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I think I want a colectomy?

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Posted 5/16/2008 11:23 PM (GMT 0)
Ok, I need some honest advice- perhaps the ostomy board in the better place to ask this but I feel more comfortable with you guys since I’ve lived at this board.

I’m 23, soon to be 24 years old and I officially got Crohn’s when I was 18, but I remember the first time I had that pain…I was 10. I’ve been plagued my whole life with pooing issues Anyway, I was in remission and med-less for a couple of years but about two years ago, the stress of my move to university caused a major flare with a fissure and development of a fistula and skin tags. I have been dealing with the tags and fistula ever since. I’m on Humira right now which seems to work well as along as I don’t stress out too badly (something which I’m doing right now because I’m just about done with school). The fistula is draining like crazy and it hurts to go and I have no energy and I’m really a mess.

For years now I’ve been saying that if I could go the rest of my life without ever having to use my anus again, my life would be puppies. The location of my crohn’s is the last 3cm of the rectum. As far as I know, this means that colectomy is my only option surgery-wise.

I think it sounds amazing. At the moment I could think of nothing better than to have an ostomy and not have to poop conventionally ever again. I’m sure I’m romanticizing it because the grass on my side looks so brown, but that’s where you folks come in! Help me out here- what are the down sides of a bag? I’m seriously going to ask my GI next time I see him but in the mean time… please help me.

Something I remember from the very first CCFA conference I went to was a couple of women who had had ostomies as a result of their IBD and they talked about how wonderful it was and how it was the best decision they ever made. I would like to feel like this. Any advice you can give on the subject would be grand.
Posted 5/16/2008 11:26 PM (GMT 0)
Laurenne, I have UC and am not completely up on Crohn's info. I do know that one of the differences is that ulcerative colitis is, by definition, confined to the colon and can be cured by colectomy (which of course comes with its own issues.) Crohn's, however, can show up anywhere in the GI system, so you can't really count on colectomy making it go away forever, if I'm not mistaken.
Posted 5/17/2008 2:49 AM (GMT 0)
I'm in a similar spot right now. I had my third Tysabri infusion today, so I have to wait to see how that does, but after 2 months on Tysabri, I am thinking it's not worth the risk. I've been lurking on the ostomy board and they have a great thread over there titled "Little Things". It's all about the little reasons why they are thankful that they had the surgery. There is another thread about meeting with the surgeon that contains insight.

I have scheduled with two GIs (my current and the last one I had, but left for clinical trials) and my surgeon to help me make the decision. A bag scares the heck out of me, but living the rest of my life this way scares me more!

Best wishes!
Posted 5/17/2008 3:26 AM (GMT 0)
The question remains for CD patients though. The disease can show up in the small intestine and then you're back to square 1. For those with UC, colectomy is a cure, not so for CD. OF course there can still be benefits to colectomies for CD patients but it's a tougher decision for us, I think.
Posted 5/17/2008 4:15 AM (GMT 0)
not creative :)

Have you/are you currently on any rectal meds at all? I have crohns-colitis and have often suffered with proctitis (inflammation of the rectom) on and off over my many yrs (17 now) and rectal meds have been a life saver for me all those times...I've been on cortifoam (steroid rectal med) for as long as a yr before tappering off to get my proctitis under control...surgery is always considered a last resort and with having crohns, wearing a bag is no guarantee, yes it still may be somewhat easier to maintain an easier life-style but many CDers that have a bag still have to take oral meds regularly because of their CD affecting their small intestines as well.

Of course it's your choice and you'd be supported which ever way you choose, but don't limit your options...there's enough rectal meds out there to try and see which may work for you, you may have to be on them for a long time before you can get your proctitis under control (out of a flare) but it might be worth it to save your colon/rectom...

Remicade is suppose to be a huge help with fistulas as well and may be a better option than Humira for you...along with rectal meds...something to consider besides surgery if you haven't already.

You don't mention taking probiotics...those have been a huge help for myself and many others as well, so regardless of your decision I highly recommend a good probiotic daily and indefinitely (I take a great one called primadophilus reuteri made by natures way, it's both affordable and effective and only one/day is needed.



:)

Posted 5/17/2008 5:18 AM (GMT 0)
Oh, I definitely know that CD has a chance of coming back, but would removing the diseased portion now make those chances any greater!? Would my body take revenge on me?

