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Discussion Starter · #1 ·
Hello,I have been doing a ton of reading on this site and I am incredibly thankful for it. The homework here has really been done! I am so sorry about this but I think I may be a bit overwhelmed by so MUCH information as I seem to have missed some very key points somewhere so I thought I would drop in and ask some questions. I apologize if I am repeating things that have already been covered.My first question would be what type of IBS does not cause any changes in bowel habits (no IBS-D, IBS-C or IBS-A) urgency or relief of pain with defecation? The second question is for persons with some knowledge on IBS pain that never goes into any type of remission. I am one of those people and am wondering why the BRAT or temporary liquid diets would not give any relief. Third question; Does anyone have any thoughts on why anti-spasmodics and anti-depressants would increase rather then decrease pain (yes, I drink lots of fluids)? As a side note of interest Peppermint at any quantity has 0 effect while medications such as Bentyl cause severe increases in pain. Lastly, my insurance is often "surgery" friendly. Does anyone have opinions on undergoing surgery to block the nerves that send pain signals? Ideas on getting my physician to recommend this surgery since it is not generally recommended for IBS ? I realize this last one is a drastic measure and should only be considered as a last resort. Currently, I am not even able to support myself financially as the pain is so great. I have also tried every diet, herb, meditation, medication, yoga, exercise, etc put out there expressly for this condition. Most have no effect on the pain at all. Some such as yoga have too mild of an effect to really help (although I continue to do them) while others cause additional health issues that are equally as problematic or actually make my symptoms worse, so this is not a decision I am considering lightly.I really appreciate any and all input and thank you so much!Shawna
 

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You have all the pain of IBS but perfectly normal bowel frequency and consistency. Everything coming out is normal, as it always has been but now you have pain/discomfort in the abdomen?That is chronic functional abdominal pain and that pain is treated exactly the same way as IBS pain (antispasmodics, antidepressants, mind-body work).Relief after defecation is typical for the 70% or so of IBSers with rectal hypersensitiivty as they can't tolerate any fullness in the rectum. So emptying the rectum makes that go away. It is not required for IBS, but is common in IBS and not common in much else.Most of the IBS pain has to do with feeling pain from totally and completely normal levels of colon activity that are being reported as pain when your nervous system should be ignoring it. That is why diet usually doen't make any difference as it isn't about some food you react to, but that your colon has activity because if it stops completely, you die.A lot of drugs do have abdominal pain as a side effect. It isn't common in the drugs used to treat IBS pain, but anything that can twig the pain nerves in there can twig them the wrong way. It isn't a specific symptom of anything else that I know of.Have you done an IBS specific mind-body thing or just general meditation. Something like IBS-specific hypnosis or cognitive behavioral therapy? Not general versions of those by someone who says they can cure anything and are willing to give it a go, but someone specifically trained to treat those conditions (either in person or with a home set of CDs)
 

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Discussion Starter · #3 ·
Thanks for replying Kathleen M. Actually the pain has been there since the original diagnosis. I don't really know if it would be described as "all of the pain of IBS". The people I have known personally with IBS were unfamiliar with my type of description of pain. It is a stingy, stabbing pain in two very specific locations that never alter position but from what I am reading here many people are experiencing all different types of pain. Yes, I have tried both forms of therapy you are suggesting. The individuals were not experts with IBS but that option is unavailable to me as my insurance carrier only allows it's customers to go to their facilities. No other health plans will accept me because of the pre-existing condition. I had wondered if my condition might be CFAP rather then IBS but I am no expert. My doctors insist it is IBS.I really have tried every option out there unless it is very new. I know this is something that is really frowned upon by people in pain management but is there truly no possibility of obtaining surgery? As it is the pain was always at such a high level I could barely sleep and work. after stopping Depo Provera shots the pain has gotten more and more severe with each passing month. Last week I had to have a friend literally hold me down to prevent me from injuring myself during an "episode". The pain has just gone beyond my capacity to handle it and I am very frightened at what could happen during another episode.
 

