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Irritable Bowel Syndrome
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Posted 2/20/2014 11:40 PM (GMT 0)
Hi . I'm new to this site and have been reading everyone's posts and have found a lot of information but have not seen anything about pain control and IBS. I have had IBS-C for a little over 25 years, It seems like I have had my whole entire life. I would say the last 5 years of my life have been consumed with daily pain that is debilitating and gets alot worse during flare ups which are at least once a week. I have modified my diet and eliminated just about everything that I can without giving up food altogether. I am lactose intolerant , I do not eat bread,pasta I try to limit sugars ,carbonated drinks and alcohol. I am by no means a saint and my life and ability to work and care for my family have been severly hampered by pain and fear of attacks. The pain is cramping ,bloating to the point where I look like I am 6-9 months pregnant. It puts pressure on my diaphragm and limits my ability to breathe. I have Bentyl which gives me a bit of relief from spasms sometimes and Zofran for the nausea that accompanies this. I also have dumping syndrome ( I have never had any stomach surgery and no one knows why) so I get the hot flashes-sweats ,palpitations and then cold sweats. I have tried heating pads,hot baths,peppermint oil, bedrest, I take Miralax 1-2 cap fulls 2x a day. The only thing that brings me relief is percoset or dilaudid. Tramdol workied for a bit but no longer helps. My problem is that my GI used to prescribe pain meds for me but is no longer willing to do so. He just seems uncomfortable with the whole thing. My PCP passed away a year and half ago and the group that I am stuck going to right now where I work I seem to get a new doctor everytime that I go ,which only forces me to explain my whole history over and over again and get me nowhere and leaves me untreated. My diagnosis was not an easy one it took about 4 years to get a firm "it is IBS" I had to go to the Mayo clinic in Minneapolis and see Dr Michael Camilleri. I honestly do not know what to do anymore and am at the end of my rope.
Do I try to find myself a pain mangement doctor? My insurance does not require referrals so am I able to slef refer? I had surgery for a torn rotator cuff at the end of November so I have had percoset for pain relief but I am at the end of my treatment-still going through physical therapy and a fair amount of pain but I do not believe that my surgeon will continue to prescribe me pain medication. I hate having to go to the ER because it is endless hours of waiting and it is horribly embarrassing to talk about your bowels with every Tom,Dick and Harry that you meet. Does anyone have any suggestions for me? I am 46 years old and have gone through menopause already (37) and it just seems that at this point in my life I should be able to manage my pain alot better. It is affecting my relationship with my husband to the point where he thinks that I am a drug seeker. I just sit and cry so much because I am so terribly miserable. Please help.
Posted 2/21/2014 1:52 PM (GMT 0)
I too have suffered from IBS for many years on and off. I am 66 years old and can honestly say this started way back in my early 20's. I have had periods when it would subside for a couple of years and I could eat anything I wanted with no issues. But with each flareup my symptoms become more severe...the pain, bloating, gas, rumbling in stomach get worse. This time, however, I have no insurance and am living on Soc. Sec. only. My Medicare B will kick in in a couple of weeks but right now I'm trying to hold off seeing a doc since I have no money....this only makes my symptoms worse I think. I sometimes think i have gallbladder issues to but the symptoms are so varied that it's hard to know WHAT'S going on. I have tried every home remedy there is with little or no help. This time around I was having diarrhea immediately after eating anything...that went on for a few weeks and then just yesterday it seemed somewhat better, with only one trip to the bathroom during the day. I slept through the night, had a semi-normal BM so I was really feeling heartened that maybe this was all turning around...and then the pain started with a vengeance....pain mostly on the right this time, when it had previously been on the left. My stomach is gurgling, bloated, VERY uncomfortable with only slight relief when passing gas. It's horrible to go through this and I can certainly understand the state you are in. No one understands what we go through with this affliction and oftentimes think its all in your head. I would suggest that you try to find a doctor who really CARES about your issues...and I know they are hard to find these days. There is a new website called Doctorgrade.com, where you can actually get ratings on docs in your area. Maybe you can find one who can actually help you. I wish you all the luck.
Posted 2/21/2014 4:42 PM (GMT 0)
I am so terribly sorry that you are suffering and even more sorry to know that you have been suffering your whole life, as you know I can totally relate. I will give doctorgrades a try and see if I can find someone. I will say prayers for both of us that we get the relief that we so desperately need. Thank you for your kind response. Being new to this site and posting it helps to know that there are folks that care.
Posted 2/22/2014 1:38 AM (GMT 0)
Hey Kap,

I have severe IBS-D so I'm on the other end of things here, but the severe and sometimes endless pain is something I struggle with as well. And even with IBS-D, after a bad attack I can have a total shutdown for a week with absolutely no peristalsis. A few landed me in the hospital before I learned how to manage it.

Although it seems I suffer from IBS, and not UC or Chron's, my doctor did prescribe Balsalazide Disodium for me. Its 9 pills/day (3 at a time), but it is an anti-inflammatory that works on your digestive system. I found that even when in my "all stop" mode, it helped start things up quickly and painlessly. It took care of inflammation in the gut. It has been the absolute BEST thing to help with the constipation side of IBS. He's not sure why it helps, but it has been a miracle. Ask your doc?

Second - please do yourself a favor and find another doc. I went through 6 before I found my current doctor, and he was pure luck - I was in the hospital and he was the gastroenterologist assigned. I have now been going to him for 6 years. While I am not cured, I am leagues better than I was before. It can be a painfully (pun intended) slow process to find the help you need and someone with the time/focus, but they are out there. I find the best gastros have IBS or IBD themselves. They understand. Also - the longer you wait the longer your recovery will take. It is hard to be proactive when all of the tests seem to be uncomfortable, invasive, end up making you feel worse for a while afterwards, etc... but it is the only way through to the other side. Find someone you trust and stick with them. When you lose trust, move on quickly. It sounds like you don't need yet another job, but it needs to be thought of in that way - another job that needs the time and energy put into it in order to see results.

A very strong word of caution from someone who has pain so bad she's fainted: PLEASE stay away from the pain meds. Sometimes when a doc says no there is a good reason. Not all the time - some docs are just asshats. Pain meds cause severe constipation, and even with my super fast forward digestive system, they can stop me up in a heartbeat. The same with the Bentyl and other antispasmodics and the anti-nausea medications. A combination of those for a week landed me in the hospital with constipation so bad I was bleeding when it finally moved - after an enema. I know these medications are easy to turn to, but they can cause problems for so much longer than they help. They all slow or stop the movement. Obviously that's what helps pain, but it is only very temporary. Afterwards the pain is worse than before. I know you just want it gone. Me too, more than anything. If they could cut off a leg and cure my IBS, I would be in there tomorrow. Pain meds are not the way.

All of my prayers for you. I understand the desperation, the pain and the loneliness. I understand being fed up 6 times over and still getting nowhere. You are not alone. Keep. Going.
Posted 2/22/2014 1:56 AM (GMT 0)
You are so right. I really do need to find a doctor that I have confidence in so that I can be open to new treatments. Having no confidence in my doctor is most likely the root of all of my problems. This is probably the best suggestions yet. I do not mind the testing at all . I know that it can be uncomfortable but if it going to beneficial to me I don't mind at all.
I will be careful with pain meds. I just get in such a bad way that I would honestly sell my soul to the devil to make the pain go away. I do realize the down sides and do keep ahead of the constipation with miralax and do sometimes get in trouble but fortunately those times are few and far between.
thank you so very much for your time , suggestions and prayers. They all mean such a great deal to me. I hope that your suffering eases soon or that some new magic is soon available for all of us. Wouldn't that be great?
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