Suggestions please!

[Laney47]

I posted this on the reversal forum but it was suggested I post in general and maybe someone will have suggestions:
just joined the forum today in hopes of finding some encouragement from others. I'm the caretaker for my husband. Background is: diagnosed with colorectal cancer in January 2020. Underwent Chemo and radiation and in June was declared cancer free. However, his surgeon took his case before her board for recommendations about whether or not he should do surgery. Our choices: the "wait and see" or do the surgery for an ileostomy followed by reversal once healed. She and the board felt the surgery was the best option to ensure cancer did not return. In June he had the surgery and wore the bag until October 3 when she performed the reversal. He did great with the bag although it took a little time for him to get used to it. Ever since that last surgery it's been a nightmare for him. The constant bathroom trips, warm sitz baths, medications...I cannot begin to tell you what the past 6, almost 7 months has been like. Nightmare doesn't even describe it properly. We've done everything we are told to do. Watching the diet, keeping a log, imodium, fiber, he uses a bidet so as not to wipe. he's tried the enema to keep his system flushed out and clean. He will go two days and feel great, then 5 days of misery. Starts with a solid poop, turns into diarrhea, the burning he is experiencing is horrible. He's tried creams...no relief. Been back to the doctor numerous times, had another MRI only to be told all looked great..in fact, he looks better than any patient she has ever had....but yet..he's miserable. He is working (he's a pool technician) but sometimes cannot make it to a bathroom and unexpectedly "goes" in his pants. We bought him a portable toilet that he keeps in the back of his truck if he feels the urge. Sometimes he doesn't even feel that urge and it comes faster than he can do anything. He's gotten to the point that he doesn't eat now because he's afraid it will start. He's lost almost 20 pounds, he's thinner than I've ever known him and his clothes are falling off him. I'm so upset about this and don't know what to do anymore. We've even sent a request to his dr for a marijuana clinic since medical marijuana is now legal. he experiences pain in his abdomen when this happens also. He said he feels like a cyclone starts in the inside of his butt and once he feels that swirling action he knows it won't be long before he has a bowel movement and he never knows what that movement is going to be like, solid, loose....etc. Last night he called me to show me...his stool was runny and very brownish-orange. I was attributing it to the fact that he ate a Slim Jim and some goldfish crackers but I'm not sure. I just didn't want him to be alarmed. He said the burning inside his anus was the most horrible thing..it hurt to sit, stand, walk..He was walking like a 95 year old man. I just don't understand what the burning is. He does exercises to strengthen the sphincter muscle as well.

I apologize for the length of this post...I'm just so upset that I can't find a way to help him. I read about how everyone goes through something but within months they are having normal bowel movements and he seems so different. I have an appointment tonight with a nutritionist that hopefully can help us with his nutrition. We've kept a record of his eating habits, bowel habits and how he feels for the past two weeks for her so I sure hope she can shed some light on this. I'm at wit's end with his doctor who didn't even bother to call us two weeks after his last MRI. He sent her a text message and her response was, "Let's touch base at the beginning of next week". this was on Thursday.....3 weeks ago. We have yet to hear from her. I'm thinking he needs to go to a different doctor, he needs to get someone who can help him and help US to understand why he's going through this. We both know that something like this can take years sometimes but he is 55 years old, and was in perfect health before the cancer was found. the tumor wasn't big and fortunately they got it in time as it was not quite a stage 2. I'm really scared for him and hope someone has some recommendations that would help us. And one last question: Are fiber pills as effective as fiber you would get from your nutrition? He takes fiber pills and I"m wondering if perhaps it's not enough to bulk up his stools???

Again, I apologize for the length of this post.....I could probably go on and on but I'd bore most of you. But if you've read this far, a huge THANK YOU for any help, suggestions, encouragement.......
Top suggestions. Thank you!

[ot dave]

Hi Laney,

Sorry to hear about the struggles your husband is having. I have a permanent colostomy, so I don't have much experience with reversals. I have had multiple surgeries, and as an occupational therapist, I have experience with others who have had surgical procedures.
There could multiple issues occurring one at a time, or all at once. He might have some scar tissue restricting his movements, which could explain the cramping, followed by a large bowel movement that is followed up by the diarrhea. The "burning" you describe, is it internal or external? Internal "burning" could be a sign of an exposed nerve ending after the reattachment. I don't know where he was reattached, parts of the anus have a lot of sensory nerve endings, while the colon can only sense distention, not pain. External/skin "burning" may simply be a result of the frequent accidents he is having. Damaged nerves, like the ones impacted during surgery can regenerate, but it takes time, and unfortunately some don't always go back to "normal".
Each person is unique, and how they respond to surgical procedures is just as unique. This may be one of those things that just takes time, which I know is not very inspiring right now....
Hopefully the nutritionist can help some with regulating and reintroducing his system to normal function again. As far as the doctor not responding to communication, for me, I would find another opinion. I've been very lucky. My surgeon and other physicians along the way have always responded when I have reached out with issues. Might be time to make a change there.
Hopefully someone with a similar experience comes along with some more information.
Hope that helps some.

David

[steiconi]

I had the opposite problem after reversal; constipation. Scar tissue had stiffened up my rectum so it didn't move stuff out.
I used powdered fiber, the store-brand version of metamusil.
After struggling with that for a few years, I started doing enemas, which was better.

Since additional problems came up, I eventually opted for a colostomy.

Your husband might consider adult diapers. Yeah, it poses a mental hurdle, but offers some peace of mind.