Questions Regarding(Total Proctocolectomy Surgery)

Hi, My name is Michael, I am 22 years old and I have been battling Crohn's Disease for about five years now. I've been hospitalized many many times for abdominal pain, severe constipation, bleeding, etc.. Back in February of this year I was hospitalized for two weeks and they decided to start me on a new drug called Remicade...It has been working for thhe pain and helping me eat foods I would not normally eat but It has not improved my condition of my colon or my lower bowels whatsoever. I have very many bowel movements everyday and its becoming to control my life. I don't go out very often, Im fortunate to have a very low key and stressfree job and access to what I need but my social life is suffering. I had an apt with a surgeon a few days ago and he advised me the best thing to do is to have the Total Proctocolectomy with the Ostomy Bag...He is giving me a bit of time to decide what I want to do. I'm having a bit of trouble deciding because I know this will change my life very much and I know once I get this done there is no take backs...Im looking for as much information about the procedure as possible.
I have so many questions that I dont seem to be getting the answers, like:
Recovery time?
The pros and cons?
If people have had regrets having the surgery?
Personal Life(Intimacy) issues?
Sports/Exercising?

If anyone has any answers or personal experience with it please any info would be much appreciated.

Thank You,
Michael

There are quite a few members here on the forum that have had this proceedure. The recovery time will vary, if you have an open proceedure your recovery time will take much longer. Laproscopically, recovery will be much quicker.

I have to ask, have you had any surgeries yet for resections? How about they give you a temporary ileostomy to start with to rest the bowel?

Thank you for your response Terriernut. I have not had any surgeries yet but they told me thats the only option and they are giving me a month to decide. Ive been pretty much trying different medications for the last 4 years. Usually if I get one thing cleared up than another thing occurs...I dont have any pain now whatsoever its just the frequency of my bowel movements and the lack of control with them. They seem to be constant. The surgeon said that my Crohns has affected the majority of my colon as well as parts of my lower bowel. He suggested the surgery. As much as I do not want to have the operation, Im not sure if I can keep going on with the lack of mobility and control much longer. Once again thank you for your response.

Take Care
Michael

So, it's affecting your large colon to a lesser degree than your small intestine? Do you have strictures, fistulas? How about your rectum? Ithe understand the contant trips to the loo! I've been taking psyllium husk tablets and no longer have the constant big D now.

Sorry to ask these questions, but please dont be embarrassed here! The reason I'm asking these questions is it seems they want to do a pretty major surgery on you, and there is no going back from it. So, when I see your response, my first instinct is to tell you to get a second opinion!

Thanks I not easily embarrassed. This kind of information is what I need and love to learn about because I find it helps.
I dont have any strictures or fistulas...It sometimes gets umm irritated there due to the frequency but I try to keep it clean and moist as possible. I tend to be constipated...think thats one of the main reasons I tend to go so frequently.

I am trying to get a counsler to talk to as well as a second opinion from another surgeon because I know this is a major and life changing surgery and if I do decide or am forced to get this done, than I want to know what I am getting myself into as well as if it can be avoided.

Have you had a scope recently? Where they had a real good look around? Upper and lower?
As long as your bum is good, and no strictures, I would ask for a temporary stoma before the 'full monty'. I would absolutely insist on a second opinion.

I think you may have some stricturing from your symptoms, probably from scar tissue from chronic inflammation. But I would hope a scope would tell you that.

Hi Michael. I had my surgery in two stages, the colectomy and ileostomy formation last year and then a proctectomy this year in April.

I saw my consultant yesterday and the histology showed just how bad things were, so I am so glad to have had the surgeries.

It is a big decision and it is not easy. I found the first op much harder than the second, pain wise. Even though the second op was supposed to be the bigger surgery.

I have my life back now, I have no problems at all with the stoma and I am free from those awful medications too.

Good luck, I hope things go well for you, whatever you decide xx

Hi Michael,

I agree with Terriernut - in that you should ask for a temp ileostomy instead of such a drastic step. If you had a temporary ileostomy, they do not remove anything - it all stays in place, and your colon will have time to heal.

