UOAA Discussion Board

Hi, I’m writing in regards to my husband who had UC and a precancerous polyps which resulsted in a total colectomy in Oct. He had the take down 3weeks ago and recovery is not going so well. I wanted to see if this is typical and if there is any advice. Prior to the take down he was doing well with the bag, working out with a trainer to gain wt back. The take down surgery supposedly went well but then he was bleeding internally and the source was unknown. He lost about 1/3 of his blood. While in the hospital he was having very frequent bowel movements probably about 30-40/day. The first week home it was terrible. He was constantly going to the point, he actually slept on the bathroom floor because he could not make it to the bathroom from the bed and it was so frequent. They then . Prescribed cipro because they think he has cuffitis or pouchtis. The antibiotic drastically helped and cut the bowel movements down so he could at least be free of them for 1-2 hours. However,he still goes probably 20 times and can’t really get out of the house or downstairs long enough to sit for a meal or enjoy any time with others before he has to go again. There has not been much progress since wk 2 and he is past 3 wks now. When he has to go he spends about 30-45min in the bathroom due to the urges to go but very little coming out. He is on Metamucil and immodium to slow it down and bulk it up. At times he feels constipated. He also reports an internal itching and burning mostly at night. Any advice on how to decrease the the frequency and bulk up the stools so when he has to go it all comes out rather than little bits at a time? Any advice on how totreat the internal
Itching? Anyone else have similar experiences and should the frequency decrease? He has no quality of life at this point and See heis getting depressed. Regretting he had the take down and worried for him. Thank you for your advice and help.

Your husband is only 3 weeks post-op. The J pouch that the surgeon created is quite small and needs time to adapt to its new function. Over the next few months, it will be expanding to its full ultimate size and be able to store its contents for a longer time, thus reducing stooling frequency and anal irritation. In the meantime, I suggest that he keep a food diary to see what foods produce the best results. I found that a bidet helped reduce the burning and itching significantly by helping to keep the bottom clean. There are a number of units that attach to your toilet in place of the seat and are not very expensive. You can find them on Amazon and eBay. I ultimately installed a complete bidet in my bathroom. He should also be applying a skin barrier cream after each BM. There are a number of products available, many of which, like diaper rash ointment, contain zinc oxide. Whenever possible, try to keep your husband occupied with activities that can get his mind directed from his problem. One’s emotions are a significant part of the equation. But above all, give plenty of time for his body to adapt to its new plumbing. If things do not work out, there are other options available, but you are not there at this time.

Thank you very much for your reply and advice. We have the bidet which he says does help with the burning. He has been using desitin. I guess it just takes time but wondering in generally how it takes to get more control to hold it. Thank you!

CDC:
There are a few online forums specific to those with a j-pouch which will give you/your husband a ready group of people with a j-pouch to connect with.

Here is one forum that has a loyal following:

www.j-pouch.org

There is also a j-pouchers group on Facebook.
Karen

My surgeon back in 2010 after the completion colectomy told me to use A &D ointment (it is skin protection and for babies) around the rectum for irritation and like SX your husband is having. it leaves a mark in the underwear that comes out in the wash. I actually switched to using it for my dry skin and have never looked back. Cheap and more effective than the RX creams from dermatologist.

As I understand it, it is normal to experience diarreha post-takedown. This should imorove with time, in fact he should be seeing some improvement by now. Full recovery might take a few months, don't forget, he was not using his sphincter(butt) muscle for awhile. It might help to excercise it, just tighten up and then loosen a bunch of times for several minutes each day.

If the area is raw, I recommend using Aloe Vesta Skin Protectant. It is available on Amazon. I also think you can find it at Walmart. You can check Google too, to see where to find it online. It's from ConvaTec, so as an Ostomate family member, you probably already recognize and trust that name.

I hope that all helps. I hope things are improving for him, I know it is a hard journey. Learning to poo again has got to be he!!.

My stoma, Little Mr Pinkness, sends his love. He is my little pink olive with a little brown pimento.

Tenderly,

San

As a result of my take down, I experienced little to no warning as to when my jpouch is going to empty. I also experience unpredictable gas. It has affected me psychosocially.

That sounds pretty nasty. When did you go from ileostomy to j-pouch?

I've had my ileostomy for 6-1/2 years. My doctor told me I would not be able to have a take-down because I would always have diarrhea. So I have my little guy for good.

If you still have a J pouch, you might want to get a second opinion regarding takedown. Some doctors have negative feelings about colectomy options other than conventional ileostomies. There is an internet group that might have helpful information for you. Its name is the “J Pouch Group”. Two options that do not require having an external bag are the K pouch and the BCIR. You can Google those names to get more information about these procedures.

I had a ostomy reversal surgery two years ago. Every few months I have debilitating pain in my abdomen where my ostomy was. It feels like maybe certain types of food cannot go through that area and causes a lot of cramping. I have tried to track what foods irritate me and the only one for sure is raw onions. My recent attack has lasted three days. I am having bowel movements so I do not think it is a blockage. It seems like there is air bubbles and I have gurgling in that area and when I cough it is painful and painful to the touch. Thank you in advance for any insight or other experiences and what may be causing my episodes. I want to avoid rushing to the hospital due to Covid