Surgery - Colectomy

[Roman]

Looks like the dr agreed with me. My gf is going to have the surgery and it's looking like it's going to be a full colectomy, removing the entire colon. What can we expect from this? Any and all info would be great. Recovery time? Preventing infection? Whatever you got.

Looks like it will be scheduled for the first part of next month. She's really worried about how she's going to be doing around Christmas time. She was in a bad flare last Christmas and missed most of it. Hopefully that won't be the case this time around.

 

[imisspopcorn]

Good luck to you and your girlfriend...I hope the surgery gives her some relief. I'm assuming she will have an ileostomy??? Hopefully someone with some personal experience can help answer your questions.

 

[Roman]

That's a good question. She goes in to have a sigmoidoscopy and then she meets with the surgeon to discuss her options. From what her GI has said, they will probably take the whole thing out, so laproscopic surgery is probably out. He also said some require an ileostomy and some don't. She's been dealing with this for quite a while now, so hopefully this will be it.

 

[merrywidow]

there are loads of us on here with a illeostomy, me included. i liken it to having a new baby in the house. in the early days you will be up at night, changing the pouch. you will also need to find out when your stoma is most active, its not a good idea to try and change it when its active!!! mine gets active about 1 hour after ive eaten. and have all your ssupplies ready to hand before you take the pouch off. it will take time, but you will get a expert at it. it took me 3 months to understand my stoma.
when i had surgery the hosp gave me MRSA, and that took got into my wound, this took 8 months to heal. but if had to make a decision again about having a stoma, i would definalty have it again though i would have it earlier it stop all the pain and urgency of bowel movements.
if you have anymore questions ask away.

 

[merrywidow]

i forgot to add some food tips.
to make the poo a bit thicker, eat, marshmellows, rice or bananas.
avoid fizzy pop drinks. they will give you gas and unless your pouch has a stoma, thi will be a problem.

avoid at all costs, mushrooms, popcorn, peanuts and fresh coconut.
these will casue blockages.

 

[Guest]

aw sorry to hear she has to have the surgery, Roman, but it sounds like it's really needed. hopefully, if the op is early December, she should be feeling quite comfortable by Christmas.

hope it all goes well - and i hope she feels loads better for it

 

[BWS1982]

Yeah, a colostomy and ileostomy are two different outcomes, they depend on which is attached to the surface, usually determined by how much will be taken out and how diseased the whole bowel looks. Best of luck, no personal experience here, but I have come very close to this route, and it's still a possible scenario one day, I just personally don't ever want it to be (that's just me).

I think the fact that everything will be healing will make the holidays better, as opposed to the endlessness of last year.

 

[Roman]

I had to take her to the hospital yesterday and admit her. She can't keep anything down and was running a high fever. They tested her blood sugar last night and it was high. She talked to a dr this morning and he said she has diabetes. Hopefully its just because of the prolonged steroid use and its not permanent.

She meets with her surgeon on the 4th and I doubt they will put the surgery off for very long, especially with her going in the hospital yesterday. Just sucks because she's going to be stuck in there for thanksgiving now and possibly christmas too.

 

[jed]

hiyo roman,

i had a celloectomy where they were able to leave the last couple of inches in me (if you look at a digram of the large intestine, mine would end at the left hip).

was the greatest thing i've ever had done with crohns.

very similar to what merry said about the ileostomy, at the start its high frequency and urgency, but over time (maybe 6 months it took) my body got used of my new stomach and now you couldn't tell i was ever sick. it really has been that good for me.

and on another note, they'll probably remove her appendix while their at it, so that is one less thing to worry about in the future

best wishes to you both.

 

[Jeff D.]

Sorry to hear about that. Is there a reason they are taking the entire colon out? Sorry if I missed that I'm cleaning the house for guests tonight and I jsut wanted to reply real quick. I'll say some prayers for ya'll.

 

[Jennjenn]

I am sorry to hear this also. I hope that the doctors will help her feel better soon.

 

[Roman]

They've done several colonoscopy's on her and almost the entire colon is pretty screwed up.

So will she more than likely have the ileostomy for the rest of her life? I thought they would be able to reattach her ileum to her rectum? Thats really going to be hard on her. She had a huge fear that this would be the case.

 

[imisspopcorn]

I'm sorry to hear this news...I think they only do the J-pouch procedure for people with UC, otherwise the Crohn's wreaks havoc on the pouch. She will have some adjustments to go through. I'm sure someone here with personal experience with an ileostomy will give you better insight. Is she interested in joining this forum??? It might really help her.

 

[Roman]

Removal of the Colon (Colectomy) or Colon and Rectum (Proctocolectomy)

For some people with severe Crohn's disease affecting the colon, surgery may be needed to remove the entire colon (colectomy). If the rectum is unaffected by the disease, it may be possible to join the end of the small intestine (called the ileum) to the rectum. This allows the person to continue to pass stool in a bowel movement.