Once your colon is healed, you would then have the choice of getting the ileostomy reversed.

A second opinion is not a bad idea at all - and also make sure that the colorectal surgeon you chose, is very good and experienced.

Also, ask your doctor if you can receive the remicade more frequently if you are on the lower dose. I know some people get the infusions every 8 weeks, and others get them every 6 weeks. Does he have you on anything else other than the Remicade - like Pentasa or 6MP?

Hi Michael,
I'm 45 and I had this surgery a bit over 2 years ago. First the good stuff. At this point I can do so much more than I could when I was sick. I ran my first marathon this past May. I work full time and have 3 young kids. I would say there is not anything I can't do with my ostomy. I like that I don't have to worry anymore about urgency or accidents. Once you learn and master the ostomy equipment, you have a great deal of control over elimination. You go when you want - no more mad dashes for the bathroom.

I started with the good, so here's the other side. Proctocolectomy is a difficult surgery. You probably know this, but it means the removal of the colon, rectum, and anus. As you can imagine, the anus is not an easy thing to remove. You will have two incisions to heal at the same time. The bottom incision makes it hard to sit and get comfortable for a few weeks (or more).

Some people have an easier time, but my recovery was tough (pain and feeling like I was hit by a truck). I was out of work for about 3 weeks. My surgery was in April of 2010, and I was able to start running in late July 2010. I ran my first half marathon in Dec of that year. So yes, recovery is tough, but you will get past it and be stronger than before.

The mental aspect of having an ostomy is probably the toughest part. I'm over 2 years in and of course I wish I did not have to have this for the rest of my life. But, this is what I have so I deal with - so I'll do the best I can. I don't like it - but it's my reality. And I've learned to accept it and move on.

You're a young guy so be very aware that when they remove the anus, the surgeon is working around nerves that control sexual function. I know of some people that lost the ability to have an erection, or have retrograde ejaculation. It is a real risk. I was lucky and did not lose any function. There is a slight difference in that area for me, but very minor.

You mentioned about personal life / intimacy. Personally, I had no problems in that area. For a guy dating, I think it will just depend on confidence. But, since I've been married for a long time - I have no experience in this area so I'll leave it at that!

And last, you mentioned sports /exercising. This is my favorite part - I can do everything I could before. I've bowled, played tennis and racquetball. Running (of course), softball, jumping on a trampoline. Playing and wrestling with my kids, etc. I've been to pools and the ocean, water parks and roller coasters.

That's what I can think of now. Let me know if you have more questions. I hope I helped. For me, the decision was made easier because of dysplasia (pre cancerous changes in the colon and rectum). Plus, my Crohns was getting so bad, with fistula and setons, my life was getting very difficult.

Good luck with your decision.

Wow. I greatly appreciate all the info and insight everyones given me. I'm starting to become more acceptable about it and I find with the more I know and the eventual increase in everyone's lives after this major life change is making it much less harder to deal with and I now feel I have something to look forward to after.

Thanks so much again everyone and I will diffinately keep in touch. Also hope everyone is well or hope they feel better soon!

Micole - you are more than welcome - glad we could help you. If you have any questions or concerns, let us know

CDDad - you put everything into prespective so well and I find it so inspirational the way you have turned everything around in your life. It seems as though you went through a hell of a time, and came out on the other side much stronger. Would you mind me asking what appliance system works best for your everyday life, and how do you wear it when you run and swim?

Thank you.

If you don't have strictures or fistulas, I would first try different treatments like LDN, or Intravenous Immunoglobulin, or eating Plantains. I have had the surgery but only because I had too many structures and fistulas to handle. Of course you can live with quite well, but I would still exhaust all possibilities of treatment first.

Hopeful - do you know anyone who has ever tried the intravenous immunoglobulin? I have researched this quite a bit, and don't understand why it is not offered to crohn's patients - especially those that are refractory. From what I read, it can put you in remission in a matter of days.

I don't, but I know its used for many autoimmune diseases very safely. There was a review published on it recently - I posted the link in one of the threads. http://www.ncbi.nlm.nih.gov/pubmed/22579561

The issue with it is the high cost. But if I had to try and save my gut I would do it. I was dealing with mechanical strictures so I had no choice.

