Well, here I have finally been diagnosed. The GI said I have Inflammatory Bowel Disease, just not sure if it's ulcerative colitis or crohn's disease. My small bowel series showed an area where the contrast clumped in the area of my cecum/ileum & my colonoscopy back in October (done by a general surgeon, not a gastro, and they didn't go to the ileum or take biopsies of the cecum or ileum) showed ulcers, active colitis, mostly in the rectum/sigmoid colon with "crypt distortion" & inflammation in all biopsies. (The EGD showed mild chronic gastritis.) The gastro wants to do another colonoscopy to do a biopsy of the ileum to find out if it's CD or UC. I don't want to do it again, but want the best treatment & want to know what disease I have.

I would love any suggestions on how to deal with this pain. Sometimes I feel so much pressure in my pelvis, it is horrible. I am keeping myself busy working my butt off because my husband is laid off, but I am finding myself more & more exhausted. I am afraid my gastro will want to up my prednisone, I am so scared of the side effects... I am also worried that my colonoscopy won't show anything because the prednisone will clear it all up by the time I go in for it (May 1).

I am still trying to understand why I have this disease & what it means to the rest of my life. I am now currently on prednisone & azulfidine. I still am having pain in my lower abd./hips/low back/pelvic area, that everyone seems to think is due to my IBD. I have been on prednisone for 11 days & still have this pain.....

Hey there, so sorry to hear about your discomfort. But I am happy for you that you are leading in the right direction of a diagnosis. In fact, I am a bit jealous of you. I have been dealing with abdominal pain and a whole mess of other symptoms for 8 months now, and it is really starting to drive me crazy. I feel as though I have been a lab rat with no results. I have gotten a colonoscopy and endoscopy (none of which showed any abnormalities). I have had my blood taken (and this did not show inflammation)... however, my doctor thinks it is still a possibility that I could have chron's in more of the middle of my intestines (the part that he couldn't see with the colonoscopy and endoscopy) and as a result I am now scheduled for an ultrasound (to rule out the gallbladder) and a small bowel series (of drinking barium, icky). Anyways I feel like there is no point anymore, I'm sick of doctors and tests. A diagnosis would be sooo welcomed right about now. I was wondering if I could ask you for some advice as well... if you wouldn't mind sharing, what are your symptoms, and also what tests did you endure to come to a (partial) diagnosis. I feel there are no real suggestions I can give to you in regards to feeling better and relieving the pain, as I am very unsure myself. Hope you feel better though!! Hang in there!

Hi. I am sorry you are having pain too. I understand how frustrating it is.

To let you know what road I went down, I had a small bowel follow through that showed an issue in the ileum/cecum area. I also had a colonoscopy & had inflammation in my colon. Yes, you can have Crohn's & not have it in your colon, but just in your small bowel.

Getting my dx only happened after seeing a gastroenterologist. You need to get a referral to one right away. She looked at my colonoscopy info & also looked at my symptoms & told me right away that I for sure had IBD. There was no question for her.

Did you lose weight? Have you had blood in your stool?

When getting this an IBD dx, you will have these tests that will show SOMETHING:
• Metabolic panel (dehydration & low potassium is what I have had. I was not anemic though, but sometimes it shows that...)
• SED rate (mine was still normal)
• CBC (I had a high WBC, which the GI said is normal with IBD.)
• Small bowel follow through (showed a problem in the cecum/ileum area)
• Colonoscopy (Showed ulcers & inflammation in my colon. Nothing specific for ulcerative colitis or crohn's disease. The problem is I went to surgeon for the colonoscopy instead of a GI & he didn't even look at my cecum or ileum & didn't do a biopsy in that area, so I have to have ANOTHER colonoscopy at the end of this month!!)
• Hemoccult test (Mine was positive. Then I started noticing the blood in my stool, I haven't had it lately though.)

As of late, I have had a bulge in my belly every once in a while, where I am sure my stool is getting caught in the inflammation. I am currently on prednisone, azulfidine & liquid vicodin (The norco pills I was taking weren't digesting, they were coming out hole. I was having problems digesting lots of foods.). I have had dizzy spells & migraines (this is new, never had migraines before).

My current pain (I STILL have abd. pain, too.) is in my hips/pelvis/low back area. No one helps me with this. It is the worst. I don't know if it's due to the IBD or not, and my doctors aren't giving me any info or sending me on for any more tests. It's frustrating. I don't know what else to do.

