Upcoming Total Colectomy in 2 Weeks - Scared - Need Advice

[shalin]

Having surgery need insite

Yesterday I had my colonoscopy to find out exactly where my problem lays. The outcome is removal of my large intestine. I am very nervous about the surgery. I have been trying to find out on my own what steps are neccesary after this removal to keep me hydrated as well as healthy. I go see the surgeon this thursday. I have been blocked since October and have had to take several different colon cleaners. I started my prep on Sunday and still wasn't completely cleaned out for the test yesterday. The doctor had me on amatiza for quite awhile and that did not work. Then we tried align and upped my miralax daily. I have had constipation problems for about five years now. This pain is starting to get unbarable. I would like some help finding sites that can answer questions without having to join another site that wants you to pay to get health information. Also anyone who has gone through this please give some advise. I know everyone is different but a little more insight would be helpful. Thank you.

 

[DougUte]

Hi Shalin. I have not had a full colectomy, but I have had a bowel surgery. I had 2ft of my small bowel and 6 inches of my colon removed. I am thinking that maybe you could post this in the Ulcerative Colitis forum. Since UC attacks only the colon you may find people in there who either have had the surgery or could be facing the surgery like you are. http://www.crohnsforum.com/forumdisplay.php?f=69

It could be a good place for you.

I also wanted you to know that we do support you. :ghug:

 

[KazT17]

Hi shalin, I have had my colon removed. You will naturally adjust and hydration should not be an issue when things settle down. I was told not to drink too much water, but to drink sports drinks with minerals and salts etc that we need. Too much water dilutes the salts etc. you have to be careful what you eat, especially in the early days. Avoid mushrooms, corn nuts and things that could cause a blockage. Have a look on the ileostomy association forum, they have lots of info. Good luck xx

 

[shalin]

So it has been a month since i found out i needed surgery for my issues. I am so frustrated still no surgery has been done and the surgeon refuses to remove it. he said because i have crohn's/colitis i would be doing more damage. I have been drinking a half a bottle of miralax on a daily basis and occationaly do 2 bottles of citra magniesium just to have a movement. I am also taking the pain meds just to make it through the night and day. I have spoke to my gastro and we are now sending me to U of M for another opinion and possible surgery to be done there. Everytime i go to the ER they tell me to speak to my gastro and my surgeon. I have now been put through hell with a defecagram and a manomatry as well as gallbladder test. All came back normal except the gallbladder it is working just not at perfection. I just needed to vent and possibly get some ideas of what to do next. I just want to cry, scream, and laugh all at the same time from my frustrations. i have missed so much work and can barely make it through the work day. I have to take several breaks throughout the day. It is starting to affect my position. I cannot loose my job or position due to income reasons.
Thank you for listening and for any advice that can be given.

 

[Hobbes650]

Hi shalin, I have had my colon removed. You will naturally adjust and hydration should not be an issue when things settle down. I was told not to drink too much water, but to drink sports drinks with minerals and salts etc that we need. Too much water dilutes the salts etc. you have to be careful what you eat, especially in the early days. Avoid mushrooms, corn nuts and things that could cause a blockage. Have a look on the ileostomy association forum, they have lots of info. Good luck xx

Hi Shalin! KazT has some great points here. I had my colon and rectum removed, that's called a proctocolectomy. Is your rectum ok or is that coming out as well? I ask because if not, they will connect your small to your large intestine, if yes then you'll be getting a j-pouch or an ileostomy. Recovery is a little different in each case.

