about a month ago I was admitted to the hospital because I was passing out and losing consciousness. they admitted me immediately, ran tests, including an EEG, C-T scan, x-ray, the whole 9 yards. last year, my gf at the time woke up in the middle of the night bc I had smacked her in my sleep. turns out I may have had a seizure. I had these convulsions at random times throughout the last year. only last month they got pretty serious and went on for about 24 hours, which led to this hospitalization. the EEG spiked and showed signs of a pretty serious seizure. I'm now on Topamax for the seizures, although no one knows the cause....

while I was in the hospital being treated for the seizure, they obviously ran blood tests, they also did an x-ray of my abdomen, and other tests. the CBC results were about 9.7 hemoglobin and 20 hematocrit. not the best, but I've seen worse. they also told me that they saw distension in the x-ray and it looks like there's a partial bowel obstruction (but they never sent me for a c-t scan!). On top of all of that, I had a colonoscopy a few days earlier and my colorectal surgeon told me that my pouch looked great, but the rectal muscles at the end were bleeding and inflamed. so he said that doesn't really explain the severe pain that I'm having. it explains some of the bleeding, but not all. to boot, I was seeing my doctor's on-call partners. not my doctors.

so...... I went for a c-t scan today, that my GI had scheduled. he called me back a few hours later and told me that there were no signs of an obstruction and he wanted to send me for a GI series. I told him that I was still a little worried because I had severe distension in the lower right side of my abdomen - right above my j-pouch. and when I say sever distension, I'm talking I looked pregnant, where when I showed it to my roommate, she flipped out and couldn't believe how huge I was. the distension/severe waves comes and goes. 2 nights ago, I couldn't sleep and when I finally did fall aslseep, I would wake up 15 minutes later, try to go to the bathroom and nothing. I lost count but I was in the bathroom about 12 times and actually went to the bathroom twice that night. and I didn't just wake up with the urge. I woke up in excruciating pain where I didn't even want to walk. I'm just like any of you guys. I'm a trooper. I don't like the ER. I'm there way too often and I try to avoid it and let these pains pass. I usually don't go to the ER for a blockage/obstruction unless I vomit (unless I'm completely "blocked"). but this one is a head scratcher for me... my GI flat-out said to me that he isn't sure what could be causing it, that it could be an obstruction that comes and goes, it could be a hernia that wasn't picked up, it could be something as serious as a twisted bowel, considering the c-t scan report did say that there were "loops of bowel" (which I don't really think matters, because when we don't have a large intestine to cage in our small intestine, of course the small intestine will be looped around - it's a problem if it's tied in a knot).

last year, I had just about the same problem. thanksgiving, excruciating pain, couldn't walk, crawled into my father's room crying, he carried me into the ER. they admitted me, just thought that it was pouchitis, discharged me after 4 days. 4 months go by, and I finally decided to meet up with my original colorectal surgeon (the doctor who I see now), he says that nothing is really showing up on the tests but I was in excruciating pain for 4-5 months straight with non-stop ER trips. he decides to cut me open in hopes to find something to cure the pain. and sure enough, there were adhesions that had caused a pretty nasty partial bowel obstruction. as soon as that was cleaned up, no more distension, no more pain. problem solved.

so, I'm thinking, instead of dealing with months of pain, annoying tests like GI series (last year during the GI series, I actually started throwing up the barium, then fainted and choked on my vomit and had to be rushed into the ER), then I should just tell my colorectal to cut me open, hope for the best, sit in the hospital for 5 days recovering for the surgery, sit at home for 6 weeks, and all will be well. meanwhile, I'm home for the next 5 weeks or so anyway, while my body adjusts to my seizure medication anyways.... and before you say it, it's not a reaction to the seizure medication. I already researched it, and this has been going on before I started taking it....

I say THANK YOU to anyone who not only has something to say to this, but who actually had the patience to read this ridiculously long post. I'm kinda frustrated right now and I know I rambled. So, if anyone has any insight it's more than welcome. Thanks in advance guys. I hope you're all doing well. Stay strong.

This message has been edited. Last edited by: penywisdom,

Hi Josh,
My heart really goes out to you...it really sucks that you're dealing with all of that. The only think I can relate to is the obstructions that my daughter suffered through...absolute hell for her...several trips to the ER with people staring at her while she was vomiting in the waiting room..all of the tests etc etc. I won't go into all of the details of her complications, but do want to cheer you on and say dig deep for that tenacity and you'll come out on the other side...you don't know just how tough you are until the storm is past.

