I am at my absolute rock bottom with my IBS...

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Rega Vega
New Member


Date Joined Jun 2008
Total Posts : 1
   Posted 6/15/2008 6:20 PM (GMT -7)   
sad  I am new to this sight but have had IBS and Fibromyalgia for years. I am 44 and it started in my mid-twenties. I just ended up having my GB out and I am just as bad if not worse. I feel I have a decent Gastro DR. but as doctors go. I am female and I think DR.s poo poo women alot of the time with this stuff. Now, I shall say...I have thought of suicide at times due to the constant neverending struggle particularly with my gut. I hurt daily. Before and during BM's most of the time I am wailing. It HURTS!. I take Elavil (Amytriptlilene?) small dose for spasms. Not helping. My stools are either green and loose or have moderate blood. Had 2 colonoscopys in past year and right now am clear of polyps although 1st one a year ago I had 5 significant precancerous adenomas removed from my colon. I am miserable and honestly wish i never had to eat again.
Any feedback? 

7Lil
Veteran Member


Date Joined Apr 2005
Total Posts : 3269
   Posted 6/15/2008 7:08 PM (GMT -7)   
((((((((Rega Vega))))))))

Welcome to HealingWell! :-)
I am so sorry to read of all your struggles with your guts. Unfortunately, it isn't that uncommon for people without a gallbladder to struggle with bile D. You came to a great place and, hopefully, we can give you some great tips and be here for support.
First and foremost, have you looked for another GI doc? I went through 2 before I found a 3rd to stick with. It's hard finding a good doc that takes the time to listen and not shove you out the door after 4 minutes.
What is your current doc's action plan for helping you control you D? I really hope s/he hasn't cast that aside as "normal." If you look around this site you'll find the most common suggestion for D associated with no gallbladder is a combination of Welchol and calcium. Welchol is actually a cholesterol med thats side effect is binding bile and helping prevent D. Calcium also works by sucking up the extra water in the gut. I would definitely talk to your doc about trying both these options. Calcium you can buy yourself OTC, but Welchol is prescription.
As for you anti-spasmodic... You should ask your doc for another. There are so many on the market that you should be trying a new 1 each time you get 1 that doesn't work.
Remember, no one is going to fight for you but yourself. Be pushy. Ask questions. Demand to be heard.
I hope others come along with more tips for you.

Hang in there and NEVER give up hope.


Co-Moderator IBS Forum
 
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Worried_Erin
New Member


Date Joined Jun 2008
Total Posts : 15
   Posted 6/21/2008 11:40 AM (GMT -7)   
Hi,

My Mom has recently said that she wished the pain would go away and that she wants to "take a bunch of pain pills and just go to sleep forever". It really scared me. I am so scared for her. No one seems to understand her constant pain. Every waking hour, with out massive amounts of pain killers, is so painful that she can't really function. She just lays on the floor, curled up in a ball crying. The doctors change her meds constantly, and can't find a good treatment schedule to help her function. I don't know what to say or how to act when she gets like this. I just hope she knows how much I care for her.

I wish you luck and I hope that you get some relief.
Erin

Fluffytwo
Regular Member


Date Joined Sep 2006
Total Posts : 100
   Posted 6/21/2008 4:24 PM (GMT -7)   
  confused   Have been on Colestid for years similar to wescol 2 - 5 gram packets a day.Helped some but continued it.The Diaehrea (sp) everyday over and over. Colitis forget what kind.
 
Have had some bad arthritis could hardly walk. Went to a rhemy and after $4000
worth of tests was diagnosed with Polmyagia Rheumatica. I guess arthritis and IBS are commonly had  together.
 
Now back to the big D and colestid.
The rheumy had me stop  the colestid. It had stopped me from absorbing vitamin D. Was severely depleted in vit. D. Put me on prescription vit. D.
I am now on Pacquenil for the polymyalgia, my family dr. put me on Diflucan for yeast infection. I think it has helped my colon.  My tongue was coated.
 
Hope this helps someone.
Fluffytwo

Canyonbabe711
Veteran Member


Date Joined Mar 2006
Total Posts : 1451
   Posted 6/21/2008 9:10 PM (GMT -7)   
Rega, I think I would look for another doctor also. I was not aware the Elavil was used to spasms though I know it works for some pain. There are other spasmodics that are more well known. Donnatal, Bentyl are two of the most effective. Have you had the camera swallow. When you mention blood that sets off alarms which is why I mention the camera as that is supposed to tell where blood is coming from. I really think you need another opinion. I assume you have had all CT scans, ultrasounds,etc. I certainly hope that you can find a solution soon. Same for Erin's Mom, There has to be a solution to stop the pain. Hopefully she has had all the tests also but there are a lot of tests and Doctor do not alway do them all. Erin, has you Mom had a gyno workup? Some of this could be something other than intestinal.

