Severe Constipation Problems

I can relate. I have an ileostomy due to colonic inertia and an outlet obstruction defecation issue. Mainly anismis. Functional problems, all of them. No cure, no meds.

I had biofeedback, Botox injections into the puborectalis muscle, I had 2 pelvic prolapse surgeries due to a large rectocele and cystocele, uterus was also dropped and was removed in one of the surgeries.

I had 2 surgeries to clip the spincter muscle as the spincter muscle was thought to be too tight. Nope, this did not work. I had medicines compounded into a gel to be able to be put into an applicator and placed into the rectum to try to relax the rectal muscle. Nope. This did not help and some of the side effects were hell.

Saline enemas were useless as they were retained and would not come back out as my rectum would not relax and straighten for defecation. Glycerin suppositories worked best when coupled with many bathroom acrobats and a very aggressive bowel management program used for the paralyzed patient.

I could not increase fiber as this caused a more severe constipation. Increases in water did not help. I took such mega doses of laxatives that I would vomit and still would not have a bm. I looked like I was pregnant most of the time with severe bloat and was unwell the majority of the time.

The first time my doctor mentioned a bag, I thought he was nuts and I left his office in a rush. When I went back one year later, I had done more research and seen a couple more doctors and I was ready to give the bag a try. I had a temporary loop ileostomy and kept my colon the first surgery. First, because I was worried I might hate the bag like I hated the urine Foley catheter. And second, well, my doctor thought my rectum might start taking orders from my brain and relax enough to allow a bm. But, that never happened. I still have the pelvic floor dysfunction and struggle with the rectal mucous.

Well, I did not hate the bag at all. I loved the bag. It freed up many hours of everyday. So, I went back a year later and had my colon removed and got the end ileostomy. I kept my rectum though since it is disease free and I already had half my body parts removed it seems just getting to this point. Lol.

I still struggle with a slower than normal transit. And I can't eat many raw fruits and vegetables. But life is great. It really is.

If you have any questions. I will answer as best I can.

I'm 42 and married woman to 4 kids. Email me if you'd like we could swap numbers. I'm off work for the summer. I'd be glad to talk to you.

I had several surgeries. The end ileostomy was the last one. I wish it would had been my first. The rectocele was not preventing me from having a bowel movement. I had functional problems. No cure for this. No surgery can correct this. Yes, they corrected my pelvic prolapses and made my pelvic floor almost perfect, but it made no difference. I was still unable to have a bowel movement. How did your anal manometer go? What about your defectogram?

answers4me2,

I don't have the anal Manometry on July 17. I'm not even sure what that is for. The Defecography showed that I have a Rectocele. Could you explain your reference to your pelvic floor dysfunction?

All of these terms are new to me. My GI doctor won't see me until after I have the Anal Manometry done.

Just from my research on the Internet, it appears that I may have slow transit. After the Sitz Marker study, the technician told me that I still had all 24 markers in my colon.

I'm anxious to see what my GI doctor says about "fixing" me. I am so tired of the endless cycle of taking large doses of laxatives that may or may not work. After I get cleaned out, then the process starts over with the bloating, the back ache, and wishing that I could poop on my own.

PFD is when the spincters of the rectum are not working right and don't enable to expel the stools. have you heard of anismus? all the pelvic organs - rectum, bladder and vagina are held by a muscle called puborectalis muscle. this muscle stays always tight what prevents from our secretions to pour out w/o controle. when the rectum is full we feel the need to go empty. in a normal functioning, once the rectum is full, the pubo muscle releases it's tightness to enable us to let go of the stools. an anismus is a sutiation in which the pubo muscle stays tight and won't enable the stools come out. you can also google anismus/PFD and find lots of info. the main test that confirms it is manometry.

first i had my colon removed and the end of the small intestine attached to the rectum. there was no bag. yes mine and my sugeon hopes were it will solve my constipation problem. but since i also have a PFD in addition to the colonic inertia, it didn't matter, cuz the pubo muscle won't let go.

so i opted for a loop ileostomy (temporary). i now still have the temp ileo. have been having it for 3 yrs now. on Aug 25 i'm having one more surgery to remove the rectal stump and turning my loop ileo into an end one (permanent). the reason is b/c the rectal stump still produces mucous and the problem is i can't expel it. so it builds up in there and causes me a lot of pain and discomfort. enemas are not helping. so after 3 yrs i decided i've had enough and going to have it removed.

your questions are not dumb at all.

