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Is colecotomy and proctocolecotomy always the end result of rectal dilations?

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Posted 12/29/2016 9:11 PM (GMT 0)
I noticed in several forums and blogs that people after undergoing several dilations of rectal strictures end up with either colecotomy or proctocolecotomy. My rectal narrowing (so far we do not know whether it's inflammatory or fibrotic) is not responding to treatment. I have to admit it that remicade has improved my intestinal inflammation to a great extent; at least I have one or maximum two bms per day and the dull pain I used to suffer from has disappeared. However, when it comes to both proctitis and fistula, things are totally different.

Whenever I mistakenly feel my proctitis symptoms have subsided, they return next day with vengeance. I read too that active proctitis slows down any healing of perianal fistula. My GI refuses any discussions of dilations and he even warned me against inserting either the pentasa suppository or the tip of colifoam enema when my rectum is that inflamed. But I'm suffering. Having had two accidents of losing control while asleep during this month make me suffer from insomnia for fear that they might recur.

My GI mentioned in my last visit that he doesn't want to prescribe pred but definitely if I complain again, he'll do. My stomach is already inflamed and I have nausea and throw up and I'm not ready at the time being for any of pred goodies. I developed last time I took pred more than 4 years ago, hypertension and was put on meds. This hypertension went down to normal after I stopped pred as I have always suffered from hypotension. Also, I developed chronic tendinitis in my right foot which worsens by pred use in addition to left knee osteoarthritis (which I then got at the age of 33).

So, if I ask for a dilation, would it be advisable? I'm not psychologically ready for any kind of colectomy. I just need to ease this rectal inflammation and it seems that all traditional meds, including infliximab have failed to do so.
Posted 12/30/2016 12:09 AM (GMT 0)
I've never had rectal dilation so I don't know the outcomes or how often that leads to surgery.

Have you been to a CR surgeon to get accurate information about dilation in your situation, your fistula and what options there might be?

Severe rectal inflammation was the reason I finally had surgery, I was done with the accidents and wanted my RV fistula fixed permanently. My rectal inflammation was so bad I was also unable to use enemas.

My GI wanted to try Xeljanz before I had more surgery. But I knew from having my temp ostomy that I wanted surgery instead.

In regards to these specific issues I found my CR surgeon to be more knowledgeable than my GI. And he offered other options besides surgery I was the one that requested to be evaluated for a proctocolectomy. If you haven't seen a CR surgeon yet, don't avoid it just bc of a fear of surgery. They can do lots of things that don't involve a colectomy. My surgeon treated a lot of issues with in office procedures, not just major surgery.
Posted 12/30/2016 1:04 AM (GMT 0)
Cupcakespinkgal, thank you. Glad that you are doing better with a stoma as indicated from your signature. Well, I have been to several CRS before. One of them suggested several years ago dilation but my GI refused. I saw another one when I was diagnosed with a perianal fistula this year and he thought that it was not necessary to treat the fistula with remicade and that I have to live up with it. So, I have to ask for a referral to another surgeon. Will have my next remicade infusion next week and will see how things go on afterwards.
Happy New Year!
Posted 12/30/2016 5:49 AM (GMT 0)
I have had 16 -17 dialations this year. was to have one today, (29th) but was postponed till January because of my blood infection at the moment. which may have been a result of the breaking of tissue during the stretches. anyway. I started out at 9mm in the rectum and they have managed to get up to 20mm the last one on the 15th of dec. each time every 2 weeks this last couple months it has shrunk back to 17-18mm. so if they can maintain the 17-20 and I can poop ok I'm all for it.. if you do decide to go that route, you must insist they use a pediatric scope to properly get through any narrow spots. otherwise they will do damage shoving the adult scope up even with plenty of lubrication. good luck and I am going to try and email you about another subject in you post. randy just checked your email and its private, so if you would like email me and I will discuss the other topic. smilewinkgrin
Posted 12/30/2016 1:51 PM (GMT 0)
Minnietoty,

My dilations were in the sigmoid. They would last a week and the stricture of soft tissue would return.

