colonic inertia, anismus, temporary colostomy, botox injection????

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answers4me2
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Date Joined Dec 2008
Total Posts : 1321
   Posted 6/6/2009 12:11 AM (GMT -6)   
I haven't posted in several months due to me waiting to see a different colorectal doc. SOOOOOO glad I got a 2nd opinion. my 1st doc dx me with colonic inertia. I knew I had this condition since I have been constipated my entire life. Well, he wanted me to have my entire colon removed. I was like, ok, but why can't I poop when the poop gets down to my rectum??? He did not have an answer. I just felt put off by him, so, when I got the time, I went to a 2nd doc. Way better. He watched the defecogram video with me and showed me exactly what my problems were. My rectum is falling and folding in on itself and I have anismus, a muscle problem, that can not be fixed easily. He offered for me to take biofeedback or have a botox shot directly into the rectum. He said neither botox or biofeedback are that successful, but it was worth a shot. I was like, can we do it today? HEEHEE He said he wanted to see my anal manometry test from the other doctor 1st...long story short, the other doctor never got the report, then denied even ordering the test. Thankfully, I tracked the test down myself and faxed a copy to the other doctor. Anyway, my question is this ?Has anyone ever tried botox for anismus? Did it help? If this does not work, then he said we could try a temporary colostomy. He  said this would give the muscle a chance to rest, but there were no guarantees. I am about at my whits end with this pooping problem. I spend hours a day doing acrobats trying to get the poop out of my butt into the toilet.  I am almost ready to just say, go ahead, give me a permament bag so that I can live a semi normal life. My kids and husband call me toilet queen... yeah It is so embarassing. And oh yeah. He said if I would of went ahead and had the colon removed, that I would still have the anismus and would of still been unable to poop normally out of my rectum?????

XtremeMisery
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Date Joined Sep 2007
Total Posts : 687
   Posted 6/6/2009 8:25 AM (GMT -6)   

Oh wow, if we are not two peas in a pod....I had my whole colon removed for colonic inertia, did well for three months and then stopped pooping. I then tried biofeedback for three months and was diagnosed with anismus (after having sigmoidoscopy to make sure I did not have a kink or narrowing of my anastamosis). Biofeedback did not work. We then tried botox injections. Seven injections right into my rectum. This too did not work. I was in the process of having second opinion at University of Michigan and I got a life threatning obstruction and had to have an emergency loop ileostomy. Since then I have had intermittent urges and passed stool and mucous on my own. Life with a bag for me has been emotionally horrible for me, but in your case yo uhave time to think about it and adjust to the idea. I am now being seen at Cleveland Clinic and they disagree with my diagnosis of anismus....I am having all of the testing (small bowel, defecography, and anal manometry) done again for the third time with a pelvic floor specialist and surgeon.

I wish you the best and hope you find some relief....

Lizzie


Chronic Lifetime Constipation, Dx IBS-C for 7 yrs
Diagnosed Colonic Inertia-Oct 2007
Total Colectomy with ileorectal anastamosis- Jan 28, 2008
Ileus with suspected leak- Feb 1, 2008, ended with four abdomal abscessses and 2 drains
Four abdominal abscesses- Feb 2008
Diagnosed with small bowel Fistula- March 6 2008
Drains removed- End of March 2008
Continued Constipation- biofeedback for 3 mo Aug 2008, Dx Rectal Inertia
Admitted with Small Bowel Obsruction April 4, 2009 and eremgency ileostomy 4/13
Loop ileostomy April 13, 2009 and still recovering woth abdominal abscesses out 4/24
Cleveland Clinic in six weeks for further testing....awaiting approval.
 
"The Greatest Healing Therapy is Friendship and Love"


2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 6/6/2009 1:04 PM (GMT -6)   
Lizzie, what do you mean they disagree with the anismus dianosis? what do they think it is then?

how are you feeling? is the pain gone?
Hodaya
 
06/05/2007 - STARR procedure 
colonic inertia w/ pelvic floor dysfunction


answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1321
   Posted 6/6/2009 6:58 PM (GMT -6)   
I have been reading about anismus and one government website said they do not believe it is a true diagnoses? WHAT? I am almost sure I have nerve damage from my hysterectomy and my 1st pelvic prolapse correction surgery. That would explain why nothing helps. I mean, nothing. I can have a rectum full of water and I can not release it on my own. I either insert my finger or a suppository to get it to come out. So, I can see that having my colon removed would not have helped me with that problem. I am so sick and tired of talking about pooping. GEEZ It never ends. I am now trying to decide if I should take miralax tonight, wait until tomorrow, or Monday because we are ripping and running with my daughter playing All Stars in softball. But I will be in trouble because I ate 2 ice cream cones and dairy just locks me right up. But I won't have 3 to 6 hours tomorrow to stay home and try to get the stool out. And if I have get a belly full of soft stool it makes me very nauseas. I don't have the sensation of, oh wow, I need to have a bm. I feel like I am going to throw up. Are you like that?

