www.incontinentsupport.org

After a year plus of going to physical therapy, seeing gastroenterologists, urologists, and primary care. The options are limited on what can be done to improve the quality of my life.

*A bit of back story*

In December of 2018, I was admitted to the hospital in Florida for diverticulitis with a bowel perforation and two abscesses. One abscess was the size of my fist ( I wear a large glove). In February of 2019, I had 14 plus inches of my bowel removed but did not get an ostomy at that time. Two surgeons argued about the choice to or not to do an ostomy at that time but the choice was made against doing it due to my age and lack of insurance at that time. In June of 2019, I came to Pennsylvania for a family reunion and never left. The job market, cost of living were too good here to go back to Florida and start over. I rented my current apartment in October of 2019 and then in November of 2019 ended up back in the ER. I was treated for constipation then but it got worse over time. In April 2020 I had a very hard time having a BM at work and ended up straining very bad but not going. When I stood up from the toilet I started leaking urine. This was a surprise and I decided I needed to go home and get to my doctor. From May 2020 to date I have 6 ER/ED visits due to pain and constipation. 10 Visits with Gastroenterology, 12 PCP visits, CT Scans, MRI, and been to Physical therapy. I have had tests done but nothing has fixed what is going on. Every Time they try to get me to back off my medications I end up in the ER/ED so constipated and in pain that I physically shake and my heart rate goes way up. I spend most days in the fetal position on the couch due to pain. If I am active at all the accidents go way up. My ab muscles do not work so my back hurts all the time due to having to support myself when standing.

Doctors are at the point now where they are giving me just one option, an Ostomy. My bowels are not working right even with all the medication and the pain and fatigue factor is affecting my quality of life so much that it is the only option my doctors are talking about now. I tried Botox as a long shot and while it did fix some of the pain as it stopped the spasms it made life very bad for bowel accidents.

Now I just have to wait until the 14th to see my GI doctor get her take on surgery and see what she says. Then on the 21, I see my colon doctor and we will make a choice as to what to do.

Sorry to read about your situation, but I can well relate to it from my own severe chronic constipation and neurogenic bowel.

Have you considered an antegrade continence enema such as the MACE (Malone Antegrade Continence Enema)? A port is made, usually at the appendix, so that an enema can be injected to clear the colon "from the top down," usually done once a day. That way there is not need to wear an ostomy pouch.

Good luck with your discussions with your physicians and making your decision.

--John
(double incontinent)

JDinVirginia wrote:Sorry to read about your situation, but I can well relate to it from my own severe chronic constipation and neurogenic bowel.

Have you considered an antegrade continence enema such as the MACE (Malone Antegrade Continence Enema)? A port is made, usually at the appendix, so that an enema can be injected to clear the colon "from the top down," usually done once a day. That way there is not need to wear an ostomy pouch.

Good luck with your discussions with your physicians and making your decision.

--John
(double incontinent)

Cannot do enemas or suppositories due to spasms with my puborectalis. Essentially, I have a very narrow bowel and the top end of my puborectalis (About the size of an iPhone power cord once the spasms start) Nothing but liquid stool can get out or in. So the issue for me is that the enema does not do its job so I cannot be on a bowel program. Also, my Colon doctor feels that my bowel where I had surgery before is likely paralyzed so it is not working without medication intervention.

Your account reads as though you are in desperate straits indeed. I use stool softeners, laxatives, enemas, and suppositories, but my situation is nowhere near as dire as yours. I hope your medical professionals know what they are doing, have your best interests at heart, and will solve your issues.

Patrick wrote:Your account reads as though you are in desperate straits indeed. I use stool softeners, laxatives, enemas, and suppositories, but my situation is nowhere near as dire as yours. I hope your medical professionals know what they are doing, have your best interests at heart, and will solve your issues.

My PCP even looked over all of my records and said that I am his most complex case for someone my age that does not have other things wrong. The thing is that even my PCP feels like an ostomy is my only option to fix my bowel issue.


The big thing is that my bowel issues are very likely a digestive issue as well. That part of this has to be figured out. When I asked my PCP about complications he said it is like that I will have more issues throughout my life. I may need a feeding tube after this surgery to get enough nutrients and water into my system so it works right.

All in all, I am looking for a quality of life improvement and if this surgery is not going to do that then my doctors need to fugure out what is.

Sorry you are dealing with this. I hope you finally get something fixed, and are able to be free of pain at least.

Bit of an update. So I got talked into trying sacral neuromodulation. This was something that was ruled out by my doctors before when I was seeing my urologist as it would not cover all that is wrong.

My Colon doctor wants me to try the temporary device and see if it help but he told me I will likely not do enough. He also told me that the company that makes the device looks for a 50% improvement as a basis to move forward with the full device.

I let him know upfront that I would not be okay with that low of improvement and would need to see a big change in my pain level.

Their goal with it is to get me off the medications that I am on but my Colon doctor said that will likely not happen.

So I ended up talking to an RN with the device company and she now has be thinking that I might not have wanted to even say okay to the temporary one.

She could not answer my big questions but did give me the device rep's Phone ## so after Christmas I can call and see what they say.

Also because my hospital is not doing this kind of surgery right now due to covid I may have to wait till late spring or early summer before getting the temporary one anyway which means being in this much pain for a long time.. Not happy about that or any of this.