My uncle had a resection a few years ago- maybe 4 or 5- and is still doing well, with no return. I guess my question is: what makes it more likely to return post-colectomy than it would to simply appear in another spot, especially if they keep stressing a tenuous genetic link?
Posted 5/17/2008 5:21 AM (GMT 0)
But have you/are you taking rectal meds for your proctitis...and are you taking probioitics?

:)
Posted 5/17/2008 5:23 AM (GMT 0)
PB4:

I only use Prep H on and off. I had a doc prescribe proctofoam once but it is generally so uncomfortable for me to have anything inserted into my anus (I'm not sure if it's beyond "normal" uncomfortableness, but it sure is really difficult for me to allow someone else to do and impossible to do myself) that I pretty much never used it.
I've been looking at probiotics for a while now, I guess I just don't have the money for most of them, but I will look into the one you suggested.

I know the Humira is supposed to help with the fistula but with my crazy stress over midterms, my body took it out on me with pain and constant draining (I should buy stock in Always Clean Pads!!) Now that I've realized it was that stress that made me so bad, I'm taking Ativan daily and doing my best to keep my stress levels low (SO impossible with the end of my BA looming and a wedding soon). I think the Humira may have been starting to help previous to this crevasse I seem to have fallen in to. I'm hoping that it will continue to improve soon.

I'm just so annoyed that there isn't some sort of easy fix....this is me being bratty, but still. I feel like I've been thru enough for 24 years and then some!
Posted 5/17/2008 5:45 AM (GMT 0)
Oh Hun, You have to get some rectal meds in there, believe me I know about anal pain I have many severe perianal crohns skin tags, you can use lidocane gel it'll numb the area...get rectal meds in there, it will get better and you'll have a better chance of not having to get surgery.

I know remicade is suppose to aid greatly with fistulas but I'm not sure about humira.

I was 23 turning 24 when I got sick (17 yrs ago now) I spent the first yr filling the tub with water every time (30+ times a day) just to poop in the tub because of the excrutiating pain I was in, I've not had a fistula thankfully but the perianal tags have been horrid, which is why I had to fill the tub to evacuate myself...it can get better, try the lidocane gel with the rectal meds, ask for cortifoam, being a steroid med it'll work quicker and there are virtually no side effects compared to taking the oral steroids.

:)

Posted 5/17/2008 5:56 AM (GMT 0)
Laurenne,
I had Crohn's in my rectum and descending colon for 7 years and had fissures, fistulas, skin tags, and abscesses, so I know what you're going through, and I'm sorry. sad

Even though I was going to the bathroom 20+ times a day during a flare, I did everything to save my colon and avoid surgery (Remicade, oral and rectal medicines, vegan diet, natural supplements, etc.), but nothing worked for me. I ended up having surgery to save my life.

I had a proctocolectomy, which is the removal of the large intestine and rectum, and a permanent ileostomy. I saw my gastroenterologist after surgery and was expecting her to prescribe some maintenance medicine for me, but she said that since I never had Crohn's in my small intestine, it will probably never show up there, so there's no need to take medicine, since there's no disease to treat.

That was two years ago, and I've been disease-free and medicine-free ever since. I haven't felt this good in years! I have no pain anymore and never need to be near a bathroom. I eat whatever I want, exercise, work full time, and go swimming at the beach on weekends.

The appliances are waterproof and only need to be changed once a week, and that only takes about a minute to do. The bags have velcro closures at the bottom, so all you do is un-velcro the end and empty into the toilet. The pouch is flat against your stomach, so nobody can tell you have one. I just started a new job a month ago, and nobody there knows that I have one.

My husband, family, and friends have been very supportive, and they're all happy that I'm not sick anymore. Nobody could be happier than me. I love having my life back. :-)

I know it's a really difficult decision to make, but aren't we fortunate that there's an option out there that can lead to a life without pain and disease.

Wishing you good health,
Cecilia
Posted 5/17/2008 6:02 AM (GMT 0)
flchurchlady :)

You've been very lucky that it hasn't shown up in your small intestines yet...CD is a funny disease and the risk of it showing up in your small intestines after having your large and rectom removed increase...I hope this doesn't happen for you but the risk is still there...when I first got sick it was in my anus with perianal skin tags, rectom, colon and TI, it has since cleared from my TI but remained constant in my colon, and anus, on and off in my rectom, but I know it can affect my small intestines any time it decides to.

