A website for discussions about any type of cancer, including lung cancer, breast cancer, prostate cancer, laryngeal cancer, leukemia, lymphoma, multiple myeloma and others
+ Reply to Thread
Results 1 to 11 of 11

Thread: temporary ileostomy

  1. #1
    New User
    Join Date
    Oct 2005
    Location
    portland, oregon
    Posts
    2

    temporary ileostomy

    I had a lateral anterior resection 6 weeks ago and am having a reversal of the temporary ileostomy in 2 weeks.
    What can I expect my bowels to be like after the reversal?
    From what I hear, I will be living in the toilet.
    Can anyone give me some positive input or is it all negative?

  2. #2
    Regular User
    Join Date
    Jul 2008
    Posts
    10
    Hi,

    did you get advice on what to expect? I just had a stoma reversal and am finding it very difficult.

    Thanks.

  3. #3
    Moderator Top User
    Join Date
    Mar 2008
    Location
    Houston, Texas
    Posts
    592
    It wasn't too bad for me. The worst was waiting for things to get working again so I could go home. That took several days. The colon takes a while to wake up after you have been knocked out.
    10/01/07 - Removal of Colon Cancer Tumor & Temporary Colostomy
    11-07-07 to 04-09-08 FOLFOX and Avastin. 04-28-08 Colostomy Reversal
    June 2009 3 Tumors in the Peritoneal tissue- FOLFIRI and ERBITUX.
    11-25-09 Tumors inactive(Oct). Finish FOLFIRI, continue ERBITUX
    Jan 2010-May 2010 FOLFIRI and ERBITUX.
    June 2010 Cancer in Liver. Nov 2010 - Oxyplatinum, Avastin and IROX
    Age Diagnosed 40. Current Age:44

  4. #4
    Regular User
    Join Date
    Jul 2008
    Posts
    10
    What did you experience?

    I got out of hospital a couple of days ago, and seem to be experiencing diarrohea and urgency to use the loo, which I know is the norm.

    How long before you got some form of "normality?"

    And any advice you can give?

  5. #5
    Moderator Top User
    Join Date
    Mar 2008
    Location
    Houston, Texas
    Posts
    592
    I was pretty normal from the start. I didn't go much at first because it took about five days for my colon to wake up and start working. I didn't start eating solid foods until the 3rd or 4th day after surgery. I was in the hospital for 6 days.

    Even being normal, I did run to the bathroom every couple of hours that first week after I got home. Three months later I've been going about 2 or 3 times a day, but movements are small. My colon shrunk a lot those 7 months I had the colostomy so I guess it can't hold as much.

    My colostomy was about 20 inches up my colon, so most of my colon was still working that 7 months I had my colostomy. I believe that with an ileostomy, all of your colon is not doing anything. So it may be a while before your colon gets 'normal'.
    10/01/07 - Removal of Colon Cancer Tumor & Temporary Colostomy
    11-07-07 to 04-09-08 FOLFOX and Avastin. 04-28-08 Colostomy Reversal
    June 2009 3 Tumors in the Peritoneal tissue- FOLFIRI and ERBITUX.
    11-25-09 Tumors inactive(Oct). Finish FOLFIRI, continue ERBITUX
    Jan 2010-May 2010 FOLFIRI and ERBITUX.
    June 2010 Cancer in Liver. Nov 2010 - Oxyplatinum, Avastin and IROX
    Age Diagnosed 40. Current Age:44

  6. #6
    Regular User
    Join Date
    Jul 2008
    Posts
    10
    Thanks.

    That's the same as me - hospital for 7 days, didn't eat for about 4 days after surgery so didn't go to the loo much, but been going a lot since I've come home. Luckily the bathroom is right next to my room!!!!

    I had an anterior resection, so I do know that some of my rectum was removed. I'm really worried that I'll always have the problem of not being able to hold it for very long and how that will affect my life.

    But I am hoping that 8 months of having an illeostomy is not long enough for my bowel to be very slow, etc!

  7. #7

    RE: Post subject: Re: temporary ileostomy

    Goldie,

    I had a LAR with temporary ileostomy. For both the orig surgery and the later ileostomy reversal, I experienced about what REB did: it took about 4-5 days for my system to "restart".

    In my case about 75% of my rectum was removed. Accdg to my surgeon, this has unavoidable impact on elimination function, whereas colon resections "higher up" do not necessarily impact elimination. Surgeon told me improvement would likely require years, not weeks or months.

    After my ileostomy was reversed (Oct 2007), I experienced many post-LAR effects such as it appears you have heard about. Yes, a lot of time in the bathroom: instead of 1-2 "BM"s a day, I'd often have 20 or more, usually quite small. Anal pain/bleeding would often result. Also sleep disruption. I would often hope for a large BM to occur (instead of constant small ones), and if/when one DID occur, it was often quite painful. Anal/sphincter area would become painful/sensitive to the point that passing even a tiny, tiny bubble of gas would be very uncomfortable. Etc etc etc.

