they say it's my fault

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getting tired
New Member


Date Joined Jan 2008
Total Posts : 3
   Posted 1/13/2008 9:21 AM (GMT -7)   
hello,
I new to this site but was very much in need of some support dealing with some of this. I have been dealing with IBS for 6 years have tried many many things of course LOTS of fiber only seems to make things much worse!!! the only relief I have ever gotten is using laxitives mild of mag worked but after a while it tastes sooo bad it doesn't stay down. but, I have out of necessity managed to control this quite well using the senecot-s product (samples were given to me by my clinic). the problem is when I was referred to a gastro spec. (again) for a consult and to repeat my colonscopy in dec. this guy looked through my chart informed me that I seem to have tried everything to control this disorder he then (after only about 10 min of coversation) recomended a colectomy!!!!!!!!!!!!!!!! I was in shock that seemed a little drastic and if all doesn't go right during surgery I wake up with a BAG!!! NOT GOING TO HAPPEN. having a mother that died from colon cancer I watched her cry many times after they did the bag thing to her because "she smelled" I discussed this with my uncle (a doctor out in CA) he agreed this was too drastic right now and that this procedure would be more disruptive to my life then dealing with IBS is. but these people keep pushing this idea I feel like I'm being stocked!! between phone calls and letters I don't think I have had a day this week that I haven't heard from one of them! needless to say my stress level is out of this world giving me one of the worst weeks I have had in YEARS with this IBS thing. nice that my med. professional do that!! when I pushed them for more of an answer as to why this all started I was told "it's my own fault for abusing laxitives!"   I'm soooo angry right now all I can to is cry!! I never used these things before all this started and nothing that the doctors did helped just made things worse not to mention the milk of mag and other laxitives they either gave me samples to start or they knew about from the start!!
I got a copy of my file so I can see someone else and like an idot I read it and am sick about this whole thing I can't belive the nasty things they say in this file one of the gastro drs even states "hopefully we can help the situation that SHE has gotten herself into"  and that he feels the probelm is "her attitude that this should just go away". I feel like I have been kicked in the stomach am just sick that I have been trusting that these people were trying to help me resolve this issue when they clearly viewed me as simply one more female with more emotional problems then anything and wasting their valuable time. I am sooooo sick of male doctors treating me like that if this was a problem that was found more in the male population then female there would be a lot more research and better treatment. ie; the treatment for enlarged prostate is not to treat them like they are crazy and remove the body part!!
 
I guess the bottom line here is how do I deal with all this nasty attitude and not get my gut tied in an even bigger knot?
 
 

Sarita
Veteran Member


Date Joined Mar 2005
Total Posts : 2486
   Posted 1/13/2008 10:58 AM (GMT -7)   
Hi tired, welcome to the forum - I am appalled by your story and hope we can help you! First of all, you need to get a second opinion from another GI. I know you are sick of seeing doctors but there has to be another solution. I always say that people should get a second opinion before even considering surgery of any kind, especially in such a drastic situation as this. We've had many members on this forum with very difficult problems with constipation and I hope they can offer their opinions/suggestions as well.

Whereas it is a common problem to end up with severe constipation due to misuse of laxatives (note that I did not say "abuse," which in my mind has a negative connotation), it sounds like you were not advised in the first place how to take them, or you were not given proper relief with what you had been given. This is a shame. Now is the time you have to be very proactive. If you gives us some ideas of what you've tried in the past, how bad your constipation is, a little more history, etc. maybe we can give you some helpful hints so you can go into your doctor more prepared and "renewed," so to speak, to try to tackle this problem.

Again, welcome!
Co-moderator - IBS Forum


gutastrophe
Regular Member


Date Joined Jul 2007
Total Posts : 319
   Posted 1/13/2008 11:04 AM (GMT -7)   

Poor thing!  I'm sorry to say this, but it's not just male doctors but MOST doctors who treat IBS patients with this lack of understanding and compassion.  You will find that almost everyone on this board has experienced this at one time or another.  It may be the worst part of dealing with IBS - the medical community doesn't seem to have any "answers" and tends to "blame" the patient.

Some things you've been told are true.  Chronics laxative use CAN lead to compromised bowel function but usually that does not occur for many, many years.  When I was in my late teens and early 20's (that's 30 years ago!), I could not have a BM without using either a laxative or suppository.  However, once I got myself "unhooked" from daily laxative use, I was able to have some restoration of normal bowel function.  There are ways to deal with chronic C that do not entail surgery.