:)
Posted 5/17/2008 9:48 AM (GMT 0)
pb4,
I do feel very blessed that I've been disease free since surgery. :-)

I was surprised that you think there's an "increased" risk of getting Crohn's in the small intestine after having a proctocolectomy, because that's not what my gastroenterologists have told me. Sure, they say there's a risk, but not necessarily an increased risk. If you have a web link to a study done on that, I'd be interested to read the data.

I have read, however, that medical studies have shown an increased risk of getting colon or rectal cancer for people who have CD or UC for more than 8 years, which was one reason why I wasn't too upset when I had to have surgery after 7 years.
Posted 5/17/2008 12:07 PM (GMT 0)
the problem with a colectomy and crohn's is that it isnt a cure. but we all know that. what i've heard is that a lot of people with crohn's who get a colectomy end up having problems at the stoma site eventually which then requires more surgery to move it.

i too am plagued by anal tags and fissure/fistulas. remicade didnt heal these for me. it sounds like you are where i was 2 years ago. i was ready to go in for surgery (just had to make the appointment) but i held off a bit in order to give the makers diet a try for the "what if" factor so i wouldnt regret ever not trying the homeopathic type route. it worked for me. i still have some problems with abscesses and i have some minor bleeding, but then i have a stricture there too. i cant say the diet cured me or wholly healed me, but i feel freaking fantastic. i dont feel symptomatic anymore. the rectum area is the best it has been in a long long time but not back to "normal", whatever that is. the diet did wonders for me. it may be worth attempting. i cant guarantee it will work for you or what your benefits, if any, will be, but it could be worth a shot. if the disease is too far gone the body can only regenerate and heal itself so much. but that may be all you need. let me know if you have any specific questions about the maker's diet and my experience with it.
Posted 5/17/2008 12:26 PM (GMT 0)
not creative
I can relate to your story. I have CD in the first 30 cm starting from my rectum. I am in the middle of a flair up right now and there are times I lay in bed considering surgery. Usually at night, as that is when I am suppose to deposit my enema "salofalk". Every night I experience anxiety because it is so painful getting and keeping it in. Last night I just didn't do it and this morning I am suffering from it.
I have a fistula as well which doesn't seem to go away. I have been on Humira for over two months now and my next dose will be the forth dose next week. So far I have had no relief from the Humira injections but I am not giving up yet.
My father had an operation Dec 2007 which removed his whole large intestine (that's another story) and is now perminatly on the bag. He is healthy and happy at 60 years and it was the best choice for him.
The purpose of all this is to say don't give up yet. I was in remission for over 4 years prior to this flair up and I plan on getting back there without surgery. I am also taking herbal suppliments such as Bee Proplis and Acidophilus Ultra which I am told will help.
It is my opinion that surgery is the last option and you need to explore all options before traveling down that road. I know it is hard and days seems to never end when you aren't feeling well. I have had many sleepless nights with consitant washroom visits and rectal spasms out of this world. I am 33 years old and my hope is to have children soon, very soon. So first I need to get healthy and I know I can. We are lucky that our CD is in the large intestine and with medication and determination we will get there. Stay strong. If you need someone to talk we are always here
Posted 5/17/2008 4:43 PM (GMT 0)

flchurchlady said...
pb4,
I do feel very blessed that I've been disease free since surgery. :-)

I was surprised that you think there's an "increased" risk of getting Crohn's in the small intestine after having a proctocolectomy, because that's not what my gastroenterologists have told me. Sure, they say there's a risk, but not necessarily an increased risk. If you have a web link to a study done on that, I'd be interested to read the data.

I have read, however, that medical studies have shown an increased risk of getting colon or rectal cancer for people who have CD or UC for more than 8 years, which was one reason why I wasn't too upset when I had to have surgery after 7 years.

It's the nature of the beast...you take away the area that it loved affecting and it will move along and find a new area...this is typical for the disease, nothing's written in stone of course and many do very well with little involvement to other areas once the affected area has been removed, but from what my GI's (4 all together) have all agreed is that if you remove one affected area then there's an increased risk the disease will travel to find a new one.