    I was glad to be alive, but was sad that my QOL had been more affected than I had been led to believe. I almost wished I had had a permanent colostomy instead. I was very frustrated by inability of my Dr.s to help w these symptoms; they just kept saying I needed to give it more time, up to 3-4 years. They did encourage me to "experiment", and see what things worked. I watched my diet carefully, kept a diary, did experiments with Immodium and a variety of laxatives. Immodium could provide a day or two of relief (e.g. no BMs at all), but I would have to "pay the price" for that relief later.

    Nothing seemed to work, at least not well/reliably enough. Until a couple months ago, when I had a very substantial improvement!

    In my case, here are the main things I learned, which I think helped alleviate my discomfort and eventually promote some improvement. I think these things would most likely apply to you, too, if you are experiencing high frequency of small BMs, which lead to pain in sphincter/anus area.

    (1) Use cottonelle baby wipes instead of normal TP. Softer, pre-moistened => gentler, less friction. Also facilitates good cleaning.
    (2) If anal area is painful/bleeding, I use Aloe Vera gel with Lidocaine added, but no alcohol. You can find such near Suntan/Sun-burn lotion area of drug store. I put a dab of this on a Kleenex, and use that for "final"cleaning. It is soothing and provides some topical pain relief.
    (3) Sometimes the pain was severe. I got my M.D. to prescribe Delotid/hydromorphone (a morphine derivative). Lesser drugs such as Vicodin just were not enough. But when I had extreme pain, a 2 mg Delotid pill would usually provide enough relief that I could get a night's sleep.
    (4) After much experimentation with Immodium and various laxatives, I finally found that -- for me -- MiraLAX (an osmotic laxative) works best. It is a mild laxative that can be taken every day (if needed), and which usually requires 2-3 days in a row before taking effect. It seems to have the effect of "keeping things moving" in a normal/good manner.
    (5) Finally, AND MOST IMPORTANTLY FOR ME, I found that I MUST avoid all forms of NUTS and SEEDS. Of course, these were on the "No No" list during chemo/radiation/ileostomy, but I had (wrongly) decided that I could indeed eat nuts with no bad consequence. (I love roasted mixed nuts.) I did notice that they could contribute to especially-painful BMs when passed, as the nuts result in a gritty/sharp-edged residue. But I was having painful BMs anyway, and I love nuts, and I thought that once they had passed there were no further consequences. It took me many months to realize that just one serving of nuts could cause days, maybe even weeks, of continued BM difficulties. Once I gave up nuts/seeds altogether, THAT is when I experienced significant improvements. (It was about the same time I started using MiraLAX, so improvement was probably due partly to both.)
    (6) I also learned to avoid eating large quantities of chips/crackers. In large quantities, the waste from these is similar to that of nuts: gritty, sharp-edged.
    (7) If having a series of small, difficult BMs, I found that changes of body position can help. I have read posts on other LAR sites that others have found such "toilet gymnastics" can be a little helpful. Two that work best for me are: (a) lower head, raise buttocks - repeat; (b) lean way back, with area near tailbone pressing hard against the back of the toilet seat.

    I hope you are doing well. Let me know if there is any other info I can provide that might be helpful to you.

    Bob in N. Calif
    Bob, N Calif

  8. #8

    Ooops, a couple more things

    Forgot to mention:

    I fold the Kleenex twice when using Aloe, to avoid "poke through".

    Surgeon had initially recommend a "mild" laxative, specifically Milk of Magnesia. I took me months to realize that Milk of Magnesia was an ESPECIALLY BAD laxative for me. In small quantity it just made elimination more difficult, in that the greasy/sticky stool was difficult to expel. In larger quantities it would produce a large/messy/violent BM.

    Next I tried "Senna", which is sort-of a "reverse Immodium": it works by stimulating peristalsis. But despite repeated use, I don't think it actually ever had any noticeable effect.

    The skin on the back of my hands got in bad shape, due to washing my hands 20-30 times/day. Use lotion if washing hands a lot.

    I ran across an interesting medical term on one of my web-research sessions, which describes what had been one of my most common symtoms: "tenesmus".
    Bob, N Calif

  9. #9
    Regular User
    Join Date
    Jul 2008
    Posts
    10
    Thank you!!! That really helped me!

    It's been an absolute nightmare!! For a couple of days I only went a few times in the day, and I got so excited thinking "oh my God, it's starting to get better" but no, it went crazy again!

    I have days where I go only once or twice, but those days my belly looks huge by the end of the day, and I usually take peppermint tablets to help things moving again. Although I like it when that happens, as it means I don't go all the time, I do look huge, and it can get painful! So I don't know if I have the issue of things not moving along properly, or things moving too fast! And hence don't know if I need laxatives or the opposite of laxatives (whatever they're called!)

    It's quite frustrating when I have to go often, and it's embarrassing when you're around people who don't know anything, as you have to keep going.

    To help with the pain that develops when I go often, I started using baby wipes which made it so much easier. Using toilet tissue (even the so called "soft" ones) was sore. I started using metanium as well. Its a baby rash cream, but it helped so much with the pain.

    By the way, when I have those days where I hardly go, I seem to have mucus come out when I pass gas, did you ever have that problem? I'm going to see my doctor soon to see what he advises.