However, some patients may need a proctocolectomy – a procedure involving the removal of both the colon and rectum that is performed along with an ileostomy. An ileostomy – performed after the proctocolectomy – involves bringing the end of the small intestine (ileum) through a hole (stoma) in the abdominal wall, allowing drainage of intestinal waste out of the body. The stoma is usually created in the right lower abdomen near the belt line.

An external bag must be worn over the opening to collect the waste, and it must be emptied several times a day. Clothing can be worn normally with minimal adjustments, and no one will know you have an ostomy unless you tell them.

I really hope this is the case. It is only affecting her colon, so maybe she will luck out.

 

[merrywidow]

keep us updated roman.

 

[xX_LittleMissValentine_Xx]

I'm sorry to hear this, but hopefuly she will start to feel better
I get rly confused about all the different -ostomies!
xxxx

 

[Guest]

Roman - i agree that it would be a great idea if your girlfriend became a member here, as well as you - she'll need as much support and info as possible, particularly at the beginning, and we have many members here who've had ileostomy surgery & learned how to cope with one.

it's quite possible that her stoma will be for life - if the colon is diseased right down to the rectal stump area, ie that last bit of colon before the rectum, then there will be no option to reconnect.

yes this is a scary and very final thing to contemplate, but life quality is paramount, and in time she will realise this. please have a look at Kello's posts, here.. http://www.crohnsforum.com/showthread.php?t=5618&highlight=surgery+time this is a fantastic informative and reassuring thread for anyone who's having stoma surgery..

also, i just found an Ostomy support group near you.. they hold meetings, and i am sure they can give a lot of advice and information to you both.. http://www.nashvilleostomy.org/

having a stoma isn't the end of the world, it can actually be the beginning of a better one for many of us.

 

[merrywidow]

I'm sorry to hear this, but hopefuly she will start to feel better
I get rly confused about all the different -ostomies!
xxxx

this is a bit graphic!!!
there are 3 types of stomas. 1 is urostomy this is for urine and attached to the bladder.

the 2nd is colostomy, this is for poo and is on the left hand side of the tummy and is attached to the colon. poo is alot thicker and more poo like with this dtoma.

the 3rd is ileostomy this is attached to the right hand side of the tummy and means more of your diegestive stytem has been taken away. the stoma is attached to the iluem. the poo is more watery with no lumps.
sorry for the grahic details.

 

[Roman]

Just got back from talking with the surgeon. She recommends a proctocolectomy. My gf is so distraught. I guess she's got some thinking to do. We'll probably go get another opinion too just to be on the safe side and be sure this is what's necessary.

 

[Sue-2009]

Colectomy

I know its hard for her to wrap her mind around...I had a temporary ostomy when I had UC, and then the j pouch. Now I have crohn in my pouch. I do not like the drugs I am going to have to go through...I hate crohns & am having heck of a time emotionally adjusting. BUT, I never felt better than when I had that darn bag!!! NEVER. How about a kock pouch? DO they do those on crohns patients or just ostomies....She will have a hard time adjusting...but, she will be in good company..and her life will be back. Peace and prayer to you and her...Sue

 

[Cog]

I am sorry to hear the news

I had a full colectomy laproscopically and I was walking down the mall within a week. For me my surgeon described my colon as a dead shoe - which was probably true what it did for me was give my body a chance to recover by getting rid of the bulk of my inflammed tissue.

I am better off now - flares are less - I can control them quicker - I can keep away from steroids and lead a reasonable life with a bit of planning - where the bathrooms are - hey what is new

Making the decision is hard and I would never under estimate it. What the Dr. forget to tell me is that as humans we adapt pretty well physically too

When I was making my decision I found out that my best friends wife lost her Colon at 22 and lets just say we have past our half century now - she climbed Kilimanjaro without problems

I hope your GF will see this as a new beginning

Cog

 

[bruscar]

Hey my friend,

I have been there and bought the t-shirt.

Ihad a temp ileostomy for six months, then had it reversed. Then i had too have my rectum and anus removed due to unreal pain cramps and bleeding etc.I begged for the ileostomy for the immediate relief.

I had a choice but it was enevitable in one sense. The biggest decision of my life but i am far better off than i was for a real long long time.

I wish you both the very best of luck.

It sounds like your other half is in very good hands my friend, good on ya !

Lots of luck buddy.

P.S. Any questions i am on every couple of days.don't hesitate !

 

[farm]

I had a hemi-colectomy last December and it took me about 6 weeks to get back to work.
My best friend (brother) had colon cancer and had everything removed. The perm. colostomy has changed his life some but if he wasn't to tell you about it, you would never know it. He lives his life and does everything and more since the operation.
Once he got it down (what to eat, what not to eat, etc) he only changes his bag every week.