My incontinence was thru the rectum (alittle) but the majority of the time it was thru my fistulas. My CRS said if we get the fistulas repaired there would be little to no issues with incontinence. Remicade did not heal my fistulas. I was on the max 10 vial dose for 6 months and then went down to 5 vials. It was every 4 weeks then it went to every 8 weeks after we all agreed it was not healing fistulas but it was controlling my other symptoms. I too could not sleep at night due to the accidents. Could your accidents be thru the fistula vs. thru the rectum/anus? Perhaps that is why you do not wake up...since the output is going thru the fistula there isn't any feeling or urge to go?

My GI and CRS work together on my issues. Rarely do they disagree-however they could not agree on the dilations. My GI did not want to do them because he feared he would "pop" me. Eventually both of them were in the operating room while one observed and the other performed the dilations. The CRS had to push for the dilations.

Will your CRS speak with your GI? What reason does your GI give for not wanting you to have dilations? Is it that he does not want to do it or he just doesn't want it done period? My CRS told my GI if he wouldn't or couldn't do it he (the CRS) would. (Only then did my GI agree)

I too was not ready for a colostomy. The stricture took that decision away from me. The colostomy is not bad, just different.

My thoughts are with you. I hope you find some relief--sooner rather than later.

Clo

Post Edited (clo2014) : 12/30/2016 6:55:22 AM (GMT-7)

Posted 12/30/2016 2:32 PM (GMT 0)
Wow. I've never heard of dilators. I'll mention it to my GI.

Cupcake---what were the other options your CRS offered besides a colectomy?
Posted 12/31/2016 12:47 AM (GMT 0)
His other options involved bowel rest to try to heal and calm down my rectum with nothing passing through and then to start a new medication.

He proposed TPN with pain management or diverting loop ileostomy (no actual surgery on my colon just bringing my small intestines up for a temp ostomy so my colon could completely rest)

The only medication options I had left were Xeljanz and Stelara. I wasn't confident in either to close my fistula and new he would only repair it if I had the proctocolectomy removing my rectum.

I should add those were for my situation. He said my case was so severe those were the only things he was willing to try or the big surgery!
Posted 1/2/2017 3:27 AM (GMT 0)
Dear all, thank you so much. Hope you're enjoying the holidays. Well, I'm trying hard to solve the problem on my own. I take colifoam daily though my GI has told me to do this at the beginning of a flare up and then when things settle down, to take it twice per week. Since symptoms are still active, I have to take it on a daily basis. I apply all types of creams you can think of: glyceril trinitrate, Anusol HC and sometimes even sudocrem. A lot of times, the rectum is very narrow and I can hardly pass out any stool but I'm postponing as much as possible seeing my GI.

My GI told me before that he is against the idea of dilations because he is afraid the stricture might be inflammatory and not fibrotic. He added if it's inflammatory, it will become worse. He did not explain more than that.
Posted 1/2/2017 2:50 PM (GMT 0)
Minnie, I'm sort of in the same boat as you right now except my scopes say no CD is present, just the doggone stricture. I've had several dilations over the past 2 years as well as a surgery to remove a rectal stricture. And unfortunately for me the end result will be an ostomy probably sooner than later. At my last dilation in December my COR said he could only get the smallest dilator inserted but that he would keep doing them as long as I wanted to. It's been less than a month and I'm still doing ok except for this morning ( might have decided a taste of saurkraut was a good idea...not).

take care
Posted 1/2/2017 6:08 PM (GMT 0)
Your GI is probably worried about perforation as it's more dangerous with severely inflamed tissue. If he's worried about a suppository, the inflammation must be significant.

I've only had one dilatation (what my docs call a dilation) post-surgery at the anastomosis - they can try to close up while they heal - which went well and hasn't had to be redone.

I don't regret having a hemicolectomy, which was resected fairly low down since the upper 1/2 of the rectum was removed. I did not have a temporary colostomy, just resected and TPN for about 10 days. I would not want to go back to what I was going through even though I had complications.
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