stay hydrated, I think it's not as bad as it was. I used to end up in the ER if I got sick, needing to be have IV fluids, but that was only the first year.

Honestly, my only regret is waiting so long and letting myself become nearly housebound because of my darn colon. Life is so much better without it. My j-pouch functions perfectly. I can eat pretty much anything I want. Some things do come out pretty much as they went in. I have had no complications, no blockages and my surgeon assured me that the vast majority of people sail through. I have been in touch with people who have had a rougher ride than I did and even they assured me that once they made it through the complications they are still satisfied with their outcomes even if they did have a rougher recovery period. I am now active and out and about -- I go kayaking and paddle boarding and hiking -- all things I couldn't do due to needing a bathroom in the immediate vicinity. I couldn't even go food shopping at times because I knew I wouldn't make it to the back of the store in time!

The three months between surgeries with the loop ileostomy SUCKED but the folks I knew of who had complications had surgeons that did their takedowns much sooner or did the surgery in one step. I highly recommend three full months between surgeries. The takedown was a piece of cake.

Consult with a surgeon before ruling out surgery. Don't hang on to a broken colon that is trying to detroy your health. The medications are strong and they really don't know the long term effects of Remicade, it's still pretty new and if you go on it and don't have surgery you are on it for LIFE. Good luck if you lose your insurance, it's $6K an infusion.

Meesh
Posted 8/8/2012 8:59 PM (GMT -6)

Meesh said...
I struggled with UC for four years and nothing really helped for long. I was steroid dependent, I got severe anemia, I did try Remicade infusions and they provided some relief, but stopped lasting as long and I didn't want to keep upping the frequency. I fought hard against surgery, in part because of what I had read here on the boards. Spoke to my GI about my concerns and he did say that people not doing well tend to be a lot more vocal than people who are doing well -- the people doing well are off living their lives and not reading and posting on forums devoted to illness.

So I consulted with a surgeon and decided to go for it. It was a grueling surgery and a long recovery but I feel fantastic. I don't go to the bathroom 10-20 times a day. I don't really keep track to tell the truth. Mostly my BMs tend to be soft or even liquid, but I have control and can hold it in for as long as I need to, without discomfort. Sometimes I manage to eat just the right things and actually have an honest to goodness formed poop just like a "normal" person. For the first couple of years I tended to dehydrate easily, and while I am still careful to stay hydrated, I think it's not as bad as it was. I used to end up in the ER if I got sick, needing to be have IV fluids, but that was only the first year.

Honestly, my only regret is waiting so long and letting myself become nearly housebound because of my darn colon. Life is so much better without it. My j-pouch functions perfectly. I can eat pretty much anything I want. Some things do come out pretty much as they went in. I have had no complications, no blockages and my surgeon assured me that the vast majority of people sail through. I have been in touch with people who have had a rougher ride than I did and even they assured me that once they made it through the complications they are still satisfied with their outcomes even if they did have a rougher recovery period. I am now active and out and about -- I go kayaking and paddle boarding and hiking -- all things I couldn't do due to needing a bathroom in the immediate vicinity. I couldn't even go food shopping at times because I knew I wouldn't make it to the back of the store in time!

The three months between surgeries with the loop ileostomy SUCKED but the folks I knew of who had complications had surgeons that did their takedowns much sooner or did the surgery in one step. I highly recommend three full months between surgeries. The takedown was a piece of cake.

Consult with a surgeon before ruling out surgery. Don't hang on to a broken colon that is trying to detroy your health. The medications are strong and they really don't know the long term effects of Remicade, it's still pretty new and if you go on it and don't have surgery you are on it for LIFE. Good luck if you lose your insurance, it's $6K an infusion.

Meesh

I like to read good ending stories. I think the important part is to feel and be healthy in any way possible with or without the colon.
Posted 8/8/2012 9:22 PM (GMT -6)
Would you consider triple antibiotic therapy? I would if I were in your shoes but actually, I was in your shoes a while back. My colon bled when touched and I was having a pancolitis flare. I wasn't able to get it under control with pred and mesalamines and I ended up starting 6mp. I haven't had too many side effects from the medication other than having my WBC drop too low on a few occasions. I really didn't want to take 6mp but I had no choice and, really, at this point, I am happy I made the decision to try it. It has been wwell over a year and I've been feeling quite stable. I can understand wanting to have surgery while you're younger but it's possible you will find a treatment that works for you. I think surgery is a great option if you aren't able to find anything but I can't imagine committing to 6BMs a day if it's not 100% necessary.
Posted 8/9/2012 7:56 AM (GMT -6)
I know that it's really hard for people who have their colon to understand "committing to 6 BMs a day". But, really, it's not like that. Do you say that about going pee? We are supposed to go pee that many times and we don't make a big deal about that. When I sit down to pee, I usually poop. No big deal. It's hard for people with UC to understand that because having 6-8 BMs a day with UC is awful. Painful, urgent, etc. It's not like that. No urgency, no pain, it just comes out. A lot of times I think I just have to pee, but then I go poop, too. Believe me, I had the same thought process before the surgery, I just couldn't imagine, but it's really not that way.

