Stomache Spasm/Pain

[Jerman]

Hello all,

I have had a high level of pain with my Ahem...Functional Disorder. The docs in Boston have ruled out with a 95% guarantee that I do not have Crohns or Colitis. Of course in the meantime the need to call it "SOMETHING" so I now am afflicted with a functional disorder. Normally this would be a time to celebrate but for now I am saving the celebratory trumpet in case I need to later firmly plant it in my docs butt!

I have had issues since march and for the past month have been prescribed Bentyl 20mg four times per day. This has helped a fair amount with the pain in my abdomen.

My pain is in the Ileum area and is often in the form of a muscle spasm. If the spasm is consistent it can actual be observed from the outside. You can see the right lower side of my stomache flutter in spasm. This is often the source of my pain and i was wondering if others experience this same sensation. If you have pain, where do you feel it and how high is it? (on a scale of 1 to 10 with 10 being highest-ER type pain.)

 

[Guest1]

I have not been diagnosed with any IBD as of yet (barium enema is scheduled for this Friday), but the first day that my symptoms started (Nov. 2008), I rushed myself to the ER after thinking my appendix was going to rupture -- the thing that scared me to death was the fact that I could visibly see and feel my lower right "appendix area" throb and pulsate. The pain started near my belly button, shot down to my appendix and started throbbing enough to want to drop me to my knees. Ever since that day the pain has remained a constant, dull ache that doesn't appear to be affected by food. I hope that you're able to find some answers soon.

 

[Guest1]

*wanted to add* I do have other symptoms, too such as loose stools, d when some things are eaten, fatigue, etc. but the lower right pain just lingers.

 

[Jerman]

Thanks Vanessa, it sounds like we have similar symptoms. My pain was constant in the same area you mention with the pain jumping from what was a steady 7 all day then up to 9 or 10 with a flare up. Since the bentyl, i have a lot less pain in general but still have the higher end of the scale when stressed. ****Interesting to note that when the endocscopy and the latest colonoscopy , when they saw no active Crohns, and took me of the crohns meds (Pentasa), I started the next day with the explosive D and the loose stools.

 

[Guest1]

Thanks Vanessa, it sounds like we have similar symptoms. My pain was constant in the same area you mention with the pain jumping from what was a steady 7 all day then up to 9 or 10 with a flare up. Since the bentyl, i have a lot less pain in general but still have the higher end of the scale when stressed.

There were a few times when I'd have a "flare" and it felt like fire, literally. I'd have to hold my stomach and walk over to the bed just to lie down until it passed. Once it passed, the pain just sat there still. I'm so scared that my bowel is being damaged by this inflammation, or whatever it may be, blech!

 

[Guest1]

Thanks Vanessa, it sounds like we have similar symptoms. My pain was constant in the same area you mention with the pain jumping from what was a steady 7 all day then up to 9 or 10 with a flare up. Since the bentyl, i have a lot less pain in general but still have the higher end of the scale when stressed. ****Interesting to note that when the endocscopy and the latest colonoscopy , when they saw no active Crohns, and took me of the crohns meds (Pentasa), I started the next day with the explosive D and the loose stools.

Did they biopsy any tissue?!?

 

[Jerman]

Did they biopsy any tissue?!?

They did, they took like eight tissue samples but I have not heard the results yet.

 

[cheeky]

My pain is in the Ileum area and is often in the form of a muscle spasm. If the spasm is consistent it can actual be observed from the outside. You can see the right lower side of my stomache flutter in spasm. This is often the source of my pain and i was wondering if others experience this same sensation. If you have pain, where do you feel it and how high is it? (on a scale of 1 to 10 with 10 being highest-ER type pain.)

yes, i experienced that pain, but i have been diagnosed with IBD, was told it was a stricture in that area. oh on a scale of 1 to 10, my pain was definitely a 10 (or higher lol) i found it difficult to walk, get in or out of bed, get in or out of a car... it was immobilizing pain.

what kinds of tests have you had done?

 

[Jerman]

yes, i experienced that pain, but i have been diagnosed with IBD, was told it was a stricture in that area. oh on a scale of 1 to 10, my pain was definitely a 10 (or higher lol) i found it difficult to walk, get in or out of bed, get in or out of a car... it was immobilizing pain.

what kinds of tests have you had done?

I have had cat scans, an angiogram, an endoscopy, 3 0r 4 colonoscopies, lead poison screening, a multitude of blood work, testing for celiac disease, and testing for poryphias. There are two more tests (can't recall the name) and another 24hour urine collection in a week or so.

What tests have you had Cheeky?

 

[kello82]

Normally this would be a time to celebrate but for now I am saving the celebratory trumpet in case I need to later firmly plant it in my docs butt!

LOL!!! hahaha

sorry, not much to contribute here, my pain has always been much lower in the bowel. descending colon and butt area.
hope they figure it out...more so than just calling it a "functional disorder". come on....