answers4me2
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Date Joined Dec 2008
Total Posts : 1321
   Posted 6/6/2009 7:04 PM (GMT -6)   
Oh yeah Lizzie, is having the bag just horrible? I want honesty here. What do you hate about it? Has it helped with your problem? Do you feel more relief? Because right now I can't even fart half of the time. My rectum is shut up nice and tight and ain't nothing getting out of it without a fight LOL HAHAHA Did the botox injections hurt after the fact? Because my doctor told me he would put me to sleep for the injection and it would not hurt afterwards. Is this true in your case?

peggy113
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Date Joined Aug 2007
Total Posts : 1998
   Posted 6/7/2009 8:26 AM (GMT -6)   
Hello TDR and welcome back.  I've read and re-read your post.  I do not have the issues that you have but wanted to let you know that I hope you find some options that will give you some relief and able to lead a healthy life.
 
A "bag" is something I don't think any of us would go to the grocery store and say, "I want one of those."  But given the options, it has been a true life saver for me and many others.  Yeh, we all have our issues.  But, for me, those issues are so minor now compared to Pre-ileostomy and I am able to do anything that I want, WHENEVER I want.  I don't have to worry about if or when I am going to have a bm or accident.  No sitting in the bathroom for hours.  No running to the loo and not making it in time.  No laxatives, enemas, suppositories.  I have to empty my bag several times a day, but I drink a lot and have to pee anyway, so not a big deal.
 
SOrry I hijacked your thread --Lizzie and TDR.  Just had to offer my 2 cents worth and wanted to wish you the best with whatever decision you make, TDR.  Do keep us all up to date on what's happening and what you and the doctors decide.  I'm sorry you are going thru all of this.
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


answers4me2
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Date Joined Dec 2008
Total Posts : 1321
   Posted 6/7/2009 4:09 PM (GMT -6)   
My mom said I will stink if I have a bag????? Is this true? I have been discussing and researching, and I have decided that I will first, try the botox injection. If this does not work, then I will try the temporary colostomy. I know it sounds extreme, but I am trapped to the toilet and I want to control my life while I am alive. I can't even consider going camping with my family due to not having a toilet and plenty of running water to clean myself up afterwards. Shoot, I don't want to go anywhere...it is embarassing to have to spend hours on the toilet. Is it hard having a bag? Can you clean it in a public restrrom if you had to?

XtremeMisery
Veteran Member


Date Joined Sep 2007
Total Posts : 687
   Posted 6/7/2009 4:51 PM (GMT -6)   

TDR-

Sorry was gone all weekend.....I was not put asleep for the botox injections so they did hurt, but not after the fact, do you should be a-ok. I do feel somewhat better....I get rid of waste which I never did, but I am still having nausea and pain issues and I am seven weeks post-op, but hopefully this will get better too. I personnaly am having a hard time with the bag, but this does not mean you will and if its what you have to have then so be it.....each of us copes differently. I am OCD clean and being clean and go wipes with me and clean out my bag 2-3 times a day, but again this is just me. I use mouthwash for a deodorizer and I also have some that the ostomy nurses gave me. Hope this helps....keep us posted.

Lizzie


Chronic Lifetime Constipation, Dx IBS-C for 7 yrs
Diagnosed Colonic Inertia-Oct 2007
Total Colectomy with ileorectal anastamosis- Jan 28, 2008
Ileus with suspected leak- Feb 1, 2008, ended with four abdomal abscessses and 2 drains
Four abdominal abscesses- Feb 2008
Diagnosed with small bowel Fistula- March 6 2008
Drains removed- End of March 2008
Continued Constipation- biofeedback for 3 mo Aug 2008, Dx Rectal Inertia
Admitted with Small Bowel Obsruction April 4, 2009 and eremgency ileostomy 4/13
Loop ileostomy April 13, 2009 and still recovering woth abdominal abscesses out 4/24
Cleveland Clinic in six weeks for further testing....awaiting approval.
 