All of the stuff that jpouchers go through just makes each of you that much more in tune to the compassion you exhibit to someone else who's going through it, which is evident through the support of everyone on this board.

Hang tough Josh!

Josh, I'm sorry I've got no advice for you - this is way beyond anything that has ever happened to me. I feel so badly that you're going through this and there doesn't seem to be an answer yet. I've got my fingers crossed that this resolves asap for you and you can get back to living your life. Hang in there, there is a solution and you will get better.

Suzanne

Josh, You didn't ramble on. I enjoyed your post because I can relate to it. It has been 5 years since my take down surgery and then I had to have 3 hernia repairs in which two of them involved placing mesh across the incision area. I take heavy doses of Oxycontin which is a powerful narcotic and it would make a elephant constipated. I take it because I have terrible back and hip pain. In two instances I developed an Ileus. That is when your small intestine gets kinked up or loops and caused bowel obstruction. ITG is so painful that I compare it to the feeling you get right after your first main surgery when you have a ileoanal j-pouch performed. I had to hold my gut with my hand because I felt like it was going to fall out. I started vomitting and I went to the emergency room and they gave me a huge injection intravenously of morphine. It relaxed me so much that within 45 minutes of haveing two injectionS of morphine, the obstructed bowel relaxed and I was tatolly fine and walked out of the ER like nothing had ever happened. That is an ineteresting story but morphine is not readily available as we all know. WHAT I HAVE FOUND THAT WORKDS BETTER THAN ANYTHING ELSE THAT I HAVE EVER USED TO TREAT CONSTIPATION IS MAGNESIUM CITRATE. IT IS A 12 OZ. BOTTLE OF FLAVORED, CARBONATED AND SWEET LIQUID. YOU DRINK THE WHOLE BOTTLE OR HALF A BOTTLE ACCOMPANIED BY DRINKING AT LEAST 12 OZ'S OF LIGUID WITH IT. IT TAKES ABOUT 1 OR TWO HOURS ADS IT WILL ALLOW YOU TO BAVE A BOWL MOMEMENT AND YOUR TWISTED BOWEL WILL BECOME UNTWISWTED. IT HAS NEVER FAILED ME. I REALIZE THAT I MAY BE SPEAKING OUT OF CONTEXT BECAUSE YOUR PROBLEM IS MOSTLY NOT RELATED TO SIMPLE CONSTIPAION. BUT IF YOU FIND YOURSELF CONSTIPATED AND NEED RELIEF FAST I CAN ATTEST THAT MAGNESIUM CITRATE IS A VERY GOOD OVER THE COUNTER PRODUCT FOR CONSTIPATION.
YOUR FRIEND,
RICK CARTER

Josh - I'm so sorry you're continuing to have problems. I'm sorry they can't figure it out. It must be so frustrating for you. Please keep us updated!

kathy

My husband has epilepsy and I never saw a seizure even after 20 yrs of marriage...Then about 5 yrs ago he had a break through one..Scared the living daylights out of me and I wasn't sure if I should call 911 or not since he always told me if it happened not to bother.. Well, it bothered me! So 911 here I call. Since then he has had a couple of others, one was when my 9 yr old was home and scared him too! My 12 yr old had seen them previously and he wasn't worried about it...That's my experience with epilepsy. I know that doesn't help you much but at least I said something about it...
Ok, on to an ileus...It's my impression that an ileus is not a true mechanical blockage(as in stricture or twisted gut, but rather the gut freezing(not moving)in a section of the intestine...If I am wrong please correct me! If you actually suffered from a twisted gut you would more than likely be heading for surgery..
Maybe taking a laxative type otc would be helpful if it's a ileus but I don't think I would do it with a mechanical obstruction. I had this lovely experience with a fleet enema and had my gut contracting right and left but nothing moving...I was in such misery I asked the nurses to bring in a chair to the bathroom so that I could try to sleep on the pot...(I didn't sleep)
The best thing that has worked for me when in the hospital is good pain management, maybe an NG tube for a day or two and LOTS of walking. When I get that pain medicine going I walk the halls as long as possible...They do their job wiht the pain and I do the working part. O ya, I also had a insicional hernia that became infected and had to be redone after a month of being in the hospital with a wound-vac machine..
O ya, I suffer from chonic pain that seems to stem from multiple loops of bowel being adhered to my abdominal wall...

