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Managing pain and symptoms post total colectomy

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Posted 5/11/2008 1:47 AM (GMT 0)
Hi,

I would love to know how anyone is dealing with the pain and functional problems after having had a total colectomy.  I had a total colectomy with ileorectal anastamosis and have had horrible pain all the time.

I also have problems with eating, having bm's also I get a lot of bile which is very painful.  I also have problems with constipation, yet sometimes I have lots of liquid but its always a strain to pass.

When I speak to my doctors about this, they look at me like I'm crazy - and for one thing they say its impossible to have problems with constipation after having had my colon removed but they dont understand that there could be scar tissue/adhesions and general functional problems

Can anyone relate - any suggestions to reduce pain?

I'm so tired of docs prescibing antidepressants which have no effect on the pain and ultimately make me worse because I have to deal with the side effects without any gain.

Sorry for moaning.  I have nobody to talk to and I'm so frustrated and scared.  I'm scheduled to have and epidural steroid injection however I've been doing research and all the info relates to it helping back pain .... (!?)

 

Posted 5/11/2008 6:47 PM (GMT 0)
I'm so sorry you're having such difficulty and still in pain.

I had all of my colon removed Oct 07. After the surgery my small intestines would spasm when I'd eat. The surgeon gave me Symax Duo. I was afraid I would have to live like that, but after about a month the pain stopped. I guess my intestines just needed more time to heal.

My surgeon did tell me that stress effects the gut. So I tried taking Xanax with my meals and that helped too. I don't have to take anything now. Moving, like walking, and drinking plenty of decaf liquids helps me with bowel movements.

I also take a stool softner with my meals. It seems to help things move along and I don't have painful bm's.

Don't get discouraged. Remember your body is still healing. It has taken me 6 months to feel close to normal.
Posted 5/11/2008 10:07 PM (GMT 0)
Thanks for your support and encouragement.

I would think that after 5 years I should be "healed" and it wont get better from here on especially with scar tissue and adhesions.

You mentioned you take Symas Duo?  Isnt that an antispasmotic?  For me they make me very constipated, sleepy, dry mouth, water retention, blurred vision and dont have any impact on pain at all.  I dont think my pain is from spasm because I've tried Bentyl, Donnatel, Levsin Proban ... and none of them help with the pain.

You're right, stress does effect the gut, both pain and functioning.  I too have tried Benzo's not Xanax though, just Valium and Klonopin but they make me so sleepy which makes the pain feel worse.  I wish they would help to relax rather than that sleepy feeling which makes me irritable and hyper because I want to sleep but they pain wont let me and ultimately feels worse.

Oh boy, I do wish there was some hope ...!?

Posted 5/12/2008 3:02 AM (GMT 0)
I'm sorry. I didn't realize it had been 5 years. In that case your problem wouldn't be from recovery after surgery or spasms.

It does sound like you're having complications from the surgery and the doctor(s) need to address that. I hope the tests will show what is wrong.

I know you must be so frustrated to have gone thru surgery and are still dealing with problems. ((HUGS))

As far as the xanax, I cut them in half. Half of one takes the edge off and doesn't make me so sleepy. The symax is an antispasmotic. My intestines would spasm when I'd eat. But I just needed more time to heal. Now that I'm 6 months out from surgery I don't have any pain or problems.

Again, I'm sorry you are still dealing with this after 5 years post-op. I hope the doctors will be able to find a solution for you.

((HUGS))
Posted 5/12/2008 5:14 AM (GMT 0)
Thank you so much for being so understanding and supportive.  I am so glad to hear that you are doing well now after the initial post surgery pain.  I'm also glad that you managed to find something to get you through that rough time which you need after such huge surgery.

I'm scheduled to have a Caudal Epidural steroid injection on Tues 5/13.  There's no guarantee this will work and I have major doubts and concerns that this shot can work for the abdomen and believe there may be a misunderstanding or miscommunication.  The doc told me about this procedure which seemed practical but when I did research and spoke to a few people they all say that it can only work for pain in the lower back or legs.