But with just the colon coming out, the main issues for you would be dehydration and bowel control. Your colon is where most of your salt and potassium get absorbed. Now, you probably won't notice any difference but if you do add some extra salt and potassium to your diet you may feel better. I certainly noticed a difference, but if I add too much then I have to pee more often but somewhere in the middle is my happy place. The sports drinks contain extra salt and potassium, as well as some other stuff that's good. Instead of that, I make my own by just adding some sugar and Morten's Lite Salt to a sugar free packet of kool aid, or something similar. the Lite Salt has potassium in it, so it's real easy to do. I'll also add it to my ice tea, lemonade, or just about any juice I take. Not much, but I find a little helps. I keep juice packets at work so I can just make some in my plastic bottle whenever I want. Your diet part should get back to normal. If you have the j-pouch or ileostomy then there is a greater risk of getting a blockage but if not then I would think your diet should be pretty much like before. You'll certainly want to stay away from ruffage (raw vegetables, nuts, popcorn, mushrooms, etc..) at first while you are recovering but you'll be able to eat them later on. Even with my ileostomy I can eat all of that, but I don't eat too many nuts or popcorn- by that I mean if there are nuts in my bran muffin I don't sweat it, but I'm not eating a bowl of peanuts while watching the football game.

Lastly, don't ever pay for any information! There is so much good stuff on this site and others. Do some searches on google, facebook and youtube and you'll find lots of resources. And keep asking the good questions! You'll feel soooo much better once that colon is gone and your back to eating again without pain. Keep us posted!

 

[Hobbes650]

So it has been a month since i found out i needed surgery for my issues. I am so frustrated still no surgery has been done and the surgeon refuses to remove it. he said because i have crohn's/colitis i would be doing more damage. I have been drinking a half a bottle of miralax on a daily basis and occationaly do 2 bottles of citra magniesium just to have a movement. I am also taking the pain meds just to make it through the night and day. I have spoke to my gastro and we are now sending me to U of M for another opinion and possible surgery to be done there. Everytime i go to the ER they tell me to speak to my gastro and my surgeon. I have now been put through hell with a defecagram and a manomatry as well as gallbladder test. All came back normal except the gallbladder it is working just not at perfection. I just needed to vent and possibly get some ideas of what to do next. I just want to cry, scream, and laugh all at the same time from my frustrations. i have missed so much work and can barely make it through the work day. I have to take several breaks throughout the day. It is starting to affect my position. I cannot loose my job or position due to income reasons.
Thank you for listening and for any advice that can be given.

Hi Shalin, What your doctor said about doing more damage doesn't make a lot of sense to me. There are times when surgery is needed, not matter what form of IBD you have. I had surgery after being diagnosed with UC but then about 25 years later Crohns showed up so I must have had Crohns Colitis originally. Surgery was very good for me, including the ileosotmy- makes the current flareup actually easier to deal with. I've never heard of a doctor saying that surgery would do more harm than good, and if my doctor said that to me I'd be looking for another opinion.

 

[shalin]

Hobbes650
I do agree with needing a second opinion. I an very close to going into the ER and telling them I am not leaving until they remove the damaged colon. i am so frustrated. Thank you for your insite. I does appriciate it.

 

[KazT17]

Hobbes, what were your symptoms to make your diagnosis change to crohns? I am getting a lot of pain lately and had my first blockage recently too. My pain is usually on the left or under the stoma site. Thanks xxx

 

[Hobbes650]

Hobbes, what were your symptoms to make your diagnosis change to crohns? I am getting a lot of pain lately and had my first blockage recently too. My pain is usually on the left or under the stoma site. Thanks xxx

I've had this permanent ileostomy for about 22-23 years now. Even so, during this time I occasionally get a small bowel obstruction due to eating something I shouldn't have. It was thought my intestine might have a small kink somewhere. Normally I tough it out and drink lots of water, but sometimes the pain gets too bad and I end up in the ER. Well that happened in January of 2012 and I went home the next day. Never could figure out what I ate which caused the small blockage, and that was the first time I couldn't figure it out. In May it happened again- I was having lots of pain and nothing was coming out into my bag but again, I couldn't think of anything I ate which would have caused it. Got very dehydrated, so went to the ER. But this time my sed rate and CRP tests were way out of whack. Had ct scan done, and then they put a scope inside my stoma to see what's going on. I have no colon or rectum, so the inflammation and ulcers must be Crohns. No scarring or stricturing, and no fistulas or granulomas, but given my previous diagnosis Crohns is the most likely culprit. As I've learned, even when the diagnosis is UC there is always a chance it's really Crohns Colitis because CC can sometimes look exactly like UC and without any other kind of marker, there's just no way to be 100% certain of a UC diagnosis.

