Seeking Advice: Endometriosis & Colostomy Challenges

Thank you to everyone who has already responded to posts. They have already been a huge help in understanding the differences and what I'm experiencing is normal.

My situation was supposed to be a simple non-cancerous mass removal and reconnection. The mass turned out to be from endometriosis which had degraded the colon to the point it could not be reconnected. The colostomy was never part of the potential outcomes. I currently have two challenges I hope someone has a story to share...

1) My fear is the endometriosis will reattach to my colon as it tries to heal, making the planned surgery in 6 months another failure. Should I consider a hysterectomy first or less aggressive hormone treatment?

2) The stoma is located right at my pant waistline. As a process engineer working in a manufacturing environment, I'm challenged to find clothes that don't "strangle" my stoma or pouch. Any suggestions?

My best wishes to all of you!
Missy

Hey rabbit, stoma is also on pantline, but wear panties, tuck it in, and usually wear waistband sweatpants or even jeans... comfortable/easy to pull down - lol

If you look in the post, there is a site about the ostomy guard.

Hi Rabbit - I was just about to post a new thread on the Forum about Endometriosis when I noticed this one that I had missed!

I am a bit complicated in my abdominal/pelvic region having had a fistula/huge hernia/impacted colon beyond my stoma etc., but I would be very grateful if you could give me some idea as to your journey with this ....

I regularly (it used to be about every 3 months) have periods where I am in absolute agony with abdominal pain generally around my hernia area and radiating into my lower back. This came with the moving of stool through my colon (and fistula and every other orifice down there!) In the last 12 months though, my colon has become impacted and now almost nothing shifts it at all, I am not even passing mucous which I used to do on a daily basis.

The last two times have been slightly different - the pain has been central and very deep, feels as though it is just in front of my spine and is very much in my lower back. The last time I was in hospital with it and they thought that it wasn't abdominal, but spasms from my spine. It occured again on Wednesday last week and continued into Thursday and my GP gave me morphine injections on both days. This has NEVER gone into more than 24 hrs before and it must have happened now maybe 12-15 times. It was only when I was writing it down on my health 'diary' that I noticed that my period had come on the day after the last two occasions. Now if this is 'period pain' then it is the most indescribable bloody period pain I've ever had! But, thinking about it, it did feel more like that than my usual pains, and was more in my back than abdomen.

My periods have been very irregular. I have been taking HRT for oestrogen deficiency for 18 months (they have now added progesterone too), my mother has had endometriosis and I never knew until today that it can grow anywhere other than the uterus. It has now got me thinking that maybe my complicated abdominal status has possibly caused my docs to miss something??

Any thoughts would be really gratefully received!

Rach xx

Hi Rach- Your situation sounds much more complicated than mine. I'm not sure what I can share that would help will, but I will give it try. Please know that I'm just 4 weeks into this- since my surgery- and there are still many questions to be answered.

First thing is endometriosis in the colon is extremely rare according to my OB and surgeon. Exactly why in my case is not known for certain- but I have my opinion. About 4 years ago my periods were painful and I bled so heavily that about 90% of what would normally leave over a 4-7 day was dumped in heavy clotted messy stuff in a little over a days time. Needless to say I was never far from a bathroom and spent considerable time changing tampons and pads. Turns out I had a gland that was growing into my uterus and sending everything out of control. Keep in mind I've never had birth control or any type of hormone treatment out of fear what it could do to the natural body processes.

I had a choice of hysterectomy but am conservative about removing organs that mess with the natural hormonal process. So I had the inside of my uterus ablated- they basically cauterized the inside of the uterus so that the lining doesn't grow. Some people completely lose their period at that time or as in my case, it is dramatically decreased. My periods normalized but there was still more discomfort then in the past but ibupropen worked fine.

To be clearer on the whole picture- I've had two c-sections and am a proud mother of a 17 yr old boy and 13 yr old girl. Not sure if it relevant but two surgeries can't be helpful.