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http://www.ibsaudioprogram.com/ is a home based program. I doubt any insurance will pay for it, but it is IBS specific rather than random relxation hypnotherapy or anything designed for something else or done by someone with no training in IBS.Mike is very good and understand IBS very well.I don't know if doctors in the field use anything other than IBS as I think IBS is the only functional GI illness that really shows up on the insurance forms and it is typically used to mean ALL functional GI problems, not just IBS. For treatment it really doesn't matter as there aren't separate CFAP treatments. The CBT study I was in used the same thing for CFAP and IBS and I'm probably about 1/2 way between the two if you really broke it down.I was ready to cut my own colon out because the pain was so severe.Is there a pain management clinic that you can be referred to?If they are using narcotics to try to control the pain that can over time make the pain nerves even more sensitive. A pain management clinic may be able to manage that and also may have some options your primary doctor isn't equipped to use.
 

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Discussion Starter · #5 ·
Thank you for the link Kathleen M. I have tried pain management programs as well. They focused on the things that have all been covered here in other areas and also prescribed Narcotics. It seemed to me that the Narcotics made the pain "rebound" and become even more painful. I discussed it with them and they told me that wasn't possible. I quite taking them then read about NBS and figured that was probably what I was experiencing. Pain Management is one of the things that has helped. Just not enough to reduce the pain to a tolerable level.Since you are discreetly avoiding the surgery topic (which is okay) I will take the hint and see if I can't find more information on it elsewhere. Just as an FYI, I have read many of your posts since I signed on and I think you do an amazing job here. You really put a lot of time and effort on this site and although I doubt no one has told you this before..it is worth repeating..your efforts are very much appreciated!
 

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I could be wrong, but I don't think that you can surgically block the nerves from the gut without destroying it's ability to function properly. It's still doing the same job it's just that you can feel the things that it's doing. Well functioning nerves block normal sensations, the sensation of wearing clothes, for instance, so that you will notice abnormal sensations like injuries etc.I also suffer from functional pain but fortunately it is helped by amitriptaline. However, I also have to do other things to prevent pain like a low gas forming diet, hypnosis and high intensity sport which shuts the gut down. I'm not pain free but there is enough of the day when I am to make my life pretty good. Because of this I can also get slack with my diet sometimes and suffer the consequences.....Yes the pain can be intolerable - nearly as intense as childbirth but worse really because there's no point to it.
 

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I really don't know enough neurology to know if there is any surgery that can do what you want. Usually pain management doctors are the types of people who I would think would be involved in doing pain nerve kinds of things.If there even is a surgery that could do what you want it is apparently very rare or not done in IBSers and I have no idea how you go about finding a doctor to do it to you or any data about what kind of success rates there are or what kinds of complications you may be looking at if they do that.Do you need me to say more about the fact I have no information at all that is helpful in your quest for surgery? I don't know if anyone else here does. I wasn't avoiding it because I have some issue with surgery. I just really have nothing all that useful to say.A few people have had full colon removal for extremely severe constipation on this site and I have talked to them. But that wasn't done just for pain issues, but for constipation so bad you might go a couple of times a month even with laxatives. That sort of abdominal surgery can cause more pain that is even harder to treat than the IBS/constipation causes for the few unlucky ones (which is why they usually only reserve this surgery for the most severe cases, once you break it, you can't fix it ever again). Sometimes you are lucky and you don't get scar tissue that makes it worse, sometimes you are not. Any abdominal surgery can cause adhesions that make abdominal pain worse.I have heard of various nerve block procedures but usually they aren't surgery and I really don't know much about them as even as bad as my pain was (and I literally couldn't walk more than 5 feet at a time) I never got offered anything like that and it seems pretty rare for IBSers to get that. But like I said if pain management doctors don't do pain management procedures I have no idea who else to go to other than maybe a neurologist.
 