"The Greatest Healing Therapy is Friendship and Love"


answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1321
   Posted 6/7/2009 7:52 PM (GMT -6)   
Lizzie, so you have a bag, but still poop? Oh, I hope the botox helps me. I will be so happy if it does. It just sounds too good to be true if you know what I mean. Do you still have to take miralax or some other laxative? Because I have always had to take some type of laxative. It wold be nice if I didn't have to take any laxatives, but I am against having my colon removed. That just scares me to death.

spasman
Regular Member


Date Joined Jul 2006
Total Posts : 361
   Posted 6/8/2009 1:19 AM (GMT -6)   
Some people get injection in the pubic area.
-IBS induced by NSAID
-IBS-A,C with meteorism(trapped gas) and pubic burning-
 


T-1 Para
New Member


Date Joined Aug 2013
Total Posts : 6
   Posted 8/4/2013 2:29 PM (GMT -6)   
Hi ....I've had the botox injection to my anal sphincter to stop the chronic spasm / knot causing fissures. It worked well but wore off after a few months. I then had the procedure repeated but it didn't work at all the 2nd time. I'm now using Nitroglycerin ointment mixed by the pharmacist . You apply the ointment to the interior of the anal sphincter with a Q-tip it helps to relax the sphincter, especially before & after a bowel movement. There is a side effect though...if you use too much it causes a headache , But I'd rather have a headache than a torturous butt fissure when you have to sit 14 hrs a day. My Dr's are also recommending the colostomy & I'm about ready to give in because I cannot tolerate the pain any longer. I have tried to fix this problem for 2 yrs now & cannot find a way to calm the sphincter. I believe it's some kind of pelvic floor disorder that is hard for doctors to figure out. My fear is I'll have the colostomy & still have the chronic anal sphincter spasm even though I'm evacuating from another area. Constipation makes the anal spasm worse But if you use too much miralax & get too loose the spasm is bad also . It's very tough to figure it out , soaking in a hot tub with epson salt can calm it sometimes. I have sincere sympathy for anyone dealing with this problem it's daily torture. Guess I'll keep searching for relief till my colostomy surgery date arrives & post if I find ANY relief

answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1321
   Posted 8/4/2013 4:48 PM (GMT -6)   
I suffered with the pain of anal fissures. It was worse than giving birth. I would cry. It was suicide pain. I shook with the pain. I had 2 spincteroctomies. Did you have that? I also had Botox. It didn't help. Biofeedback didn't help.

Have you tried Konsyl fiber and water? That has helped some that don't suffer with colonic inertia??? You have to be very diligent though and take the fiber twice a day.

What helped with the pain is I had an anal rectal surgeon go in and scoop out the fissure and sew the healthy tissue loosely back together. This was a terrible surgery, but it did bring the pain level of 20 down to a bearable 5.

Oh ugh nitrogcerin gave me such a headache I couldn't get out of bed. Pain pills didn't help.

I now have an ileostomy. I had my colon removed. I still have my rectum. No rectal pain, no anal fissures. No rectal pain.

When are you getting a colostomy? I feel for you. Anal fissures is by far the worst pain I've ever felt.

T-1 Para
New Member


Date Joined Aug 2013
Total Posts : 6
   Posted 8/5/2013 7:33 AM (GMT -6)   
The 1st botox treatment the surgeon needed 4 stitches to sew up the fissure. One of the reasons the pain is so torturous is that being a paraplegic I sit 14 hrs a day + work full time. I also use a stimulant laxative every other day which is like putting salt on an open wound. I've had chronic pancreatitis for 25+ yrs & the fissure is much more painful . I've used Lidocaine to numb the area + take oxycodone & there is NO pain relief at all. I didn't have the sphicterotomies because they're concerened with leakage causing skin break down. My primary Dr & surgeon say a colostomy is my best option.

I'm scheduled to meet with the surgeon for the colostomy at the end of August. When I have a couple of days when the pain is bearable I don't want the surgery BUT one or two torturous fissure days & I'm ready to do it ASAP. My major concern is that they do the colostomy & I still have chronic anal sphincter spasm / fissures & I can't get either of my Dr's to guarantee that won't be the case.
I'm very active & have concerns about dealing with a colostomy bag.I also don't like the idea of the recovery time if they could guarantee Laproscopic surgery I'd schedule sooner. I've been a paraplegic for 34 yrs & this is the toughest thing I've ever dealt with BUT two yrs of brutal pain & no relief tells me it's time for the colostomy unfortunately

answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1321
   Posted 8/5/2013 3:41 PM (GMT -6)   
Do you have a slow colon? Have you considered a total colectomy with end ileostomy? And having your rectum removed also?