So when I turned 50, like a good girl I got my colonoscopy and that is when they found the mass which was benin- as second test found the same and confirmed the mass was not due to irritation from the camera. The surgery was suppose to be simple lapro deal. Cut out the section with the mass and reconnect. But the endometriosis had infiltrated the colon enough that it was degraded and could not be reconnected- plus it was an open surgery.

I did 'think' I noticed some anal bleeding on the day my period started for the last 2 or 3 cycles. But it can be very hard to determine where things come from down there and it was just one "wipe" and didn't seem to continue through the cycle.

So.... after all that. I suspect that since the lining of my uterus was no longer capable of providing a home for the endometriosis- it went looking for a new home. I've read it can 'leak' out of the ovaries but I suspect the the gland or around the gland is the site of exit. One more note- They performed a CT scan a week before the surgery and I also have a fibroid about the size of an orange or grapefruit. I guess another possible point of exit.

Not sure if this is related- but I had been seeing a chiro for my back. He seemed to solved it but technically treatment was not done. I've not had any back discomfort which was typically the worst the longer I laid in bed. I've not had any back discomfort which is surprising considering all the laying around I've been doing. Again, my not be related.

The MayoClinic site has the most reliable medical information and Web MD is pretty good too. My philosophy is to read several sites and only take seriously what is consistent between the sites.

I hope this helps and would be happy to answer any questions you might have. I will also try to post updates for anyone who might benefit from it. My best wishes to you, and feel free to contact me directly if want.

By the way, I love to read your help and positive posts. You are impressive to be soooo positive considering all that you are dealing with.

My Best To You! and everyone else...

Hi again - even more interesting .... I had two C-sections too ... my eldest is 18 this Friday!

There has been nothing discovered so far about why I got a fistula in the first instance - no Crohn's, no birth trauma and no kinky sex, so that is still a mystery .....

Apart from my C-sections and laparoscopic ileostomy formation, I have had no other messings about down there, but that is probably enough! I have also had times when they (my periods) have been really heavy and masses of clots, and also recently they have been coming twice a month on occasion.

I am going to have a Google around "endometriosis and fistula" and see if there is any connection there as it sounds as though you too may also have a connection between vagina and rectum/anus?

My back is really quite shot now - mostly due to my hernia - I have been as though 7 months pregnant now for 6 years, and that takes its toll on the spine as my center of gravity shifts away from where it should be, and I am unable to do any core stability exercise as I have virtually no abdominal muscle left and generally can't feel much going on there at all!

Thanks for the compliment about my posts - I really do not feel positive (as I sit here on my own with only my computer and dogs for company, the days do get to feel very, very long at times!) I tend, however, to not post and will disappear off the site for a few days if feeling really low .... it has been a long 12 years and it isn't over yet ...!

What is your planned surgery for 6 months time - a reversal?

Take care ... I will let you know if I come across anything else!

Rach xxxx

Hi Rach-

Happy B-day to your son! And congrats to you! It takes a lot to get them to 18.

The mass/endometriosis was in the sigmoid portion of the colon- the lower portion of the colon before the rectum. I don't think the uterus and colon were "connected" the cells just travel and attach.

The fistula (I had to look it up) seems like it should have been easily solved- but I may not fully understand. I can't help but wonder if everything you are challenged with is simply not related. I didn't want to list any websites here, but I'm happy to send you a few if you'd like. My guess is you may have already found them.

Keep me posted and know that you can take this offline and write directly to me anytime. Your difficult days I can fully understand as I've had my share at various times in my life so I really do understand the feeling of needing to hide or checkout. Hang in there and know that you're not alone.

My best,
Missy

Hi there,

I had severe endometriosis (by God's grace mine didn't reach any organs but should have been as bad as it was). I am really truly sorry yours has gotten this bad. I really am. I had to have multiple surgeries as mine kept coming back. It's extremely painful, which I know you know. Once I felt it coming back for the fourth time, I chose to get a hysterectomy, and it has been the best thing. I kept one of my ovaries (one had to be removed because of cysts) so I wouldn't go into menopause right away.

If it has gone so far to the point it has reached your colon or intestines, I would go for the hysterectomy. I do hope you feel better and don't have to struggle with this anymore.