So, even though I have a dx, my dilema isn't over.... I don't know where to go or what to do about my new pain & no one seems to care. So I guess I am just stuck masking it with pain meds....

I hope all is better for you soon. Let me know if you had any of these tests & what results you had....

Hey there! Thanks so much for the speedy reply, I REALLY APPRECIATE IT! Sorry to hear of all you have had to go through, I can relate to you in terms of getting soo annoyed with the endless tests and endless unanswered questions. As far as the migraines and dizziness... I certainly have those as well, however, sometimes I like to chalk those up to possibly being in so much discomfort. As far as additional symptoms I have mixes of diarrhea and constipation, headaches, chills then periods of sweating, I wake in the night sweating, abdominal swelling and discomfort, back pain, pain under my right rib cage(although this is once and a while, not constant), and a whole mess more that I am sure I missing right now. What is your abdominal pain like? Mine is more a cramping or almost gnawing feeling, however when under the rib cage it is a stabbing pain (making it difficult to breath at times). Went I went to the Dr. I had originally thought I had an ulcer, however, he did some bloodwork and thought I needed to be referred to a gastroentologist. Upon meeting him, he did a colonoscopy and endoscopy all were clear. While I was still asleep from the anestetic, the Dr. told my mom he felt that since he couldn't find anything it was most likely IBS and lactose intolerance, gave me some pills to try and sent me on my way. Well needless to say these meds did not change any of my symptoms. My mom, being in the medical profession, explained to me how often many times doctors write symptoms off as IBS in hopes to move on with the case. I went back in for my follow-up last week, Dr. was surprised that the meds weren't helping for IBS and also the fact that the pain was not just after eating, but sometimes occurred 7-8 hours after digesting anything, and was often present when I woke, and then decided the pain most likely wasn't associated IBS. He told me that it was possible to have Chron's disease in the portion of the intestine that can not be seen via a colonoscopy or endoscopy. (Please forgive me if I am repeating information I have already shared with you, can't recall... and easier to just retype that to skim over again and check). Anyways... since he thought the lower right rib pain sounded like gallbladder issues, he decided to book me for an abdominal ultrasound and for me to have blood work done to check my CBC. My CBC results came into today and everything looked fine, however, my mom informed me that often times CBC will be normal even though there is a problem going on. Anyways, in two weeks I will have my ultrasound. When that comes back normal, as I am sure it will (everything seems to come back NEGATIVE. And don't get me wrong of course I am pleased, but at the same time a small part of me wants a POSITIVE diagnosis, I just want some guidance... I'm starting to doubt myself and wondering if this is all in the head... even though I am not that kind of person, I have always been very healthy and active... I even try to deny colds because I don't want them slowing me down). Anyways... after the ultrasound my Dr. said he wants to run a small bowel series (drinking the barium). Any idea how effective these are? And as a last resort Dr. said that he wants to do a capsule endoscopy. .... Also I found interesting today, it mentioned on a previous board how haaving taken Accutane in the past... how now shown to lead to some cases of Inflammatory Bowel Disease (have you heard this)? To answer your question... yes, I have had blood in my stool but this was only for a cpl of days and then it ceased. Days following I had lots of mucus in with my stool. Upon telling this to my Dr. he told me to get on Miralax to help regulate my bowels (as I have been having diarrhea and constipation). After being on this for a few days, I have 5-6 bowel movements a day all diarrhea still.

Anyways... I am sorry this is so lenghthy... but I really appreciate your advice and story. It's nice to know someone else understands some of the discomfort that you do.

Lastly, I was wondering... your abdominal pain, is it more of a terrible pain you can't move... or more of a discomforting pain? Like a bad stomachache, yet you are still able to function.

As far as the other tests you asked about I do not believe I have had any of those. In truth I feel as though my Dr. is trying hard to write this off, and is not very vocal about what he feels this may be. I understand, he may not be the best people person but I am strongly hoping he has the appropriate knowledge. He comes recommended, and I would love for him to be able to dx me. Otherwise, my mom said is pursaying me to give it two more months, and then without a dx to come to her place of employment (Mayo Clinic) and get checked out. (my fear is having to start all over again with all my tests)...


Thanks in advance for your support! Much appreciated! And wishing you relief!!! :)

Please listen, you need to be on a diet. Did you doctor give you a diet to follow? If this is IBD, you will notice a change when you start this diet. Look up low residue, low fiber diet. No raw fruits & veggies, no nuts, no seeds. I call it the mush diet. But it does work. It has lessened my frequent BMs. I now have between 2-4. ; ) (May also be the prednisone & the fact that I am on more pain meds than before....) The diet sucks, but the difference is there. If you have CD, you will notice this diet helps at least a little.