Amejalli
New Member


Date Joined Jun 2008
Total Posts : 2
   Posted 6/21/2008 10:21 PM (GMT -7)   
Dear IBS Forum:
I have had IBS (constipation mostly) for 20 years and the only relief I get is from colonics...I swear by them-
Renee

Worried_Erin
New Member


Date Joined Jun 2008
Total Posts : 15
   Posted 6/22/2008 1:34 PM (GMT -7)   
Canyobabe711,
I'm not sure all that my mom has had, but I think she has had: camera swallow, ct, ultrasound, blood work, galblader removed, colonoscopy . . . She has been seeing her gyno, her gastro dr, and another specialist in Dallas.

However, all she does is lie on the floor crying. She can't seem to get releif.
She has extensive pain on her left side, gas, bloating, acide reflux, and although she is on Amitza (sp?) she isn't "going". I'm not sure what to feed her either. When she feels like she can force some food down, she has been eating chicken soup, bananas, canned pairs, potatos, rice, and egg noodle pasta. I've also given her some chicken, and I made a pot roast last night. She used to eat a lot of yogurt but has since stopped. I just don't know what to do. I live 500 miles away from her and took a week off from work so that I could take care of her during this "episode". My dad isn't doing a good job with the care taking. Not that he is a bad person, but he just doesn't have good "bed side manner". He gets angry with her and gets frustrated. She goes through cycles of taking all her meds, then going cold turky. She hates the way the meds make her feel, but once she is off them for long enough she can't stand the pain anymore and gets back on them. my dad takes her to the ER when she asks, but they only pump her full of morphine and send her home with an ibs pamplete.

I've tried to get her to read up on ibs and eating for ibs, but she is too depressed. What she wants is something to absolutely cure her, and I ca'nt give her that..... I just don't know what to do.

Canyonbabe711
Veteran Member


Date Joined Mar 2006
Total Posts : 1451
   Posted 6/22/2008 2:13 PM (GMT -7)   
Poor thing. You are a good daughter and your Mom can be proud. Men sometimes just don't handle medical things well especially when it comes to "personal" stuff. I don't really think I have ever heard of such an extreme case. I hope she can get to a teaching hospital like Baylor. Has she been given Reglan for motility. about all we can do is throw out ideas but if she has been to that many Doctors I think they have probably covered the bases.

Worried_Erin
New Member


Date Joined Jun 2008
Total Posts : 15
   Posted 6/22/2008 4:11 PM (GMT -7)   
She went to a gastro doctor at Baylor in Dallas. But only as a referal for more tests, which concluded that her brain didn't have any abnormalities in the "area that controls the stomach and/or bowels". The doc here thought she might have a tumor or somehitn gin the brain that was causing all these problems.

I fear that it is something way more serious than IBS, as it makes her completed disabled during her "attacks". But then again, I wonder if it is just IBS. She was feeling a lot better yesterday, and had a glass of milk before bedtime, and hten woke up feeling worse than ever. She again got upset, depressed, confussed, and decided to go cold turkey on her drugs. That lasted until about 430, then she couldn't handle the pain anymore. So now she is sitting in the living room, staring at the tv, but basically in a drugged induced zombie state. I hate that she is either drugged up or in pain. I want my Mom back! I want her to be able to hold a conversation with me, go shopping with me, enjoy my company, and live a normal happy life... But right now, she is either completely broken down or a zombie... and my dad is emotionally removed, or angry. It sucks. I'm only 26, and I feel like I've lost my mom. I love her so much and I would give ANYTHING to see her feel better.

I just bought Heather Van Vorous's books "An essential guide for the newly diagnosed" and "eating for ibs". I hope she reads them. I am going to try to educate myslef as much as possible and do my best to educate her. I wish there was a magic pill to make this go away, but it doesn't seem that there is one. The Amizita (sp) causes her so many horrible side effects that at only 3 days in, she has stopped it. And I don't blame her as it makes her dizzy, nausious, and causes her stomach to be filled with acide and she is constantly "burbing up" food and acide. After 20 minutes of taking the pill, if she isn't sitting up she will vomit.

She is going to try to take miralax again, and hopes that will help her have movement in her bowls. Although her pain killers, hyrocodine, are causing her to be more constipated. It is a hard situation for her, cause she needs to not have pain to be able to eat - she has already lost over sixty pounds, but her pain killers are causing her bowls to shut down which causes more pain. I'm hoping that the "eating for ibs" will help me feed her correctly so that her bowls dont shut down and cause more pain. She hates being on the meds, hates the fogged feeling, and hates the dependency, and she also wants to go back to work tomorrow.... but she can't function like this....... I have to go back to work on Thursday, so I have to leave on Wednesday..... I don't want to leave her cause I know that no one else will be here to take care of her.. I'm so torn and heart broken right now.....

sorry for the semi novel...... if you have any other advise or tips please let me know!

