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Irritable Bowel Syndrome (IBS) Message Board
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Old 02-11-2013, 07:26 PM   #1
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Angry Kind of an IBS newbie, feeling very lost & hopeless...

Sorry this is so long, but I really need some direction, I feel so disheartened.

So here is a short history before I post my rant about my GI appt today:
Gallbladder removed at age 14, "diagnosed" with IBS 4 years later after a normal colonoscopy but was given no direction whatsoever. So I just dealt with it. Over the last 3 years it has just gotten progressively worse and worse to the point where it is controlling my daily life. Pain daily, excessive bowel movements (diarrhea 5x on a good day, 10-15 on a bad day), bloody stools, occasional constipation but when I do get it it's bad - won't have a BM for 5 or so days, EXTREME pain when I use the bathroom (whether it's diarrhea, normal or hard). I also have fevers and joint pain associated with my abdominal issues.

In the past month my GI ordered a CBC (came back normal except for borderline anemia), gluten & lactose intolerance tests (both came back normal) a stool test (which was all normal except for the presence of blood) and a small bowel xray (which came back normal except for a lot of stool). I also had an unremarkable colonoscopy at the end of December.


So here is my rant from my GI appt today:

Just another frustrating, disheartening GI appointment. I feel helpless and like this is never going to end or no doctor is ever going to actually help me. My GI pretty much said "it's IBS, here's some medicine, see ya"

I pretty much went through all those tests for nothing, again, just like I did a few years ago. Everything came back normal except the presence of blood in my stool (which he totally discounted) and my small bowel xray showed lots of stool. He pretty much completely discounted the amount of pain I'm in when I use the restroom because it's "not consistent with an IBS diagnosis" so he basically pretended like I never told him. He also discounted my fevers and joint pain because it's also "not consistent with the IBS diagnosis" so he can't explain why it's happening. So apparently it's just happening because my body wants to, which is a total crock of crap.

I tried Levsin (hyoscyamine) a few years ago and it made me nauseous so he pretty much said there's nothing he can do for me because that's one of the only IBS treatments. He put me on a children's dose of Bentyl (10 mg) and said "we can try this medication, but I doubt it will work since Levsin makes you sick". How uplifting...not. OH and he also made it a point to make a rude comment about my weight. He said, in a rude tone, "For your weight, this is a very low dose so that's another reason it probably won't work." It's a CHILDREN'S DOSE, that is considered low for ANY ADULT. I mean yes, I am overweight, but not extremely. And I have been in the process of losing weight, so that was a low blow to my self esteem. He kept questioning the Levsin making me nauseous saying that it was impossible because it's supposed to make cramps go away, my stomach is just very sensitive to medication in pill form. Then he also made it a point that if this medication doesn't work for me that there's nothing else that can be done for me because no other medication will work. Talk about panic attack when having to think about living like this forever, with no relief.

He said that this medication, "for normal IBS sufferers" (like I'm some sort of anomaly), is supposed to help stop cramping that causes the severe diarrhea. I understand that and yes, that can be a problem for me. But I know the difference between a CRAMP and actual PAIN. What I experience all day every day is PAIN, with cramping right before and after I use the bathroom. But of course, he didn't want to hear that either. He said it's just cramps.

He gave me no other information on diet, what I should & shouldn't eat, probiotics, how to manage my pain since Tylenol provides no relief on my "bad days" or even how to manage my diarrhea since Immodium doesn't do it for me. And he said he doesn't prescribe Lomotil because it's a derivative of a narcotic (not like it worked much better anyway). I even told him in the last month I've had to miss class and work a lot from the pain and not being able to get off the toilet and I might as well have not even said anything because it's not like he took it into account. I sat in his office crying almost the whole time I was in there because I just felt hopeless and he didn't say ANYTHING about me being upset or ask why I was crying. He just said, "having IBS isn't fun".

I just feel so lost and upset. This is literally taking over my life day by day and I feel like no doctor will help me because this is the 2nd time it has happened. I understand IBS is kind of mysterious or whatever, but my God at least give me some direction of what I can do to help myself, some form of pain and diarrhea management or SOMETHING. I cried the whole way home and have been crying off and on all night because of how lost I feel. I have had one bad panic attack in my life and I seriously feel like I'm going to have another one thinking about having to live with this pain all the time. I am honestly very scared and feel like I've been pushed back to square one.