I'm so mad at myself - I had all week to call the doc but was too scared and kept putting it off, now I have only 1 day to get reassurance and confirmation that this is the correct procedure for my location of pain.  I hope its not too late.  I"m soooo scared - mainly that it wont work, and of course the pain itself but it would be worth it if the pain was reduced even by 50%.  Anywy, I'll keep you posted.

Thank you so much for being so caring - I really appreciate it and it means a lot to me.

Lynne

Posted 5/22/2008 2:28 AM (GMT 0)

Hello Hopefulalways,

What an inspiring name!!  I had my subtotal colectomy two weeks ago and this is probably my first day without a period of extreme cramps/pain after having three or four bms in a row after eating.  At least they have slowed down as the body is adjusting and hope yours will too.  My surgeon prescribed percocet which I have not taken steadily; however, right after a very painful visit to the commode, I would take some and it did help -- in two ways (I think it slowed down the spasms and well as dulled the pain they cause).  Then as time is going by and my insides are healing, I am not requiring as much.  Also I found that there are certain foods that really can aggravate things down there as follows: fat, full fat ice cream, nuts, high fiber foods.  My surgeon said that I could eat anything I wanted except for raw veges for 4 to 6 weeks.  I have found out, however, that there are few more more things to stay away from during this healing time. It is also good to get a lot of rest even if it seems like you are sleeping too much.  Sleep is very healing to the body. 

I love this forum, because there are so many things I have learned and take into consideration that the docs will never tell you (not sure if it is a time thing or if they really don't know!!).  The best people to consult are those who have gone through it.  I pray that you will feel better each day and experience new victories. 

Sincerely, NFC 

Posted 5/22/2008 6:19 PM (GMT 0)
Hopeful,

How did your tests go?
Posted 6/19/2008 5:46 PM (GMT 0)
After reading all these responses I've come to the conclusion that this operation affects each person differently. I had my sub-total colectomy almost one year ago (July 12), and I find my life is much further from normal than I had hoped. I had quite a long recuperative period - 5 weeks at home, 2 more weeks only part-time at work, and 6 months (and many medication trials and tribulations) before I began to feel sort-of normal again. I think the most inconvenient issue is the number and type of bowel movements I experience as a result of the removal of all but 1 foot of colon. After many experiments with bulking medications, high and low-fiber diets, and other attempted remedies, my GI doc finally came up with a very old medicine called Bentyl. It's an anticholenergic/antispasmodic which basically slows down the digestive process. So now, instead of 20 - 30 movements a day, I only have 8-10 - which sounds like a lot, but is I huge improvement as far as I'm concerned! I still haven't had a "normal" movement since the surgery, and I've kind of come to terms with that. I have no tolerance for high fiber foods - raw veg, some fruits, legumes, some grains. Also out (as mentioned by others) fat (especially in fried foods and full-fat ice cream). In fact, if anyone out there knows if there is a published diet for us folk, I would love to see it.

I don't know if this helped at all, but it might give you a picture of what's down the road. For me, the result is not necessarily better, just different.
Posted 6/20/2008 12:49 PM (GMT 0)

Hello everyone,

It has now been about 6 1/2 weeks since subtotal colectomy, and I'm doing much better.  tongue I've even added a few raw veges (just a few) to diet.  Most fruits, especially grapes and cherries, can be bothersome as well as fats (like you said Marjk).  Overall though I am thrilled to have anywhere from maybe five or 8 to 10 bms per day. If I voilate the diet,  I have more than that, however, there is still a lot of foods I can eat now that I could not hardly eat at all before because they constipated me soooo much.  This truly feels like freedom even if the output is not "normal" and doesn't look like the traditional #2.  I am back to work full time, still have to pace myself since I can get tired, but I know that this too shall pass. 

Wondering how you are Hopeful.

