39 replies to this topic

[Claire!(:]

Advertisement

Hey everyone! Well, I am new to this site and decided that since I haven't been feeling well at all I mine as well post something and hope someone can give me at least a little bit of help. Anyways, I have been having severe lower right abdominal pain for about 3-4 months now. I was sent for a CT Scan with contrast (showed inflammation of the bowel, so you'd assume IBD not IBS right? wrong.) I have learned that IBS does not cause inflammation so I have no idea what that was from :s Before all this I had an abdominal ultrasound and everything was normal (didn't include pelvis) Well, after that I was sent for blood work and stool samples. Well, everything but one thing came back normal. That was thing was about 150 (normal about 120ish). This is high when people have IBD, but my doctor reassured me it was okay considering she saw people with levels of about 800 with IBD. Well, I was then sent for an upper GI Study and lower GI study. These surprisingly came back normal. Time to go back to the doctor. I was still having severe pain, it felt like someone was stabbing me with a knife when I breathed and no one could touch that area. I still today have that severe pain (last night was up til 2 AM with it actually).Well, all my symptoms were lining up for Crohn's Disease. My doctor decided it was time for a colonoscopy and an endoscopy. At 15, these were not things you'd want to hear. Haha. Day of my scope, I was thankfully given general anesthesia. My doctor said that I have an extremely long colon and that there was mucus in my ilium. She asked how long ago I had my upper Gi study (with barium). My mom said about 2 weeks ago, (really 3) the lady then said that it is highly unlikely, but it is possibly that is was left over barium. Turns out that the biopsies were all normal. Weird huh? Well, the day I had my scopes I started feeling 10 times worse than before. That was the day I started having severe diarrhea (sorry to be graphic). Well, I still to this day have it (it has been about 5 weeks.) I am currently taking Bentyl 3 times a day, Nexium 40 MG delayed release capsules one a day (use to be twice, but we switched it to once) and Florastor twice a day. Anyone else ever experience something like this? P.S. I spike a fever almost every night !

[Joseph81]

Hey Claire, did they find anything like gastritis or hiatal hernia?It sounds like you have IBD; did the doctor explain to you whether you have ulcerative colitis or Crohn's disease?Are you taking Bentyl at the same time as Nexium? I am not familiar with Bentyl, but in my experience taking an acid-blocker with other supplements at the same time gave me diarrhea and stomach discomfort.

[Claire!(:]

Hey Joseph81! :DWell, nope, nothing showed up besides mucus in the ilium and the extremely long colon (I was wondering if that could possible be causing the problems.) We thought it was Crohn's Disease, but since the biopsies didn't show it, my GI claims it is just "IBS". I don't believe that. You don't get inflammation and fevers every night with IBS, something I do. We think it may be an infection such as C. Diff, but who knows. I have to wait for the stool test and then the results.:/ Yes, I do take the Bentyl and Nexium together, but the pain started way before I was giving the Bentyl. The Bentyl is an antispasmodic and helps relieve some of the pain.

[celestin]

I think that you should be treated for (actually against!)Giardia. Even if the lab. tests are negative. Treatment : metronidazole +- 1g per day, one week. To be repeated after 10/15 days.

[BQ]

I would go back to the Dr. and if they are unresponsive... get another opinion.

[Claire!(:]

BQ:Believe me, I have been going to her a lot, but being how I am only 15, which makes me a pediatric, I believe the doctors in general are more to pass it off as me just making it up, etc. /: I don't believe it is IBS, but what do I know..At this point, just kinda ready to give up with ever thinking I'll be officially diagnosed with something that makes sense, but who knows.

[celestin]

that there was mucus in my ilium. She asked how long ago I had my upper Gi study (with barium). My mom said about 2 weeks ago, (really 3) the lady then said that it is highly unlikely, but it is possibly that is was left over barium.

it is not unlikely, it is IMPOSSIBLE!

[Claire!(:]

it is not unlikely, it is IMPOSSIBLE!

That's what I thought! o: Well, then what is it? The biopsies came back normal apparently so why the heck is there dang mucus! >.< It's just getting annoying now.

[Kathleen M.]