 

[KazT17]

I have been told I have crohns already. The colon and rectum have already been removed. The only thing I ate that was different was cooked cheese, not sure if that can cause a blockage. I didn't need to go the hospital, I just massaged it and drank loads. It eventually cleared. I have just had bloods done but even when I was really ill my bloods came back fine. So it leaves me wondering. I don't want any more scans and stuff unless I really have to. Are you on any meds now then?

Thanks for the info xxx

 

[Hobbes650]

I have been told I have crohns already. The colon and rectum have already been removed. The only thing I ate that was different was cooked cheese, not sure if that can cause a blockage. I didn't need to go the hospital, I just massaged it and drank loads. It eventually cleared. I have just had bloods done but even when I was really ill my bloods came back fine. So it leaves me wondering. I don't want any more scans and stuff unless I really have to. Are you on any meds now then?

Thanks for the info xxx

Yep. In May I started taking Pentasa, Entocort and Prednisone. Tapered off of Prednisone in August and then within one week flared up again. So back on Pred and stopped taking Entocort. Also added Azathioprine. Once I'm off of the Pred, If i don't flare up I'll be taking Azathioprine and Pentasa as my maintenance drugs. If I do flare up then I'll go back on Pred and start taking Humira. Blood tests can be a lagging indicator- meaning that sometimes the inflammation starts developing and won't show up on a blood test initially. But if things are getting better without doing anymore tests, let's hope it lasts. Sometimes it doesn't though and other tests get done.

 

[KazT17]

I couldn't tolerate any drugs, even infliximab, so not sure what they would do. I hope you can get to and stay in remission xxx

 

[Hobbes650]

I couldn't tolerate any drugs, even infliximab, so not sure what they would do. I hope you can get to and stay in remission xxx

Thanks. I'm kind of spoiled though- had 25 years of no meds and now have to take stuff the rest of my life. But oh well, it beats being sick. What do you take now? Have you tried other biologics? I hear people also getting good results with Methotrexate and low dose Naltrexone, but those two aren't as common yet.

 

[KazT17]

I am on nothing at all. They said wait and see it it rears it ugly head again! Don't know if this is normal for people with crohns colitis. So I am hoping I stay clear. Xx

 

[KazT17]

I have tried azathioprine, 6mp, methotrexate, infliximab. I was on pred with these the whole time, could not taper below 40 mg. Then pred stopped working so I had to have surgery xxx

 

[shalin]

So i am scheduled for total colectomy on feb 26th. they also have to remove my gallbladder. i have been trying to do research for this but i keep finding horror stories and not to many good outcome stories. I understand there is a long recovery and instead of not going to the bathroom but once every week or so i will be going up to 5 times a day once my body levels out. i have been told that right after surgery there is a possability of up to 15 bm's a day. i am told to expect weight loss and a complete change in diet. She also told me that i will only be in the hospital an average of 2-7 days after surgery. Is this really long enough? Are you really ready healing wise to go home that soon? I am scared to death and feel for my spouse. He is so wonderful but I can tell he is extremely scared. I have never had to go through any surgeries besides my c-sections. I was awake for those. My kids are doing ok wit the news, however I am trying to get them to realize how serious of a surgery this is with out scarring them. any advice?

 

[KazT17]

Are you having a j-pouch formed at the same time, rather than an ileostomy? I presume so or you wouldn't be talking about 15 bms a day. I was in 8 days after my subtotal colectomy but only 3 after the proctectomy. Just be prepared to give yourself time to heal and make sure the family know this too.