Everyone IS SO DIFFERENT!
Julie

hey guys.. thank you SO much for your replies. I got some helpful advice. the magnesium citrate seems liked a good idea. what scared me off is that I don't know what exactly is wrong with me; if it's a blockage, partial b.o. due to adhesions, hernia, etc, so I don't wanna jam stuff down my throat that could potentially make me vomit even more or upset my stomach even more, ya know? the flee enema isn't a bad idea, if I feel like it's just stuck in my pouch. I've been passing gas a little bit more frequently. I'm having a few bowel movements - although not as many as I should be having (2-3 a day) so I'm still in discomfort; but I am getting by. I've been trying to just suck it up and deal with the pain and walk a lot. when I walk my dog, I take extra long walks. I went into the city last night and instead of taking a cab or a subway, I walked everywhere. that's really all I can do. laying in bed moaning and groaning wasn't helping! it just sucks, playing the waiting game of sitting back waiting for my belly to become so distended that I look pregnant. my surgeon told me that as soon as the pain hits me, and I'm distended, to call his office immediately, and they'll get me into a radiology office so they can get the x-ray and at least he'll know where he needs to operate. otherwise it's exploratory surgery and big scars and well, that's not fun. obviously, if it's the middle of the night, I'm stuck going to the ER. but I kinda wanted to go to the ER when I become distended, anyways. that was my issue. as any of you that have had this kind of pain know, when you're backed up like this, you're not going to casually call your dr and say "hey, what's up! my belly is swollen, I can't go to the bathroom, if you touch my abdomen at all, I'll scream. so, how about that x-ray? I'll drive over there now!" screw that. I'm going to the ER, where I may have to wait a little longer to get the x-ray done. but at least I can get a shot of morphine to help with the pain, calm me down, and god forbid something goes wrong, I'm in the right place. well, we'll see what happens... hope everyone is doing well and is having a fun and healthy weekend. stay strong.

With everything you're going through and pregnant to boot, you have an amazingly optomistic outlook. That is probably helping more than just about anything right now.

I hope you find the source of your pain because this has been going on for way too long. But it definitely sounds like a blockage caused by something! So here's hoping they find the something....

kathy

I should probably clear something up... when I say "I looked pregnant," I just meant that my abdomen was so distended that my roommate jokingly said that I had a pregnant woman's belly. I'm a 24 yr old male, so that would be a problem if I was pregnant... I could only imagine, a woman going through these problems with child. and if there is someone out there, on this board, anywhere, God bless, and my heart goes out to you. I can only imagine. I'm sorry if I confused anyone or offended anyone. I was just trying to give you guys a mental picture of how distended my abdomen was. The last time that my abdomen was this "dilated" was 5 years ago when I had a twisted bowel 5 days post-op my 1-step. to this day, I don't know how the problem got fixed with surgeries. it was one of those "no way! I don't believe that really happened!" stories where I was in ICU, couldn't move, was in the most pain of my life (I also had a collapsed lung to boot, from a botched central line removal), and all I remember was "going to sleep" and opening up my eyes, looking down, and seeing myself laying there not moving. I screamed and cried "wake up!" a few seconds went by, I woke up, I actually stood up after 24 hours of not even being able to MOVE without excruciating pain from the twisted bowel, 3 nurses come running into my room along with the on-call surgeon to see if I was ok, and I didn't know why. they're asking me how I'm standing, if I feel ok, etc. my surgeon tells me the next day that I had flat-lined for a few seconds and I just lost it. broke down, cried on her shoulder, the whole nine. so yeah, long story short, that's the last time my abdomen was this swollen. and it was a twisted bowel. and it fixed itself on its own. I was lucky in that instance. as we speak, I'm in a bit of pain, but I'm also on a fair amount of Fioricet for my migraines and Topamax for my seizures (both cause intense drowsiness) so both of those have lowered my anxiety at the moment, which have obviously lowered my pain level. I'd say on a "distension level" (we all know the pain level from the hospital" I'm about a 5. so that's not terrible. and I'm still having bowel movements. they're just not that frequent at all and they're incredibly painful and watery. plus I'm seeing my GI tomorrow. so he'll check it out. and if he's worried and thinks I'm still too tender then he'll shoot me over to the radiologist to get an x-ray, if something pops up, then my surgeon can cut me open, and put an end to this madness! hope everyone had a great weekend. again, sorry for the confusion. stay strong everyone. peace and love to everyone. hang in there.