LDN is another good option if you have not tried.

Tenacity - I use the 2 piece Hollister New Image system. I change my bag every night before bed. That gives me a fresh filter every night to help prevent ballooning. I also use a Hollister Adapt ring. I think the Adapt ring made the biggest difference for me in preventing leaks and giving me a solid 4 day wear time that I can depend on (mostly - ha!).

I don't do anything special for running or swimming. I think I am just one of those lucky folks who gets good adhesion - even in water. Maybe it's my dry skin - who knows. I do think luck plays a part.

I did try the 3 major brands (plus Cymed) 2 years ago and Hollister worked best for me. With Hollister, I do wear the thin belt that clips onto the bag. Without that, the Hollister bag tuperwear like connector is way too easy to remove accidently. Plus, I like the way the belt helps support the weight of a filling bag. Now that I am used to it, I wear it 24x7.

Hopeful - yes, I read that IVIG treatments are expensive - but with drugs like Remicade on the market now, the cost is not much different. It would be interesting to do a survey and to find out how many of us have ever been offered this treatment. It just doesnt make sense to me that refractory (and everyone else for that matter) patients have not been told about this treatment.

CDDad - thank you so much for sharing! I really appreciate it

Hi Micahel,

I had my entire large bowel removed in 1987 when I was 19, and went with the j-pouch as that was the only option other than a permanent ileostomy at the time. There are other internal options now which fail less often. I ultimately had a permanent ileostomy made around 1991-2 and my life got back to normal. The lifestyle with a bag takes some adjustment, but you are moving forward and living a full life. At such a young age it's understandable to keep trying different drugs and tough it out, so to speak. But that gets old. Nobody has regrets "choosing" to have this kind of surgery, because the choice is pretty clear- we all wanted our lives back. Here is my list of Pros and Cons. I'm 44 now

Pros:
1) Continence! You never have to worry about losing control, or running to the bathroom
2) Disease control. If you're disease is only in the large bowel, you will be disease free. IBD can recur in other parts of the digestive track (see my story), but I had 25 years of no illness and no medications.
3) Ability to have full life again
4) No chance of ever getting colorectal cancer or needing another colonoscopy!

Cons:
1) Stigma against it. Overblown and misunderstood. But many people will feel sorry for you if you wear a bag. That gets old, but you do get used to it. Before my lasik eye surgery, I thought wearing glasses was more of a pain than wearing my bag- no joke.
2) Adjustment period. There is a learning curve as to how to take care of the pouch properly so that you don't have accidents. No need to freak out the first time an accident does happen and the contents of the bag leak out. We've all been there, done that.
3) Diet. Not really a con, but you want to stay hydrated. Your large bowel is very good at absorbing water, salt and potassium and with that removed, you'll feel better when replenishing that. Don't worry about eating too much salt, that's a good thing since you need it. your body will actually compensate for the low salt, but adding it back does make me feel better. I make my own gatorade using powder juice mix an adding salt and sugar- good recipes online under homemade gatorade. Sometimes eating too much ruffage can get stuck but everyone is different.
4) Intimacy is a challenge, but overblown. I wrote a comment that may help you in another thread about imtimacy/stoma issues and you could search and find it (sorry, this comment would be too long if I added it here). However, some people will have an issue being intimate with a person who wears a bag and will always be that way. Feel sorry for these people, but don't take it personally (if you find such people that is).

No worries about physical activity and exercise. With the surgery, your body will feel normal in terms of energy and strength. Really nothing should prevent you from exercising however you like. One negative I feel is my abdominal fat seems harder to get rid of now as it seems to collect above my scar. But then I'm 44 and it's harder to get rid of now anyways.

I'm sure there are lots of others pros and cons, but that list could get quite long. I hope this helps for now. Please keep us posted!

