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pain now affecting sleep, Please help, need advice!


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#1 Jen37

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Posted 15 May 2012 - 06:39 AM

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Hi Everyone.I am getting worried now. My pain levels are bad. I am bloated feeling, have a ton og grgling in my intestines, a feeling of having trapped gas inside, and pain and tenderness all throghout my intestines along with feeling like I have that urge to go. The pain woke me up in the middle of the night. The pain is like mainly in the mid abdomin where the belly button is and lower abdomin. The pain actally is making me feel sick at times. I cannot comprehend that IBS can cause this much pain and with no relief. I have tried peppemint tea, ginger, fennel, librax, eating a bland diet as it is and nothing is helping me. I am stuck ih a quandry. I have to be on a low dose antibiotic daily, have been for almost 4 years now to prevent severe UTI's I was getting. I also take a high amount of probiotics,Like 100 billion daily to prevent antibiotic side effects. This worked well with no issues for three years. Then I got a stomach bug a year ago and have been having issues ever since, but they have worsened over the last couple months. I at this point do not know what to do. Part of me feels like stopping everything I am taking or have been taking for the last few years which is the low dose keflex to prevent the bad UTI, zyrtec, and probiotics to see if this will get better. But then my reglar doctor says she is not comfortable with me stopping the low dose keflex due to my history and the nasty UTI's I get. The keflex has been a god send in terms of keeping the UTI's away. I do not want to go through that nightmare again either, and I do not even know for sure if the meds I take are causing this. I have not yet had a colonoscopy. My GI doc wanted to hold off due to how sensitive I am. He wanted me to try different meds first. I tried the librax and it does not help. He also gave me elavil which I have not yet tried, I am a bit nervous about all the side effects it has and I am very sensitive. Maybe I should have a colonoscopy to see if this is something else worse than IBS?? I am unsure what to do, quit all my meds and see if I get better in the tummy( risking my UTI issue to come back), or do a colonoscopy to see exactly what is happening. I just hate to go through the colonoscpy for nothing. I have a HUGE dedctible $2500 out of pocket I will have to pay for this test... I am scared and no clue what is wrong with me! At this point I have NO life due to the pain I am in. I sit with a heating pad all day and still am miserable. I know a couple people personally who have IBS and they are not like this, in pain all the time and incapacitated by it. Can IBS be this bad????? Please advise! What do you think?


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#2 Kathleen M.

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Posted 15 May 2012 - 07:49 AM

IBS can cause severe pain.The pain of IBS is in the nervous system and nerve pain can be some of the most severe pain people have. Will the colonoscopy make your less nervous, or will you still be concerned even if the test is clear? Sometimes the stress of the test can make IBS worse, so you have to balance that out.I wouldn't think the drugs caused this, usually IBS starts from a stomach bug so that probably is the source, not the meds you have been on.Elavil is prescribed at a low dose and most of the side effects listed are from higher doses used for depression and it can be effective for nerve pain as it effects nerves.
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#3 Jen37

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Posted 15 May 2012 - 09:09 AM

Thanks for the response Kathleen. I guess I will have to try the elavil and see. I am so super sensitive though. I also have IC ( interstitial cysttis) and hear that elavil can cause urine retention. That is scary. Yes, the colonoscopy test does make me nervous. But I do know sometimes the tests have to be done. I had blood work that all came back normal. What do they look for in the blood that can tell them anything about the digestive tract? I know with IBS alot of people are either running to the toilet with Diareha or they are comnstipated. I am kind of stuck in the middle. I usually have one BM a day, it can sometimes be soft like mush, but usually it is formed. I sometimes will get constipated, but not often. I have the feeling that I have to go all the time and I am betting if I were up and moving around alot, I would have to go. But due to all the pain, I am stuck sitting with the heating pad alot of the day. I hate it, I have no life and am in pain all the time.Are there any drugs that help with the pain and intestinal cramps that do not cause major constipation? I have only tried the librax and a lot of natural remedies that have not helped me. Next is the elavil. What other meds are out there that can help with the pain and cramping feelings?Thanks for listening and for the advice and info. This is just so frustrating.

IBS can cause severe pain.The pain of IBS is in the nervous system and nerve pain can be some of the most severe pain people have. Will the colonoscopy make your less nervous, or will you still be concerned even if the test is clear? Sometimes the stress of the test can make IBS worse, so you have to balance that out.I wouldn't think the drugs caused this, usually IBS starts from a stomach bug so that probably is the source, not the meds you have been on.Elavil is prescribed at a low dose and most of the side effects listed are from higher doses used for depression and it can be effective for nerve pain as it effects nerves.