 

[shalin]

they are removing all but 6 inches of the large and then connecting back up. i know that she will not be putting me on a bag. Sorry but j-pouch is a foriegn language to me. she just said until things settle there can be up to 15 bm's a day but once all is settled it will go down to about 5

 

[Hobbes650]

they are removing all but 6 inches of the large and then connecting back up. i know that she will not be putting me on a bag. Sorry but j-pouch is a foriegn language to me. she just said until things settle there can be up to 15 bm's a day but once all is settled it will go down to about 5

Ah,so you're not technically having a "total colectomy". If all your colon and rectum are being removed, then a j-pouch can be an option- it's made from your small intestine and replaces the job your rectum did. But your surgery is going to be pretty similar- you'll go to the bathroom a little more often (but you'll have control), and you may have to take some fiber supplements. I hope this works out for you!

 

[Hobbes650]

So i am scheduled for total colectomy on feb 26th. they also have to remove my gallbladder. i have been trying to do research for this but i keep finding horror stories and not to many good outcome stories. I understand there is a long recovery and instead of not going to the bathroom but once every week or so i will be going up to 5 times a day once my body levels out. i have been told that right after surgery there is a possability of up to 15 bm's a day. i am told to expect weight loss and a complete change in diet. She also told me that i will only be in the hospital an average of 2-7 days after surgery. Is this really long enough? Are you really ready healing wise to go home that soon? I am scared to death and feel for my spouse. He is so wonderful but I can tell he is extremely scared. I have never had to go through any surgeries besides my c-sections. I was awake for those. My kids are doing ok wit the news, however I am trying to get them to realize how serious of a surgery this is with out scarring them. any advice?

Length of time in the hospital really varies, but the amount of time you mentioned does not seem unreasonable. At first you'll experience some weight loss- we always do after surgery. But then you'll recover and you'll be able to gain weight. How long that takes varies. Once you've recovered from the surgery your diet comes back to normal pretty quick. You'll probably need to add some fiber supplements as your output will be looser than your used to. You'll also want to stay hydrated. You may not actually feel thirsty, the lower level of hydration will make you tired. Easy enough to fix though. Without the colon though, you won't absorb salt or potassium well like before, so I like to add some Lite Salt to my juice drinks. Lite Salt has lower salt than normal, but adds in potassium so you get both. I also like to keep some small water bottles handy when I go out. Surgery is always scary, but once your home you'll be feeling pretty normal, just not as strong and that comes back. You'll be feeling so much better though, you may push yourself by accident and need to rest more. But you'll get there.

 

[shalin]

hobbe650 thank you for the insite and the advice. i do have my mom coming to help with things once i get home from the hospital. my kids are excited about that. my husband is happy about it as well. this way i wont be home by myself right away.
once again thank you for your words.

 

[shalin]

I had my complete colectomy without bag about 13 days ago. I feel better than I did before surgery with the stomach pains. The only pain I really have is the surgery site. I am eating more a day than i could before surgery. I am very greatful for all the advice and support of everyone before I went in. I do realize that it is fresh and I am still healing but I have a posotive outlook on the way my life is going now. They removed my whole large intestine and thank God that my rectum and anus was in great condition. This is the reason for them being able to reconnect my small to the rectum area. I have a great surgeon who didnt just stop to check on me like a quick visit but she actually sat down asked questions and then asked me to explain my day in my own words while i was in the hospital. That was a great way for us to comunicate. My nurses were awesome.
They were very helpful and when I had a bad day they were there for me through it all. I had only one bad one and she was taken care of by her superior. I had a 10 day hospital stay and the first 8 days were not pleasant but things are beginning to become in for a smoother ride. I have great family and friends helping me at home while I am healing. You really find out who your friends are during things like this. And the Church has been a great support as well. Even though I do not go weekly they were there for me and my family.
Thanks again for listening to me and all the support.

 

[KazT17]

That's great news, so pleased to hear you are doing well xxx