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Crohn's, IBS, Intusseption, What is it???

Ok. I can honestly say that, after weeks of internet searches, I have not found anything that would help diagnose what I have. My hope now relies on you..(and on the exams I am still going through...!)

I am in my 30's and, unitl 12 months ago, the most serious thing I've ever had was a flu. It all started a yr ago when I was rushed to the ER with unbelievable intestinal cramps. CT scan showed a intestinal obstruction and exploratory surgery was done. Nothing was found. No tumor, no scar tissue (no previous surgeries), no bands, no inflamation, nothing. The surgeon simply ran her hands through my bowels and the obstruction relieved itself... He diagnosis was "hmm interesting..."

Since then, I have "episodes" roughly once a month. They include: severe cramps, extremelly noisy sounds, lots of air. It usually passes after 1-2 days, but sometimes it may take a week. Most of the time it is followed by the big D, but not always. I had a serious one last month, went to the hospital and CT revealed another partial intestinal obstruction. This time they did not operate and it went away. Pain was unbelievable and morphine was needed.

I have seen a GI and have done blood tests, colonoscopy and small bowel series. All normal. The GI is puzzled, so am I. Here are the possibilities:

IBS: Symptoms are similar, although i don't necessarily go to the bathroom several times a day like IBS patients usually do. In fact, 90% of the time i do not have D or C. Plus, IBS does not cause intestinal blackage, or abnormal CTs

CROHN's: My problems flare up like crohn's, so it could be an inflamatory condition that could also cause the obstruction. The problem is: I get no fever, no bleeding in the stool, no pain in the joints, no rushing to the bathromm, etc... and the colonoscopy and small bowel series were normal. another factor is that Crohn's usually develop in the teens and I am 36.

TUMOR, INTUSSUSCEPTION, ETC...: The radiologist and my GI insist in saying that my small intestine was partially obstructed both times, but CT scan, SB series and colonoscopy revealed no growth or mechanical obstruction. Plus, during the exploratory surgery, nothing was found.

So... What do I have? My next test is the pill cam, where you swallow a camera that takes pics of your small intestines. I am scared to death to do this and have the pill get stuck. I no not have any symptoms now, but how knows... Should I do it? I am scared, but would like to knwo what I have once and for all

I am being careful with what I eat, since the episodes usually happen after a night meal and cause INTENSE overnight abdominal pains. Pains are usually located right below the stomack, always above the belly button. I am taking bentyl for the cramping plus peppermint teas and anything I can find to soothe the bowels. I recently cut dairy, wheat, sodas and alcohol. Can't seem to pinpoint a particular food I ate that caused an episode. However, I can alwasy see it coming when one is iminent (bloating, noisy intestines and cramping.) sometimes it goes away with a hot bath or hot compress, sometimes I am in the ER wiht a partial obstruction.

Sooo... I have read a few threads here and am amazed at your resilience! Keep up the good fight. heck, I may be joining your fight as of today. In teh meantime, any insights form your wealth of knowledge would be greatly appreciated!!!

Thanks to all!
Marc
 
Hi Shantel. Thanks for the prompt reply.
No, no previous surgery in my small bowel. Like i said, the exploratory laparatomy found nothing.so they openned me up and took out the appendix (for the heck of it), but nothing else. My obstruction occured in the distal part of the small intestine, where sometimes crohn;s develope, but they found nothing with the colonoscopy.

After reading a lot of the posts here, I see that people pay a lot of attention to blood tests. I have done tons, specially when I had the surgery for the first obstruction. I was in the hospital for 10 days because i had an (you guessed it) ileus. Although, they said it was due to the operation (which I mentioned, did not find anything that caused the obstruction). Anyways, as far as I know, blood tests come back normal everytime. No inflamatory signs either, no joint pains, no bleeding, no weight loss, which tells me it may not be crohns. But then, my episodes seem to "flare up" ocasionally. So it does not look like it is not something permanent, like a mass, or tumor, or ulcer.

Funny you mentioned ileus as a possiblility. I have considered that as well. One surgeon that treated me the second time I was in the ER said that he would not be surprised if I simply have an intestine that "does not work very well". Sometimes I think that's exactly what's wrong with me. Why now at 36 yrs of age, no clue. When I have the episodes, one can hear my belly sounds from another room, it gets bloated, then relieves, then bloated again and the cramping starts... then, I could have 3 weeks of no symptoms. But whatever it is, has caused 2 obstructions (which could have been pseudo obstructions caused by an ileus). As you can tell, I am somewhat well informed. I have done tons of reading...

Thanks for the feedback. It helps to hear form people w/ similar experiences. Let me know if you have additional info about the friend you descriibed. Just lookng for matching symptoms here...