#4 BQ

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Posted 15 May 2012 - 09:23 AM

Are you taking the Librax before 20-30 minutes meals? That is the way it is prescribed to me. Also try heat patches (meant for bad backs.. just put them on your abdomen). Also have you given any thought to trying the hypnotherapy? That is the best thing I did for my severe ab pain. Please consider it. (See the CBT/Hypnotherapy Forum for more info about hypnotherapy). I did the IBS 100 Audioprogram... right int he comfort of my own home for the price of about what one in-person session would cost and I did it 10 years ago now! Nothing and I mean nothing worked on my pain like that does.. not even narcotics!
Please remember this is a group of folks seeking support on how to live with and manage IBS. THESE ARE ONLY MY OWN THOUGHTS. IF YOU WANT AN EXPERT OPINION, ASK A MEDICAL PROFESSIONAL.

#5 Jen37

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Posted 15 May 2012 - 09:30 AM

Hi BQ,Thanks for the reply. I did do the imagery with a therapist. It did help me relax, but did nothing for my pain per say. What is the 100 IBS audioprogram? Where do you get it? Is it online? I am interested in that. I was taking the librax 20 min before eating also. It did nothing in terms of helping the intestinal cramps and pain for me. Now he wants me to try elavil. I am just nervous about the side effects since I am sensitive to meds. I am interestd in that 100 IBS audioprogram though. Is it like visual imagery? That I did not have to much success with. I am willing to try anything at this point.. Thanks again for replying.

Are you taking the Librax before 20-30 minutes meals? That is the way it is prescribed to me. Also try heat patches (meant for bad backs.. just put them on your abdomen). Also have you given any thought to trying the hypnotherapy? That is the best thing I did for my severe ab pain. Please consider it. (See the CBT/Hypnotherapy Forum for more info about hypnotherapy). I did the IBS 100 Audioprogram... right int he comfort of my own home for the price of about what one in-person session would cost and I did it 10 years ago now! Nothing and I mean nothing worked on my pain like that does.. not even narcotics!



#6 Cheryl1967

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Posted 15 May 2012 - 10:12 AM

Here's the website for the IBS Audio program 100 Jen. It's not visual imagery it's audio I too have begun the program it is wonderfully relaxing :)

#7 Cheryl1967

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Posted 15 May 2012 - 10:14 AM

Would have been ice if I had actually PUT the website there before I hit 'reply" o.Ohttp://www.ibsaudioprogram.com/contact_us.htm

#8 Kathleen M.

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Posted 15 May 2012 - 10:19 AM

Yes, the colonoscopy test does make me nervous. But I do know sometimes the tests have to be done. I had blood work that all came back normal. What do they look for in the blood that can tell them anything about the digestive tract?

The main "not IBS" thing that happens to people is an autoimmune disease. Inflammation shows up in the blood tests, so if those are normal, it tends to be seriously unlikely they will find inflammatory bowel disease in a colonoscopy. In anyone under 50 that is the main thing they are looking for in there when they do a colonoscopy.While some IBSers have a lot of stool issues, others have much more issues with pain. There are also functional bowel problems that are either all the pain of IBS with few stool issues, or all the stool issues with no pain, so there is a continuum. Doesn't really matter in the clinic if they call them IBS or something else as they are all treated the same.Most of the other drugs are either other antispasmodics with all the same side effects as the librax or other antidepressants that tend to have the same side effects as elavil unless you go with an SSRI which tends to make diarrhea worse. Sometimes desipramine has fewer side effects than elavil (similar kind of drug). It has the same ones, but they tend to be less frequent.Narcotics are not recommend for IBS pain as they can make the gut nerves a lot more sensitive to pain in some people.
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#9 Jen37

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Posted 15 May 2012 - 01:59 PM