Nobody can understand the pain and agony of anal fissures unless they have had them. And I feel for you sitting all day. Ouch. I stood as often as I could. Even at parent teacher conferences, and I even semi stood at every red light while driving. The pain is that bad.

Why are your doctors unsure about laparoscopic surgery?

Fortunately for me when I had the spincteroctomies, I had the pelvic floor dysfunction, so I never had to worry about leakage. I had to do a paraplegic bowel program to have a bowel movement that took hours and hours too. Ugh.
End ileostomy due to colonic inertia and pelvic floor dysfunction.

T-1 Para
New Member


Date Joined Aug 2013
Total Posts : 6
   Posted 8/6/2013 4:37 PM (GMT -6)   
Yeah it's slow cause I'm paralyzed from the chest down & use Pancreatic enzymes to digest my food so I have a lot of IBS symptoms. They're saying they want to remove my desending colon & part of the rectum . Today I'm saying do it asap...I'm in butt fissure HELL & just got done waxing my new car which only made the fissures worse!!

I'm dealing with the veterans admin. for healthcare,so they're saying I have to sign consent for both surgeries in case there is a problem with Laproscopic while in surgery. So actually I wouldn't know which way they went till I was out of surgery. I'm about 120 LBS & 5 9'' so think it would be easier than a heavy person. I believe I also have pelvic floor dysfunction Cause nothing will move to the rectal area with using a stimulant laxative & it's still pure hell. I think many yrs of stimulant laxatives is the major cause of the Hyperactive Sphincter /fissures pelvic floor disorder. I'm in a situation where the colostomy is my only option. See the surgeon the 27th & might have to get an earlier app if this fissure gets any worse. NO sleep wears you down...impossible to get into a deep sleep when you have stabbing rectal pain. I sympathise with Anyone that has dealt with fissure hell!

answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1321
   Posted 8/6/2013 8:04 PM (GMT -6)   
I am surprised your doctors are recommending a colostomy with a slow colon. Have you had a transit marker test without any stimulant laxatives to see if you have colonic inertia?

An ileostomy would be a stoma from the small intestine. I do not need laxatives of any kind with the ileostomy. My doctor said with the colostomy that I would still be constipated.

I'm sorry you are having this horrific pain. Ugh. I know that warm baths helped me the most with the pain.
End ileostomy due to colonic inertia and pelvic floor dysfunction.

T-1 Para
New Member


Date Joined Aug 2013
Total Posts : 6
   Posted 8/7/2013 9:46 AM (GMT -6)   
I haven't had the transit marker test & I'm told if I have the colostomy I'd still need the Miralax daily. The Main reason my SCI Dr's are recommending the colostomy is to stop the every other day torture of bowel routine using a stimulant laxative it will give my rectum a break + saves a lot of time . They figure most SCI patients are much happier with the colostomy BUT most SCI patients aren't as active as me I'm concerned with issues with bag coming un-attached
I Know the warm baths really help the anal spasm, But it's impossible for me to get in & out of a tub without risking a fall it's too dangerous

answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1321
   Posted 8/7/2013 5:55 PM (GMT -6)   
I'm told colostomies are easier to take care of than ileostomies as they don't go as often and some with a colostomy even do irrigation and cover the stoma with a small gauze or band aid or whatever. They get on a certain bowel routine and only have a bm once a day or every other day with irrigation.

With my ileostomy it is very unpredictable and I empty anywhere from 4 times to 12 times a day. But I do not have to rely on any laxatives. It has improved my quality of life and it takes no time compared to trying to have a bm before.

I know you will have to deal with some rectal mucous if you keep your rectum. I have mine. It is not painful, although the rectum is painful if I put anything inside sexually or if I try to disimpact the rectal mucous. I use a lubricated tip of an enema bottle with warm water and try to rinse the rectum out. I have pelvic floor dysfunction still and this can be a lengthy process and I'm not always successful getting the mucous out. But it is still better than trying to have a bm.
End ileostomy due to colonic inertia and pelvic floor dysfunction.

