Hi everyone I am new, in pain, and hoping for some answers
Posted 14 May 2015 - 02:32 PM
Greetings all.... sorry but I am going to be graphic.
My name is Ray and I am a 45 year old male. I started with something I thought strange.. a slight amount of clear mucus at times when wiping. That was in 2007. I have suffered from indigestion and heartburn a little longer than that. I use prilosec for the heartburn and it has kept under control all these years.
Maybe a year after I first noticed the mucus I had my first "flare". Horrible trapped gas pains, very noisey moving slowly all around and through my intestines. I felt constipated, but like something was stuck maybe midway down the decending colon on my left side. This went on for days, laxatives gave me the runs, and no relief. Slowly over a week or so this went away. As time progressed this would return at times, and I'd feel a pinch in the left lower abdomen.. maybe an inch inwards from the left hipbone wrapping around the left side. I also started noticing a weird smell to my stool.. I describe it as more smelly than before mixed with pencil lead.
I would go months with no problems, just occasional pinching in the low left area, but at the time was drinking too much for my own good, so figured it was some of that. About 1-2 times per year I'd have issues, it would last a few weeks. My stool would go thin, runs, eel shaped, normal, pencil, mucus, etc.. all over the place during an "event". I did not have the same gas thing as before, I would hurt in that area.. stabbing, pinching, like twisting a knife, then it would go away for hours. As this went on I started to notice when it really hurt sometimes I would start salivating. I mean to the point where I would have to spit into something or it would run out of my mouth. This would come and go as above... 2-3 times year, lasting 2-4 weeks when it hit. I never really felt "good" anymore, but most days I was still ok to function. I was still drinking a good bit. Every other night.
More recently (last year or so) these events have gotten worse. The salivating turned into vomiting sometimes when it was really bad at times. I have had blood after wiping maybe 3-4 times in all these years, very bright and one the first wipe, very little mixed with the stool, but that is it. The events got worse when they occurred, same area... left lower ab.. but now would sometimes shoot to bellybutton, or wrap around my back in that area. It became much worse.. it would hit in waves.. like I would imagine labor conractions would feel. Peaks.. then less, then peak, etc every few mins or even seconds. Sometimes I would start salivating, throw up and feel better. Still would come and go... this went on.
Recently I have taken a desk job as opposed to walking and standing. It is a great job, a dream job of sorts. Since then (last October) I have had a LOT more problems. since then I am in my 3rd flare up. It is now May 14... this flare started March 8th. It has evolved from the above to horrible cramps/spasms in the same spot. When they start they last for about 1-2 1/2 hours. Same peaks and valleys, but hurts much worse than ever before. I really thought maybe I had Crohns.. I remember being fine... walking into a store, coming out and bam... pain so bad I could barely move. I waited a bit as no way I could drive, and ended up throwing up into a cup while driving (that was a first). Since that day (mid March)... I am getting this nearly daily. For some reason right about 1-2 pm in afternoon, right after returning from lunch to my desk it would start with the fluttering, then the pinching, then the spasming. I would have to get up and walk outside, maybe throw up a few times, in an hr or 2 it would subside enough for me to sit at my desk and function. I stopping eating at lunch. Still happens. I don't know if it's in my head.. the worry itself of having an issue today, or something to do with my colon moving contents at that time. Rarely do I have a day without this, sometimes not quite as bad, some days it would come back in the evening too. At this point when I would vomit in the midst of the pain/spasms I would get instant relief but instead of as it was before.. the pain would return within minutes. it used to go away and stay away after the vomiting.
Since March I have lost 35 lbs, 15 just in the last 3-4 weeks. Stools are something like this... avg day.. wake up at 5am have to go.. maybe pencil, maybe just about normal. Lay back down, makes me get back up 10 mins.... then loose, watery stool. Lay down, get back up 10-30 mins... urgent.. straight runs. Maybe mid day feel like I may need to go.. mucus. Some times I will have the urge to go badly, and barely make it to the bathroom, explosive runs. I assume if this is IBS it is IBS-D. Constipation is really not an issue. I mean there are also many times where I have the urge, but cannot go. If feels more like the colon (in that same spot) is swollen shut inside. This really only happens during a flare up, or currently... off and on for the last 3 months. I have not had any alcohol of any kind since the end of Feb.