Thanks Cheryl and Kathleen for the resopnses. Thanks for the link to the IBS 100 Audioprogram. I am going to order it and see if it helps.Kathleen: When my gsatro doc took my blood he was looking at my sed rate. At that time it was normal, but I have an elevated sed rate off an on, I have for years. Even when my gut was not bothering me. I also have had elevated C-reactive protein levels as well. None of my doctors ever paid it much attetion. My one doctor said that alot of things can raise the sed rate and c-ractive protein levels. I am guessing that with the inflammatory bowel diseases would the levels be VERY high? Well when the gasrto took this last blood test, my sed rate level was normal and I was having issues at that time so I am guessing it would have showed if there was something going on. I also just had my regular doctor do my routine blood work last week and she also checked for my Vit B 12 levels and all was normal. I could not even take a pain med if I wanted to, I am way too sensitive to them. I have IC as well and had to take a med called norco a few years back. Oh my Gosh, it was awful. I was told to take 2 pills, but me being sensitive I only took one. Well within minutes I was dizzy and then the nausea set it. I was sick for three days after only taking one lousy pill. Never again will I touch that drug!! Thank God I only took one pill and not the two! Does tylenol help with IBS pain? I have that here, have not taken it yet as I just hate to take them unless I absolutely have too. I am getting to a point where I need some relief though. Thanks again for the info, I appreciate it.

#10 Kathleen M.

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Posted 15 May 2012 - 02:37 PM

Every little infection can cause a slight rise in sed rate and CRP. For women it can vary with menstrual cycle as well. Usually with inflammatory bowel problems or other autoimmune issues you do see a pretty high level. Also the "normal range" is not every single healthy person, and all else are sick, but usually set at average +/- 2 standard deviations which will get about 90-95% of perfectly healthy people at any given time. So for a lot of tests there is a "not normal" but "clinically irrelevant" range. So a space between where most healthy people are, and a range where most people with a disease are. Not all tests are that way, but generally there is a range of "not normal" but also "not diseased".Tylenol is usually pretty easy on the gut so you could try that, it isn't what is usually used, but it may help take some of the edge off so could be worth a shot.
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#11 Jen37

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Posted 15 May 2012 - 05:43 PM

Thanks for the info Kathleen, I appreciate it. I will try the tylenol, it is worth a try anyhow.

Every little infection can cause a slight rise in sed rate and CRP. For women it can vary with menstrual cycle as well. Usually with inflammatory bowel problems or other autoimmune issues you do see a pretty high level. Also the "normal range" is not every single healthy person, and all else are sick, but usually set at average +/- 2 standard deviations which will get about 90-95% of perfectly healthy people at any given time. So for a lot of tests there is a "not normal" but "clinically irrelevant" range. So a space between where most healthy people are, and a range where most people with a disease are. Not all tests are that way, but generally there is a range of "not normal" but also "not diseased".Tylenol is usually pretty easy on the gut so you could try that, it isn't what is usually used, but it may help take some of the edge off so could be worth a shot.



#12 cookies4marilyn

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Posted 16 May 2012 - 11:30 PM

Hi Jen - You program was shipped out today - if you have any quesions, let me know. The IBS Audio Program has a session that specifically addresses pain issues - but it does use gut-specific guided visual imagery and clinical hypnotherapy via audio CDs. By visual imagery, I mean using the mind to visualize - but the subconscious mind - not your thinking mind. I think Cheryl meant that they are not DVD/Videos, just sound audio recordings.You can call 877-898-2539 or email using the info on the slip of paper included. I am in the Chgo area too! Even if you have not had past success, there still is a very good prognosis that this can still be helpful to you - especially if you stick with it and do not get discouraged - some folks see relief right away, others need to do a round or two. But you can also do the session specific for pain if needed as well - it works wonderfully!Hope this gives you some encouragement! :) Happy to help if you need any... take care.
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#13 Jen37

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Posted 17 May 2012 - 10:41 AM

Thanks for that info. I look foward to using this program. I really hope it works to give me some relief. Thanks again!!

Hi Jen - You program was shipped out today - if you have any quesions, let me know. The IBS Audio Program has a session that specifically addresses pain issues - but it does use gut-specific guided visual imagery and clinical hypnotherapy via audio CDs. By visual imagery, I mean using the mind to visualize - but the subconscious mind - not your thinking mind. I think Cheryl meant that they are not DVD/Videos, just sound audio recordings.You can call 877-898-2539 or email using the info on the slip of paper included. I am in the Chgo area too! Even if you have not had past success, there still is a very good prognosis that this can still be helpful to you - especially if you stick with it and do not get discouraged - some folks see relief right away, others need to do a round or two. But you can also do the session specific for pain if needed as well - it works wonderfully!Hope this gives you some encouragement! :) Happy to help if you need any... take care.