Oh you silly.... I know you're a male! I was thinking you could make scads of moola being the first male to get pregnant!

kathy

yeahhh I think I'm okay lol. I have enough pain in my belly without having a baby kicking around.

a little update... a couple of days after my last post here, I started vomiting shortly after my dinner. I became ridiculously distended, incredibly nauseous, etc (obvious signs of a severe blockage). So, I told my roommate that I needed to go to the ER for an x-ray and a c-t scan to finally figure this out.. I threw up a couple of times on the way to the hospital, took a sip of arizona iced tea when we had pulled up to the hospital just to get the taste out of myself, and I vomited again a few minutes later.. I don't ever remember being that blocked up, that I would just take a drink of something, and soon thereafter I would vomit. I ended up collapsing on the way into the ER and vomited everywhere. So, at this point, I'm thinking that I'm obviously going to be admitted, but that I'm probably having surgery at some point...

they ran the tests, gave me the pain medicine, etc. all along I was telling the ER dr that I have a bowel obstruction, I just need an x-ray and a c-t scan w/contrast to maybe pinpoint where the obstruction is... it was a slow night at the ER so the radiologist actually let me check out my x-rays, which was awesome! I saw the pouches of air on the x-ray right around my areas of pain. so, they admitted me, put the NG tube in, and left me to rest until a room opened up.

the next day I ended up in the surgical unit, then got amazing news that my surgeon was out of the country. this was wednesday and he was coming back monday. so his partner told me to sit tight, get the pain under control, and just rest up.. he didn't really send me for any tests or do anything. but I'm pretty sure he was afraid to do anything without my dr...

so the following monday my dr comes back. my dr, his partner, the radiologists, everyone, all saw that I had an obstruction but no one could find the cause. so, that same day he sends me for a pouchogram (basically a barium enema) because he's now worried that my pouch may not be functioning properly. aside from the test being ridiculously uncomfortable, everything went fine. the pouch did everything it was supposed to, it emptied into the intestines and back without a problem, I was able to evacuate, etc. so, the next day my surgeon sends me for an upper GI series. and because I was NPO and had an NG tube in, the barium was fed through my NG tube. the first couple of hours were fine. the test was early in the morning so I actually fell asleep at one point. then I started vomiting in my sleep, while laying on my back, with an NG tube in. so I obviously woke up and signaled for one of the technicians to get me a garbage can. I told the radiologist that I wanted her to finish the test bc that was the only way to find out what the problem was, but that I just couldn't drink any more barium. so they took more x-rays, finished up the test. my surgeon had actually come down to check on me once he heard that I wasn't doing too well. the radiologist thought that I might have a stricture near the pouch but my surgeon said that's just the anatomy of the pouch.

so my surgeon was pretty much running out of options but he didn't want to cut me open without knowing exactly where the problem was. he could have created more adhesions, created another problem, the risk of surgery, etc. so, he decided to do another colonoscopy, this time with balloon dilation. I had a scope done with him a few months ago when I first wasn't feeling right. Him and I both agreed that the balloon dilation probably won't work (I had it done last year by a different doctor and I still needed to have surgery 6 weeks later). so, the next day after the balloon dilation, I was going to the bathroom a little more, not as much output from the NG tube, not as much distension. so he decided to clamp the tube and start me on clear liquids. everything went fine, I started eating, was discharged a few days later.

tomorrow will be one week since the balloon dilation and whereas I don't feel as bad as I did when I was admitted almost 3 weeks ago, I still don't feel great. I've been having 9-11 BM's a day, when I normally have 6-8. I've had blood when I go to the bathroom (but not every time), SEVERE gas pains that I can't always relieve, and general stomach cramps that I can't always relieve when I try to have a BM. so, I guess a lot of BM's is better than 0 BM's. And it sounds like the obstruction is cleared up. I'm just not convinced that it's gone. I think that in a month or so, enough waste will build up at the spot again, I'll have the same symptoms, and I'll be in the same spot. So, for now, I guess the dilation worked and it was a success. The pain has been pretty awful though, especially when you consider they discharged me on dilaudid 2mg tablets and I also have bentyl 20mg tablets if I'm in excruciating pain (don't worry, I know narcotics slow down the GI track and if I'm backed up, I don't take anything)

I don't know how popular the balloon dilation procedure is. I've had it once before and I remember not feeling great after it. I guess I was just curious if anyone else had this much pain after they had it done?