Mucus is a NON-specific reaction. The colon makes some mucus all the time, every day, in all people. It protects lining and lubricates the stool.Anytime the colon is irritable not just irritated or inflamed, or if the stool is a bit off (too hard, too soft, a bit more bile than it should have, etc) it may add some more mucus to keep it from bothering the lining.You do not need overt inflammation (redness) and bleeding ulcers in the colon to get extra mucus. The colon makes more mucus for any reason at all. IBSers often have noticeable mucus. It is not a symptom that means it has to be something other than IBS.And the prep for a colonoscopy can be a bit irritating so that by itself could be enough to get the intestines making mucus.What kind of temperature are you talking with the fevers? (and it could be something not intestinal at all, but in another part of the body). The body temp does go up and down every day by a fair bit and it higher in the evening then should drop as you fall asleep. So it will be higher in the evening than in the morning when you get up. Do you have fever symptoms (chills, sweats, etc)Also there are lots of reasons for an acute bout of inflammation in the colon, so it doesn't have to be an autoimmune disease. Any bug or even some of the preps to clean out the colon can cause some inflammation. That is why you have to biopsy to see what it is and not just immediately start treating with powerful steroids and other immune-suppressants with dangerous side effects. Gotta check it out and see if it was something that passed on its own before bringing in the heavy artillery.

[celestin]

Turns out that the biopsies were all normal. Weird huh?

1/Not weird 2/good news! Biopsies do not show 'everything'. You could (can) be infected and have normal biopsies (no microbs on the slides and no inflammation). You are 'only' 15 but you are lucid. You will (with the help of doctors and the help of this forum) find the solution...

[Claire!(:]

Mucus is a NON-specific reaction. The colon makes some mucus all the time, every day, in all people. It protects lining and lubricates the stool.Anytime the colon is irritable not just irritated or inflamed, or if the stool is a bit off (too hard, too soft, a bit more bile than it should have, etc) it may add some more mucus to keep it from bothering the lining.You do not need overt inflammation (redness) and bleeding ulcers in the colon to get extra mucus. The colon makes more mucus for any reason at all. IBSers often have noticeable mucus. It is not a symptom that means it has to be something other than IBS.And the prep for a colonoscopy can be a bit irritating so that by itself could be enough to get the intestines making mucus.What kind of temperature are you talking with the fevers? (and it could be something not intestinal at all, but in another part of the body). The body temp does go up and down every day by a fair bit and it higher in the evening then should drop as you fall asleep. So it will be higher in the evening than in the morning when you get up. Do you have fever symptoms (chills, sweats, etc)Also there are lots of reasons for an acute bout of inflammation in the colon, so it doesn't have to be an autoimmune disease. Any bug or even some of the preps to clean out the colon can cause some inflammation. That is why you have to biopsy to see what it is and not just immediately start treating with powerful steroids and other immune-suppressants with dangerous side effects. Gotta check it out and see if it was something that passed on its own before bringing in the heavy artillery.

Well, I KNOW the prep isn't what caused the inflammation, that was there about a month or so before we even considered the coloscopy. My temperature ranges from 99.9-102.3 but for me, my normal is about 96.5-97.0 Also, autoimmune diseases run in my family, but I never stated "I Think I have an autoimmune disease" I was tested for majority of them anyways and that has nothing to do with this. The mucus wasn't normal, the doctor performing the scope told me that after without checking the biopsies, I don't know what the results even ended up being, but my doctor never mentioned them nor my scopes when I last saw her, so I don't know. Mucus may be a common think in the body, but this wasn't. Also, it is in the ilium, I don't believe you are suppose to have mucus there, but I DO know that it is something that happens with Crohn's Disease specifically.

[Claire!(:]

1/Not weird 2/good news! Biopsies do not show 'everything'. You could (can) be infected and have normal biopsies (no microbs on the slides and no inflammation). You are 'only' 15 but you are lucid. You will (with the help of doctors and the help of this forum) find the solution...

Hello, Well, I was thinking that the biopsies could be wrong but no one wants to believe what I say. I still have the inflammation so I don't get why they just keep putting it off as nothing. Hopefully, we will figure this out soon, but I highly doubt it.

[Kathleen M.]