 

[cheeky]

I have had cat scans, an angiogram, an endoscopy, 3 0r 4 colonoscopies, lead poison screening, a multitude of blood work, testing for celiac disease, and testing for poryphias. There are two more tests (can't recall the name) and another 24hour urine collection in a week or so.

What tests have you had Cheeky?

sorry i took a while to reply, just noticed the thread...

the tests i had done weren't as many as you... i had initially ended up in emerg, they did bloodwork and an ultrasound... in the ultrasound the results said that there was signs that looked like ileal colitis... then, i was on percocet for a few weeks since it was around the christmas holidays, so i ended up seeing the GI for a colonscopy... which was not successful, as he couldn't pass my stricture due to extreme inflammation.... GI then he handed me a pamphlet about Crohn's (in addition to all this, i've had a history of abnormal blood work, and physical symptoms that made it pretty obvious it was IBD, but there's still further assessment needed to completely confirm whether it's Crohn's or UC, but he said it's more likely Crohn's - i think so too)

he put me on pred... then imuran... currently on imuran, now i'll have to get a follow up colonoscopy to see if there's been improvement... if not, the GI said possibly surgery... but i'm going to have a new GI do my follow up, so he may have a different opinion.

wow, you've had a lot of testing... .hope they figure things out soon. don't give up.

doctors don't know EVERYthing.... some conditions/diseases are very rare... so hang in there.

 

[Regular Joe]

Sometimes it seems MD's dance around this diagnosis so much, I wonder if it's actually in some kind of treatment protocol. Patient has distinctive Crohn's Disease symptoms, wait 2-3 years plus tests before we tell them. Is there a "waiting period" to get a confident and solid diagnosis of CD?

My first GI did the dance. The colonoscopy lab reports had "Mild Crohn's???" with noted question marks. I thought that was pretty bold for a first shot, and after only about 3 months of bowel pain, diarrhea. But then the GI writes a letter and says there is no sign of IBD, but also mentioned the "shallow ulcerations" and indicated he didn't know why they were there. The CNP continued to insist on treating my stomach gastritis and GERD. When I called for a prescription to deal with the pain, she called back saying we are not allowed to prescribe narcotic drugs. I said great I don't want narcotics, I want treatment for this disorder. Well we don't know what it is, and so on. I just held the phone away and when she was done, I politely said thanks and goodbye. Thought out loud, I'll go to my primary care physician (PCP); he's decent and will probably prescribe something until my next visit with a new GI.

Today I went to the PCP, he has me lie down, and buddy everything he touched was in pain. He just mumbled "Oh it's just everywhere down here". He was fast, and he knew right away what to do. He told me my lower colon was extremely spastic, and he would give me a presciption to tone down the spasms.

He prescribed Bentyl. I asked him about prednisone, naltraxone (LDN) and the tricyclic anti-depressants. He said prednesone is effective for Crohn's and does help, but it's not the "first line" he'd prescribe. The others are specifically to deadn the pain. We don't want to do that until the illness can be diagnosed, and then treated. He said this will hopefully keep major flares from happening until you get to the GI. He'll need all of my records.

He said I definitely had inflammation going on. I showed him the reports from 2002. He read all of them, slapped them down. Yep the same thing, inflammation and some kind of narrowing in the small gut. Then I said, if there's inflammation, then this isn't IBS. He said nope it's not IBS. There is a definite inflammatory "process" going on which could be, he pauses and says in that dreadful tone, "Crohn's Disease".

I asked him about the joint pain. He smiled and said in a deliberately evasive way: "The symptoms you describe are particularly unique to Crohn's Disease, so lets just say its within the clinical range of possibilities. I can't say because this isn't my aera of expertise. His other committment was that this looks like Inflammatory Bowel Disease: so he danced a little, but said you better get to that GI and let him see what needs to be done.

Like they say on TV "...to be continued" - on October 7.

 

[seaofdreams]

Wow, I can't say I love the idea of having Crohn's but at least I know that it is Crohn's, I can't imagine not knowing.
One of my major symptoms other than D was the pain in my upper right quadrant. It gets so intense sometimes that I can barely even breathe and the first few times I started getting it, my family wanted to rush me to the ER but I always declined because it wasn't a constant pain, it was more like cramping and it would go away. With it I also got vomiting and nausea.
I was lucky with my diagnosis, I have been getting mild symptoms for about 3 years but in the last year they have been much worse. I went to a few different doctors who all thought it was this or that but I was sent for a CT and then referred to a GI for a colonoscopy from there. Less than a week after the colonoscopy with a biopsy, I was diagnosed.

 

[Jerman]

Regular Joe, I hope that you are able to get a diagnosis quickly, but be mentally prepared for a possible long road, I am going in for a pill cam tomorrow, docs are telling me that is the last test they have. I hope that you are feeling well soon.

Seaofdreams, sorry that you have had a rough time of late, have you found stress can kick in the pain in the side right away?

