My breaking point

I'm just throwing this out here because I asked about surgery when I was diagnosed, and I got a surprising answer from my GI.

He said no doctor would touch me unless I had toxic megacolon or my UC couldn't be treated, due to my age and gender. Has anyone heard of that? I know that surgery may damage fallopian tubes, therefore making conception difficult but not impossible. I'm curious if anyone had that response before.

This may relate to your case Bost, or it may not.

Sibby:

One thing I learned is you can't speak to a GI doctor about surgery. You need to speak to a colorectal surgeon ( a really good colorectal surgeon!) and you will get much more informed answers. It can be difficult to concieve after surgery b/c of scar tissue but it has been done.

bostwis1 said...
As far as fertility, this is something I will inquire about with the surgeon because I do want children. Laproscopic surgery diminishes scar tissue so I am guessing it helps with fertility.

I'm certain I read about this issue last night while browsing Mayo Clinic's website. I think you're correct.

All the best to you.

Sibby said...


Could someone explain what they would do in a laproscopic surgery? I understand the basics of it, but I just want to be sure on it.

Laproscopic surgery is so called minimally invasive surgery; i.e. they use a few tiny holes to go in and do their magic. It's sometimes called keyhole surgery. Heals faster, etc.

Hope this helps.

http://www.mayoclinic.org/colon-cancer/minimallyinvasivesurgery.html?mc_id=comlinkpilot&placement=bottom

" Minimally Invasive (Laparoscopic) Surgery for Colon Cancer

Physicians at Mayo Clinic have been at the forefront of the study and use of minimally invasive (laparoscopic) surgery for colon cancer since the technique was introduced in 1991. Mayo Clinic surgeons have performed more than 1,000 minimally invasive surgeries to remove cancerous portions of the colon. "

Here is a site I read that gives some information and images of what to expect with surgery:

http://ucstory.wordpress.com/

I definitely recommend you check it out.

*the site seems very slow right now but try later if you can!

Sibby- it is interesting what your GI said. Some of them seem so against surgery. When I was in the hospital with a severe flare and declining rapidly, I was given the Remicade or surgery option... though the GIs were heavily pushing the Remicade. I decided at that point that I did not want a lifetime of Remicade infusions. I still tried one to at least get out of the hospital, as I was really really sick and way too weak for an operation. Still, I was quite sure I wanted surgery once I healed up a bit. I was done with the UC roller coaster ride and just wanted to get rid of my diseased colon and move on with my life. As it turned out, that first infusion of Remicade ended my flare within 5 days. Because of this, a couple of the hospital GIs told me that I might not find a surgeon who would agree to do surgery since the Remicade had "worked". A few days later, I developed excruciating joint pain from the drug. I mean, jump off a bridge kind of pain. Because of what the GIs said, I lived in fear for two weeks until my surgery consult thinking the surgeon wouldn't do a surgery and that I would have to live with that horrendous Remicade-induced pain. Fortunately, the surgeon was completely reasonable and never once considered not doing my permanent ileostomy (which I chose over a j-pouch) surgery when he heard what I had been going through. Fortunately also, the pain from the drug went away once it left my system.

bostwis1- Speaking of camping, I am back to hiking and backpacking after surgery and I feel amazing. It gave me my life back! You can read about my post-surgery adventures at my blog which is listed in my profile.

Hi bostwis1,

I had to go so often I had to get a cream to apply for the rectal pain. I am curious why you haven't replied to InSoFla about her question on LDN. I notice that no one else on the is post has tried LDN. I can not imagine a worse case than I had (I am sure we all feel this way). I was on prednisone and had to lay down at work and just use the phone for business for months. I was at my end, surgery was sounding great. I was blessed to be led to trying this. Results beyond any imagined outcome. Costs me $26 per month. It took 6 weeks. I have not read any downside other than filler materials that people may have allergies to or it not working for some (which is no different than traditional meds). I notice also that you are a nursing student.