Sorry I tried to say that mucus is not exclusive to Chron's and no other possible reason for it and the whole gut produces mucus to protect itself so it probably didn't come from any other body part. Some mucus normal in everyone all the time, but if there was excess it doesn't mean it cannot possibly be IBS and you much have Crohn's as there can't be any other explanation. A lot of people with IBS have a lot of excess mucus and some of the old names for IBS had mucus in them.You had to have a prep for the scope to be in the ileum to see it, and the prep is irritating. IBS by itself can cause copious mucus all by itself as it not just Crohn's (although it is ONE thing that can cause it) and any irritation or irritability can cause it. http://www.netdoctor...itablecolon.htm lists the names and as you can see I'm not making it up that IBS could possibly cause mucus and once had mucus in the name. That name was replaced as it isn't really accurate, but mucus wouldn't be in the name if it was completely and totally impossible for there to be excess mucus with IBS. :)The biospies are a much clearer indication of what is going on than whether or not they saw mucus, and you did have a prep then.Inflammation seen earlier also does not have to be Crohn's disease as any sort of infection or irritation can cause it, not just autoimmune. That is why they didn't diagnose an autoimmune disease right then and there and waited for the biopsies. I don't know where I said you diagnosed yourself with something autoimmune, but with the family history and what you have going on, it certainly is a reasonable concern.Sorry I tried to suggest that maybe the fevers (since you are talking fever range and we have people here who call everything over 98.6 a fever even if they aren't and I'm sorry I am an awful person for asking you to tell me what you meant by fever) could be from some other issue in your body and that may need to be evaluated and not just assumed to be in the intestines. If it were me I'd make sure they checked out any other thing it could be since Crohn's was ruled out. I'm sorry if I ever made it sound like there could possibly be a different autoimmune issue or any other kind of issue that I, personally, feel that might need to be looked for.If there is anything else I need to apologize for that I missed, I am sorry for all of it.It does sound like something is going on and since this didn't pan out I would make sure the doctors move on to anything else that could be causing it, but that is me. If you need to believe it is Crohn's and nothing else, that is fine by me, but I would push for more evaluations, but like I said that is just me and you don't have to listen to me at all.

[Claire!(:]

I think that you should be treated for (actually against!)Giardia. Even if the lab. tests are negative. Treatment : metronidazole +- 1g per day, one week. To be repeated after 10/15 days.

What's Giardia? I will talk to my doctor about it though. Thanks (:

[Claire!(:]

Sorry I tried to say that mucus is not exclusive to Chron's and no other possible reason for it and the whole gut produces mucus to protect itself so it probably didn't come from any other body part. Some mucus normal in everyone all the time, but if there was excess it doesn't mean it cannot possibly be IBS and you much have Crohn's as there can't be any other explanation. A lot of people with IBS have a lot of excess mucus and some of the old names for IBS had mucus in them.You had to have a prep for the scope to be in the ileum to see it, and the prep is irritating. IBS by itself can cause copious mucus all by itself as it not just Crohn's (although it is ONE thing that can cause it) and any irritation or irritability can cause it. http://www.netdoctor...itablecolon.htm lists the names and as you can see I'm not making it up that IBS could possibly cause mucus and once had mucus in the name. That name was replaced as it isn't really accurate, but mucus wouldn't be in the name if it was completely and totally impossible for there to be excess mucus with IBS. :)The biospies are a much clearer indication of what is going on than whether or not they saw mucus, and you did have a prep then.Inflammation seen earlier also does not have to be Crohn's disease as any sort of infection or irritation can cause it, not just autoimmune. That is why they didn't diagnose an autoimmune disease right then and there and waited for the biopsies. I don't know where I said you diagnosed yourself with something autoimmune, but with the family history and what you have going on, it certainly is a reasonable concern.Sorry I tried to suggest that maybe the fevers (since you are talking fever range and we have people here who call everything over 98.6 a fever even if they aren't and I'm sorry I am an awful person for asking you to tell me what you meant by fever) could be from some other issue in your body and that may need to be evaluated and not just assumed to be in the intestines. If it were me I'd make sure they checked out any other thing it could be since Crohn's was ruled out. I'm sorry if I ever made it sound like there could possibly be a different autoimmune issue or any other kind of issue that I, personally, feel that might need to be looked for.If there is anything else I need to apologize for that I missed, I am sorry for all of it.It does sound like something is going on and since this didn't pan out I would make sure the doctors move on to anything else that could be causing it, but that is me. If you need to believe it is Crohn's and nothing else, that is fine by me, but I would push for more evaluations, but like I said that is just me and you don't have to listen to me at all.

Hi again,Well, my doctor thought it was Crohn's as well. The symptoms line up perfectly. It made perfectly sense. I can tell you the mucus wasn't normal. The head of GI was the one who did my scopes and assured us it wasn't normal. You didn't see it so I don't think you can really comment on if it is normal.

[Kathleen M.]