The small bowel series (follow through) sucks. But it showed a lot in my case. FINALLY backed up what the GI said that I for sure had IBD. Finally. What they do is make you drink this NASTY stuff & then they take an xray, then another, then when the contrast gets to your large intestine, they take this paddle & do flouroscopy on your small bowel. I had an area where the small intestine meets the large intestine (the cecum & ileum) & the contrast puddled there & stopped. It moved REALLY fast & got all the way down to that area in 10-15 minutes, but then just sat there for an hour. I was already having BMs during the x-ray. I knew right then by the look on the radiologist's face that I had a problem. He couldn't tell me for sure though it if is CD or UC, because he couldn't tell if the problem was in the cecum (large=UC) or ileum (small=CD). Let me warn you, you are going to feel crampy & sick.

I get lots of pains, and to tell you the truth, I don't know if there is more than one thing going on or what. I get pelvic pain in my groin area. I get hip/SI/low back pain. I get this feeling of pressure in my lower abd. I get cramps from time to time. No upper right pain. I have had a problem with my left rib in my back, but that is due to what seems to be a rib out of joint partway. The left rib pain is stabbing & burning & there all the time. The hip/SI/Low back pain is a ridiculous ache that is just hard to handle. It's the worst for me. It comes on after long times of sitting & seems to get better when I stretch & move. Other times I just get random abd pains that are mostly discomfort. A lot of bloating & cramps from time to time, depending on what I eat. (Another hint, keep a food diary of what irritates you, what makes your pains worse or makes your D worse...)

Here's the thing when it comes to doctors... your doctor may be a very good doctor, but crohn's disease is not something regular doctors are used to dealing with. You NEED to see a GI. Period. If you even think you have CD, find a GI.

My other advice? Get ALL your medical records. Everything. All your tests. Sometimes doctors don't think low electrolytes or something is that big of a deal, but it could really mean something for you. YOU are going to have to be your own advocate & research your reports. Here's the thing, the surgeon who did my colonoscopy told me that I would be better in a month of taking the azulfidine. What he really thought was he HOPED I would be better (that's what he told my PCP). I think he thought if he told me that, that I wouldn't feel better at all & I had a better chance if I thought I would be better. The only problem was my brother was dying of cancer at the time, so things in my life were really crazy & I was really really sick for a while & didn't push it because the surgeon told me I would be better when the pills were done. So I suffered wondering. When if I had gotten a copy of his report, I would have seen that I did not have a curable colitis at all, he didn't say IBD, but he did mention lymphocytic colitis, which is another rarer form of IBD (but I am pretty sure it's CD). He didn't think I needed a small bowel series because I had had a CT scan like 4 months earlier that didn't say anything about my bowels. But as soon as I went to the GI she ordered the small bowel series that confirmed what she thought I had, IBD.

I would take your mom up on the Mayo clinic if you don't get anywhere with the small bowel series.

BTW, my mom just had her gallbladder out. She was beginning to have a lot of D with it. So, it could be your problem. Upper right pain, cramping, diarrhea.... Have you had a hida scan? I would think you would need that more than an ultrasound. My mom only had thickening of her gallbladder, no stones. But it was for sure causing problems! She feels so much better now that it is out!

I don't have diarrhea much. It's much softer or I go sometimes a zillion times a day it seems (but not lately, lately, I am going much less). I only had actual diarrhea for a week or so in January when I was getting dehydrated. I go much more frequently since I have been sick than I used to, I used to be constipated all the time & only go two times a WEEK. That's why my docs weren't too rushed to dx IBD... But the GI said that's still a big change in my BMs.

I wish you relief, too! And at least a DX!

Hi Hukleberrie,
Again thanks so much for the lengthy response and for listening to all my venting. In regards to the diet... no my Dr. has not placed me on one. I believe this is due to him not wanting to alter anything before I have my tests taken. And yes, I have kept a food diary (this was done around the time that they felt my symptoms could be caused by Celiac Disease--however, this bloodwork and biopsy came back negative). That is so interested with what happened during your GI series, I'm sure you were somewhat relieved, yet somewhat scared at the same time. I am sorry to hear about your extra pain in the pelvic and back area... that sounds a bit different than mine (however, I do know that IBD can present itself in many different formats). Our back pain does sound somewhat similar being in the lower back, and also with the fact that it gets worse upon being sedentary and then is somewhat relieved with stretching/moving.

