ileostomy reversal

On 3/3/2008 Waunema wrote:

Hi there,

I was diagonsed with stage 3 rectal cancer and had the typical treatment: 5 weeks of 24/7 chemo through my port along with radiation, then surgery to get an ileostomy and then 4 additional months of chemo and then an ileostomy reversal on 2/8/08. I am now experiencing everything that you all are talking about...clusters, painful shooting pains in my rectum right before I have to go and sometimes just for no reason at all as well as anywhere from 5 to 20 BM's a day. I am in my 3rd week of recovery and have had 3 good days, then was in bed again all this past weekend. When will some of this subside and allow me to leave the house for even 2-3 hours/ I have 2 small children (5 & 6) and am a 36 yrs old female. Any advice is welcome! I will speak w/ my Colorectal surgeon on 3/13 about taking metamucil, that sounds like a God-send. Thnx in advance, Waunema

Hello Waunema!

What sort of surgery did you have?

I had ovarian and uterus cancer which involved 4 tumours, 2 0f which where on the back of my uterus and had grown into the back of my rectum. I had to have a hysterectomy and my ovaries removed plus cervix and half my rectum and some bowel. I had to have a temporary colostomy bag for 2 years while I had chemo and radiotherapy. last nov I had a colostomy reversal and while that healed up I had to have a temporary loop ileostomy. I had that for 3 months. I had my reversal on 4th of Feb 2008. I am now in 4th week of recovery and it has been very hard work getting used to going to the toilet in the normal way again.

I have started keeping a chart of how many times I go each day. It is anywhere between 8 and 16 times a day at the moment. I'm sure it was a lot more in the first week when I got home from hospital. I felt like I was living in the bathroom and wished I'd not had the reversal!

The first week I had to go a few times during the night but that seems to have worn off now and I can sleep all night. Though I still feel as though I am not fully asleep as I am worried about having an accident during the night...but I haven't. 

I think things are starting to settle down a bit now though but I have felt very physically tired. Its amazing what muscles you have to use when "going"! I have started feeling dizzy the last 2 days probably from all the toilet visits and because I dont drink enough fluids. As we all know we are supposed to drink about 8 glasses of water a day but I know I never do. Sometimes only drink 1 or 2! Which is not good at a time like this. Ive never been good at drinking loads of fluids, I never feel that thirsty! I made myself drink 7 glasses of various fluids today and I do feel a lot better already. The dizzyness I woke up with this morning has definately gone.

I have been using milk of magnesia liquid as I have been having constipation and it had definately helped to ease it. I have not had a problem eating salad. But when I had some cups of coffee for the first time in ages it gave me the worst wind ive ever had. It was quite painful coming out of my poor old half a rectum! Worse than the BMs! 

The first week after the op, I thought I would never be able to leave my home ever again as I was permanently on the loo, but there is only so much daytime tv I can watch, so eventually I have ventured out to go to the shops with my sister. I had to dash to the toilet a few times while there, which is not great as there is always a queue for the loo in ladies toilets in the UK, but I have not had any accidents while out yet. I wear pant liners just incase!

I find I feel better if I go for a walk. I feel worse if I sit on a hard seat. I think it presses against me and pushes the rectum upwards and makes me feel like I need to go to the loo. I am sitting on a big pillow at the moment...much more comfy!

I have read all sorts of stuff about it taking over a year to get back to anything like normal toilet habits, but I am hoping it wont take that long. I definately feel more optimistic this week than I did 2 weeks ago. 

Hello there - Thank you so much for your reply. I had my surgery almost the same time you did, Feb 8th. My initial surgery on 8/10/07 also removed a lot of my colon and 1/2 of my rectum. I had the ileostomy for 6 months during my final round of chemo and then on 2/8, I had the reversal. I am experiencing much the same challeneges you are. I feel that I will never leave the house for longer then 3 hours! I have also heard and read (which maybe I shouldn't) that it has taken people 12 to 18 months to get any sort of continuity...I will lose it if it takes that long.