I've found naturopathic medicine to be a helpful compliment to all that I do through conventional means.  You might want to check into seeing a naturopathic doctor who will take the time to thoroughly discuss and investigate your unique case.  Surgery and drastic measures are never a possible outcome with naturopathic medicine and since they consider the digestive system to be the primary factor involved in most health conditions, they have studied it more intensely than most physicians.

While I know this is difficult, you have to try not to take personally the comments you read in your files.  I would strongly encourage you to find another doctor as it is clear you will not receive the kind of attention and help you require from those who consider you "at fault" for your condition. 

If you are currently dealing with chronic C, there are new drugs available that many have found helpful.  There are dietary approaches you can take that will help and a nutritionist can steer you in that direction.  Simple adjustments like increasing your water intake and even moderate exercise can help stimulate bowel activity. 

I think you are wise to rebuff their agressive tactics regarding surgery.  Move on and find yourself a "team" of docs who will take your case seriously and work with you to find some answers.

 


Marsky
Veteran Member


Date Joined Jul 2007
Total Posts : 1956
   Posted 1/13/2008 11:31 AM (GMT -7)   
Your post tugged at my heart too. I've had 2 very rude confrontations with a GI doc, not my regular one but a partner in his practice. He was the only trained or best trained GI for a rectal ultrasound, which was ordered prior to my colon surgery for cancer. He was very impatient with me, the test went on for 1 hour and 15 minutes. Not painful but uncomfortable. Second time my regular GI doc was out of town for my usual colonoscopy and this guy performed it. He demanded to know why I was having annual colonoscopies. I explained it was b/c I had cancer. He said oh no, you did not have a malignancy. I said oh yes I did, you look thru my chart, he did and realized that all these procedures were vital to my screening. I rattled off all my stats - 5 hour surgery, temp colostomy, take down surgery, all the procedures I had done, how my sigmoid was removed, where the tumor was located. By the time I got done he knew he was in the wrong. And I had a split second decision to make - continue with the colonoscopy since I had done the prep and has my husband lined up to drive me home (he had taken off work) or walk out, returning for the procedure when my regular GI doc was back. I ended up going ahead with it b/c of convenience. But I hope to God I told him off while I was under Versid. They say you reveal all sorts of things to the docs, nurses. I hope to he** I told him how he was a jerk to me, not once but twice. I will never have him touch me again, unless I need the ultrasound. And then I will ask to be sedated.

There are very insensitive cut-happy docs and surgeons. They then tell you to "eat anything" you want and to "enjoy life" after a major colon surgery.

All I know is they either have stock in toilet paper companies or plumbers (I've worn out 3 toilets in this house, all 3 have had brand new innards twice, in 8 years). I spend so much time in the bathroom.

And for what it is worth - a colostomy is NOT the end of the world. My colon surgeon thinks I'd do better with having my lower colon completely removed, a colostomy as low as possible and have one that I would irrigate once a day, not wearing a bag. She claims all I would need is a bandaid. Now I've been thru so much in 8 long years I just stared at her when I heard the band-aid bit. I flat out do not believe that is all that I would need! So I'm sticking with my own body, for now, the way it ended up 8 years ago.

There's an ostomy board here, that would be helpful to you also.

And finally, I find that it's best to consult with real, honest to goodness in the flesh colon surgery patients, if you can find them. I have never been able to find a colon cancer support board in my city. There's a Chron's (sp?), Colitis and IBS one though. Since my symptoms mirror what you all go thru, I find support here but I just think I'd be wasting their time, since all of my symptoms are from surgery and losing such a vital piece of my colon.

I wish you the very best here. Get a second opinion. My current colon surgeon is very understanding. I just don't believe her when she suggests the inverted or whatever they're called colostomy! I'm not there yet. Sounds as if you're not there yet either.

Mary/Marsky

Easta
Regular Member


Date Joined Aug 2007
Total Posts : 124
   Posted 1/14/2008 3:00 AM (GMT -7)   
So sorry to hear of your experiences. Some medics in the UK are just as unsympathetic also and careless about reading medical records. I had a hysterectomy in 1992 and yet am still asked, when attending the breast clinic, whether I check my breasts after each period!!!

Certainly some doctors are rather dismissive of IBS - the "if it isn't life threatening, why are you so bothered?" attitude. Try to find a more empathetic health provider. Such alternative remedies as reflexology and acupuncture have had good results with some sufferers and this might be a route you care to investigate.