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Discussion Starter · #8 ·
Jillywindy I don't know that you are wrong on that since from what I am understanding it requires destroying certain nerves in the spinal cord which is extremely dangerous. Since I can't remember the name of it I have been having a tough time locating the information on it.Thanks for replying:)
 

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Discussion Starter · #9 ·
I am sorry Kathleen M. I did not mean to sound snappish in the least. It has been 24 years of trying one remedy after another with the symptoms only growing worse over time. On top of that I have been dealing with a medical establishment that won't even run the other tests ( H Pylori, endoscopy, abdominal ultra-sound, CT etc) to see if I might have something other then IBS. If I have Chrohn's disease for instance and I am using remedies for IBS it may not fix the problem. I did not mean to be taking that frustration out on you though.I am also aware of how very dangerous abdominal surgery can be. That is what started all of this. I had an emergency surgery and shortly thereafter is when the pain started. Yes, I have read up on the nerve block procedures. Specifically the one called cryoanalgesia which if I am understanding properly is similar to Radiofrequency ablation only it uses cold to destroy the nerves rather then heat. It has been used for patients with IBS although it is incredibly difficult to get doctors to do it for this type of pain. It is also generally only temporary lasting 6-24 months because nerves regenerate so a person is back where they started. It also has some serious complications including permanent paralysis if something goes wrong. In effect that is actually why I was stating that I know most people well versed on the subject (and I would consider you extremely learned on it) have a strong opposition to it. It seems silly for a person to consider taking such risks. However, because my quality of life has been so poor for so long I am willing to take the risks but even I wouldn't recommend it to anyone else.
 

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Just because I don't discuss in depth something I don't have any knowledge of doesn't mean I am opposed to it.Have you even had a complete blood count done. At any time, for any reason over the last couple of dozen years.Crohn's and other autoimmune diseases do show up on that routine blood test.For what it is worth talking to people with IBS and with Inflamatory Bowel Disease my IBS pain was much worse that what they go through and much more difficult to treat.You do not need something else to have severe pain. I spent plenty of time curled up in fetal position not moving because every movement was at a 10 on a 1-10 scale. So I do actually understand IBS can hurt (and CFAP as I'm probably somewhere between the two) A LOT.
 

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After years of pain, including two gyn surgeries resulting in painful scar tissue along with my IBS, I asked my GI to put me on nutritional IV but he refused - the pain was so bad I didnt want to eat any more - even the meds didnt help my IBS pain and symptoms - the hypno program did address it for me - Surgery should be a last resort, but I was ready to have my intestines removed the pain was so bad - but I did the hypno as my last resort, and that did address my pain significantly - it gradually creates new synapses in the brain-gut connection - so their is a measureable physical change.If you have questions re the IBS Audio program you can call 877-898-2539 and someone will get back to you.You really are good at looking into your options - everyone has to find their own way - IBS can be so debilitating and my GI said he could control the pain in his colon cancer patients better than his IBS patients - so you do have our empathy...Good luck to finding your way - take a look at the link below for my journey -
 

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Scout I can definitely identify with the pain you speak of. 10+... off the charts pain.. stop talking and walking type pain.. take your breath away (literally) type pain... can't stand up straight type pain & unrelenting. Yup>> I get it. Been there got that shirt.And truly... the IBS Audioprogram knocked the daylights out of my pain. Worked like nothign else did & better than narcotics by far. I wouldn't dismiss it as the typical "pain management" that you spoke of above. Hypnotherapy is different than "pain management".Please read more about it in our CBT/Hypnotherapy Forum.(Click here to get there: http://www.ibsgroup.org/forums/index.php?showforum=9 )It is an awesome and economical program one can do easily in the convenience of their own home. The cost of it is about what one would pay for one or two in-person sessions. And one then owns it ...for always... to relisten to as desired. It changed my life that's for sure. And I hope the same for you.All the best
 

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Discussion Starter · #13 ·
Well, I certainly won't ignore all of this good advice on the hypnotherapy. I did notice the stories here about it but haven't read any of them. I just have literally thrown hundreds of thousands of dollars at the problem with virtually no results after reading "mini" testimonials about this product or that and figured it wasn't worth it to try . It gets very discouraging but I got to thinking about how often people tend to think in those terms of "if I just throw enough money at the problem it will fix everything" and that led me to read a few more stories here. Everyone is finding a combination of things that has worked for them and many of them have the common denominator of programs that trust the body more to do the healing. That's a tough one as I'm sure a lot of people like myself feel as though their bodies have betrayed them.So even though this program would cost money perhaps trusting an exercise that works with the bodies own healing abilities is a much smarter bet! Thank you.
 

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Do you have a personal story as well posted somewhere?
No and no forth coming book offers either.. dang it!(Just kidding.. lol
)
 
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