 

I hope you don't experiance this but stay vigil with your CD and at the first sign of any changes see your GI ASAP.

 

:)

Posted 5/17/2008 5:12 PM (GMT 0)
This is what I've always wondered. It almost seems to me that IC is its own beast. That is what they consider my case -- indeterminate. My Prometheus and biopies say UC. The fistula and tags say Crohn's. So... Is this not really fully Crohn's and not really fully UC but some other third beast that is only defined as "indeterminate"? And, in this case, does how does surgery affect the disease? I know that I cannot get a J-pouch. My body will reject it in the form of pouchitis. My doc (who was presenting at some meeting) was explaining that people with colon cancer who remove the colon can get a pouch and rarely have subsequent issues. UC patients who get a pouch frequently suffer pouchitis. It's as if the body is determined to attack that area.

It's mostly a hypothetical question, as nobody really knows what will happen to any of us after surgery. Since I technically have the IC dx, I hope that if I chose the ileostomy, it stays away. I see my surgeon in a few weeks and plan to ask her and 2 GIs their opinion on that question. I will keep in mind that doctors risk liability if they say "it will never come back" and it does. I will just watch their wording and response to the question.

I have tried all the rectal meds too. They do help, but they hurt so badly the worse I get. And, the day I hemorrhaged I had just used an enema (hadn't been using them regularly at that point, but felt like I really needed to start). The doctors agree that it's possible the tip punctured the lining. That combined with the fact that i took Aleve is the most likely reason I bled had the blood in my body. I am now wearly of enemas and scared to use them even as prep. (not to suggest that anyone else should be scared, just to factor in my own fear.)  I am going to ask for entocort compounded into a suppository.  Those don't scare me and I've used it that way before.

Just more thoughts. I am appreciating this thread as it helps point out both sides to me too, who is also considering surgery.

Edited to say:  Since I am on Tysabri, there is yet another factor.  At $97,000 annual treatment cost, I max out my million dollar insurance cap in 10 years.  I am only 40 years old.  I can't get individual insurance because of Crohn's.  This is a state insurance pool...  If it only works a little, and with all the risk of the med itself...

Posted 5/17/2008 5:53 PM (GMT 0)
Hi,

Sorry to hear you are experiencing so much pain in your rectum.  I would talk to a colorectal surgeon and then make my decision.  Make sure to ask what complications can arise with the bag a few years down the road.  Can they give you a temporary bag and leave the rectum in place incase it can be treated with a miracle drug later?  I was told this by my surgeon, and he said your crohns will heal down there because the stool isn't passing through there 10 times a day anymore irrateing it.   On the flip side he said I could end up in emerg at 3:00 am with stoma problems.  I to have had this problem for 27 years.  Cortifoam and salofalk suppos. did help me, but I found remicade healed the periannal crohns.  My GI and colorectal surgeon were amazed at the difference in my before and after colonoscopies.  Unfortunately, I don't think there is a quick fix.  If there was we all would have jumped on it years ago.  I wish you the best with whatever you decide to do.  Please keep us posted.

Julia 

Posted 5/17/2008 6:32 PM (GMT 0)
Hi,
I had a colostomy 3 years ago due to diverticulitis causing my colon to perforate and since i have Crohn`s in the perianal area the colostomy has greatly improved my quality of life.i would never have it reversed and go back to all the BM` and the pain.Plus i recently had a resection in my terminal ileum and my stay in the hospital was a lot more pleasant as i have has diarhea postop.
Just one persons opinion.
Take care,
Michael
Posted 5/17/2008 8:41 PM (GMT 0)

Or more likely you're one of the between 2-5% that has BOTH crohns and ulcerative colitis.

:)

sr5599 said...
This is what I've always wondered. It almost seems to me that IC is its own beast. That is what they consider my case -- indeterminate. My Prometheus and biopies say UC. The fistula and tags say Crohn's. So... Is this not really fully Crohn's and not really fully UC but some other third beast that is only defined as "indeterminate"? And, in this case, does how does surgery affect the disease? I know that I cannot get a J-pouch. My body will reject it in the form of pouchitis. My doc (who was presenting at some meeting) was explaining that people with colon cancer who remove the colon can get a pouch and rarely have subsequent issues. UC patients who get a pouch frequently suffer pouchitis. It's as if the body is determined to attack that area.