It is difficult but try to stay positive as getting depressed can soon lead to a downward spiral of utter hopelessness. Easier to say than to do, but important nevertheless. Good luck!!!

Keriamon
Veteran Member


Date Joined Jun 2005
Total Posts : 2976
   Posted 1/14/2008 9:05 AM (GMT -7)   
Did anyone try you on Zelnorm? Certain doctors are again allowed to prescribe it under serious circumstances; I would say that if the answer to your problem now is removing some of your intestines, that would make this a serious circumstance. What about Reglan? I know that's supposed to help speed up the emptying of the stomach, but I think someone on here said it helps speed up the entire digestive tract as well. It's not nearly as bad on the side effects as the Zelnorm and has been around a long time.

Have you tried magensium supplements? They are a natural laxative. How about probiotics; sometimes people with C get a little help from them. I understand you with the fiber; I tried a supplement once and got worse C when I had C and worse D when I had D, so I avoid fiber supplements now. However, there is something that's either a non-addictive laxative or fiber supplement that people on here with C recommend as helping. I think Canyonbabe takes it. I'm sure someone will come along and give you the name of it.

Can you tolerate prunes and/or prune juice? They're still a laxative, but I think they cause less dependency and damage than chemical laxatives. Also, one of our members recommends colon hydrotherapy, which is done in a clinic by a licensed medical staff and is like a deep enema. He says it softens up backed-up stools and allows him to pass them normally, and he is able to pass stools for a little while (anywhere from a week to three, I think) before he gets backed up again. If my only other option was surgery, I'd be willing to try it. Just don't confuse it with a colon cleanse, which uses laxatives.

If you can hang on a bit longer, I read somewhere that they are in the final clinical stages or waiting for FDA approval on a new constiaption medicine that's supposed to be a replacement for Zelnorm.

You certainly may have tried all of this stuff before with no success, but I offer the information because in many cases "tried everything" means you've tried every prescription medicine and that's it. Most GI doctors don't even know to tell people with D to take calcium because it's naturally constipating (or eat bananas for the same reason); there's a real lack of knowledge about things that you can take over the counter or diet modifications that might help. Many people on here control either their C or their D with a daily regimen of multiple things, so keep that in mind; if one thing helps you a bit, add something else to see if combined they help you a lot. Also, I would agree to go see a natropath or someone like that because they are more likely to know about the OTC stuff and diet changes that might help. I'd try one of everything before I gave in and had surgery done.

gutastrophe
Regular Member


Date Joined Jul 2007
Total Posts : 319
   Posted 1/14/2008 10:03 AM (GMT -7)   
Keriamon said...

Have you tried magensium supplements? They are a natural laxative. How about probiotics; sometimes people with C get a little help from them. I understand you with the fiber; I tried a supplement once and got worse C when I had C and worse D when I had D, so I avoid fiber supplements now. However, there is something that's either a non-addictive laxative or fiber supplement that people on here with C recommend as helping. I think Canyonbabe takes it. I'm sure someone will come along and give you the name of it.

Can you tolerate prunes and/or prune juice? They're still a laxative, but I think they cause less dependency and damage than chemical laxatives. Also, one of our members recommends colon hydrotherapy, which is done in a clinic by a licensed medical staff and is like a deep enema. He says it softens up backed-up stools and allows him to pass them normally, and he is able to pass stools for a little while (anywhere from a week to three, I think) before he gets backed up again. If my only other option was surgery, I'd be willing to try it. Just don't confuse it with a colon cleanse, which uses laxatives.

Great ideas!  I just wanted to add that magnesium has been a godsend for me.  While I don't take the supplements every day, I do use the mag citrate for general bowel clean-out when things get dicey.
I also used colon hydrotherapy.  Fortunately, my GI guy recommended it so I was able to have the treatments covered by insurance (although they're not terribly expensive if you must pay yourself).  I have NEVER felt better in my life than I did while I was having this therapy.  For many, it can help "tone" the bowel naturally and stimulate function even after you stop the the treatments.  I am a big supporter of this option for people who suffer with C.

getting tired
New Member


Date Joined Jan 2008
Total Posts : 3
   Posted 1/14/2008 7:30 PM (GMT -7)   

