Where to start?

Hello all,

I'm brand new here! I have life-long slow transit constipation as well as pelvic floor dyssynergy with newer onset pudendal neuralgia from deep infiltrating endometriosis on my rectum and pelvic side walls. 

I have failed all conservative pharmaceutical treatments for my constipation and have been in pelvic floor physical therapy for a year with minimal improvement. The surgeon I was referred to by my GI has recommended a loop ileostomy with an option of reversal if it doesn't resolve my constipation related pain (I know it won't solve my pudendal neuralgia), but I'm hopeful this will greatly improve my quality of life.

I have my first meeting with a stoma nurse in two weeks and I'm looking for help with what questions to come prepared with. I love research and have begun on my own (mostly on pub med and YouTube so far) but I am a bit overwhelmed. What things did you wish you knew before surgery? I know having this done as "elective" vs emergent is a huge privilege and opportunity to go in armed with the right info and tools. 

For extra context, I'm 34 and also have hEDS and POTS which could complicate things. Any advice or links to other resources would be appreciated!

Hi, kinda similar issues… some the same, some not. There are a couple other women active on this site that have had similar/same issues so hopefully among all of us you can get a lot of your questions answered. I have the hypermobility. Have they ruled out vascular EDS as well? I had to have an echocardiogram to make sure my heart wasn’t affected and good to go for surgery. My colon was completely paralyzed for about 3 years before my subtotal/abdominal colectomy. I went through several other tests too in order to ensure I was a good candidate for the type of reversal I would have. At the time of the colectomy the new connection was formed… so end of small intestine to what could be retained of the rectum. Then loop ileostomy. My colorectal surgeon wanted to give the new connection months to heal. From other women I have talked to, having the colectomy and new connection healing time vs colectomy and putting the new connection straight to use makes a difference. Letting it heal first while having an ileostomy seem to fare better overall. I’d had 2 biological children with traumatic deliveries, surgeries during both pregnancies so I’d been through lots of pt & pelvic floor therapy. Have they said what type of reversal they might try in the future? I’m a little over a year into my reversal and as far as the connection goes (ileorectal anastomosis) that is good. For me they’ve used terms like disorder of brain-gut function. I was diagnosed with rheumatoid arthritis last year and current line of thinking is that some infection,bacterial or viral,triggered the autoimmune reaction that killed the enteric nerves in my colon and was in an uncontrolled RA flare for 14 years. When I started to push back against the more aggressive treatment plan with the rheumatologist he said I’d already lost my colon and it was his job now to protect the organs I have left (& my joints) so I’m doing what he says ☺️ When you don’t fall under one of the well established conditions like UC/Crohns/Colorectal cancer it can be difficult to find a provider who will listen much less be proactive with your care, so it sounds like you have a good medical team. Feel free to ask any specific questions… what do I wish knowing before? about a month before the surgery my overall health tanked and I started sleeping a lot which really scared my family. I found out later this is fairly normal for people who know they are about to have a big surgery and the mind/body get on the same page to conserve energy for the recovery. 

Hi, thanks for replying!

My geneticist is pretty certain I don't have vascular EDS based on clinical evaluation, but I haven't had specific genetic testing. 

My colorectal surgeon has set me up with a high-risk anesthesia assessment, even though I've had surgeries before, so I assume they'll evaluate any cardiac risk. The worst my EDS usually causes for me in hospital situations is horrible vein inaccessibility for IVs and blood draws. Plus hip and neck pain from being in an unfamiliar/uncomfortable bed. 

The surgeon rattled off a couple reversal options but I think I zoned that out mostly,  she was just letting me know that the loop ileostomy gave me the most options for "easy" reversal if needed/wanted. In theory, if things work out, I really don't want a reversal. The surgeon said as long as my colon stays healthy and they're able to irrigate it and scope it if/when necessary, then I can keep my options open. But I genuinely want a stoma (at least on paper,  we'll see how it goes in practice). I have been in so much pain from my inability to pass solid stool that I feel willing to trade the inconvenience and lifestyle change in order to get some of my life back. I hope. 

I've wanted this for a while, and I went into my surgical consult ready to advocate for myself and fight to explain what I'm dealing with daily, but my surgeon had read all of my chart and knew my history and was immediately on board. I psyched myself up for no reason hahaha. I am a little bit nervous because she's fairly new to colorectal surgery. I think she finished her fellowship about 3 years ago? But her understanding of my atypical needs has reassured me quite a bit. She even brought up how dehydration could be a big concern post surgery due to my POTS. 