   

Posted 6/23/2008 12:52 AM (GMT 0)
I am a couple days new here, anyways I posted a blog on here called colostomy for constipation/slow motility colon.... anyways I am finding out that there are things that can be done for that problem ie colectomy.... my question is was it worth going from not being able to have a bowel movement to having many... you all must still have the rectal pain that is associated with straining/going to often and stomach issues from trying to figure out what works? I am just trying to understand before I present this to my physician...
Posted 6/23/2008 1:03 PM (GMT 0)
I haven't experience rectal pain, as the movements are all fairly loose, so no straining involved. But have had to deal with hemmorhoids. They usually only flair up when I've eaten something I shouldn't and the old Bentyl isn't enough to control the number of movements. I have a supply of prescription Anucort suppositories for situations like this.
Posted 7/24/2008 9:40 PM (GMT 0)
I had colitis for 25 years. In March 08 I had a total colectomy with ileorectal anastamosis. In mid-June they closed the ileostomy after 3 1/2 months -- my surgeons recommended time for proper healing. The first couple weeks following the procedure I experienced a fair amount of pain and discomfort partly from constipation and a partial blockage at the ileostomy site. The blockage soon cleared, probably as swelling went down. At the time I was taking Vicodin for the pain. I researched online and found that Vicodin can often cause constipation. This seemed counter productive and decided to deal with my pain with over the counter Tylenol.
I am one month after my closure and although things are not perfect I have 5-10 bm/day as opposed to the 20-40 during my colitis days. A huge relief! I still have pain and discomfort during some bm but overall I see a definite improvement from week to week. Next week I am doing something I should have done long ago -- go see a allergist to see if I have any specific food allergies. I am convinced that UC largely stems from the body's allergic reaction to food. Another area I have done some research on is how the body reacts to high acidity levels due to diet. Meat, coffee, soda, alcohol etc are all highly acidic -- do some research on your own and see what you find. You are what you eat and your body will act accordingly. Hope we all get healthy and happy soon!
Posted 8/5/2008 10:02 AM (GMT 0)
I guess I'm a little late to this topic, but I was trying to find out if what I'm experiencing is normal. I had my colectomy done on June 12th this year and I am 21 years old with the genetic disorder called FAP. I still have my sigmoid colon as well as my rectum, so I was told I'd live a normal life. I run track for my college so that was definitely important for me.
After my surgery, it was painful, yet I bounced back rather quickly. I was experiencing liquid stools and it was actually very difficult to control my bowel movements.

Post recovery of which was 2 weeks after the surgery, my doctor said I was basically normal. I've been trying to remain optimistic,but I use the bathroom close to 6 times a day. I try to go less frequently, but it will try to come out as liquid on its own. Anyway, my stools are ofter water like and if not that, just a mass of stool...like a blob. It's embarrassing that I have to use the bathroom as frequently as I do, not to mention, rolls of toilet paper don't last me more than three days.using the bathroom is painful, especially after spicy foods, and I often strain bc it feels like I'm not finished, yet I look and I'm straining so hard that I bleed occasionally. I can't keep weight on...it's a struggle. I was 126 going in the hospital and now I'm at 116lbs. I'm just wondering, has anyone had complete normalcy post colectomy?

I naturally like healthy foods and fruits, so staying away from high fiber is particularly hard for me. If anyone had a laparscopic colectomy, how are your scars? It's painful for me to stretch and also it's still rather numb on my pubic incision.

Please, someone offer good news.
Posted 8/5/2008 2:41 PM (GMT 0)

Karalee

I had a laparoscopic subtotal last September. Unfortunately, I'm no better than I was before so it's starting to look like I'm going back for a total. I'm still living on Miralax.

Maybe it's just me, but I've noticed that a lot of people mention the numerous BMs after having the surgery. That's a given and my doctor told me about that. Didn't your doctor explain that to you? If not, shame on him/her. As far as what to do for it, I've seen people mention fiber supplements. Also, supposedly the small intestine will eventually take on the role of the colon and things will start to thicken.