It's mostly a hypothetical question, as nobody really knows what will happen to any of us after surgery. Since I technically have the IC dx, I hope that if I chose the ileostomy, it stays away. I see my surgeon in a few weeks and plan to ask her and 2 GIs their opinion on that question. I will keep in mind that doctors risk liability if they say "it will never come back" and it does. I will just watch their wording and response to the question.

I have tried all the rectal meds too. They do help, but they hurt so badly the worse I get. And, the day I hemorrhaged I had just used an enema (hadn't been using them regularly at that point, but felt like I really needed to start). The doctors agree that it's possible the tip punctured the lining. That combined with the fact that i took Aleve is the most likely reason I bled had the blood in my body. I am now wearly of enemas and scared to use them even as prep. (not to suggest that anyone else should be scared, just to factor in my own fear.)  I am going to ask for entocort compounded into a suppository.  Those don't scare me and I've used it that way before.

Just more thoughts. I am appreciating this thread as it helps point out both sides to me too, who is also considering surgery.

Edited to say:  Since I am on Tysabri, there is yet another factor.  At $97,000 annual treatment cost, I max out my million dollar insurance cap in 10 years.  I am only 40 years old.  I can't get individual insurance because of Crohn's.  This is a state insurance pool...  If it only works a little, and with all the risk of the med itself...

Posted 5/17/2008 8:45 PM (GMT 0)
Thanks for the responses, everyone...
These tags are killer, not to mention ugly and disgusting.
I'm on the Humira because of my schedule, I'm a student and we thought it would be easier to do it at home than the way that remicade has to be given. Not to mention the fact that I don't have any decent insurance and had to get Patient Assistance to get Humira. I haven't ruled it out, however, especially if it's supposed to be for perianal crohn's.
Posted 5/17/2008 11:27 PM (GMT 0)
not creative-well there many different routes to take, as this thread shows...One thing is for sure:  Crohn's affects everyone differently!  What works for one person doesn't for another and so on.  In that same manner, what avenue the disease takes is also different in everyone.

Here's my take...I like what Julia said about meeting with a ColoRectal Surgeon.  Make sure you get the best you can...teaching hospitals are good, but at least experience with the disease and how it is treated...that can make all the difference in how things turn out.  Take all your questions and get the answers you need to make an informed decision.

I chose the same route as Cecilia...I have had Crohn's for 20 years.  It was hard in the beginning but after a resection I was great for 10 years...then it took a turn for the worst and I took all the drugs/did the diet/had all the problems including abcesses and fistulas.  With an ileo I was able to get the fistulas somewhat under control.  After experiencing some major issues in the fall of '07, I met with my CR Surgeon and decided to go permanent.  Due to the fact that I haven't had any problems with my small int during the last 7 years, the chance of it coming back there is low, and it gets lower everyday that does by.  My decision was based on the likely hood of cancer, an inability to get a scope through my stricture and the rectal pain.  As of now, I do not have to take any meds, but I know that could happen if I experience any problems in my s/i. 

The way I see it is this:  I have a quality of life I couldn't have dreamed of and want to live life to the fullest, no matter what comes in the future.  For me waiting for a cure wouldn't have helped, even when it is found.  So, make sure you understand what could happen...both good and bad (I should say "possibly").

By the way, you mentioned marriage...will you be on better insurance when that happens?  It might be worth trying everything else before considering surgery...I wish you the best.

Posted 5/18/2008 9:08 PM (GMT 0)
Hey, not creative.

I feel I am in the same boat. I, too, have perinanal Crohn's and although my gastro's label my Crohn;s as "severe", by far the most crippling and degrading and painful part of teh CD for me are the fistulas. They just refuse to heal and drain constantly. I am to the point now where I have to wear 2 pads cut up to cover my panties so I don't leak out. Combine that with the setons and walking like I pooped my pants and I feel downright sexy :(

Remi did nothing for the fistulas and neither did predy or imuran. I am contemplating surgery just to rid myself of the excruciating pain. However some part of me is scared to go forward that I am not doing the right thing. i have a meeting with my rectal curgeon in a week as she insisted there are "options' for me but wanted to wait until after I had the baby to discuss them with me...hopefully she can offer some hope.

I am SO tired of living like this.
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