Hey thanks for all your input! your right I did try the zelnorm it worked great for about 2 weeks also tried the new one amitiza was wonderful I had forgotten how good I feel when all is working well but it only lasted about a week. I am currently seening a chiropractor who also does zone treatments to stimulate nerves that aren't up to par it seems to help so I am continuing with that for a while. I will also be rechecking hormone levels have been on bio-identicals for a while they helped with hot flashes etc. someone told me they had less trouble with c when they got all those levels right. seems to fit since I tried telling the docotrs when this started that it seemed to begin when my cycle got irregular. of course they were guys so they treated me like I was the crazy one. but having read through my file this weekend I was reminded how often that little subject came up and got dismissed to where I even forgot that little element since that was before the hot flashes bad memory etc. started. I guess it's easy to forget how gradually this all began. I have tried a variety of "natural" products of course the docs don't support it. but I am seeing someone new this week to work on the hormones I got her name from the pharm. that does my bio-creams she believes in them so I'm hoping she is familiar with the other. Steve and the pharmacy said I would like her. (after the shock of what the gastro guy wants to do passed) I have been amazed how many other "professionals" have been as blown away by his suggestion as I am. they have all agreed with my response that no way will I let them do that surgery, there is no reason one even said even if you have to take a laxative regularly for the rest of your life BIG DEAL thats better then living without your colon! I choose to believe him if I can't find a better solution than that I can live with that easier then living without my colon. and I have always found the pharmacists to be more knowledgible then a lot of docs when it comes to meds be they rx or over the counter.

I am wondering the magesium is that a supplement? as the milk of mag tends to work too well it's like the prep for the colonscopy can't go too many feet from the bathroom. but maybe the supplement would do the trick?

thanks for all your input! trust me no surgery happening here!!! I won't even see anyone in the gastro clinic again EVER after reading what they wrote about me in my file! and to think I paid them to treat me like that. but it's good to know my instincts were right I told my gp that was their attitude but was told they wouldn't be like that!! as my late husband always said (he was an attorney) NEVER ARGUE WITH A WOMANS GUT FEELING. it's not very often wrong.


gutastrophe
Regular Member


Date Joined Jul 2007
Total Posts : 319
   Posted 1/15/2008 12:32 AM (GMT -7)   
So glad to hear that you've resolved this issue of surgery for yourself.  A few years back I went to a colorectal surgeon to inquire about surgery because I was so disgusted and fed up with this disorder.  He nearly laughed me out the office.  He said if I found a surgeon who would agree to do this, then that surgeon should have his license revoked.
 
I wondered about your experience with Zelnorm and Amitiza.  You said you took the former for two weeks and the latter for only one.  May I ask why?  For me, Zelnorm was a horrific experience but I stayed on it for several months.  You said both drugs worked well for you.  Did you doc's tell you to stop?
 
I haven't taken the mag supplements although I'd like too and would appreciate any suggestions about what type (mg) is most effective.  I do take the mag citrate (the liquid) occassionally and yes, you do have to stay very, very close to the loo!
 
Good luck!

Keriamon
Veteran Member


Date Joined Jun 2005
Total Posts : 2976
   Posted 1/15/2008 9:15 AM (GMT -7)   
Yes, the magnesium is a supplement and you can find it in the vitamin section. Not sure on the dosages; there are people on here who take it, so hopefully they will be on here to give you an answer. You might even want to make it a separate post titled "How much magnesium to take?" so people who are on magnesium will see the question more obviously.

For me, one (much less the two recommened) Imodium will constipate the heck out of me. So if I need one, I will split a pill in half and only take the other half if I'm still having D 30 minutes later. That way I don't take so much that I get bad constipation. If Milk of Magnesia works too well, try lessening the dose; nothing wrong with taking less of an OTC medicine than it calls for.

Also, I forgot to mention that aloe vera is a natural laxative. You can get it in capsules, which is the best-tasting option. It is a dependency laxative and can cause dependency like a chemical laxative, but I think it takes longer to develop that problem with it. Also, many people would rather be "addicted" to a non-chemical laxative, and it's not as bad to give you cramps and gas. My mother found out about it working like that when someone recommended she take it because of hair loss. She ended up having to take one capsule every other day because it made her a little too regular otherwise. She did quit losing her hair, though. I think it's also supposed to soothe irritations in your intestines.

Keriamon
Veteran Member


Date Joined Jun 2005
Total Posts : 2976
   Posted 1/15/2008 12:36 PM (GMT -7)   
I just read this on Slate magazine in an article talking about using the power of the mind to cure the body (e.g. laughter, positive thoughts, etc.). The quote is from some of the detractors of that theory. I couldn't help but see a lot of IBSers, though, in the same sort of blame game--that they caused their illness and/or the way they think about it is keeping them from overcoming it.