My scars aren't painful at all. The numbness is normal. The feeling may or may not come back. Good luck!

Posted 8/5/2008 5:17 PM (GMT 0)

Hello All,

This is my first post.  I am very discouraged. sad   I had a total colectomy, laparoscopicly with ileo rectal anastamosis done on 6/30/2008.  I had many post op complications including an ileous which required a NG Tube for four days and no eating or drinking for three weeks. I was in the hospital for 4 weeks. I had this done for constipation and my doctor said  looking at the colon under the microscope after the surgery said it was totally "dead," most likely from overuse of laxatives that I had to use in order to go at lease twice a week.  I was up to 12 a day!  I am still constipated!  Now with no colon after two days without going I am in so much pain! My doctor has me on Reglan, Erythromycin, Lyrica, and Protonix.  Thinking it will stimulate my bowel.  All to no prevail.  I have to take a fleet enema every other day so I wont get backed up again.  I have alot of gas pain and stomach pain, and nausea; I can't take it!  Has anyone experienced this? confused   I go back to the doctor this Friday.  I don't think he can do anything to help me.  He did say he thinks my small intestine might not be working.  Please Help!

Posted 8/5/2008 7:53 PM (GMT 0)

Daer Dnri,

My daughter who is 11 just went through the same thing...she had a total Colectomy on 6/5/08 and after 6 bweeks...no bowell sounds,being NPO,,having an ng tube for over 3 weeks,on tbn/lipids,she could still not go to the bathroom either...they did more testing,and her small intestine bottom prt ,the illeum,is working but not that well,some motility ...they incerted a rectal tube in her and over a 72 hour period we did get results...not a huge amount,but enough so that they thought giving her an illeostomy would work..so on 7/9/08 they went back in and gave her an illeostomy,and for the first time in her life she goes to the bathroom...also in the first s/x they also had to remove most of her rectum,due to a really big stricture from her sub-total,that she had last year...having the ractal tube in for 3 days was not very comfortable,but it gave her drs good info to go ahead and try the illeostomy...we are 3 weeks post and we are having a few bumps in the road w/ hydartion and food absorbtion,but she is going to the bathroom!!!,They say that theses things will work them selves out w/ time,but we have never seen this poopin her whole life!! Maybe you should talk to your drs about it...I will be praying,and keep us posted

Krista & Takera

Posted 8/5/2008 11:27 PM (GMT 0)

Dnri,

I'm so sorry you're still having problems.  Did you have a bm in the hospital before they finally let you go home?  Before your surgery, did you have any tests done on the small intestine?

I'm in the same boat with the constipation.  I'm planning on having surgery after the first of the year, but hearing your story is really discouraging.  I haven't had a bm on my own in 30 years....I take senokot a couple times a week.  Do you mind me asking how old you are?

I'm meeting with my surgeon again in two weeks and I'm going to ask him how common this is for the surgery not to work.  I've been so afraid of having the opposite problem that I haven't worried too much about not going!

Again, maybe it's just taking your system a little longer to get started.  Good luck, and please let us know what your dr. says.

Janie

Posted 8/5/2008 11:39 PM (GMT 0)
hi all, well the only words of comfort that i can give is, that the pain will not be as severe, i had my colon out june 29th last year, horrific, op, ng tube 4 days post op, no food for two weeks, etc... awful. the pain for the first couple of months was hell. I also did feel as if my scars were tight but inside. I had laparascopis surgery too not open, and everytime i moved i felt as if i were stretching my insides too far. The c-section scar, was the same, i had previously had an emergency c-section for the early arrival of my twins so they cut through the existing scar, did have some trouble with that one for a while, but i had my eyar follow up with the surgeon they said i have adhesions, and because of this i am getting obstructions, which thankfully, pass themselves. But i have been put on more meds, and thankfully i am starting to see an improvement in the pain, not a day went by that i have been pain free. But since friday i have been constantly decorating, couldn't do much before. don't get me wrong i do stll get sore but it seems to have changed and got better, maybe medds are finally working. But since surgery I have developed a lot food intolerances, oats, wheat, fibre, many fruits and veg. I miss my old diet of healthy things, seems like i am on a constant atkins diet. Until I see the dietician xxx

Posted 8/6/2008 12:22 AM (GMT 0)
Hi!

