Irrigation ongoing problems

[ccanfield]

Hello,
I began irrigating in May of 2016 and have had on and off success. I learned all the tricks that are unique to me and I continue to alter my process as needed sometimes ending in frustration. I am not the best candidate for irrigation as I have always had stools on the looser side and have had no real regularity, even before rectal cancer; however I am a high school teacher and irrigation is the only way for me to keep working as I had output while in front of students daily and many times more then once a day. I can't really say it was the answer to my prayers as I am still battling, but I will take it over the other option.

So, here I am ready to try new strategies to keep irrigating so I can keep teaching. I am wondering about going to a nutritionist or dietician to try to work my diet around what works for irrigation and to lose weight as since I started irrigating I have gained 15 pounds. I did go to a nutritionist when I was ready to start irrigating but she didn't really know how to help me other then to tell me to keep the protein coming and take vitamins because I cannot eat fresh veggies or fresh fruits regularly. They go right through me. So my questions is, should I be going to a nutritionist or dietician or is there other healthcare providers that can help? I am very frustrated with going to doctors and such who have no idea how to handle an ostomy patient. Whether its not knowing how to deal with anything irrigation or how to deal with an allergic reaction to the adhesive in my appliance, I cannot find doctors that know much. I would appreciate any suggestions or alternatives to help with nutrition, working up a meal plan where I can loose and keep output down(I still have output in class a couple of days a week, which makes teaching a real problem), allergic reactions to adhesive, and in problems in general with ostomies?

I also self-catheterize 3 to 4 times a day because of damage to my bladder from surgery and am experiencing extreme lower back pain daily (in the process of assessing this problem through MRI and EMG neurology). I tell you this so I can tell you the doctors who I already see as I am looking for new options from the best possible people to ask for advice, ostomates! I see my GI,Urologist, neurologist, general practitioner, and gynecologist. I have also been to the wound and stoma clinic for failure to heal after APR surgery and more recently for help/check up with stoma to find out they don't do the stoma part of the clinic) and of course my surgeon up until this past August when I was finally released. I am open to anything including alternative medicine, any suggestions?

[Murph00]

Hey C,

I fully understand your frustration with regards to health care professionals, ostomies and in particular irrigation. I've become quite familiar with that "deer in the headlights look" when I tell a doctor I irrigate.

It would help if you described your irrigation routine, ie amount and number of infusions, time of day, water temperature. How well do you hydrate before irrigation? Something I cannot stress enough and often gets overlooked is hydration. Are you allowing enough time? What if any meds are you taking? Meds of any kind will have a huge effect your system.

You've been irrigating for just under a year. I can honestly say that it took me well over a year to get a system down that I could call routine. I was forever changing the process as my body was adapting. Others have said it can take as little as two or three weeks to train your body but that certainly wasn't the case for me.

It could be you're taking in too much fluid and your body just can't expel it in a timely manner. My theory is that with the multiple infusions, my body was retaining too much of the fluid I was taking in, which resulted in late returns. Eventually, (3 years later), I cut back to one infusion and reduced the amount, and things improved. Although it still happens on occasion I can usually tell when I'm not quite done.

As for nutrition, sorry, but I can't offer much help in that department. Like you I can't eat allot of fruit or veggies. Ironically I ate much healthier before cancer. Now I'm more of a meat, potato and breads guy, which take a bit more time for the body to process. Finding someone that understands nutrition and irrigation outside of this forum might be difficult, but I would think others on here could offer some sound nutritional advice.

You may also want to consider posting this in the general discussion forum. There's some pretty sharp and informed people there that could also help.

Good Luck,
Murph

[ccanfield]

Thanks Murph

I have been irrigating every other evening around 9pm and using 1500 cc of water. Sometimes I have to do another infusion with about 1000cc of water(like you said, I can tell). It seems to come in spurts of 2-3 months where I have to infuse twice and occasionally 3 times. Then things will work for 2-3 months beautifully with just one infusion.