 
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Old 02-12-2013, 06:24 AM   #2
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Re: Kind of an IBS newbie, feeling very lost & hopeless...

Hi,
I read your post and just had to reply. I do know how you are feeling. I wish I could talk to you in person, but I can tell you there is hope. I have struggled with IBS for 25 yrs. It can get better. So much of it is in how you deal, your frame of mind. Worry and stressing make it so much worse. I learned that the hard way. It's hard not to, I know. I was first going to suggest, getting another doctor, but it sounds like you have been to more than one. I know they don't help you. I was so upset and lost after leaving doctor's offices. We cannot rely on them for help. They just can't do anything. It is a mysterious syndrome. It has no rhyme or reason. It has phases of " I'll just act up a little, to, " I'm going to make you suffer horribly" I was like you, hopeless. I am here to tell you not to give up. I use something now called "Colon Pure" It helps me tremendously! It regulates you, but you must find the right dosage you need for your body. Try the recommended dosage then go up or down from there as you see the need. Also, I guess you know the general triggers for IBS. Sugar, fried foods, dairy,(even if you are not lactose intolerant) Here again, each person can have different triggers. Worry and stress is your worst enemy! I tell myself each day," I'm going to eat sensibly but also what I like to eat, and not worry about it." It takes time to be able to say that and mean it. You can do it though! The mind has such power over the body, positive or negative! If I can help you anymore, please let me know. I was all alone when I was going through hell with mine. I would have given anything for someone to talk to that had gone through it as well and could have offered me something hopeful. I'm here. God bless you.

 
Old 02-12-2013, 06:49 AM   #3
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Unhappy Re: Kind of an IBS newbie, feeling very lost & hopeless...

I know that stress and worry is only going to make things worse, but like you said, it's hard not to..especially after that experience yesterday. I could hardly even sleep last night because I was so frustrated/lost/upset. I have only been to two GI's who are in the same practice..it is actually father and son. I saw the son a few years ago and this time was the father. I think it may help if I go to a GI in a completely different practice. This GI is an older man and I feel as if he is not necessarily "up to date" on newer IBS treatments. I have done my own research and he's telling me that there's pretty much nothing else that can be done for me when I've found numerous possibilities. I feel like he gave up on me, which doesn't give me any hope.

My family and friends are supportive but I feel like they don't actually understand what I go through, because in all honesty they don't since they don't have IBS. I mean it's better than no support so I'm not totally trying to tackle this alone.

Thank you do much for your offer to help, it's what I really need. I need advice from someone who has struggled with IBS and knows what works/what may not work. I know it depends on the person, but at least suggestions are a start to getting myself on track to feeling better.

Last edited by j-gal; 02-12-2013 at 06:50 AM.

 
Old 02-24-2013, 06:42 PM   #4
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OMG, I read your post & just had to respond even though I don't have any advice. Are you feeling any better yet? If I were you, I would report that doctor to the Michigan Medical Examiner. Physicians take an oath to treat the ill. I've had my share of doctors who are seemingly without compassion.

Is your pain entirely due to stomach cramping? I have constant burning abdominal pain & was diagnosed with gastritis via stomach scope. I've been on protonix 40 mg over 3 weeks & have had no relief thus far. I've lost over 25 lbs since mid-Dec. I basically hyperventilate when I think of living the rest of my life feeling like my stomach is on fire.
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Old 02-25-2013, 05:40 AM   #5
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Re: Kind of an IBS newbie, feeling very lost & hopeless...

As of right now, I haven't felt much relief. The medicine definitely hasn't helped at all and only gives me a headache every time I take it. I have taken things into my own hands and began doing my own research and found that dairy can often be a trigger even if you aren't lactose intolerant so for the past week I cut dairy out of my diet as much as possible and that has helped. I still have most of my abdominal pain and diarrhea but I'm not so bloated all the time so that helps with being a lot more comfortable.

But my pain is mostly either just abdominal pain in general and some cramping. I'd say it's usually like 60% abdominal pain, 40% abdominal cramping. I have a follow-up appointment with my GI tomorrow and I hope it goes better than last time but I'm not getting too excited for that.

My mom was really angry after seeing how upset I was from my last appointment so she's going with me this time to kind of advocate for me because she sees how much pain & misery I'm in all the time so he can't try to pull any more BS on me. And she's a little bit better at being forceful than I am haha

 
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