Edit: forgot to add a tool to help you make a decision. About six months before I had my surgery, my doctor asked me if I had ever considered surgery because I had hit the wall, so to speak. I was unable to drop below 20 mg of Prednisone and was no longer improving. I had no fever and the pain was mild, but the quality of my life was poor. My doctor asked me to rate my health on a scale of 0-10, with 0 being the worst shape (when I was first hospitalized) and 10 being my level of health before I was sick. I could only answer a 3 or 4 because I was still very incontinent among other things. So my doctor asked me at what level do I need to reach to be happy? I said 7 or 8. Next obvious queston- so why not consider surgery? Because I wasn't getting sicker, I didn't want to give up. About three months after that, my fever came back big time and I was back in the hospital, so the decision made itself. Now using the same scale, after I recovered from my surgery I would rate the quality of my life 8 or 9.

CDDad,
Thank you for your earlier comments on this thread. I would like to ask a few questions.

Was your proctocolectomy surgery performed using Laparoscopy?

Was the proctocolectomy and ileostomy performed during the same surgery?
How long were you in the hospital?

What medications did you take for pain management while in the hospital?

What was the time of recovery while you were at home?

What medications did you take for pain management while recovering at home?

On a scale of 1 to 10 (10 worst) with your pain management what was the level of pain while in the hospital?

On a scale of 1 to 10 (10 worst) with your pain management what was the level of pain while recovering at home?

How long before you could walk after the proctocolectomy and ileostomy?

What are the chances that Crohn's Disease will reappear in the ileum?

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CDDad said:

Hi Michael,
I'm 45 and I had this surgery a bit over 2 years ago. First the good stuff. At this point I can do so much more than I could when I was sick. I ran my first marathon this past May. I work full time and have 3 young kids. I would say there is not anything I can't do with my ostomy. I like that I don't have to worry anymore about urgency or accidents. Once you learn and master the ostomy equipment, you have a great deal of control over elimination. You go when you want - no more mad dashes for the bathroom.

I started with the good, so here's the other side. Proctocolectomy is a difficult surgery. You probably know this, but it means the removal of the colon, rectum, and anus. As you can imagine, the anus is not an easy thing to remove. You will have two incisions to heal at the same time. The bottom incision makes it hard to sit and get comfortable for a few weeks (or more).

Some people have an easier time, but my recovery was tough (pain and feeling like I was hit by a truck). I was out of work for about 3 weeks. My surgery was in April of 2010, and I was able to start running in late July 2010. I ran my first half marathon in Dec of that year. So yes, recovery is tough, but you will get past it and be stronger than before.

The mental aspect of having an ostomy is probably the toughest part. I'm over 2 years in and of course I wish I did not have to have this for the rest of my life. But, this is what I have so I deal with - so I'll do the best I can. I don't like it - but it's my reality. And I've learned to accept it and move on.

You're a young guy so be very aware that when they remove the anus, the surgeon is working around nerves that control sexual function. I know of some people that lost the ability to have an erection, or have retrograde ejaculation. It is a real risk. I was lucky and did not lose any function. There is a slight difference in that area for me, but very minor.

You mentioned about personal life / intimacy. Personally, I had no problems in that area. For a guy dating, I think it will just depend on confidence. But, since I've been married for a long time - I have no experience in this area so I'll leave it at that!

And last, you mentioned sports /exercising. This is my favorite part - I can do everything I could before. I've bowled, played tennis and racquetball. Running (of course), softball, jumping on a trampoline. Playing and wrestling with my kids, etc. I've been to pools and the ocean, water parks and roller coasters.

That's what I can think of now. Let me know if you have more questions. I hope I helped. For me, the decision was made easier because of dysplasia (pre cancerous changes in the colon and rectum). Plus, my Crohns was getting so bad, with fistula and setons, my life was getting very difficult.

Good luck with your decision.

Click to expand...

floreshime said:

CDDad,
Thank you for your earlier comments on this thread. I would like to ask a few questions.

Was your proctocolectomy surgery performed using Laparoscopy?

Was the proctocolectomy and ileostomy performed during the same surgery?
How long were you in the hospital?

What medications did you take for pain management while in the hospital?

What was the time of recovery while you were at home?

What medications did you take for pain management while recovering at home?