I also believe I have an underlying, undiagnosed autoimmune situation but until symptoms and some bloodwork becomes more clear, it's just an assumption. 

I am definitely worried about the mental toll before and after surgery since my main support system will be my 70 year old mother. For me I think it's just hard to wrap my head around how specifically this is going to change my life, and that's anxiety inducing. I've spent so long imaging what relief could feel like but now that I have been offered the option, I feel a bit like I'm giving up? I know I'm not but it's still a mean little voice in my head. 

I was rereading your original post and realized I assumed when you said loop ileostomy that would mean removing the colon but if your surgeon is saying irrigation you’ll still have a/some colon. Have they done a sitz marker test to determine which parts of your colon have dysmotility? Was colostomy mentioned at all? A newer surgeon isn’t a bad thing if they’re a good surgeon 🙂 It doesn’t sound to me like you’re giving up… it sounds like you’ve been finding ways to cope with the hand you’ve been dealt for a long time. Maybe thinking of it like the ending of one chapter and onto the next will help reframe it in your mind? 

I really like that perspective, thank you!

Yes, the plan is to keep my colon for the time being. I did have a severe and traumatic GI bleed from 3 ulcers in my ascending colon in 2022, but crohns/uc was ruled out and my colon is otherwise "healthy." (they decided my constipation + a very short term use of baby asprin caused the bleed 🤷‍♀️)

I did have a sitz marker test that was grossly positive for a motility issue. 22 markers were still seen throughout the descending and rectosigmoid colon on day 7. Everything looks like it moves well enough. 

I have also had an anal manometry test that was considered "equivocal" for pelvic floor disfunction/dyssynergy because everything  was normal except I couldn't expel the balloon. And an MRI defecography that showed some minor degree of paradoxical angles and I was not able to expel the gel during that test either. 

I've also recently tried botox injections in my pelvic floor. This was mostly to try to help my pudendal neuralgia, but it was really painful and failed. 

Your in good hands with CC.  Good luck and we will be thinking of you. Regards IGGIE

Here are some that have experienced same/similar:

https://www.meetanostomate.org/discussion-forum/viewtopic.php?t=11103

 

I spent decades suffering with what doctors (many, GPs and specialists) called constipation.  I went through every drug that came on the market to treat constipation, then tried pelvic floor physiotherapy, all to no avail.  Finally at the age of 57 my colon perforated and I was given an emergency colostomy.  This too was a failure, as my colon continued not to function properly.  Finally I got the proper diagnosis, which was colonic inertia.  The muscles of my colon just did not push the stool along properly.  I was given a loop ileostomy to start, leaving my colon intact just in case it still did not improve things.  Well, that is what changed my life, for the better.  I function very well with an ileostomy and have a good quality of life.  No more discomfort and pain!  I finally had another surgery to remove my colon and close up the old colostomy site.  Aside from the other medical issues you have, your situation sounds pretty much identical to mine, and I think you are moving in the right direction.   I'd be happy to answer any questions I can.  It was a long process with multiple surgeries to get where I am, but in the end  it was all worth it.  I was also lucky to have a wonderful surgeon who I trust.

Terry

Hi there,

I have suffered from severe pelvic floor dysfunction  since the day I was born and and it is the reason I have my ostomy , my large colon wasn't working either and that had to be removed.  I know what your going you might have a lot of questions  especially with the pelvic floor problems .. please feel free to message me if you would like to.

I hate that balloon 😆 You weren’t awake when they did the Botox injections in your pelvic floor were you?

Noooo, I did conscious sedation for the botox since my doctor said if I did that then they'd be able to do a nerve block too. But after that nerve block wore off I was in a world of pain. I saw some minor improvement in the amount of pain during pelvic floor PT for a couple weeks after the hell week, but it seems to have worn off already, and it never provided any constipation relief. It was worth trying, but I don't see myself doing any more rounds. 

Thank you, I absolutely plan to take you up on that! 

Thank you!

Sounds good !

Phew! My obgyn at the time was the one who did mine and in her words “would hurt like hell” if she didn’t put me under anesthesia.  I can’t do conscious/twilight sedation and have to be put under general anesthesia… I don’t sedate well 🙃