THe last few days I have been trying every 24 hours thinking it might keep the out put during the school day down, so far I am feeling even more bloated. I think its because my stools are naturally so loose that i need the 48 hours to get some firmness so that it comes out more cleanly if that makes sense. When its loose, it doesn't all come out. So far, i'm not convinced its any better.

I take 2 lomotil a day, one in the am and one about 3-4pm. I also take VSL3 (2 X day). I have played with that by increasing and I seem to sensitive to it as raising it even one capsule makes irrigation challenging. I cannot take imodium because again, I really sensitive to it and cannot even take 1/2 pill without bloating and feeling very uncomfortable. Lomotil has been the answer to my prayers and I am careful to never take more then the 2 a day.

My idea with getting some help with my diet would be to play with some foods (hopefully that are better for me) with advice as I am not an expert on nutrition at all. When I do it on my own it just seems I can't eat anything good for me. I was also a much healthier eater before cancer and am not a meat and carbs girl because its all I can eat (or so it seems). I gain weight eating this way and I don't feel as well in general.

Thanks again Murph

C

[Murph00]

Hey C

The bloating was a very big problem for me too. It would last 4 or 5 weeks then go away for a while only to return again. There were times when I literally couldn't eat from the bloating. It was extremely difficult to keep irrigating but I was determined to try and stick to a routine. It wasn't until I started cutting my infusions and the amount back that the bloating seemed to go away. Our learning curves sound very similar. However I know we are all different. I can only tell you what worked for me.

Can I suggest trying to continue once per day but cut back from 1500 to around 1200. Less is sometimes more. I also don't get too concerned if I don't have good returns for a day or two. I can have a couple of slow days where I get very little output followed by days where I was absolutely full of the stuff. We'll never get it all out but flushing some of it out every day is what affords many of us the 24+ hours of freedom we're all looking for. BTW, my stools are almost always loose.

It sounds like you have a good handle on how your meds effect your routine. I don't take meds on a daily basis so I really can't comment on or offer any sound advice there. Lomitil seems to be a popular drug with many ostomates on this site so hopefully someone with more experience can help you out with the meds.

Your idea of seeking nutritional advice from a professional might be your best option. Unfortunately you're between a rock and a "soft" place. Too many carbs and you gain weight, too much fibre and you're making the dash. Which I'm sure is horrifying for you when you have a room full of students.

I sincerely hope you can work it all out. (no pun intended) It may take some time. Don't give up. Stay Positive!

Best,
Murph

[ccanfield]

Thanks Murph

I'm going to try reducing the water and continue once a day. That would make me happy if that works because less water means less time in the bathroom. Maybe that way, I could irrigate before work instead of at night.

Thank again

C

[ot dave]

Hey,
I know I'm jumping in a little late on this conversation, but I thought I'd add to the thought train!
I'm a daily gator. My stools, pre and post ostomy have and are naturally loose. I've never experienced constipation in my life. For me, the stool/output being loose, made the ostomy active throughout the day. I never felt like I got a break from the output. I'm a pediatric Occupational Therapist, so I understand the frustration of not having the ability to use the restroom when ever you need/want.
Since my output is naturally loose, I irrigate every day, otherwise, I would be having movements throughout the second day. I do 3 infusions of 1500cc. The first infusion gets a majority of the output in the colon out. The second infusion gets any bits that might have been hiding in corners. And, the third infusion is my mop up infusion where I get mostly clear water returns. That is how I know my colon is empty and ready for the day.
I know you said you were sensitive to immodium, which is unfortunate, because I use it routinely to slow down the motility, which works well for me. I do have a prescription for the lomotil, but I only use it on "special" occasions, such as traveling or getting up early to hunt/fish.
I have begun using a slimfast for lunches as I don't really have time to stop for a lunch, a banana for breakfast, then a normal dinner. That has helped me consistently get to 24 hours as well.
I would recommend irrigating in the morning, that way, you have your most empty colon during your teaching hours instead of while you are in bed.
As far as a diet, obviously a balanced one is important, but while you are healing, protein is very important to the healing process....so meats are important.

Try adjusting one thing at a time so you know what it is that is or is not making a difference. I hope I've added to your irrigation tool box and that you can find some answers.

David