Are you also in your late-30's, early 40's? I am so sorry to hear all that you have been through, but it seems that you are recovering as best as you can. Some days I go 5 times and am fine, while other days I have been (literally) bed-ridden and am going 20 times a day...the pressure has caused a fissure, that is explosive when trying to have a BM or pass gas. I am now on 1/2 a vicodin w/ 3 stool softeners - every OTHER day. I am also using Calmophine cream and a 1% hydrocortisone to alleviate the fissure and pain. Sometimes the pain in my rectum right before a BM is so severe, it catches my breath. The only pain I can relate it to is the pain of a contraction, it is that severe in terms of me having to stop whatever I am doing and breathing threw it. I hate to take any pills and was hoping my body could recover on its own...but I think I need a little bit of help right now, esp since the radiation was focused right on my bottom and the lining of the rectum was literally obliterated through that process.

It has been a difficult journey...the cancer, the treatments, the surgeries and now when I am finally at the end of this journey...this difficult recovery is happening. I am trying to keep positive about it, but sometimes, when I am on the toilet again for the 18th time...the positive energy just is not flowing. Please keep me posted on your recovery, as it is good to know that there is someone else that had the same surgery that I did at almost the same time and that you are a female.

I hope to continue getting better and hope since I am young, that my muscles aren't too lax and can readjust to everything to make it a bit less stressful on my body I realize it has ONLY been 4 weeks...and hope to get better each day. I'm not always sure what to expect with each new day, some days are better then others, hopefully there will continue to be more better days then bad days.  Talk again soon, Waunema

Hello Waunema, hope you're doing ok.

I am 38. Was diagnosed with cancer when I was 35. Was originally being treated for Endometriosis by my gynaecologist. Wherever I had "clumps" of endometriosis, there grew the cancer! 4 primary tumors. 1 in my uterus, 1 in my ovary and 2 on the back of my uterus growing into my rectum. I had period type pains all the time, bleeding, gunge pouring out of me and rectal pains that got really bad the last 4 weeks before it all got discovered. I don't have any children, but wasn't planning on having any, so not too sad about that and I definitely don't miss my periods!

Its been about 7 weeks now since my ileostomy reversal. Still feeling quite crappy...ha-ha! Seem to have constipation most of the time. It feels like I'm sh---ing bricks...no joke! Was awake till 3am last night, my rectum felt like it might burst open. It is so tiring feeling like you need the toilet all the time. My shoulders and neck are aching from the stress of it all and don't really feel like i get any proper sleep. I don't know what its like to have contractions (as in giving birth) but I too have abdominal contractions nearly every time I go to the toilet. I am trying to drink more water and I eat Bran Flakes! Though sometimes I think that Bran actually bungs me up! I should do some exercise really, but I'm chronically lazy. I spend far too much time sitting down and traveling everywhere on buses or in taxis.I was far more active when I was a child. The older I get the lazier I get.

Am hoping to get a new complimentary therapist recommended by my cancer support group. So am looking forward to that. You should definitely try it. I have been using C.T for the last 4 years since before I had cancer. Was using it to ease period pains and get rid of stress and it worked for me. I highly recommend reflexology, indian head massage and aromatherapy. Any sort of massage is good for you, it helps you relax...which can only be a good thing when you get told you have cancer and have to endure all the treatment!

I have something called a RADAR key which enables me to get into disabled public toilets. They are sometimes more pleasant than the normal public toilets in this country. 

I have been able to get out and about ok now. I went to Manchester city centre with some friends to look round the shops. Was still worried about where the nearest public toilet was though! Thankfully I discovered some in an area where I never knew there was any. But it's not much fun always wondering where the toilets are every time you go out.

I went out today to a big posh garden centre/shopping complex to attend my cancer support group comittee meeting. I am the new assistant secretary!

I didn't discover my support group until I'd nearly finished my chemo. I could have done with it right from the beginning, especially to help me cope with my parents. My dad has not coped very well with me having cancer. We had our worst arguments when I was in hospital having my first operation. 

I hope you are in a support group! Not everyone likes to be in a support group but I have definitely benefited from being in one.  

My belly looks a mess at the moment. 3 big scars and I look like Ive got a hernia! I will go and see my doctor next week just to make sure I haven't really got one. It looked ok when I had my colostomy, it only went this funny shape after I had the ileostomy. It went even worse after the reversal. Don't think I'll ever be a bikini model ha-ha!

Bye for now.

Kay