LDN is not in the mainstream but was prescribed to me by an MD, Dr. Sam Benjamin in Scottsdale, AZ. I have seen posts where MD's refuse to prescribe LDN. My GI was not even aware of it's existence. Is there some reason you have not shared concerning LDN and any harmful effects you are aware of? I know it has not worked for everyone but I also feel that a lot of disease is lumped into UC and thus the varying results for so many via: traditional meds, diet, LDN, fecal implants, surgery etc.

Post Edited (colgone1) : 7/8/2011 1:40:29 PM (GMT-6)

     I haven't read all the posts on this question, but I can say I have walked in your shoes.  I was prednisone dependent for two years prior to surgery.  Every time I got down to 15 mgm or so....boom...flare.  At the time of my surgery, total colectomy with end ileostomy last June 28th, I was on 20 mgm of prednisone.  I was hoping to be off the drug by then but my surgeon said he would rather me be on it than be in a flare at the time of my operation.  They kept me at 20 mgm while in the hospital (11 days because of a few complications), then a 5 mgm per week taper until I was finally off it completely by August...yippeeee !!!  Sure don't miss it either .

     LDN is one drug my GI never even mentioned to me.  Worth a shot I would say.  I was on Colazal, prednisone, 6MP, finally Remicade and then Humira....no improvement.

     My surgeon would not do a j-pouch because of my age (63 at time of operation), extensive prednisone use and other health issues.  I have no problem with the bag.  I have my life back.  However, if I were younger and thought something else would help...heck go for it!

Okay, we've tried transdermal LDN for my daughter with not result at all. For months. Like everything, give it a try if you're inclined but please remember it's not a guaranteed cure.
Sibby, it depends on which surgery. My daughter is very young and one of the reservations about surgery on the part of her GI is also reduced fertility. But, that's only with J pouch not ostomy surgery and many women with Jpouches do conceive (according to the stats our GI gave us).
To the OP, I wish you all the best in your healing. You must feel very relieved with your decisions. If I were you (it's not me with UC but my child) I'd go for surgery and never think twice about it. Unfortunately for me at least, it's much harder to make this decision for her.

Thank you ByeByeUC, Blueheron, killcolitis and summerstorm for the responses.

I've done research on fertility and surgery, and I've read that women who have the internal jpouch (can't remember the medical term right now) they were able to have children. Depending on the surgery and possible damage, it may be difficult to conceive. But I've read stories of women on here with children after the surgery. So that is encouraging.

If I was at that stage then I would opt for internal. Reason being is that I prefer my human bits inside, no pun intended.

Byebye, I'm glad you had that kind of surgery! How did that work for you?


I need to remind myself that there are other options, like LDN and FT. But I need to base my decision on harder facts. I've read both threads carefully over the last few months, and I would prefer to consider them at a later date when there is a broader and larger positive outcome. Researchers may be testing these therapies out, which is wonderful, but I want to see the patient list expand to something larger than a few hundred.

Even with FT, it might need to be more tested. But this is my opinion though. FT is successful in C. Diff because it's a bacterial infection. UC is not. However, I've seen people on here who are not on medication and have no inflammation after the procedure.

Currently Imuran is working well for me. I'm soon introducing 5ASA's to see if I can get off this.


I'm curious, what surgery would people have if they were at the stage in their UC?

And how are you Bostwis?

bostwis1- you sound like I did before surgery. I knew I was done with meds. You get to a point where you just know what is right for you and it is difficult to justify your choices to other people. That is because it is a decision that is based so much on personal values and what you want out of life... things that you know best and that are difficult to explain to others. In my case, I really wanted a permanent ileostomy... which was especially surprising to other people. I followed that little voice in my head that told me that this surgery would be the key back to the life I wanted and stuck to my decision steadfastly. I have not been disappointed and have absolutely no regrets. I actually get pretty teary-eyed when I think of where I might be right now without surgery. Because of surgery, I have gotten everything back that I almost lost... my health, my career and all the things in life that I love to do. You will to.

Update:

I've been talking to my GI's son. It looks like my GI is never coming back. He wants me to meet with him to discuss taking Imuran with Humira. No thanks! I rather not have a colon than no immune system. The nurse tried to tell me how terrible surgery is and how miserable I would be. Lets poison my body with drugs instead. This is going to be a fun appointment with him in August.