Thanks a bunch for everyones help!
Erin

7Lil
Veteran Member


Date Joined Apr 2005
Total Posts : 3269
   Posted 6/22/2008 5:30 PM (GMT -7)   
Erin, you truly are a wonderful daughter. I feel terrible for both you and your mom. There has to be something going on that the docs are missing... It just doesn't seem right that your mom is in constant pain, can't eat, and has lost a considerable number of pounds.
Has your mom looking into going to Mayo for help?
Co-Moderator IBS Forum
 
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Canyonbabe711
Veteran Member


Date Joined Mar 2006
Total Posts : 1451
   Posted 6/22/2008 6:51 PM (GMT -7)   
They are using anti-depressants for some stomach problem not because the person is depressed but because there is supposedly more Seratonin in the gut than in the brain. Now Elavil is an old antidepressant used for pain some now but I wonder if any of the Seratonin uptake drugs have been prescribed. Obviously she can't go on this way. Lord, this is frustrating to see someone hurting so bad and no answers. I don't have pain like you Mom or anything like she has but frankly it does sound like something more than IBS or IBS and something else. Has she tried like Fennel for the pain? Is it like cramping. I use the Ginger, Peppermint and Fennel caplets from Heather's and they work well but my case is very minimal.

Worried_Erin
New Member


Date Joined Jun 2008
Total Posts : 15
   Posted 6/22/2008 8:54 PM (GMT -7)   
Her pain is cramping, intense burning, and stabbing. The burning is in her entire lower abdmn, and the cramping is in her upper and lower abdmn, and the stabbing is in her lower left abdmn. She is also having chest pain and trouble breathing that started tonight ( it might be from the Amitiza but she hasn't taken that since yesterday), she also has acide reflux really bad, and the amitiza made it ten times worse. Her stomach is always sour and often seems "full with rocks"... And she has extreme cramping "under her ribs". Nothing seems to help, except a large amount of pain killers that put her in a zombie fog state.

She is very constipated, but has her galbladder out . . . that confuses me cause she shouldn't be constipated, she should be the opposite, or at least tha tis what all the info I have read about post removal of galblader indicates.

Should she have the antidepresents that up the seratonin? Her pain killer is hyrocodine... but I think it is depressing her. I'm not sure what antideprecent she is on,and I'm not sure if she is taking it... She has a tendency to cold turkey her drugs... that and she has so many that she gets confused on what to take and when. and if she should take this drug with that drug, and if she needs to wait before taking this other drug... She hasn't tried the dietary treatment. I bought some books from Heather Von Vorous sp? today but she isn't in any state to read them, and my dad didn't seem interested in them. I don't know if they will read them or not. But I'm going to make it my mission to read them both tonight cover to cover, so that when we take her to the hospital tomorrow I will know what questions to ask. I hope we take her to the docs tmorrow... I want her to change doctors because her current doctor has all but given up on her... He told her that he has tested her for everything he could think of and can't figure it out. But when another doctor suggested another test, he jsut refused saying that he didn't think it would be benefitial... To me ifyou don't know what is going on, and someone else suggests something you haven't done, you might as well do it . . . what do you have to loose? Cover all your basis! But this doctor has a rep for not being able to handle the non every day things. If it isn't in his normal bag of tricks, he is useless. My parents live in a small city, and there isn't much doctor choice.. and she doesn't want to come with me to dfw to get treatment...

sorry, i know i'm going on and on about this....
I just don't know what else to do.....
I feel so useless and helpless..
I can't imagine how horrible my mom feels inside - physically and mentally
I wish there was an easy fix to this
I wish she would let me take her to dfw for another doctor
I wish this crap didn't cost so darn much
I wish my dad would help more
and most of all, I wish I had the answers........

if this is more than ibs, who do i get the doctors to test for more?
how do i get them to realize the severity of the situation when all they want to do is pump her full of morphine and get her out of their hair?
I dont' understand why someone who is in so much pain can be sent away from the hospital... I dont' understand why they aren't trying to figure out the cause instead of just masking the pain.... why doesn't anyone want to put the effort in to help people with these kinds of problems... The pain is so bad that she can bearly function, and yet they consider her illness a functional syndrom... wth? I just don't get it.

Canyonbabe711
Veteran Member


Date Joined Mar 2006
Total Posts : 1451
   Posted 6/22/2008 9:55 PM (GMT -7)   
I don't understand it either but unless she is willing to go to another Doctor then I don't know what you can do. There is some Doctor out there that has an answer. Morphine is not the answer. Short story. My cousin years ago was in a similar state and for years was not able to function, severe pain, weight loss. He went everywhere and nothing could be found. He was on the verge of dying. By chance his mother a widow met a Dr. on a Hawaiian cruise and they married. he was a radiologist and he found an abnomality that every other Doctor had missed in the Ileum in the intestine and he had surgery and the bad part went away. He still has intestinal problems and is very thin but not the pain and he is 75 and this was when he was in his 20's so there is hope. You need to get copies of all the CT scans and all tests and send them somewhere to have them looked at. IBS is a functional problem but it can mimic other things. She should not be stopping and starting meds. This can be making things worse and certainly doesn't go over well with Doctors. This is beyond normal IBS. You also need to take care of yourself. I would certainly check out the antidepressants. If a Doctor refuses a test that another Doctor suggests change Doctors.
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