So Josh... since it hasn't killed you yet you must be one hell of a strong guy. Thought about the olympics? You poor guy. I can't believe everything you continue to go through.

I think I recall that other people have had residual problems after a dilation. I hope that's all it is. Please let us know how you're doing as you go through this.

kathy

I get obstructions fairly frequently, sometimes high sometimes low. When I develope obstructions that are high up in the GI tract make me throw up, lower ones don't. Keep in mind it's possible to have a blockage and still produce stool, but usually the stool will be clear or bile green.
I bet the reason why you still feel crappy is that your gut is still trying to get over the obstruction. I have also had the same feeling after discharge(feeling still blocked). For me, on the longer lasting obstructions I have felt sore/sick for as long as 3 weeks. I'm glad your surgeon didn't go nuts and open you up...The longest I have been in a hospital with a obstruction was 2 weeks. During that time they never gave me a NG tube. All my other hospitalizations involved NG tubes. My last time around I was told that I should only need the tube for a couple of days...Of course if I started throwing up they would have to put it back in. Why the doc choose to tell me about the shortened tube life when he was discharging me I don't know!! Jeese!
Julie
Hang in there..It'll get better

so I saw my surgeon on wednesday and we went over the results of the scope/dilation from last week. he said that he scoped just about all of my intestines - almost all the way up to my stomach. and didn't find anything. so, whatever "stricture" the radiologist saw was probably just the anatomy of my j-pouch and she was just a little confused by it... he also said that, whereas it's very unlikely, it could be that my obstruction is actually at the anastamosis. And the reason that no one was able to pick it up was because they were looking for the narrowing after the dilated bowel. but the anastomosis is obviously always narrow. so the balloon dilation may have actually been the cure, we'll see... we're still not convinced that's what it is, it's a long shot but who knows at this point.

why I love this doctor and why I trust him so much is because most doctors would just say "well, it must be in your head" or "well, sure there were pouches of air and some kind of blockage somewhere. but it's no big deal. you're fine." but he told me that he knows that something was obstructing me, he knows that I wasn't making up the pain because he trusts me, and he is going to go over my case with a few other colleagues, possibly present it at a conference in a couple of weeks, and maybe even send me for a consult with a world renown surgeon in NYC Dr. Milsom. I've heard of the guy and I know that he's one of the best. my surgeon was telling me all about him. the issue that I'm fighting with is, what if Dr. Milsom does find the problem, tells me that he'd like to operate and fix the problem, etc? He's a different kind of colorectal surgeon. If you don't know much about his work, he's truly increddible. He's actually performed the collectomy-ileoanal pullthrough all in a one step before, all laprascopically. As impressed as I am with him, I don't care. I don't want another surgeon operating on me. I only feel comfortable with my doctor. He's done SO much for me over the past 6 years. Whenever I've needed anything, he's dropped what he was doing for me. And it's not like he's some idiot doctor. This is a chief of colorectal surgery, head professor at the medical school, etc. When I was in the hospital last week, not only would he come in to do his job, see how I'm doing, etc, but he would then sit down and hang out with me for 10-15 mins and update me on the mets game from the night before (in the hospital, I didn't get the mets games and he knew this).

I really do love this guy. and he trusts me just as much as I trust him. I said to him when I was getting discharged that as much as I want to go home, I still don't feel too hot. "Not a problem, here's some dilaudid." Or I'll ask him about a new drug, he'll perscribe it to me, talk to me about the drug interactions and tell me that I know what I'm doing so he trusts me to take it when I need it. He's actually said to me on countless occasions "I wish all of my patients were as knowledgeable about their condidtion as you are." And I always tell him that, not only do I read medical journals on my own, but I always bring up j-pouch.org to him and tell him to suggest it to every one of his patients and he does.

Bottom line is, regardless of what this "world renown" surgeon finds, I want to stick with my guy. My question is, 1) am I crazy for sticking with my surgeon, rather than going with a surgeon who has actually traveled to 15 countries just to perform operations on patients that aren't allowed in this country or aren't well enough to travel, etc? and 2) do you think that my surgeon, or any surgeon, would be ok with getting the 2nd opinion from the other guy, then doing the work himself? as always, any input is welcome and I appreciate everything you guys have done.