Sorry, if I didn't describe it clearly in my last post... but I am in fact seeing GI doctor. After my GP couldn't find anything due to my bloodwork, he referred me to the GI. The GI was responsible for doing my colonoscopy, endoscopy, CBC check, and now the soon to be ultrasound and possible bowel series. I have not had a HIDA scan, however, the more I am reading I feel as though I should suggest that to my GI if the ultrasound comes back negative. Possibly to have the HIDA done before my small bowel series.

I agree with you saying to get my medical records, I guess I am sooo busy that part of me doesn't want to take the time to go through all of that, but then again how silly does that sound... you can never be too busy for your health.

Please, please, please let me say... how very sorry I am to hear about your brother. I'm sure that was a VERY stressful time for you, and I can't even imagine how hard that must of been. My heart goes out to you.

As far as your mom, I am so glad to hear that she is doing better now that she has had her gallbladder removed. The lower right rib cage pain is what my Dr. felt could be attributed to gallbladder issues, however... when they did my CBC count, it showed no inflammation in my blood (so I am not exactly sure if that means I could still have gallbladder issues, I suppose I do not know too much about the gallbladder). I have also read that often times IBD (specifically Chron's) can correlate to gallbladder issues... so certainly hoping it is not both.

Just like you I had constipation for a while, few weeks, and it was really bad... compared to what is normal for me. When I called my Dr. with this news and if I could take laxatives (as I was just soon to have a colonoscopy and didn't want to screw anything up), he responded with... just don't eat cheese. Wow! Thanks... I figured that one out, however that will not give me the relief from the constipation! Haha. Anyways... After the colonoscopy my constipation seemed to approve greatly ( I feel as this was somewhat attributed to clearing me out during the prep for the procedure). My bowels afterward were mixed with diarrhea and moments of constipation... this is why my Dr. has put me on Miralax. But like I said, ever since taking this... I have diarrhea 6-7 times a day. Kind of a annoying to say the least.

I really hope that you feel better soon :)!
Thanks so much for all the kind words and suggestions!

Amber

I still think you should follow the diet. You could be causing yourself more pain than anything... If you have inflammation, the small bowel will show it. I would still try the diet.

I had celiac test done, too. Negative as well.

I would try to get the tests done all together right away, instead of one test, then waiting then another test, then waiting.... See if you could hurry up the 2 tests & have them done right away. Then do the HIDA if nothing shows up on the ultrasound & small bowel series.

It's hard to find a good GI. I really like mine but she is soooo busy, when I call it takes like a week to hear back from her.

My mom did NOT have inflammation showing in her blood either when she had gallbladder problems. They did tests for a bunch of stuff for months before they took hers out.

Have you had a CT scan? Just wondering.... They had said my brother had gallbladder problems, but it ended up being pancreatic cancer. I wish he had had that CT scan way earlier...

I go back & forth, soft, constipation, soft constipation. I take a stool softener when I have problems. That helps a lot. I haven't done miralax yet. My GI said if I get constipated, take stool softeners or milk of magnesia or miralax. I wouldn't take miralax every day if you are going 6-7 times a day. Certainly not! Try a stool softener where you can take that whenever you feel the constipation coming on instead of every day....

Hey there-
Yea, I wish that my Dr. would just do all the tests, instead of sending me away... coming back, over and over again. Ecspecially where I go back to my home Dr. and I go to school an hour + away, and the drive can get exhausting when doing it every weekend. However, I am not sure if my insurance will budge on that. Usually they want one test done before the next, in order to to pay. That is good advice though and I will certainly be calling my Dr.'s office this afternoon in regards to scheduling my small bowel series later that same day as my ultrasound.

To answer your question about the CT, no I have not had this. My Dr. did not even mention it in the line of tests that he wants to do. I feel as though after talking to you I should question him about the CT scan and the HIDA test... however, and I know this sounds immature... but it is almost as if I am afraid to. I feel as though when I go in there for test after test and they find nothing that he is beginning to think I am making it up. Trust me I am far from making it up! Infact... this past night I woke during my sleep with such bad stomach pains... and when I woke and looked at my legs I realized I had small bruises on my both shins as well... don't know what the hell that is, but I almost feel as though I am falling apart. I don't feel I need to prove myself to the Dr. but I wish he would be more on the same page as me.