Stay well,
M.
 
hi Tchelo.. the first thing that sprung to my mind was that it could possibly be an intestinal spasm..? as well as Crohn's, i've been through episodes of IBS type symptoms, where i get spasms of my small intestine, pain, inability to eat, and i can feel like a knot in my belly. i used to take merbentyl (antispasmodic) and it helped a lot. nowadays i hardly get these symptoms, but i keep a bottle of Kolanticon in the house, which is ant-acid with antispasmodic incorporated. i'm only guessing here.. but maybe it's worth mentioning to your gp to see if it's ok for you to try an antispasmodic and see if it helps?

i've also had full paralytic ileus, twice, once after surgery, and a second time after a bowel obstruction - very scary and not nice at all, so i commiserate.

one thing.. if it's Crohn's (which to me doesn't sound likely, but i'm not a doctor), then it's recommended to not take peppermint oil or peppermint drinks.. these can irritate the stomach lining and make Crohn's symptoms worse.

if it is something spasmodic, with or without the diagnosis of IBS, then maybe relaxation, and in particular stomach massage, might of help.

i hope you find the answers soon!
 
Digbat:

Thanks for the note. I do take an antiasmodic (bentyl) and it is hard to say if it is doing anything. Like I mentioned, can come and go in hours. It starts after I eat, then the loud noises, then the cramping. Sometimes it stops ther, sometimes I find myself with a 10/10 pain in the ER with a CT scan that shows obstruction. Really puzzling.
I have the pill-cam test tomorrow and I am a bit uneasy about it. I'm just afraid it could get stuck and have surgery to remove it. My GI has says the chances of that are minimal. He recomended the exam because he has yet to see anything that could be causing this. I had a small bowel series a few weeks back and the entire digestive track looked fine. But then I do have a history of obstructions and they are NOT FUN! Had one last month, in fact and went away on its own while in the ER.
I must say, my episodes seem to come in flares, but I have yet to experience the uncontrollable diarhea, inflamations, joint pains and fever. I am trying to rule out Crohns, but the doctor is not ready to do yet just yet. Neither am I...



Anyway, I figure that I have to do the cam do see what's causing this. If it finds something, I'll deal with it. If it doesn't, then who knows...
 
lol Shantel...
I know we are not doctors, but sometimes I think we are in a good position to at least brainstorm some ideas. After all, we have the symptoms.
No, no other motor disorders. I too have considered that. There is a condition called "Pseudo Obstruction" which causes the intestines to get obstructed with no physical cause for the blockage. They are likely caused by other conditions, such as Lupus, Multiple Sclerosis, etc... I mentioned to my doctor and he said that it is unlikely (mainly because the condition would likely be permanent, not come and go)... Frustrating, huh?

Thanks for the best wishes. As long as I am feeling ok, I will swallow the pillcam and pray for the best. If I feel ok by mid PM, I suspect I am on the clear and the pill will be on it's way out eventually. It's almost like I want the pill to find something, but then I don't... Thanks for the notes... I'll keep you posted
 
glad to hear you're already on bentyl..

maybe it's a kink in the bowel? this can happen, and can cause an obstruction - it might also explain why there's nothing shown up from your previous tests apart from the obstruction itself.

i think i'd be tempted to go ahead with the pill cam.. maybe eat very lightly that day with plenty of fluids and less roughage. when is it booked for?
 
Thanks for the reply, guys.
Ok. The pill is in! I was quite large, but I feel that the benefits are worth the small risk. I feel good this AM, so I suppose today is as good as it can be. I look like the unabomber, LOL. All kinds of attachements! There is not way I am going to work. Toooo many weird looks and questions. Maybe I'll walk into crowded a bus just to see how many people will jump off.. LOL

You are right, Shantel. The surgeon saw no kink. Plus, my episodes come and go in different magnitudes. Based on how well I feel some days and how obstructed I get on others, I feel this is not a permanent obstruction (although my GI think it may be a polyp, or a nodule that catches food or caused the intestine to telescope inside itself. An elegant theory, but just doesn't seem to fit w/ my symptoms... This is truly a hmmmmm kinda of condition, it has me, doctors and my GI scratching our heads...

I hope you don't mind me posting here. Who knows if this is crohns or not, but I feel a lot of energy from the folks here. It is frustrating when you go through numerous tests and they yield no answers. I hope to find mine, so I can live better and help others with the same problem. I keep searching the internet for similar cases with no luck. Who knows, maybe somebody will read this and I'll be able to help, just as you are all helping me.

Now the true question: When will I pass this pill? I took it at 7:30 AM. My guess is tomorrow at noon. Any guesses? Surgery is not an acceptable answer! lol

Cheers..!
 
The pillcam is OUT! 9:35AM. Very impressive, Shantel...! As a "Senior" member, you did not disappoint...

On a serious note, glad I had no complications. In and out pretty smoothly. Now I wait 1-2 wks for the results. I guess if this thing finds nothing, I will be stuck with a spasmadic, painful, noisy and obstruction-proned small intestines with no known cause....
 