"In the late 1970s, Susan Sontag famously attacked the belief that character causes disease. "Patients who are instructed that they have, unwittingly, caused their disease are also being made to feel that they have deserved it," she wrote in Illness As Metaphor. Marcia Angell, then an editor at the New England Journal of Medicine, echoed the fear that patients swept up in psychologizing would feel "the anguish of personal failure" if they couldn't cure themselves and might even "come to see medical care as largely irrelevant." "

getting tired
New Member


Date Joined Jan 2008
Total Posts : 3
   Posted 1/20/2008 9:54 PM (GMT -7)   

What a week!!

this week started out with my gut a mess!! funny how if this is sooo tied to stress why would the gastro jerk be the driving force behind a TON of stress in my life? I have not had this much trouble with my IBS in years and it's all been tied to consulting a gastro pro again heck he didn't even go over my lab results with me when my test came back as precancer and NOT benign as he not only said but it's on my paper work sent home at the time the colonscopy was done!  I went to see an internal medicine doc on Thursday and all I can say is THANK GOD FOR HER!!!!!!!!!!!!!!!! she was shocked at the proposal of removing my colon and after much conversation and goin over my medical history I found out that with our cancer history on my mother's side some of it may be genetic!! no one has ever told me that before but good to know for my kids and grandkids! also she explained that there is a connection between IBS and having big babies (I never thought they were so big) but they were 20-21" long so they qualify as "big" also found out that as we  (females) age and our test. levels drop that adds to this problem as that is the mobility hormone. so what we are doing is testing for different alergies for six weeks I am on a VERY low fiber diet and she added some test. to my bio. ident. creams. I also went to my local and EXCELLENT chiro. she gave me some ab. massag. to do and some samples of a tea that is a digestive aid. I am sooooo very excited as it has now been 3 days and I have not taken ANYTHING to aid with bowel movements!!!!!!!!!!! and I have had at least one a day! I am very hopeful but I also know that at this point I have very little fiber in my diet so I will keep my fingers crossed and keep you posted how all this works. my internist tells me things will never work as good as they did when  I was 20 something but there is no reason we can't deal with this beyond removing my colon.

I'll keep you all posted how this works.

ps. if your interested the tea bag has a web address.

www.TOTALTEA.net


Canyonbabe711
Veteran Member


Date Joined Mar 2006
Total Posts : 1451
   Posted 1/20/2008 10:59 PM (GMT -7)   
How wonderful that you have found something helps. I looked at the site but found there are herbs in it that are related to other things I am allergic to like Chamamile is in the Ragweed family. People with allergies to grass, weeds, trees, etc need to be very careful. It sounds like you are doing very well and I am so glad tha surgery is not in your thinking now. I wonder, too, about that Bandaid comment. Not familair with that. Please keep us posted on how you are doing.

I don't take anything on regular basis for Constipation as was mentioned.

Marsky
Veteran Member


Date Joined Jul 2007
Total Posts : 1956
   Posted 1/20/2008 11:00 PM (GMT -7)   
Keriamon - that makes sense to me since when I feel my worst out in public, I hole up in a bathroom somewhere, preferably a public restroom with many stalls (#1 fave are rest stops, #2 casino's and no I don't gamble, hubby plays blackjack a few times a year and I well, visit the ladies room a few times after the buffet...LOL) I close my eyes and pretend I am home. In my favorite bathroom, warm and cozy in there. In other words, mind over matter. Does it work? Well, over 50% of the time it does! So there could be something to that theory afterall.

getting tired - sounds as if you have a strategy now and have received help. I hope the tea helps. I know caffeine is a big no-no for D or almost-D (as I struggle with, what I call the putty stage) but it does seem to help me. I just make sure it isn't too strong and it does soothe my gut.

Feel better....

Marsky/Mary

gutastrophe
Regular Member


Date Joined Jul 2007
Total Posts : 319
   Posted 1/21/2008 1:29 AM (GMT -7)   

Hi tired!

Just wanted to encourage you to continue with the belly massage.  This was the most beneficial technique I took away from the hydrotherapy treatment.  I do it CONSTANTLY and I swear that nothing else gets my guts as excited as this!  Here is the massage practice I use:

http://www.tummytemple.com/chi_nei_tsang.html

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