    I haven't made many changes to my diet, so perhaps that could be a problem, I'm not sure.

    I have been able to hold it, but not for very long. But what I do is hold it as much as possible when I feel I have to go. I'm also trying those exercises you suggested.

    Thank you again!

  10. #10

    Re: temporary ileostomy

    Hi Goldie,

    I'm glad I was able to help. I was very frustrated at relative lack of medical advice on how to reduce the symptoms. And, although it is not "good" for either of us, it is nice for me to know that at least someone with similar surgery has had similar problems.

    Such a pleasant subject to talk about, isn't it? lol
    But it is real, and we do need to talk about it, without trying to be too circumspect.

    Yes, I noticed many strange sensations, especially after pain had developed. Gas didn't "move through" normally, and it often feels strange when it does. I didn't have mucus, but sometimes there was some fecal residue in there, and the gas helped move it out. Maybe your mucus is due to being relatively soon after surgery? or due to one of the medications you are taking? I had heard that radiation-induced enteritis can cause/complicate symptoms such as ours, but my gastro-enterologist says my 1-year-later colonoscopy shows no sign of any lingering radiation problems.

    Also, sometimes when solid waste was moving through, it felt like it was a very strange shape. I eventually concluded that this was usually after eating nuts/seeds.

    Just to remind you of "the bright side" of things:
    Things get better, but it takes a long time... months in my case, and my surgeon had said it could take years.
    Watch what you eat, and what happens later. Watch out for foods that make things worse. Try to find foods that help keep things moving.
    Go ahead and experiment a bit, to see what works best. For me, when things are moving like they should, Miralax works best. When I'm not all "backed up", but I can't afford to be surprised (e.g. when I go into the office), I sometimes take Immodium beforehand, to slow things down.

    With the benefit of hindsight, I think when I was at my worst, I had like 6 or 7 different things/symptoms going on, and the net effect was awful. Over time, symptoms started going away one by one, and now I'm down to just two symptoms; and I can use Miralax to influence which of the two symptoms:
    (1) A tendency for things to move a bit too slow, resulting in eventual difficulty expeling the hard solid waste. It's like extruding a rope that never ends. Too many trips to the bathroom, and sometimes pain can develop. But I've learned to start taking Miralax when this is happening.
    (2) A small degree of "fecal incontinence", they call it. I call it dirty underwear. Is usually worse after taking Miralax, because that softens the stool and makes it easier to escape on its own. Usually happens to me when I'm working/concentrating on something, and don't notice the sensation that I need to go, or am trying to ignore it. Also can happen at night.

    Ugh. Pleasant.

    But life is MUCH better for me now than it was a few months ago.

    I hope your improvements come soon! Hang in there, girl!
    Bob, N Calif

  11. #11
    Hi
    I found this forums last night and found it really helpful.

    My mom got a rectro-viginal fistula from hysterectomy. Then she had a temporary ileostomy for 12 months. During that year, we were hoping that the fistula would have closed on it's own but unfortunatly it didn't happen. Even with the ileostomy, she was still passing a lot of mucus throught the rectum. The Dr. said that becuase the colon hadn't been using for so long, so it was kinda inflamed. I'm not sure if anyone here had the same problem. My mom was asked to take a medication called short chain fatty acid enema which is sth really new. According to what the dr, it should help improve the inflamation, but looks like it doesn't really work on her. by the way, the medication is really expensive and the government doesn't cover it at all. it's $80 canada dollar per week.
    She got her fistula repaired 3 months ago and had her ileostomy reversed a month ago. Right now she's having 20 more BM everyday and it doesn't look like it's settling down. She's still on the short chain fatty acid enema, but i think she's going to stop using it next week since it doesn't really help. The surgeon adviced her to take some immodium but she doesn't what to get constipation she didn't have a try yet. She can't go anywhere and is really upset. Also she is losing weight probably becasue the nutrients don't get a chance to be abosrbed because they just move down so quilckly.
    My mom is a 51 year old women and i'm a university student. She dosn't speak english so i have to be with her all the time. I can't say that i'm experiencing what she's experiencing, but i really understand it's a real pain, for the whole family.
    we are going to see the dr. next week and i will keep updated.

    Hope you all get better.

 
+ Reply to Thread

Similar Threads

  1. Celiac Plexis Nerve Block (temporary, permanent) Advice
    By atantnc in forum Pancreatic Cancer Forum
    Replies: 7
    Last Post: 08-01-2012, 07:06 PM
  2. Replies: 29
    Last Post: 08-29-2011, 03:11 AM
  3. post ileostomy take down.
    By judway in forum Colon Cancer and Rectal Cancer Forum
    Replies: 1
    Last Post: 04-02-2010, 03:42 AM
  4. Ileostomy take-down
    By mm66ny in forum Colon Cancer and Rectal Cancer Forum
    Replies: 1
    Last Post: 01-13-2010, 01:35 PM
  5. Temporary Seed Implants
    By killgall in forum Prostate Cancer Forum
    Replies: 0
    Last Post: 04-30-2005, 11:28 AM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts