# My experiences with Botox and STARR



## sstorm7 (Nov 15, 2000)

Background:This part is going to be extremely abbreviated. Like many of you, I've been through more symptoms, tests, and treatments than I can count. I'm not going to go into everything I've tried, because I think "everything" just about covers it. That said: I'm female, 30, no kids, and in excellent health otherwise. In 1995, I started experiencing gas, bloating, and abdominal discomfort, which seemed like a big deal at the time, but now is almost laughable. In 1999, I started with incomplete evacuation, which remains the bane of my existence. Previously, I was going once a day, every day, no problem. Then I started with a subtle sensation of abdominal cramping shortly after going, which made me feel like I didn't quite get it all, and every few days would have to go twice a day instead of once. It's been a steady deterioration since then, until now, when I require many, many suppositories and 8 to 10 trips to the toilet, which takes over an hour, before I can empty completely.In April 2006, I had a defecography and anal manometry; the results vary depending on who you talk to. Since then I've seen 3 colorectal surgeons and 2 gastroenterologists, and they can't agree on what's wrong with me. The defecography showed a rectocele, about which there was much argument among the doctors regarding whether or not it was symptomatic. Since I had the STARR surgery and it didn't help, apparently the rectocele wasn't symptomatic. There was also argument about anismus/paridoxical contraction/nonrelaxing puborectalis, whatever you want to call it. Several doctors said there was no evidence for it, others said there was some, but the one thing they agreed on was that it was not likely to be the sole source of my problems and I was never officially diagnosed with it. I did see a physical therapist twice, who just prescribed Kegels, with the opinion that a stronger pelvic floor is able to relax more completely. I've been doing them for almost a year now, no results. To see a therapist more trained in evacuation disorders, I'd have to drive several hours and pay big $$$ (insurance doesn't cover it), which I'm reluctant to do given that one of the top colorectal surgeons in the country told me point-blank that it won't help. Botox:In November 2006 I had a botox injection (actually 3, in different locations). I chose to do this because of an article I'd read showing promising results in treating rectocele with botox (plus the fact that botox is being used for anismus, which I may or may not have). Didn't help at all. The doctor recommended I come back and have it done again, thought it might help the second time, but I found that hard to believe, that I could get worthwhile results with a second treatment when the first did nothing. He used 100 units, too, which is the "rescue" dose in most studies, while 30 units is the standard treatment in most studies, so I was fairly confident I'd gotten enough the first time. It was pretty pricy (about $3000) too. I saw Dr. Ehrenpreis in Arlington Heights, IL (thanks Spasman! I'd asked if anyone knew of a doctor in IL working with botox and you posted an article he'd written). I would recommend him to anyone in the area looking for a GI doc.STARR:I had this procedure in May 2007. Again, no dice. This time I saw Dr. Senagore, in Grand Rapids, MI, who was one of the pricipal investigators in a lot of the studies on STARR, and is also listed in "America's Top Doctors" (a pretty big deal). I would also recommend him, and the Spectrum Health hospital to anyone seeking this procedure. I feel that the fact that it didn't help was due to the rectocele not being a real problem, not the choice of doctor or surgical procedure. It is more than 6 months later, and the only difference is that I still have a lot of rectal soreness and fatigue after my daily struggle to evacuate, which I didn't have before. I've been hoping that that's just a temporary consequence of the surgery, but by now, I'm afraid it's permanent. Now, I guess, I'm waiting for a miracle. After STARR didn't help, Dr. Senagore said "there's nothing more that can be done." I didn't want to believe him, but I've done an extensive amount of research, and that seems to be the case. He mentioned that sacral nerve stimulation might be an option for me someday, but it's not really being done in this country yet for bowel disorders.I will now answer questions anyone has related to these procedures. I'd prefer technical questions about the procedures themselves as opposed to questions about my symptoms. I'll also add more info to this thread as I have time and remember.


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## SpAsMaN* (May 11, 2002)

At least the Botox didn't make it "worst".Remember sometimes Botox takes many injections to relax the muscles.I saw a guy on discovery health channel with his head *bended* on the left side by spasmed muscles.It took several visit and countless injection BUT the neck finally relax and the guy now have his head straigth.Of course i totally understand you cannot afford others injection(s).Also our problem is different.


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## SpAsMaN* (May 11, 2002)

I start to think the defecation problem migth be in fact a result of generalized constipation in many of us.Constipation simply being associated with difficult evacuation.


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## SpAsMaN* (May 11, 2002)

Sstorm,if you are worst since STARR,i wonder if it be possible to simply remove the "stitches" to return to where you were before.Just a thougth.I hope you are feeling ok.


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## Nomie (Mar 22, 2000)

Thanks so much for sharing. There just has to be something that can be done. They can't just leave us like this







Anyways I was wondering if you could tell me more about the Botox? What did it feel like after it was done? I am afraid to have it because if it relaxes the mussel too much it might cause leekage????? Is it painful? Did it help at all? Thanks again for the infomation.


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## sstorm7 (Nov 15, 2000)

Nomie,The botox part really wasn't bad at all. I could feel a little pinch when they did the injection, but that was it, and no soreness afterwards. I could even sit in a car and drive immediately afterwards. The bad part was the scope they had to use to get up in there and see where to do the injections. The doctor said it would be "unpleasant" to do this without knocking me out, and he was very right, but since I was paying for it myself I didn't want to spend the money on anasthesia if I didn't have to. The worst part was actually right afterwards - I guess they use some kind of gas with the scope, and I was horribly, painfully bloated, but that subsided in about an hour. I think if you have anasthesia the whole thing would be a cakewalk, but it was tolerable without. I was afraid it would hurt the next time I went to the bathroom, but it didn't. I didn't have any effects at all, either positive or negative, a few hours later it was like nothing had even happened. I don't recall reading anything about leakage or relaxing the muscles too much in all the research I did, so I don't really think that's an issue. If it's something your insurance will cover or you can afford, I would certainly recommend it as a relatively non-risky thing to try.


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## Nomie (Mar 22, 2000)

Thanks. I didn't realize it was a little involved. I see my Dr. in Jan and will discuss everything with her. I hope my insurance will pay. I am thinking about the Starr also but doubt insurance will pay for that.


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## sstorm7 (Nov 15, 2000)

Nomie,My crappy insurance did actually pay for STARR (though with my high deductible, co-pays, and such, I still paid quite a bit out of pocket). I believe the total cost was somewhere around $7000-8000 but I forget exactly.I think the take-home message from all my experiences is that evacuation disorders are very complex and not understood well at all. Plenty of normal people with no symptoms have rectoceles and/or anismus upon testing, so there's a lot of debate over what those diagnoses really mean. In all the research I've done, it seems there are a fair amount of people like me for whom nothing works at all, which I hope means there's some undiscovered condition that we have that will someday be treatable. I don't want to discourage anyone from having botox or STARR, because I know they've helped a lot of people, but I think it's good to keep in mind that this is a complicated problem, often without an easy solution.


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## SpAsMaN* (May 11, 2002)

Remember the puborectalis is attach to the pubic bone.I think pelvic pain could tense this pubo-rectal muscle leading to defecation straining.I'm just trying to put things on the table.I think it migth be relevant to find what was the original trauma.How did your problems has started?To me,that's the first thing a doctor should ask.


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## SpAsMaN* (May 11, 2002)

Sstorm,i don't know if STARR can be describe as "rectopexy" but i have found an article from a gastroenterologist which is interesting:http://www.medscape.com/viewarticle/518052


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## purpledream12 (Feb 15, 2008)

Hello ,I have been diagnosed with IBS more than 7 years ago..I have noticed that doctors usually underestimate my complaints ..Maybe because noone one really can understand how troublesome such symptoms could be and they affect your daily life..I realized that things got worse and worse by years that now i feel that having to evacuate is a very stressfull event...and i never have the feeling of total evacuation..I have made all the tests ,defeacography ,manometry and many others and doctors say am a good candidate for starr operation...Although I am a doctor but I fear trying a procedure I have never heard of...and i fear that things could turn out worse than better...I am glad that I have read your experience and guess I wont risk such a procedure...I did ask my doctor about the side effects or disadvantages of such an operation..and actually non of the answers I have got were comforting...I have been warned that my symptoms could go away ,or things stay the same, I might get rapid evacuation which could end in incontinence ...so finally I felt that it is better to get accomadated and try to readapt and accept and live with it than do any manipulation in the pelvic floor..so really I believe that dealing with the rectum which has such a highly complicated innervation of sympathetic and parasympathetic is a v risky task to accepty...and no matter how a talented surgeon is nothing could return ever back to normal...I guess each one shud try to understand more about his bowel and see what things make it less irritative and try to work on that...Thank you


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## SpAsMaN* (May 11, 2002)

Purple,i don't know if one person is enough to draw conclusion.I don't understand why it would not works.When i had my rectoscopy,the day after i didn't strain to evacuate.IT MEANS WHEN THE RECTOSIGMOID OR RECTAL BEND IS STAIGTHNING OR DILATED YOU GO EASIER.Having said that i don't know if STARR correct the bend or dilate the rectosigmoid.Remember,80% of constipated have anal tightness.So it's unlickly that tense anal muscle can mess up the whole motility like many rectal specialist claims.Try suppository when that happen.You may want to consider Dulcolax once a week to clear the bad stuff that have accumulate.Once every others days you won't build tolerance and Dulcolax is rather safe compare to Amitiza.


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## postmortem (Nov 11, 2006)

has anybody else tried the STARR procedure?


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## grits91058 (Jul 13, 2007)

For the IE problem - I am attaching a recent reply I made to another thread:


grits91058 said:


> I haven't posted for a while, but wanted to give this update. I was diagnosed last year with non-relaxing puborectalis and, frankly, have had this problem all of my life. Long story short - am being treated also for years for IBS-C but have found some help with the pubo problem. My GI doc referred me to a local urogynecologist who works a lot with women with pelvic floor disorders. Although most of her patients have problems with interstitial cystitis (inability to empty the bladder due to tight pubo) she felt that the treatment she was giving them may be beneficial to me because the pubo muscle regulates all of lower female orifices. I have been using for over a month now specially-compounded suppositories (inserted vaginally - sorry guys) that are a mixture of diazapam (valium) and amitryptilline (a tricyclic antidepressant). This combination of drugs, when inserted vaginally, are right up next to the pubo and act as a local muscle relaxant. I have shown some improvement - my muscle can still tighten up but this drug does seem to alleviate the spasms that I was having. My understanding is that this is a new treatment developed by another local doctor here in Denver. The dosage of the suppository is a very low dosage (either 5mg of one and 10mg of the other - can't remember which). I use 3 to 4 of them each day. I would urge any female with a non-relaxing pubo problem to visit with a urogynecologist and explore other treatments. There may be other urogynecologists out there using this treatment and perhaps other treatments.


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## SpAsMaN* (May 11, 2002)

THANKS GRIT!I wish it could works for men too.


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## SpAsMaN* (May 11, 2002)

Motility is complicated.Often the push comes from before the obstruction.E.g. if you burp,it can help lower gas to be evacuate.


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## postmortem (Nov 11, 2006)

did the doctors hassle you about requesting the STARR procedure instead of the conventional rectocele repair surgery? you needed a referral for the surgeon right?


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## SpAsMaN* (May 11, 2002)

dude,he said he was worst.


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## sstorm7 (Nov 15, 2000)

Postmortem, The doctors I went to before having the surgery (one obgyn, 2 colorectal surgeons, and 1 GI) had never heard of STARR and advised me against it (simply because it was new and they hadn't heard of it). I didn't have to have a referral though - I just called Dr. Senagore directly and made an appointment. There's a website http://www.starrinfo.com/dtcf/ where you can find doctors in your area.


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## ibskris (Mar 6, 2009)

I am diagnosed with puborectalis paradoxical contraction recently. I have undergone starr surgery hoping it will resolve. It's not helping at all. My problems are many;
Incomplete evacuation.
Spasms in rectum causing all sorts of pain.
Also
1. It gives tremendous pressure when sitting on tailbone
2. One time tailbone swelled very big
3. It gives tremendous pressure when crossing legs
3. Numbness of side if the hips all the time
4. Tremendous pressure on even when bladder is little full
5. Sudden onset of severe pain in rectum like twisted.
6. On thinking high pain and pressure more.

I live Chicago area. I'm planning to undergo Botox treatment. Can you please advise a good colorectal surgeon who does Botox for animus. 
Thank you all very much.


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## Nojokeibs (Apr 14, 2014)

sstorm7 said:


> He mentioned that sacral nerve stimulation might be an option for me someday, but it's not really being done in this country yet for bowel disorders.


emedicine (dot) medscape.com/article/2036909-overview#aw2aab6b2b4

On that page, where it says "test phase" they're talking about using a TENS unit on your lower back. You can buy a TENS on Amazon or Overstock for about $150 and do it yourself without surgery. Google Sacral Nerve Stimulation TENS and switch to Images to find pictures of where to put the electrodes.

Hope that helps you. If it doesn't, then the implanted device wouldn't have helped you anyway. You can ask a chiropractor to help you with the device, they use TENS and are trained in it. So are physical therapists.


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## Nojokeibs (Apr 14, 2014)

purpledream12 said:


> Hello ,I have been diagnosed with IBS more than 7 years ago..I have noticed that doctors usually underestimate my complaints ..Maybe because noone one really can understand how troublesome such symptoms could be and they affect your daily life..I realized that things got worse and worse by years that now i feel that having to evacuate is a very stressfull event...and i never have the feeling of total evacuation..I have made all the tests ,defeacography ,manometry and many others and doctors say am a good candidate for starr operation...Although I am a doctor but I fear trying a procedure I have never heard of...and i fear that things could turn out worse than better...I am glad that I have read your experience and guess I wont risk such a procedure...I did ask my doctor about the side effects or disadvantages of such an operation..and actually non of the answers I have got were comforting...I have been warned that my symptoms could go away ,or things stay the same, I might get rapid evacuation which could end in incontinence ...so finally I felt that it is better to get accomadated and try to readapt and accept and live with it than do any manipulation in the pelvic floor..so really I believe that dealing with the rectum which has such a highly complicated innervation of sympathetic and parasympathetic is a v risky task to accepty...and no matter how a talented surgeon is nothing could return ever back to normal...I guess each one shud try to understand more about his bowel and see what things make it less irritative and try to work on that...Thank you


I'm glad that doctors are reading these forums. Sometimes I wonder. I would guess that you're a caring doctor and help your patients a lot if you are aware of the struggles we face all the time. And the things we don't have time to tell you in person. (15 min if that, isn't much time to say much) I've never tried to manipulate the pelvic floor myself (with botox or whatever), but I do know that Kegel exercises and bowel retraining are both accepted clinical practices and they are both pelvic floor manipulations, as are most forms of sex. I'm not going to be too in a panic over new procedures that manipulate the pelvic floor. My reaction to something I don't know is to try and find out as much as I can about it.

I haven't heard of these treatments before so I will try to find out more using my usual search pattern... the internet, their own websites, the websites of people offering them, and then Pubmed and if needed (if all the articles are abstract only), a medical library. I may even discuss it with my GI doctor if I get really interested. But mostly, I'm happy with my treatment plan. Still, I keep my eyes open because crowdsourcing is more valuable than anything. You just have to have good skills at separating truth from chaff.


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## Nojokeibs (Apr 14, 2014)

sstorm7 said:


> Postmortem, The doctors I went to before having the surgery (one obgyn, 2 colorectal surgeons, and 1 GI) had never heard of STARR and advised me against it (simply because it was new and they hadn't heard of it). I didn't have to have a referral though - I just called Dr. Senagore directly and made an appointment. There's a website http://www.starrinfo.com/dtcf/ where you can find doctors in your area.