T-1 Para
New Member


Date Joined Aug 2013
Total Posts : 6
   Posted 8/8/2013 6:17 AM (GMT -6)   
They said they'll remove half the rectum but I don't know if that will eliminate the mucous? Any leakage of mucous when you sit all day wouldn't be good , could cause skin break down. Not familiar with an enema bottle for your rinse but wouldn't a good size plastic turkey baster help?....It could possibly irrigate or be used as suction to remove mucous close to anal sphincter.
Talk about bad luck...I'm paralyzed from the armpits down & have NO feeling below that level EXCEPT on my anal sphincter/rectum & I have the end up getting anismus ...I get an SCI injury...can't fix that....I get pancreatitis....can't fix that....now this ...Life only get's tougher as you age

LaurenKin
New Member


Date Joined Jul 2014
Total Posts : 1
   Posted 7/13/2014 3:29 PM (GMT -6)   
Hello Everyone, I am new to the board and I think this is the thread I have been looking for.
I was diagnosed at U of Michigan with pelvic floor disorder, functional constipation back in 2012.
So basically one side of my pelvic floor doesn’t move and I can’t feel the urge to have a bowel movement on one side of my rectum. So much that now I developed a fissure. Now U of M put me through Pelvic Floor physical therapy but I had to stop because it was not working and the pain. As so because of the constant strain I have developed Pre-Syncope and neuropathy. Basically I can’t keep this up. Is there a colorectal Dr. here in Michigan in the surrounding Area you trust to possibly do a colostomy?
I’ve seen Dr. Tracy Hull at Cleveland Clinic and she recommended a colostomy a year ago. Are there any other collerectal doctors that are good that are in Michigan? Who do you all see?

Again thanks for your help.

IllyKid
New Member


Date Joined Nov 2013
Total Posts : 9
   Posted 7/13/2014 4:18 PM (GMT -6)   
I understand what an impact constipation can have on your life. My 12 year old son has suffered with colonic inertia his whole life and it has had a huge effect on his quality of life and our family. We have tried many medical options and medications over the years with little or no effect. Middle of last year he ended up with emergency surgery for an ileostomy. I just wanted to let you know what a huge difference this has made to his life, but a positive one. He has coped so well with the bag, I was so worried about the effect it would have on his confidence and self esteem, but he has accepted it so well. Kids are amazingly resilient! He is so well and healthy now compared to what he used to be. He has a very healthy appetite and so much energy that he never had before. He is finally growing, and was able to return to school after years of no bowel incontinence. He no longer takes any medication after years of filling his system with loads of laxatives. We no longer have to spend time in hospital with anaesthetics, disempactions, Botox and colonoscopies, and traumatic enemas. So I just wanted to say that having a bag isn't all bad, after the initial shock of the surgery, it really has been a blessing for my son and it has made a huge difference to his quality of life.

lifeguard trainer
New Member


Date Joined Jul 2014
Total Posts : 2
   Posted 7/20/2014 4:48 AM (GMT -6)   
Hey to everyone! I'm from Finland, 40years, married, one 14years boy and 1.4years princes. I work in psykiatric hospital. I have worked since 1993 in civil psykiatric and only in Finland criminal psykiatric prison. I am also first aid trainer and International Lifesaver trainer (pool and beach). In Finland I'm award winner Lifesaver of the year 2006 and hae a special award 2007, 2013 and state champion in lifesaving competition in line throw 2014.

English is not good...sorry about that...

I have hae anal fissure, some prolaps, inside hemorrage, some sick pain in rectum and now hard/difficult anismus+anal spasm. I'm in toilet 2-4h hours per day, some pain in crapting and after craptung the pain is big!

In 2006 I have serious pain and had to eat or injention for pain releif. It was horrible time... Could't do anything.
I have hae anal dilatation several times past years (2006,2007), nitroglyserin gel, some surgery where took like "donits" away from my rectum. That helped for three years.

Now I have past two years sufferd again and had to be in toilet several hours in day and had pain in my rectum! Have had little surgery, physiotherapy, acupunkt for the pain and relax, some gels and cream for relax and pain, also two times botox injektion. They don't help that much. Only after crapting the pain is little les with botox. Botox were first two weeks painful and did only bad for me. Then after two weeks it did help the pain after crapting about half. No help for anal spasm.
Now my doctor (meen for seven years) and meen talking colostomy. I'm afraid and fear that pain and spasm won't go of. I have meet colostomy nurse in june 2014. Now 11th of August I will see my doctor/gasteosurgeon (same doctor called "Huhtinen" have been taking care of me seven years). He is in public healt care. The surgeon is so good and I trust him 100%. We have great patient and doctor relationship.