To answer your questions, after 2 weeks post op I did have bm's.  For two days I went like 9 times a day, then the ileus happened, then nothing.  I had a barium enema that they cleaned all the compacted stool out and a enema in the hospital then sent home knowing I was not going on my own.  As for my age, I don't mind.  I spent my 40th birthday in the hospital!!!!

Thanks

dnri

Posted 8/6/2008 12:51 AM (GMT 0)
You poor thing.  I know you must be so discouraged, as well as uncomfortable.  I can't believe they sent you home knowing you coudn't go.  Did you have a colon surgeon do the surgery, or a general surgeon?  Sorry for all the questions..

Before surgery, did you have all the tests (sitz marker, defogram, small bowel study, etc?)   Please be sure to let us know what your doctor says.

Janie

Posted 8/6/2008 1:03 AM (GMT 0)

I had a colon surgeon.  I heard one of the "best."  I had all the test done even the defogram which showed no pelvic floor problems, so my doctor can't understand why I am not going.  I really apreciate all the help and prayers.  Thank you and I will let everyone know what happens at my appointment. 

ps I am glad your daughter is going on her own! 

Posted 8/12/2008 11:13 PM (GMT 0)
Hello!

I went back to my surgeon.  He ordered a upper gi for slow small bowel transit.  I might need to have a J Pouch.  He thinks the connection might not be working.  I had the upper gi today and the doctor who did the test said there was a long delay and the small bowel wasn't working well at all.  My surgeon said if that was the case I would need to go to Boston and look into a gastric pacemaker.  I will keep in touch.

Thank You

dmnri

Posted 8/13/2008 12:55 AM (GMT 0)

Hi Dnri,

My daughteralso goes to Boston , she goes to Boston Childrens,and like i have posted before...she has had problems since birth,and after alot of trail and error we had to get an illeostomy on 8/9/08...I had asked about the J-pouch for her ,but her drs said people that have motility problems,do not do well w/ the that ...so ask about that,and maybe get a second opinon...that is why we had to go to an illeostomy...which is still working!!YAY!!! Keep us posted...At least Boston hospitals are some of the best!!

Krista & Takera

Posted 8/13/2008 10:26 AM (GMT 0)

Wow this is very discouraging - I feel for you.  I am also worried like Janiepain - i have been abusing senna for over a year now - my doctor wont give me a prescription for 500 sennas a month anymore, as she said she has to cover herself in case something happens to me (what will happen to me!?). 

I take 12 senna tablets at night and 16 senna in the morning.  It means i can go to the loo to some extent twice a day, but life revolves around the toilet for me.  if i dont go every day i am most uncomfortable, and even if i do go, i can be in pain - also rectal spasms too now.  It is scary to think that one might never get better. cry

Posted 8/13/2008 3:18 PM (GMT 0)

I heard Boston Is the best but I just hate starting all over with new doctors and I am from Rhode Island so it will be a long trip for me.  I am scared the outcome will be a bag.  I am glad your daughter has adjusted to it.  She is a very brave girl.  I have a sickly 8 year old little boy and he is also brave.  I think children has more strength than adults handling illness.

I was also "abusing" senna (My doctor said its not abusing, your doing something you need to do in order to go. Abusing is when you use laxative to loose weight.)  I was taking 14 cascara and senna tea everyday in order to go alittle.  The doctor said he never seen a colon so black and dead looking. So you are heading the same way as me.  The colectomy wasn't a bad thing and I don't regret it.  There is just a long road ahead.  Just hope for the best!  I would consider a colectomy, because the laxatives is a short fix for a big problem and the clectomy might work for you.  No matter what happens to me I would still have needed it.

I feel for you all!

dmnri

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