On a scale of 1 to 10 (10 worst) with your pain management what was the level of pain while in the hospital?

On a scale of 1 to 10 (10 worst) with your pain management what was the level of pain while recovering at home?

How long before you could walk after the proctocolectomy and ileostomy?

What are the chances that Crohn's Disease will reappear in the ileum?

-------------

Click to expand...

It happens. If the original diagnosis is UC it's probaby rarer. Happened to me 26 years after my original surgery. I wasn't evev taking any meds since the thought was my surgery "cured" my UC but that was wrong. But after surgery I was up an around quickly- just very skinny. Hospital pain isn't so bad since you're on meds, but you'll definitely have some bad days- with me it was due to my being orthrostatic from coming off the steroids too quickly, and I struggled to eat at first. But it all settled down. Bum's a bit sore afterwards but it's nowhere near the level of discomfort I had before going in.

I had the surgery in November of last year & while it has helped with the stomach pains from my ridiculously diseased colon & my fistulas aren't leaking anymore, it's bought with it it's own little problems. I've had abscesses, vaccuum dressings, recurrent infections & am still awaiting reconstructive surgery as it's basically a mess from all the fistulas and stuff I had before & I still get discharge from the surgical wound.
My Crohn's has now moved into my ileum but who's to say that wouldn't have happened even if I didn't have the surgery! The doctors told me prior that there wouldn't be an increased chance & when it had spread I was a tad angry but as I say, it may have been entirely coincidental due to the aggressive nature of my Crohn's!

On the stoma side, I've had mine since 2009 & it really did give me a new lease of life, it's amazing to feel in control again as many others have said, it's possible to play sports and excersize as you can get all kind of bands and covers but obviously big weights and strains aren't ideal.

Intimacy is kinda hard initially as you don't feel confident in yourself, but your confidence definitely grows & I think when it's the right person (hello cliche) & you can explain to them how it's completely changed your life for the better and where you'd be without the surgery, they come to understand and accept it as you would.

I wish you huge amounts of luck in whatever you choose & I hope it works for you

I had this very surgery 5 weeks ago,due to me being unable to get off the prednisolone and all the meds they gave me not working,i wasnt really in pain,just had very agressive D all the time,at my worst i was using the loo about 30 times a day,i went on holiday last year and it was a complete waste of my money ad time,

so eventually they said its that time,you need surgery ASAP,which in the uk under the NHS means about a year,i had a real battle with my consultant to refer me to the surgeon,even though he knew i was pretty ill and had no life basically,so i had a long time to get my head around the idea of what was coming,at Xmas the IBD nurse kindly put me on steriods ro get me through a xmas without having to spend most of Xmas day in the loo,i stayed on the right up till my surgery which meant this years summer holiday was nearly like a normal holiday,bowel control to a certain degree,it fealt great but knew it was temp,so 2 weeks after my hols i went into hospital,had the surgery and felt great,i opted for epidural instaed of morphine drip,no zombie like state,but pain did kick in once i came off the epidural and onto pain killers,wow it hit me hard and was pretty sore,but i had to get my pain in order to get home,so i opted to come off the mega pain killers for Co-codomol and it was a struggle at 1st but day by day it got easier,and helped me get home after 7 days,when i got hom i was still on th epain meds but my biggest gripe was the stitches the used to sow up my ass,it was like sitting on a brbed wire fence,they came out after 4 days and wow what a difference sitting down with next to no pain,that was the last time i really used any pain killers,4 weeks after surgery i decided to try going out on my bike,ouch what a weird feeling sitting on a saddle like a razor blade but within a week,i was out doing a 30k cross country ride with my mates and i was happy as a pig in shite,people thought i was crazy going out and doing so much so quickly but i knew in myself i was ready,maybe should have worked my way up to a 30k ride slowly but heyhoo you gotta try,next day i was a bit tired but no adverse reaction in any area i had surgery,so there is light at the end of the tunnel,i know not everyone is the same but it goes to show you will recover and be able to get on with your life,and for the better....now my next big step it to get totally bladdered at my 40th next week and probably never want to drink again!!!