As far as the Miralax, I was also questioning whether I should take it everyday or not considering the fact that even on the container it says do not exceed 7 days of use. And not to mention my frequent bowel movements. Anyways... I called my Dr.'s nurse with this, and she said that I should stay on Miralax anyways... she said the 7 days is irrelevant and that the multiple bowel movements is not a problem. So who knows?!

That is interesting about your mom, I suppose I thought one had to have inflammation in their blood for their to be a gallbladder issue, but apparently not. However, I fear even if I did have gallbladder issues the ultrasound would not pick up on this, and I would have to push for the HIDA.

Anyways... enough about me, how have you been feeling lately?! When is your next Dr. appt? And what exactly are they doing to decide between UC and CD?

I understand with regards to the insurance issue. I don't have insurance at all, so I know how it can affect your treatment. I think that's why it took me so long to get my dx.

I am being ignored currently by my doctors. Waiting for calls back about my hip pain problem. No word yet, left messages last week. My next thing is the colonoscopy at the end of this month to hopefully have my CD or UC answer.

It seems my current problem is a hormone issue causing crazy periods (long periods, breakthrough bleeding). My thyroid tests have came back in normal range, but on the edge, which when posting on the thyroid board, I found out is not normal at all. So even though my doctor says it's fine, I need to see an endocronologist. Only problem is, as I am sure you have found out, my doctor is either tired of me or thinking I am crazy or just not sure what to do with me. I really like her, so I can't believe that she would ignore me, but I dont know what to do at this point. I had surgery to correct the bleeding but the gyno specialist said there is absolutely nothing wrong with my girlie parts, so surgery for nothing! So I am trying to figure out how to get my doctor to send me on to figure this thing out....

I also (since this all began) have had this constant ear problem, muffled feeling, fluid in there.... fluid in mastoid sinus. I have bugged her about sending me on to an ENT but have not heard back either. Ugh. I am ready to have SOME relief somewhere. I just figure if I could get relief from this, maybe I would feel a little better...

I understand what you mean about thinking they think you are making it all up.... But you know you aren't, so be proactive & make sure if nothing shows on the ultrasound & small bowel series, that you request the HIDA scan & CT. Okay?

Wow! I am sooo sorry to hear about that. You must be sooo aggravated. Surgery for nothing?! Well let's hope it fixed something, even if we can't see it now. I am crossing my fingers for you that it's not your Dr. just annoying you. I know what you mean with the whole thing... and I am hoping that they are just busy and really that they aren't that inconsiderate. Perhaps if your Gyno isn't returning your calls, could you go through your GP to have you referred to someone to figure out further with the hormone issue? Perhaps your GP could get back to you sooner than your Gyno seems to be.

The ear thing? I don't even know what to say about that. I have done a lot of reading about IBD and I don't remember seeing how that is one of the symptoms, but I am sure it is different from everybody! And perhaps somebody that is actually dealing with IBD could correct me if I am wrong on that one. However, my hopes for you would be that when they do the colonoscopy and they figure out whether you have CD or UC, that they could then get you on the meds that are needed, and perhaps that would solve a lot more than just the stomach pains and such? I know it may seem out there, but a lot of times a certain symptom can be tied to another. What if the meds helped with your pelvis, stomach pains, hip, ears, and the bleeding all at once! I suppose one never knows, but I am sure hoping they all tie together.

I took your advice and I called my Dr.'s nurse today about having the small bowel series on the same day as my ultrasound (to try to get moving along faster). The nurse informed me that she would have to get the Dr.'s consent to put in the order for this, however, she doesn't seem to think he would have a problem with this notion. The problem is this... my Dr. appears to be out of town on a family emergency and isn't checking his messages. (which I can understand, can't blame him there). So... I don't know if they will get it ordered in time, and book me in enough time before it fills up for the day of my ultrasound. Kinda stuck there.

I will most certainly be pushing for the CT scan and HIDA, if the ultrasound and small bowel series show up inconclusive.

The end of the month! That is kind of a long wait for your colonoscopy, but I suppose fairly typical. I hope you some relief REAL soon! Have you considered asking your doctor for a cortisone injection for the pain in the meantime?

The GP (my PCP) is the one that I feel like is ignoring me.... Maybe it's just me.... I don't know... The gyno is done with me, he's the one that did my surgery (diagnostic laproscopy on a 10 cm septated cyst that had already burst I guess, & a hysteroscopy D&C). He had no info on my constant period. I am hoping my PCP is just waiting to get the report from the gyno before investigating further. I have a feeling it is the thryoid/hormone issue causing it.... My GP (PCP) gets back to me fairly quickly normally, but I think she just doesn't know what to say or do. I faxed her a big letter with my complaints & questions because it is SO much easier than the phone tag thing. But I faxed it Friday & haven't heard back. She's closed on Wed. so I know I won't hear back from her then. I feel like she is ignoring me, but maybe not.