Broken link but this seems helpful

www (dot) surgeons.org/media/305370/starr.pdf

Those clever Australians again...


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## Dreamcatcher32 (Nov 12, 2013)

It doesn't sound like you have received the proper treatment and have been lead down all the wrong paths. If your problem is a tense pelvic floor, kegals will make your problem FAR worse. What you need is a biofeedback specialist to relax your pelvic floor muscles. Have you been to Mayo Clinic in Rochester, MN? They have a bowel retraining program that includes biofeedback as well as balloon expulsion. I think you are in desperate need of this treatment.

Also, I think you have a misconception that one needs to have a BM everyday. This is not the case. A person has a BM because they have enough 'waste' sitting at the exit. If you do not have a big enough urge, your body will not feel the need to evacuate. Make sure the urge is STRONG before going. You can have 3 BM's a week and be just fine. I realize this is painful for those with IBS but I do believe a good portion of that is stress.

It also doesn't sound like your diet is working for you. If you're eating a lot of 'binding' foods then you will have incomplete or painful evacuations even if you have no problems at all. You've got to load up on the soluble fibers, oils (olive oil, coconut oil, etc) in between meals. Also take some Magnesium Citrate, the liquid kind you find at Whole Foods. Do keep in mind this can be irritating to the colon, so be sparing. If you change your diet to lots of salads, soups, greens, fruit, veggies and the like there is no human possible way you can have 'hard' stools - even if you don't go for 3 days. Most people just don't want to do this and their diet is the last thing they will change. They'll make 'minor' adjustments... well sorry, that just doesn't cut it. If you have PFD, you need to change your entire diet. If you're going to 'cheat' expect to take some Magnesium Citrate that night or perhaps laxatives.

Finding a 'keyhole' cushion to sit on during the day will help your pelvic floor. Make sure to get a squatty potty and be sure you're 'going' in the proper way. I imagine your 'tensing' when pooping, versus relaxing. You need to be sure the urge is strong and gently belly bloat to get things out. (DO NOT push from your rectum)

Do not use suppositories unless you absolutely have to. These and enemas can make the pelvic floor situation worse. I know first hand! You need to change that diet to soften that stool. Another good recommendation is chia seeds with coconut water. This will make anything slip right through you. Don't go heavy on the insoluble fibers (like Fiber One Bars or Fiber cereals) as these can be constipating.

Have you tried acupuncture? Have you tried hypnotherapy? Have you tried holistic means? Valium suppositories or creams? Please stop with the drastic measures until you've tried other means first.


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## Michael J Famoso (Nov 4, 2015)

Dreamcatcher32 said:


> It doesn't sound like you have received the proper treatment and have been lead down all the wrong paths. If your problem is a tense pelvic floor, kegals will make your problem FAR worse. What you need is a biofeedback specialist to relax your pelvic floor muscles. Have you been to Mayo Clinic in Rochester, MN? They have a bowel retraining program that includes biofeedback as well as balloon expulsion. I think you are in desperate need of this treatment.
> 
> Also, I think you have a misconception that one needs to have a BM everyday. This is not the case. A person has a BM because they have enough 'waste' sitting at the exit. If you do not have a big enough urge, your body will not feel the need to evacuate. Make sure the urge is STRONG before going. You can have 3 BM's a week and be just fine. I realize this is painful for those with IBS but I do believe a good portion of that is stress.
> 
> ...





Nojokeibs said:


> emedicine (dot) medscape.com/article/2036909-overview#aw2aab6b2b4
> 
> On that page, where it says "test phase" they're talking about using a TENS unit on your lower back. You can buy a TENS on Amazon or Overstock for about $150 and do it yourself without surgery. Google Sacral Nerve Stimulation TENS and switch to Images to find pictures of where to put the electrodes.
> 
> Hope that helps you. If it doesn't, then the implanted device wouldn't have helped you anyway. You can ask a chiropractor to help you with the device, they use TENS and are trained in it. So are physical therapists.


I use a Squatty Potty. I can't believe how much it helps. It really works for me.

I got one here http://squattypotty....esolutions.com/


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