 

[shazamataz]

Hi Jerman,

In my brief experience so far stress can definately make things worse. I haven't had an major issues with pain thus far (touch wood) with only really a constant dull ache when I flared and got really sick. Even with the abscesses I had the odd stabbing pain/cramp but they were few and far between. I was wondering yesterday actually if some people with Crohns just don;t get pain much, either that or I have a high tolerance!
Anyway, not painwise but symptomwise, I am SURE stress makes it worse. That said it can be hard to avoid stress when you have something like this which, in itself, makes you stressed!
I have certainly felt less okay in there this past week since being told I need to take Imuran (makes things seem much more serious and real) and have been freaking out over it! I am 100% sure though that this is not the Crohns but my mind doing it!
Good luck in sorting out your pain - sounds just awful.

 

[Agent X20]

Jerman
I have found that stress kicks bloating and pain in very quickly, but I suppose everyone reacts differently to stress. Some people are naturally laid back... I used to be... many years ago

 

[seaofdreams]

I don't seem to have any obvious connection between high levels of stress and pain but in saying that, I'm a pretty anxious person so my stress levels are constantly pretty high. I'm a big believer in emotions having a major influence over how we feel physically and I believe that it's possible for stress and other negative emotions like anger to manifest themselves somatically.

 

[shazamataz]

Nicci, I come from the same place! In the sense that I know that a lot of this is caused by psychosomatic factors, not in the sense where people take that word to mean one is imagining things, but that your mind affects your body and negative and unexpressed emotions get stored there - particularly in the gut which makes perfect sense to me.
I have been doing a lot of meditation on this and recommend it to anyone really. Lay down quiet, go into your body (where the problem is) and have a look around. I can say that my ileum wasn't looking too flash a few days ago but I've done some 'cleaning up' in there and it looks much better. You can do this any way your head takes you really - all visualisation works different for different people.

I may be nuts but I reckon it can't hurt and will have some positive effect if you believe in it!

 

[Jerman]

Steve, were you more laid back before you started having trouble with crohns' I find that I can be a powderkeg at times due to frustration with not feeling well. I also never had anxiety issues before and now well they are a part of who i have become....

Nicci, thanks I guess I have always been a pretty passionate, emotional person, but now I just seem to physically affected by getting fired up about something in a matter of minutes.

Shaz, I really want to learn how to meditate. Can you help me out with advice, websites, techniques? Thanks for anything you can offer.


Jerman

 

[dustydshook]

been in the er twice this month for pain and ccramps just like you describe i do have crohns. dr prescribed bentyl but didnt work so switched to chlord it was like a wonder drug could physically feel bowels relaxing about 30 min after i took it. Cramps were so severe that stomach muscles were sore the next day like after a wrk out. this is my third day on chlord and feel much better. but you are right the pain is debilitating on a scale of 1-10 it is a 15. I also am on pentasa, prednisone, flagyl fish oil flaxseed oil, multi vitamin and calcuim citrate. If bentyl doesn't work try the chlord

 

[shazamataz]

Hi Jerman,

I'm not much of an expert of the meditation and kinda just do my own thing.

Earlier in the year I went to a Raja meditation course which is apparantly one of the 'easiest' ones'. Basically involves focusing and clearing your thoughts, especially the negative ones.

Hard to explain really. You can get CDs and things with guided meditation which are good because they talk you through the process.

What I tend to do at the moment is just lie down comfy and repeat good things over and over as I breathe in and out like 'I am okay, I am okay, I am okay...' or 'I am healthy and strong, I am healthy and strong...'. I also foucs on my breathing and try to get it coming roght from my belly as I tend to be a breath-holder and am always fairly tight in my lower abdomen.

The other thing I do is visualisations. This may be something like focusing on something positive for the future, a goal perhaps. One of mine at the moment is to get fit enough to hike up one of our local tracks that is a good three hour return trip and really steep and hard but one I used to do when i was younger. So I visualise myself doing that.

Or I visualise going inside my body to see what's going on. So I will go inside my intestines and have a look around and if there is anything 'nasty' happening I clean it up, like use a cool hose on inflamed bits.

Or, you can do stuff with light - imagining healing light coming down on you and filling you up with love and healing etc.

I really don;t know if I am doing the meditation 'properly', or if it is doing any good, but it FEELS like the right thing to do. If nothing else it can direct your thoughts towards the positive for a while. Takes lots of practice to stop the negative/worrisome ones coming in.

Good luck!

 

[Jerman]

thanks shaz i will try it out

 

[Agent X20]

Steve, were you more laid back before you started having trouble with crohns' I find that I can be a powderkeg at times due to frustration with not feeling well. I also never had anxiety issues before and now well they are a part of who i have become....

Jerman... not sure when the "laidbackness" went. Think it must have been on a sliding scale over the years and two divorces probably haven't helped. Can't believe how stressed I can get over really trivial things at times. I'm certain, however, that periods of good health = less stress