For me, I just knew when it was time to get it done. I felt like it was inevitable so why not do it when I was still young enough to have the j-pouch surgery and enjoy my kids and family. I was tired of feeling crappy from all the drugs and from this awful disease. I was tired of the not knowing. Not knowing if I would be in a flare tomorrow, when my flare would end (if ever), what the drugs would do to me, etc., etc.

It's a hard decision. Do your homework and talk to a very experienced j-pouch surgeon. I got mine at the Cleveland Clinic, done lapro. I have a few little scars that I kind of like now. Good luck.
Posted 8/9/2012 10:34 AM (GMT -6)

Disneynut66 said...
I know that it's really hard for people who have their colon to understand "committing to 6 BMs a day". But, really, it's not like that. Do you say that about going pee? We are supposed to go pee that many times and we don't make a big deal about that. When I sit down to pee, I usually poop. No big deal. It's hard for people with UC to understand that because having 6-8 BMs a day with UC is awful. Painful, urgent, etc. It's not like that. No urgency, no pain, it just comes out. A lot of times I think I just have to pee, but then I go poop, too. Believe me, I had the same thought process before the surgery, I just couldn't imagine, but it's really not that way.

I am glad you posted this Disneynut to try and explain. It's important for people reading these posts and considering j pouch surgery to know that the 6x a day isn't like going 6x a day with UC. It really isn't a big deal but I get why it's hard to understand. I wasn't convinced either until after the surgeries were done and experienced it for myself. Most days I only go 4x and I pee more than that! My hubby has a healthy colon and he goes 3x a day. Heck, I would happily poop 10x a day with no urgency and not be sick with UC anymore.
Posted 8/9/2012 12:46 PM (GMT -6)
Nobody with UC understands the jpouch frequency-thing! Just bang your head on a table, it's far more effective than trying to explain it. Glad to see you back Disneynut; you must be out enjoying life as I don't see much of you around.

Sue
Posted 8/9/2012 1:26 PM (GMT -6)

suebear said...
Nobody with UC understands the jpouch frequency-thing! Just bang your head on a table, it's far more effective than trying to explain it. Glad to see you back Disneynut; you must be out enjoying life as I don't see much of you around.

Sue

Hahaha Sue...I know...this is true about the head banging. Hope you had a nice trip...welcome back. :)
Posted 8/9/2012 7:30 PM (GMT -6)
Thanks everyone for all you're replies. This has been very helpful :)

I need time to search for a surgeon and want to at least try one of the BIG blasts of meds to see if it can get rid of some of this pain. I definitely need to get off steroids so I am considering Cimzia, Humira, and Remicade...then 6mp for maint.
are there any others I'm missing? It would be nice to have a full list of treatment options at your finger tips.

as for surgery..I've been asking friends and family for referrals. Went through a lot of doctors over the 2 years and found out I do better with personal referrals....and I don't mind traveling. Would prefer to be close to family and friends. Most of them are in either Philly or Pittsburgh, PA. Does anyone here have any recommendations? If so please email me. I have my email posted in my profile.

thxs!
Posted 8/9/2012 7:51 PM (GMT -6)
peaceandharmony, i am meeting with a surgeon in pittsburgh (that's where i'm from) on sept 7. his name is dr. medich and he is at upmc presby. i will let you know how he is! apparently, he's one of the best in the city and my GI says he'd recommend him to anyone (also heard he's very funny and makes you feel comfortable). i read a lot of reviews of him on doctor rating websites.
Posted 8/9/2012 9:09 PM (GMT -6)
I have anxiety about pooping in general when I am in public places. The thought of doing it everytime I pee scares me. I understand that it's not the same as a standard poop or a UC poop (thank goodness) but it's still using the toilet more times than I am comfortable with. Of course if it's UC or toilet 6x a day, sure, I will take 6x a day but right now I only go #2 once a day. I feel like i've only been into the bathroom 4x today. It's a good day when I escape using a public toilet.
Posted 8/10/2012 5:33 AM (GMT -6)

Peace&Harmony said...
Thanks everyone for all you're replies. This has been very helpful :)

I need time to search for a surgeon and want to at least try one of the BIG blasts of meds to see if it can get rid of some of this pain. I definitely need to get off steroids so I am considering Cimzia, Humira, and Remicade...then 6mp for maint.
are there any others I'm missing? It would be nice to have a full list of treatment options at your finger tips.

as for surgery..I've been asking friends and family for referrals. Went through a lot of doctors over the 2 years and found out I do better with personal referrals....and I don't mind traveling. Would prefer to be close to family and friends. Most of them are in either Philly or Pittsburgh, PA. Does anyone here have any recommendations? If so please email me. I have my email posted in my profile.

thxs!

I had my j pouch surgery done at Jefferson University Hospital in Philadelphia. My surgeon was Dr. Scott Goldstein. He did an excellent job and I was really impressed with hospital and the staff. I know you mentioned in a earlier post that you wouldn't get a j pouch but if you are researching, it doesn't hurt to find out all your options. Obviously getting an colectomy and a permanent ileostomy is a much less complicated procedure.
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