Post Edited (2b ColonFree) : 6/25/2013 10:10:25 PM (GMT-6)

Oh my.... well, let me start by saying sorry you are having so many problems.. Constipation, let me tell you..lol.. it was ROUGH
I had NO bowel movements from labor day weekend 2011 until Thanksgiving of 2011 (almost 2 full months), and in November, I still hadn't had a bowel movement. BUT the g.i. I was seeing at the time said "Ok, I'll see you in January and see how you are".
My reply was, "You'll refer me to someone who will find out WHY I am not having any bowel movements, or you WON"T see me again!!"

At that point, this doc had me on DAILY- 13 doses of miralax, 4 amitiza pills, 4 doses of lactulose, and THEN I had to alternate every other day between an eninma and a colon prep... I did that for a month with NO movement...
Did my defecography and anal rectal manometry and found I had a toxic mega colon.
Out it came, and I had a j-pouch done. I didn't get an ostomy bag EVER. The only surgery I had was the pouch.. He took out the entire large intestine and 2 feet off the small one, and formed the pouch. At the same time I did have to have a partial hysterectomy due to other issues. We decided that since I would already be wide open it just made sense to take it all at the same time.
I am not going to lie, I have had other issues, but I absolutely DO NOT regret getting my pouch.

So, that is my story, I wish you the best... please feel free to ask any questions you have...
Good luck :)

Thanks so much to all of your responses. It's so helpful to hear from "real" people who have been through these tests and surgeries.

I wasn't supposed to go back to my GI doctor until after I had the Anorectal Manometry test. However, the nurse in his office called and said that he wanted to see me in his tomorrow. She said he wanted to go over my Sitz Marker Study and the Defecography test.

I'm puzzled why he doesn't want to wait for me to have that test before he talks to me. The technician told me that I had 24/24 markers still in my colon and a large rectecele showed up when I had the Defecography test.

Any thoughts?

I did not get all the barium out. The technician said I had a large rectecele.

I saw the GI doctor today. He is sending me to a Gastro Surgeon for the rectecele. He moved my Anorectal Manometry test to July 10. He said that I have slow transit. All 24 markers were still in my colon.

After I have the A.M. Test, he wants me to go to the Mayo Clinic. After that he said he would decide what he wants to do. I live in Missouri and the Mayo Clinic is in Minnosota. If I end up having colon surgery, I can have the surgery in Missouri.

I'm glad my G I Doctor is being conservative instead of just taking my colon out. This is scary stuff. My sister died 2 weeks after her 50th birthday from colon cancer.

Has anyone been to the Mayo Clinic?

Dear Kewpie Girl:
Oh my goodness, you sound so much like me that I had do double check to be sure I wasn't reading my own post. I am also 56, have suffered from IBS for approximately 35 years and sense that no doctor really knows how to help me. During the last decade, my IBS is 100% constipation and I am in agony about 4 out of 7 days each week. My sitz-marker results were similar to yours and the surgeon presented the option for a partial colectomy. I do not want to go down the road unless it is absolutely necessary. Please let me know if you would like to "Chat". Perhaps we can share info or at least provide support for each other. I feel so alone. Take Care, GastroGeorgieGirl

Kewpie,
Mayo Minnesota is awesome. Techs are great and very gentle. It is not scary at all and you will get complete workup VERY IMPORTANT. Is where I should have gone WAY BACK, but I won't go into all that. You will be in great hands. Good luck. Rosemary

Rosemary,

You've been through so much. How have you managed to stay so positive?

I've had constipation problems for over 35 years. Now that I'm finally going through tests, I'm anxious to see what can be done to help me. I see a Gastro Surgeon next Tuesday about the Rectocele. (consult). After that, I suppose my GI Doctor will set up the trip to Mayo. I'm still not sure what will happen there.

I'm the kind of person that is happier with organization, so I hope there is a plan before I get there. Someone told me that they may run the same tests that I've already had, so I'm not really sure why my GI Doctor is sending me there.