How did you solve proctitis after Ostomy?

Hi everyone,

I had my ileostomy 10 weeks ago and unfortunately I’m still getting rectal bleeding from the UC which prompted the surgery - it’s not huge amounts but several times per day.  I know this happens for some people. However, I’m not keen on further surgeries - I’m satisfied with my bag and in an ideal world, I’d be keen to keep my rectum. For those of you who had ongoing issues initially but managed get the colitis/bleeding to settle, what was the key factor? Meds? Time? Mind/body approaches? I’m open to anything and not wedded to conventional medicine either. Would love to hear some success stories. 

Hi..Welcome.

Sorry..no successful  story here...Conventional means failed...

Others will chime in but how  I solved my rectal bleeding was complete removal of it.   7 yrs we did that medicine approach in hopes of reconnection.  Epic failure. Many biologicals, steroids, foam, suppositories etc. 

The proctitis eventual developed into chrons disease. So it became a no brainer to remove everything after my ileo of 7 yrs. 

I understand where you are coming from trying to save the rectum.  For me having it, was unpredictable..and eventually toxic. I believe it was trying to kill me all these years..so I kill it, instead.  And am better off now. 

  Heed what other members say about keeping it verses removal. Then decide a lifetime of meds or alternatives, options,  with side effects, and still possibly a diseased rectum over time...or.. none of it. 

Good luck and keep us posted what you decide.

 

Hello fernL

Much the same as warrior unfortunately.

I recall the advice at the time was it had to come out as it can become cancerous as well.

I have a colostomy due to rectal cancer, never had Crohn’s or IBD.  My proctitis was caused by radiation and it took 4-5 months to fully resolve after the surgery.  They did have me on steroids for a few months.

Hello FernL  -

First, I have absolutely no experience or understanding of what you are going through but the kind folks who have replied here are experienced.  Everyone has different experiences and results.  10 weeks is very early in your healing time.  I am replying because I loved your comment “not wedded to conventional medicine”…which touched home for me.

I was just on a zoom call with several of my 80 year old high school girlfriends - thru the years we have met for 4 day vacations and get-togethers thru the years.  Now, we travel less so we keep in touch via the world of technology…although not quite the same and who needs that high definition closeup magnifying the outcome of years of laughter wrinkles?  Anyway, in our recent conversation we spoke of medication- yes - unfortunately old age ailments always sneak into our gab sessions as well as current medications…Since I do not take medications I sometimes mentally daydream whenever it is discussed.   During this meds discussion I hear one friend say her doctors recently discovered she is UNABLE to tolerate most meds as her body is missing an enzyme to help process medications -what??!She has been on meds for years!!  In all my adult life I have never heard this or more likely I heard it but my brain managed to dodge this medication warning/advice !  The point of this whole babble is:  WE ARE ALL DIFFERENT …in terms of ailments and meds…our bodies react differently depending on our internal and external makeup.

 Heed what is shared, gather as much information as you can and give your body some time for healing - and finally pay close attention to your own body and make decisions after carefully sifting through all the input….this is an important decision for you.  
Hugs and best wishes….jb

Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister

I developed proctitis a few months ago, although I did not know what it was until about 2 months ago. My GI doc gave me a prescription for mesalamine suppositories and they have helped. It does get to be a bit of a drag having to insert a suppository every night, but I am starting to wean myself off them by going to every other night. Under my doctor's suggestion, of course. The bleeding, which I believe to be aggravated by my use of ibuprofen, has stopped as has most of the seepage. Fingers crossed. I have been here before, a few years before I developed C Diff and lost my colon.

Daniel

I see your from the Windy City. Welcome FernL.  You wont like what I am going to recommend but if you want to prevent infection or even Cancer your better getting your butt removed and it will stop the Mucus that you will get from your rectum. It's all up to you but consider the long term effect your still young. Regards IGGIE

Thanks everyone for chiming in. My surgeon said the risk of rectal cancer doesn’t really kick in for 10 years - obviously one never really knows, but the idea of 10 years without seeing him again is appealing! I do get the concern though. 
My main reason to hold on to the rectum is its role in keeping the vagina in its right place. I know some young women have problems with menstrual flow and sex after rectum removal as the vagina tilts back at a weird angle without support. Even having it for 10 years would be good. 
Thanks again everyone :)

Well..I did not know this about barbie butt gurls.. .  That is definitely a big concern being so young as you are..

Keeping the Vag in it's place when you think about organ loss and misalignment..who knew?  U did your research. Ultimately, the decision is yours. 

Good luck. 

 

G-Day FernL,  I hope your thinking of living a bit longer than 10 years. But if sex is better than Life then go for it. Good Luck IGGIE

Hi FernL,

I was wondering how you were getting on with your proctitis? I'm still having problems and I'm due to start on a biologic for it in October.

Biologicals..ugh..what is the name of the drug they plan to use? And this drug is suppose to calm the proctitis?

Hi warrior,

I'm going to be starting on Infliximab. Yes, it's for my proctitis. 

Hi

I have just had mine removed December 2023 and understand the concern on the genital and sex part of things. I really didn't want to get it removed as there was a risk of damaging nerves that could cause sexual dysfunction or dysfunction full stop. Thankfully no damage was done . I spent a good 10years bleeding and pain  as my gp said it was just all part of it .... until I got a second opinion and got referred,  turns out my uc had come back in the last little part of my bowl they left behind after my ileostomy.  I kind of had no choice but to have it done 

Same as me stored. Same exact thing. Only took 8 yrs for C D to return to stump.

No choice. Got it all removed like u did.

But.... tell me..and ifcu rather pm me that's fine too. ...but yur saying no damage done? No dysfunction peeing? Or raising to the occasion? 

Everything works as it should 

Interesting..altho u are much younger..u got it in yur favor to miss the bullet. Age..and perhaps an experienced surgeon.  Lucky  you. Count your blessings. 

Robotic surgery?

I totally get where you're coming from; after my surgery, I also experienced some bleeding, which was really frustrating. For me, it took a bit of time to find my rhythm, but keeping a food diary was a game changer. It helped me pinpoint which foods triggered my symptoms. I also started practicing mindfulness and some gentle yoga to manage stress, and that made a difference. Connecting with others who had similar experiences really helped me feel less alone in it all. It can be a long road, but being open to different approaches is definitely a step in the right direction.

 

 

 

Yep definitely lucky , I guess age and being fit and healthy, I got myself in the best condition I could before hand