#14 WeTheStrange

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Posted 28 May 2012 - 11:58 AM

The main "not IBS" thing that happens to people is an autoimmune disease. Inflammation shows up in the blood tests, so if those are normal, it tends to be seriously unlikely they will find inflammatory bowel disease in a colonoscopy. In anyone under 50 that is the main thing they are looking for in there when they do a colonoscopy.While some IBSers have a lot of stool issues, others have much more issues with pain. There are also functional bowel problems that are either all the pain of IBS with few stool issues, or all the stool issues with no pain, so there is a continuum. Doesn't really matter in the clinic if they call them IBS or something else as they are all treated the same.Most of the other drugs are either other antispasmodics with all the same side effects as the librax or other antidepressants that tend to have the same side effects as elavil unless you go with an SSRI which tends to make diarrhea worse. Sometimes desipramine has fewer side effects than elavil (similar kind of drug). It has the same ones, but they tend to be less frequent.Narcotics are not recommend for IBS pain as they can make the gut nerves a lot more sensitive to pain in some people.

I suffer horribly every day with extremely severe ibs pain which at times almost drives me crazy. I've tried everything under the sun, including hypnotherapy and if anything the pain is just getting worse. I know hypnotherapy works wonders for some people, but I'm in so much pain I can never relax enough to experience any benefit from listening to the cds. Also I'm worried sick incase I suffer some painful illness like cancer!!! You say narcotics can make ibs pain worse. Well how on earth would they treat my pain if drugs like morphine can aggravate my ibs? I know I must sound totally neurotic, but sometimes i just feel like ending it all as this diabolical condition is making my life an absolute living hell.

#15 Kathleen M.

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Posted 28 May 2012 - 12:22 PM

Generally the pain treatment for narcotic bowel syndrome is about the same as severe IBS pain.Mix of antispasmodics and anti-depressants that tamp down the pain signals. Sometimes once you get some control with that then the mind-body work can have effect. Some people really need a mix of both.Have you run through all the usual antidepressants for pain? They are used for other painful conditions besides just IBS.If the only thing that will ever do anything at all for the pain is the narcotics they usually use for cancer treatment--like morphine--you may have to do that, but with the knowledge that you may at some point make the gut pain worse (may not) and once that happens you will probably have much worse pain every time the narcotic wears off making it much harder to stop the narcotics if you have to. (and they'd just put you back on the anti-depressants to control the narcotic bowel pain).I'd make sure you've tried desipramine, Cymbalta--also used for diabetic pain, Remeron (similar chemically to Lotronex) Zoloft (especially if run constipated all the time), maybe even Lyrica which is used for Fibromyalgia pain and then if you have to go to a Narcotic something like Ultram that tends to be a little less addictive would probably be my choice than going straight for Morphine or the the even heavier duty cancer pain meds.FWIW, I was in so much pain I couldn't walk to the mail box without dropping to the ground, never was given any narcotics, but a combination of Buspar (which is like an antidepressant but sometimes does work for gut pain) and antispasmodics made me functional enough and in a low enough level of pain that the mind-body stuff did work for me. Now pretty much pain free all the time, and if it does act up a couple of peppermint altoids will take care of it. If you can find something non-narcotic to take some of the edge off the pain (so a 3-6 rather than a 8-10 on the pain scale) it may be worth giving the hypnotherapy another go.
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#16 WeTheStrange

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Posted 28 May 2012 - 12:45 PM

Generally the pain treatment for narcotic bowel syndrome is about the same as severe IBS pain.Mix of antispasmodics and anti-depressants that tamp down the pain signals. Sometimes once you get some control with that then the mind-body work can have effect. Some people really need a mix of both.Have you run through all the usual antidepressants for pain? They are used for other painful conditions besides just IBS.If the only thing that will ever do anything at all for the pain is the narcotics they usually use for cancer treatment--like morphine--you may have to do that, but with the knowledge that you may at some point make the gut pain worse (may not) and once that happens you will probably have much worse pain every time the narcotic wears off making it much harder to stop the narcotics if you have to. (and they'd just put you back on the anti-depressants to control the narcotic bowel pain).I'd make sure you've tried desipramine, Cymbalta--also used for diabetic pain, Remeron (similar chemically to Lotronex) Zoloft (especially if run constipated all the time), maybe even Lyrica which is used for Fibromyalgia pain and then if you have to go to a Narcotic something like Ultram that tends to be a little less addictive would probably be my choice than going straight for Morphine or the the even heavier duty cancer pain meds.