I did not say it was normal. I BELIEVE your doctor even if I don't agree that the one and only possible reason must be Crohn's disease.That was not at all what I was trying to say (although the that the intestines make mucus is one of the things they do).Mucus CAN be a symptom of IBS. IBS is NOT NORMAL.The biopsies are the most definitive way to figure out if the NOT NORMAL amount of mucus is Crohns or IBS. Mucus is a non-specific response. It says SOMETHING is going on but it can be anything, not just one thing. The colon makes EXCESS NOT NORMAL mucus (rather than the normal amount of mucus) when anything bothers it.I'm sorry that I can't seem to say what I mean in a way you can understand I am AGREEING with you and your doctor in that it is NOT normal.just that there are other NOT NORMAL reasons for more mucus than should be there.I think I should stop trying to explain, it obviously isn't helpful and you will probably accuse me again of saying that abnormal mucus is normal. Normal mucus is normal. Abnormal mucus is from anything that bothers the colon so is seen in IBS, Infections, food intolerances and anything else that causes the colon to go something NOT NORMAL is going on.I cannot possibly say this any more clearly, and I'm sure it will be misinterpreted again.

[Claire!(:]

I did not say it was normal. I BELIEVE your doctor even if I don't agree that the one and only possible reason must be Crohn's disease.That was not at all what I was trying to say (although the that the intestines make mucus is one of the things they do).Mucus CAN be a symptom of IBS. IBS is NOT NORMAL.The biopsies are the most definitive way to figure out if the NOT NORMAL amount of mucus is Crohns or IBS. I'm sorry that I can't seem to say what I mean in a way you can understand I am AGREEING with you and your doctor in that it is NOT normal.just that there are other NOT NORMAL reasons for more mucus than should be there.I think I should stop trying to explain, it obviously isn't helpful.

It is not normal on a different level then IBS, IBS doesn't create damage such as inflammation, something that is STILL there, 5 months later! If someone touches my stomach they can feel my colon. That is abnormal.

[Kathleen M.]

IBS is abnormal. Believe me all the things you complain about are the abnormal things at least some IBSers have had as well. Excessive mucus is seen in IBS. Pain is seen in IBS. And you can feel the colon in people (which is why doctors feel the colon by pushing on the stomach) and it can feel different in IBSers than in normal people.IBSers are NOT normal, so they do have symptoms, and pretty much all the symptoms of Chron's other than bloody diarrhea, fevers, and weight loss all out of proportion to what they eat.I'm not saying Nothing is going on. Just it could be IBS as well as whatever is causing the fevers and you've had the gold standard test so I can't tell you to get a colonoscopy that gets to the ileum and have biopsies of the ileum as they did that. There isn't some other thing for them to do to prove to the doctors you have Crohns and not IBS.

[Claire!(:]

IBS is abnormal. Believe me all the things you complain about are the abnormal things at least some IBSers have had as well. Excessive mucus is seen in IBS. Pain is seen in IBS. And you can feel the colon in people (which is why doctors feel the colon by pushing on the stomach) and it can feel different in IBSers than in normal people.IBSers are NOT normal, so they do have symptoms, and pretty much all the symptoms of Chron's other than bloody diarrhea, fevers, and weight loss all out of proportion to what they eat.I'm not saying Nothing is going on. Just it could be IBS as well as whatever is causing the fevers and you've had the gold standard test so I can't tell you to get a colonoscopy that gets to the ileum and have biopsies of the ileum as they did that. There isn't some other thing for them to do to prove to the doctors you have Crohns and not IBS.

Dude can you just leave? Thanks. My colon is inflamed if you touch my stomach the slightest bit you can feel it very easily and feel it is swollen. My symptoms AREN'T the IBS symptoms, I do have fevers, I do have weight loss, I HAVE had bloody diarrhea. You don't know my medical workup, so please, just go. Thank you.

[Kathleen M.]

Just a reminder that IBS can be very severe, so even if it is "just" IBS it can be something you need to find a doctor who will treat you, and that isn't always easy. Good luck with finding out what the fevers are. Your description of your stomach sounds like mine when the IBS pain was so bad I couldn't walk across a room without dropping to the floor in pain and that was "just" IBS. I only had fevers for awhile, which was probably just the infection that started it off, but mine went away.Can't know what symptoms you have when you didn't say much beyond the IBS ones, and I don't assume people have symptoms of other things unless they disclose them. Sorry the biopsies didn't give you the answer you wanted, I am putting you on ignore so I'll remember to never try to help you ever again. Hope they figure out what is going on and you are feeling better soon.