About a month ago I got my new insurance and went to a GI specialist. After reviewing my symptoms he said it really sounds like IBS, and gave me Bentyl 20mg 2x per day. It helped some, but don't like the way I feel on it. The above episodes cut back.. from daily to maybe just light spasming for a few days, then I had a full blown miserable as stated above day.. with the vomiting, all of it. The doc said go to 3 times a day on the bentyl. He did set me up for a colonscopy until my insurance company told me it is full deductible and I have to pay the $2500.00 for the test. I had to put it off a couple months.
Now I am at wits end. The horrible 2 hr events are happening 2-3 days a week at work still, right at the same time.. 1pm- 3pm. Sometimes early morning. It is effecting my work. I am hardly eating because eating more makes it worse. I swear this is some in my head... if I am stressed or make a mistake at work.. as I learn of it the spasms begin. If I am having issues.. anyone talking, moving.. even a bad thought turns into a tight bad spasm. I have read about the brain to gut connections and its issues. The bentyl helps some yes, but makes the pain harder to deal with... makes me anxious and panicky when this starts.
I went back to my GI yesterday. He of course was a bit frustrated I had not had the colonoscopy yet, told me I was manic because I am now freaking out over this, worried for my job, and it just will not stop.. go in remission. Asked me if I was a drug addict withdrawling from something???!! When his bentyl has made me more anxious and panicked feeling. He now says the vomiting just doesn't sound like something I should be having.. doesn't make sense to him. That inspired confidence. He put me on Levbid 2 times per day, and told me to use the bentyl too if I have an issue. Told me I need something like Zoloft to calm me down, but he does not prescribe those type drugs. I had thought that was sometimes used by GI's for this. He looked at me like I had a hole in my head when I said something about the gut to mind link, and breaking it.
That was yesterday. I started the Levbid last night. Besides the side effects (same as the bentyl so far but a touch more intense in ways) I felt great this morning. A little pinchy this am but it seemed to hit a brick wall and just stopped. Very wholesome feeling in the belly all morning. At lunch I did not eat as normal. Walking back in the door a little pinchy. Then just as normal and on cue it started to flutter, then light cramping. I popped my first bentyl of the day. It was really trying to spasm for maybe 45 mins. It got maybe to 30-40% of what it normally would then has subsided since. So the same "window" of time, but not as bad since I am now on BOTH drugs. God I hope this will stop.
I called my doctor about the Zoloft and he tells me to go see a shrink, and gives me a phone number. I don't know if I should follow this up or not. At this point I am so confused.
Sorry for the long post, but I wanted to try to detail as much as I could reasonably.
Any opinions, insights, advice, whatever is appreciated.
One thing I forgot to mention... I was diagnosed with E. Pylori infection on the "referral" visit with my primary doc when he gave me the referral to the GI doc 5-6 weeks ago. I was given Clarithromycin and Amoxicillian for 14 days for it. Yesterday the GI did do a Celiac panel which I will get results on in a week.
Posted 15 May 2015 - 05:33 AM
Thanks for sharing your story. Interesting that a sitting job worsened your condition. This makes sense to me and it is also my experience.
You will need to learn a lot and educate yourself to navigate this situation. Keep participating in the forums and reading about other people's problems and remedies.
- Leo41 likes this
Posted 15 May 2015 - 02:11 PM
Well.. we'll see how this goes. Today is my second day on the Levbid, and honestly I do feel much better than I did on the Bentyl. Tiny little pinches again this morning that stopped without any real issue. A hard to describe "better"/almost normal feeling in the bad lower left colon area that I have my problems in. Almost normal stool as well.
Lunchtime came and I tried a small (3oz) piece of baked chicken, nothing else. Now this is better than my normal... nothing. Couple slight hints of some pinching, then would stop.. repeat. This was during the normal 1-3pm window that seems worst for me. Today I did not have to take a dose of Bentyl too as I did yesterday.
Hopefully the day will keep rolling along. My GI did say something like the Levbid takes a few days to build up in your blood, and this is only day two. How come I hate to even feel hopeful... but I do feel better on this stuff so far.
As a side note... I called the pyschologist my primary referred me to, and set an appoint. 4 weeks out... sure glad I don't need him critically. Figure I will run all this past him and see what he says. Does anyone know what type drugs are used to treat the mind-gut pathway thing we have with IBS? Or can you point me to any good studies or info on that.
Posted 16 May 2015 - 09:42 AM
I've seen others mentioning amitryptipiline for pain and D.