Ok friends: The results of my capsule endoscopy are in! According to my GI, the test showed a diverticulum in my small bowel, in the jejunum section. Are you serious??? I asked! How can a cavity cause unbelievable pains and bowel obstructions? He said that it is possible that once food gets in it, it dialates and it may push another section of the bowel against itself, causing an obstruction. weird, but possible, I guess...

He said that he needed to see something to "avoid" an IBS diagnosis and he said that's what the test showed. Everything else was normal, no mass, no tumors, no cancer, no Crohns.

I asked "politely" how confident he was that this diverticula thing was causing all my problems he said: "60%". Hmmm... Not what I wanted to hear, but he was honest. I did some brief reading on it and I guess it is possible that it is causing all my episodes. He said that my symptoms didn't match 100% with what he would expect with somebody w/ a diverticulum, so he didn't rule out a little IBS mixed in all this.

So I asked him: "What do I do" He said: "well, eat more fiber" I asked "No surgery needed?" He said "I wouldn't go through surgery for this". He said that I should discontinue taking Bentyl, but I told him that I would like to continue taking it, just in case part of the problem is a crampy intestine. He said I am likely wasting my $$$ but said "ok".

I asked for a copy of the exams (in case I want to look for a second opinion) and he said he'd mail one first thing next week. That was it. Weird, huh?!

Sooooo, I'll do some reading to find out a bit more about it. The little that I have read led me to believe that this could be it. Diverticula can be associated with obstruction and IBS is not. And since NOTHING else was found (after 2 CT scans, numerous xrays, a small bowel series, a colonoscopy and the capsule endoscopy), I guess I may have to accept it. Although he didn't tell me to do anything but eat more fiber, I've learned that there are some things to avoid, like fruit/veggies with seeds, peanuts, etc... So I guess I'll do that and see how things progress. The night of my first episode, I did eat a vegetable with LOTS of seeds in it. If the episodes continue going forward, I can always take all my exams to somebody else. What do you all think?

All in all, I am somewhat relieved. I have gained an infinite amount of respect and sympathy for all of you in this board, who fight so hard to deal with CD. You are an inspiration to many, but then I'm sure you already know that. I now have a diagnosis and I'll try to deal with mine as well as you all have dealt with yours. I like to think that our intestines are less than perfect, which puts me in the same "prestigious club" that you all belong, and I am honored. I hope that my story and my diagnosis can help somebody else who is desperately looking for answers. In the meantime, I'll keep checking on you all and keep you updated on my progress. As always, I welcome you comments and insights!

Thanks,
M.
 
Hi Marc,

My brother was recently diagnosed with diverticulitis following similar symptoms. Those little buggers can cause a lot of pain! He was told no seeds and no nuts and drink plenty of fluids.

I've been reading up on this because of my brother's diagnosis. I agree with Shantel. If you develop a fever then it's a sign that the diverticula is inflamed and you need antibiotics pronto to avoid surgery. It's not one of those things you can just tough out and wait for it to go away. You can end up with peritonitis, which can be fatal. So first sign of fever, take yourself to a doctor.

End of lecture lol
 
Thanks, jiriji.
Does your brother have it in the small bowel too, or colon? Does he get obstructions, or just the inflamation?

Trust me, I have had those pains and you CANNOT tough them out, especially if there is a blockage.

Based on what the doctor said, this diverticulum may be causing the episodes of pain, bloatness, etc... and obstructions. I have not had it inflamed yet (so no diverticulitis), but rather, it may be pushing other parts of the small bowel as it gets full.
Your suggestion is well taken and I have moved away from seeds, nuts etc... In fact, I am even chewing more, to make sure stuff doesn't get in there. What surprises me, however, is that many doctors say that the ill efect of seeds, etc... cannot be proven. Whatever...I am not eating them. Plus, I am taking my bentyl and my fiber, just in case there is an IBS issue as well.

I'll keep you guys posted. I have been 100% for a few weeks now, knowck on wood. The episodes usually come every month or so, so I am getting a bit anxious about whether or not one is on the way...
 
I understand...

I Just wanted to say that I understand how you feel Tchelo! I have been fighting gastro issues for 8 years with no true diagnosis. 3 gastro docs, numerous procedures and ER visits and hospitalizations later, my results are still inconclusive ad I want to give up. So I hope that you receive some relief soon. I wouldn't wish this on anyone. Good luck and God bless.

E
 
Thanks for the best wishes, Miss-E. It is hard not to have a diagnosis, specially when one does not feel well. I have felt really well in the last month, so I am enjoying while it lasts. Not sure if my diverticulum diagnosis is conclusive, but I am taking one day at a time...
I hope you find some answers soon...

Best,
M.
 
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