How I gona do my work in psykiatric hospital (patiens are sometimes aggressive) and how I gonna do my water Rescue trainer job!? Also have small Baby and wife, and my boy toi who is 14 yeara, how he is gonna take this?

Please write some Experiences and also I can write for myself if You have something to ask😉

All the Best for You out there!:-)

Post Edited (lifeguard trainer) : 7/20/2014 1:28:53 PM (GMT-6)


answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1321
   Posted 7/22/2014 7:09 AM (GMT -6)   
I had colonic inertia (slow colon) and . Anismus, (pelvic floor dysfunction ), severe bloating and nausea, not to mention the rectal pain, which is the most horrific pain I've ever felt in my life.

I had botox, biofeedback, tried numerous creams, nitroglycerin was one of those which gave me unbearable headaches.

I saw many doctors and had humiliating test after test.

I finally decided I was sick and tired of living on the toilet and I wanted my life back, so I agreed to a trial run with an ileostomy.

Words can not explain the change it made in my quality of life. It was miraculous and I wish I would have done it sooner.

If you have any more questions, feel free to ask. Sorry I have not been on and just saw your post.

lifeguard trainer
New Member


Date Joined Jul 2014
Total Posts : 2
   Posted 8/15/2014 10:22 PM (GMT -6)   
Thank You very much for answering to me "answers4me2":-)

The second botox was slow to infect to me and first two/three weeks I had same pain in my anus and colon, also same slow poop time:-( 1-3hours for one toilet visit, one or three times per day for that... I'm yhen toiletking if You were toiletqueen... Then for a 5-6 weeks it helped for my pain for 30-40%, but did nothing about the slow pooping time:-( Now when the botox effect is away I got back the horrible anus and colon pain!! It is so haed to try work in job own job in hospital (psykiatrik hospital) and also my second job in lifesaving instructor...

Monday 11.8.2014 my doctor called me as we were spoken. Yhen three day after I got my surgery time, it was super fast! My operstion time is monday 1.12.2014. He sayed that there is nothing elso to do but colostomia. And he asked me what I wanted to do. I sayed that I want colostomia and my life back. It is not temperary, it's for life and van do without laparostomia and also he will put some stentnet for preventing some kind of hernia/rupture. He don't take of my colon and I still have anus, he won't close my anus.

I wonder how You got ileostomy?
Do You wear normal t-shirt, jeans etc.?
Have You been swimming? (I already got wetsuit for me)
How long time You were in hospital?
How long time was Your sick leave?
Do You have any pain anymore?
Do You still have feeling to go in toilet for poop?
How is Your sexlife (it's personal queston and okey You to not answer).

Thank You so much for writing me at the first time! It realky helped me to read I have soulmate somewhere;-)

All the Best You people who have colon or something like problems:-)

Ouchie2
Regular Member


Date Joined Jul 2006
Total Posts : 330
   Posted 8/28/2014 7:25 AM (GMT -6)   
I'm another with a permanent ileostomy ...went I to surgery for a j pouch procedure and woke up with an ileo...rare circumstances...lots of complications, a month in hospital etc etc...but this only because I had to have two more emergency surgries....I did need six weeks off work afterwards.......anyway .....I honestly thought it would be the end of the world having a permanent ileo.....it's the complete opposite...I'm two years in and ....honestly it's ok...I wear normal clothing, I don't eat corn or popcorn...I still swim..in fact on occasion have taught kids to swim, I occasionally have phantom urges to go which is weird, no more pain or urgency ....I can't sleep on my tummy which annoys me, I don't smell, it's a myth......sex is fine...I wear a fabric belly band thing .....and I only have to change the (bag...I hate that word) every five days....
It takes a little getting used to...and every now and again I get a little fed up....and have a little cry every so often...but it saved my life and I'm grateful for that .....all the very best
42 female
UC - Diagnosed 2006-Pancolitis UC 2011
HLA-B27 Gene
Vedolizimab stopped (reaction)
8 Mar 2010,Severe flare - 1st Remicade infusion
Several polyps found Remi again Oct 2011
1st and final surgery 31 July 2012 complications pnumonia, renal failure, possible sepsis. 3 surgeries, perm illeo, unable to create jpouch
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