5 weeks post-reversal

[Rebequita]

I had my Ileostomy takedown about 5 weeks ago and I'm struggling. My stools are solid and well-formed but I experience constant clustering and extremely painful bowel movements. In fact I'm sore all the time. It feels similar to how it felt toward the end of radiation, that 'razor blade' feeling. Has anyone else experienced this? I've tried tracking my diet but can't seem to find any trends or triggers. Imodium doesn't seem like a good option since I don't have diarrhea. Should I try an enema? Help. Any advice or suggestions are welcome. Thank you.

[teachpdx]

You can search for threads on post reversal. There are many. You are very early in your process and a huge dose of patience will be necessary. Sorry for your pain. I'm 3 years post and still have occasional clustering and don't always know why. Cooking and carbs are your best friends.

[Rebequita]

Thanks. I read through the reversal thread but didn't see anything that reflects my experience. Thought I would post and see if anyone had any advice on the pain. Your point on patience is well-taken. Thank you.

[khadars]

I had all of the above that you've described.

The only thing that helped was time. I've seen a lot of board members use colace. This seems to help with keeping the stool moving through your colon. Often times, after ileostomy surgery, the colon is confused after having been disconnected for so long. It sort of tends towards constipation. Using colace regularly throughout the first couple of weeks may help you avoid clustering, and stool that looks like rubber pellets.

Hang in there!

The burning feeling is probably your anal sphincter having a heck of a time passing poop after having been 'relaxed' for many months.

[Buckeye]

I had my reversal on January 26th . So I am a little farther out than you . First for clustering I take sugar free Metamucil. i have solid stools and take it with a probiotic called align. I do still have some pain when I go a lot with clustering and have to wipe and strain more. I use wet toilet tissue and put a cream on my bottom every time I go and it seems to lesson the pain. Hope this helps a little bit. It does get better , I noticed a difference about every two weeks or so .

[Rebequita]

Thank you for your responses. I started Metamucil and Align this morning and am hoping for some relief. I'm also back on the BRAT diet until there is some improvement.

How many times a day do you take Metamucil?

[Buckeye]

Start with one time a day after your largest meal for two weeks . If no improvement then take twice a day mornings and evenings. Make sure to drink plenty of water.

[Jachut]

It sounds normal to me - par for the course. You can try to manipulate diet and such but I think the only real fix for it is time. It does pass, but the first six months or so post reversal are no fun at all. Hang in there.

[MaryannW]

I am 7 weeks out and have the things you describe. Multiple BMs leave the butt very sore. Yesterday because I ate onions I clustered from 5am-9am with about 12 BMs. I don't have diaorreah so these movements were very painful - firmish and well formed, and I'm sore and sorry today. I eat lots of soluble fibre and take Metamucil morning and night. I eat small portions and keep very well hydrated. I'm doing all the right things but agree it's time that will improve things. On the bright side I'm not incontinent, can sleep through the night mostly and the urgency is subsiding, I'm able to hold it a little longer than when first reversed. It's slow improvement but improvement nevertheless. Patience is the key.

[JudeD59]

I'm 3 1/2 months out from my reversal and still having the same issues. My stools have been formed since right after surgery. They aren't hard or super large, I use cream and baby wipes and a bidet, I don't strain because I also have hemorrhoids that will be worse if I do, but I still end up with an aching bottom often. Even on the good days when I only go 4-5 times during the whole day, my butt gets sore and irritated. I have an appointment with my surgeon next Tuesday and I'm petrified of the rectal exam and sigmoidoscopy I'll have to have done that day when it's all so sore already. I don't know if it's mostly from the hemorrhoids or if I have tears down there or if it's the scar tissue from the radiation, but it does feel like broken glass trying to pass at times. I know that I have really thin, sensitive skin everywhere on my body, so some of my issues "down there" might be because of that, too.

I will say that at first all the days were bad days and now I'll have a couple of good days every week when my stomach doesn't ache like I have to go all day long and I only actually go 2-4 times. The problem is the unpredictability. I can't plan things because I don't know that it's a good day until the day is over. And although I have been keeping track of what I'm eating, I can't find any pattern. I can eat and drink the exact same things on two separate days and have vastly different experiences. I've read a lot of reversal experiences on here and many have a certain time of day when their clustering happens like during the night or all evening long. Mine doesn't follow a schedule and can happen at any time of day without warning.

One thing I would recommend, if you can afford to buy one, is a bidet. I have the Kohler seat that you buy separately and attach to your existing toilet and it has been very helpful to me, but there are less expensive bidet setups. Not only has it helped by cleaning the area so it just needs to be patted dry and by soothing the sore area with warm water, but as weird as it sounds, it works kind of like a mini enema when the stool doesn't want to come out. Instead of turning it on when I am finished, I turn it on while I'm trying to pass the stool and the warm water shooting in and around that area helps loosen stubborn poo so it comes out more easily. A sitz bath that fits over your toilet seat can also be helpful in the same way and cost less than $15.

I don't have diarrhea either, but I still take half to a whole Immodium at bedtime and that sometimes works for me. It seems to slow everything down so that I have fewer and larger movements instead of many smaller ones. At that dose, it doesn't block me up or make my stools hard. Since I don't have accidents, I've found that not going when I feel like I have to go also helps. I try to wait for as long as I can so the stool can build up and stretch out the new "rectum/holding tank" and then when I do go, it's more productive and it reduces the clustering. I know all surgeons have different advice, but mine told me Immodium wasn't just for diarrhea. He told me I could take it if I was having clustering and my butt was starting to get sore and also if I wanted to go out somewhere for a few hours and not worry about having to sit in a public bathroom waiting for my body to take care of business. Since I generally lean more toward constipation than diarrhea and because I'm sensitive to medications, I find the lower dosage usually works for me. I would only take the recommended dosage of two pills if I was having actual diarrhea.

When my butt does get that awful soreness, besides putting the cream on it or taking a warm bath, I've also found sitting on a heating pad or putting an ice pack on the area helps. I prefer the heating pad and use it almost every day, but sometimes the ice pack is good for reducing any swelling from hemorrhoids or whatever might be irritated and swollen.

I hope this helps and I hope that you turn the corner and see some real improvement soon.

Judy

[Maggie Nell]

*bump*

[AbbyDoo]

What a pain in the azz.
It just takes time. Your bad days will get farther apart you,just have to measure your progress in weeks not days. Five months was a big turning point for me. Imodium has been a big plus for me in slowing down the clusters even thought I did not have loose stool. My surgeon recommend not to use Metamucil and try to keep it natural. I do eat yogurt daily and that's about it.
I'm affeared of fast food and stay away from msg.
Hang in there it just takes time.