Thanks for your advice. I'll hopefully give these drugs a try. I've not heard of Cymbalta[I live in the UK]. I have tried Lyrica and it occasionally helps the pain , but it can be constipating which of course makes the pain worse. I think you perhaps misunderstood what I was saying regarding narcotic drugs like morphine. I don't really want to be prescribed these drugs as I know they can be addictive and in the long term make my pain worse. This being the case, if [God forbid!!]I was to suffer some painful illness like cancer, how could my cancer pain be treated WITHOUT the use of narcotics? Or are drugs like morphine only given in the later stages of the illness? I know it's extremely morbid of me to be dwelling on this sort of thing, but I do worry myself sick [I have various anxiety disorders] and it's most likely aggravating my IBS pain. Can you tell me if Lyrica can be used in conjunction with antidepressants?

#17 Kathleen M.

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Posted 28 May 2012 - 01:56 PM

Lyrica info I see online says it can interact with tricyclics in a not good way, but they don't mention the other kinds. Since SSRI's, like zoloft, tend to loosen things up that may be something that would balance it out that Lyrica tends to constipate you.Your doctor or pharmacist may have to work out which combinations would be OK for you.Generally when they start treating cancer pain with heavy narcotics it is pretty advanced and the risk of addiction is considered worth it as you may not live long enough to really worry about it, and I'm sure they would try other pain treatments first if you wanted, but at some point your comfort may demand the use of those kinds of medications. Should you recover at that point they can worry about how to wean you off the narcotics in a safe way. The heavy narcotics can be really good treatment for cancer pain--generally less addictive when you really need that much pain medication. When the prescribe them for people who are in milder forms of pain that can be where you see more issues. When you are in enough pain the meds usually don't make you high, just make you functional. They may make you sleepier than usual, but not euphoric.Anxiety never helps, so if you need additional treatment for that it may be worth seeking that out (either medication or therapies that help reduce the anxiety).
My story of beating IBS: My Story with IBS
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#18 WeTheStrange

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Posted 28 May 2012 - 03:40 PM

Lyrica info I see online says it can interact with tricyclics in a not good way, but they don't mention the other kinds. Since SSRI's, like zoloft, tend to loosen things up that may be something that would balance it out that Lyrica tends to constipate you.Your doctor or pharmacist may have to work out which combinations would be OK for you.Generally when they start treating cancer pain with heavy narcotics it is pretty advanced and the risk of addiction is considered worth it as you may not live long enough to really worry about it, and I'm sure they would try other pain treatments first if you wanted, but at some point your comfort may demand the use of those kinds of medications. Should you recover at that point they can worry about how to wean you off the narcotics in a safe way. The heavy narcotics can be really good treatment for cancer pain--generally less addictive when you really need that much pain medication. When the prescribe them for people who are in milder forms of pain that can be where you see more issues. When you are in enough pain the meds usually don't make you high, just make you functional. They may make you sleepier than usual, but not euphoric.Anxiety never helps, so if you need additional treatment for that it may be worth seeking that out (either medication or therapies that help reduce the anxiety).

Thanks a lot for your advice. You've put my mind a bit more at ease.

#19 pelskate

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Posted 08 June 2012 - 09:05 PM

[quote name='WeTheStrange' timestamp='1338237642' post='866835']I have pain from gas interrupting my sleep. I have great difficulty maintaining a weight over 20 pounds less than normal for me as an adult. If I am not extremely careful in what I eat and the enzymes I take to digest it, I get a "colon-cleansing" usually starting about 3 AM and lasting 2-3 hours. When I look at the page on IBS diagnosis, pain or diarrhea interrupting sleep and weight loss are red flag symptoms which are NOT typical for IBS. God diagnosed me with Celiac disease 18 months ago, but my GI doc had me do all sorts of nasty tests which themselves caused severe pain and diarrhea, and weight loss. After finding "nothing wrong" she gave me the IBS diagnosis.

#20 BQ

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Posted 10 June 2012 - 08:44 PM

Did you inform the Dr of the night-time symptoms?
Please remember this is a group of folks seeking support on how to live with and manage IBS. THESE ARE ONLY MY OWN THOUGHTS. IF YOU WANT AN EXPERT OPINION, ASK A MEDICAL PROFESSIONAL.





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