I don't think the ear is related. But maybe. Maybe related to my thyroid/pituitary problem if I do have one. Or maybe just sinus problem. Who knows. But if I could get it fixed where it doesn't sound like I am underwater all the time, it might make me feel better. I wonder if it will help these migraines as well. I only started getting them in January.

I truly think that once your body is out of whack, the rest of it is off as well & then it 's easy for something to go wrong. I think there is a delicate balance in our bodies & once there is something not right, the balance shifts & other things go wrong. This all started with a severe kidney infection, and I don't know if that was the start or if I had CD before & it caused the kidney infection or what. But I do think even if things aren't "related", they are at least in balance with each other....

It's so funny, after I posted earlier, I get a call from the GI. They changed my colonoscopy on Thursday. So 2 days and then I have it. Maybe I will have more insight afterwards....

Oh wow well that is good news! Always nice to speed something up and hopefully get results sooner! I'm really hoping for you that this colonscopy will seem to clear so much that you are going through. It's my opinion that you may want to put another call into your GP sometime soon, you are the patient, and responding to you is her job. Make sure you don't wait around forever for her. Perfect example, my GP told me he would call me the minute my celiac test results came in which he expected to be on a Wednesday, I waited, and by Friday I finally called and asked why I hadn't received a call. He said that somehow my chart got thrown under another chart and that otherwise he would have called me sooner!!! Bottom line... never hurts to call!


I will be very curious to know when you receive some answers about your thyroid, ears, and so forth if they are all connected somehow. Please keep informed! And if I don't talk to you beforehand, BEST OF LUCK on Thursday!!! Hopefully you will walk away with many answers!

Hey there Hukleberrie-
One more day until your colonoscopy! Hopefully soon you will have the needed answers!

I have one quick question for you... Do you ever experience sounds coming from your abdomin area... they could sound like hunger noises although they are they after I eat, when eating, before eating, when I wake up, etc. It is as though I can almost hear liquid just swishing around in there at times as well.... I am not starving or anything but there often tends to be noises. It's as if you were to put an ear to my stomach you could hear an ocean roaring. Ha, I know that sounds like a silly statement. But just wondering if you or anyone else have ever experienced this... while of course going through the other symptoms? I didn't seem to find that this was a symptom of IBD, but I was just curious.

THANKS! and warm wishes!

Oh, YES! Lots of sounds. Constantly. Yes, I believe it is a symptom of IBD. Constant gurgling, is what I call it.

Oh wow really. Yea, gurgling is the perfect word. I just got back from class, and I swear others could almost hear it at times, it's just constant!

1 day for you! What is your prep like for your colonoscopy? Go-lightly stuff, or laxatives and 2 cups of a salty type of water?

This time it's different prep. Magnesium citrate & Go-lightly. I had a different prep last time. I also had to do 2 enemas an hour before last time. It will be nice not to have to do that.

I started bleeding again today. It's very, very light, but annoying none the less... : ( Not supposed to have a period until 2 weeks after the D&C & it's only been a week. I definitely have something going on. I want my hormones tested asap.

So, to answer that last question, I have gurgling all the time, & yes I understand that it IS a symptom of IBD. It's just not something that is listed by the doctors, but every person you talk to with crohn's talkes about the noises. And there isn't anything you can do about it either, that I know of. It doesn't bug me too much, just annoying. Some people are really embarrassed by it. I have more of a problem with the frequency issue & trying to hide my discomfort than a little noisy belly. My husband laughs at night when we are watching TV & he hears it.

Hey there-
Thanks for the reply again on the gurgling noises. I'd take them all day, any day, if it meant just finally getting some relief with a diagnosis. As far as your prep, I'm glad it won't be as bad as your last one, and I wish the best of results. I'm soo sorry to hear about the bleeding that began again today... that is so strange, and your hormones really must be outta whack. I'm still praying for you that somehow what they will find tomorrow in the colonoscopy will be correlated to the bleeding, pelvic pain, ear issues and more... I just feel it's too much at once to not be connected somehow. Please let me know how it goes for you tomorrow, I will be thinking of you and wishing you the best.
Cheers to answers! And best of luck!

My scope was normal, but she took a bunch of really deep biopsies, and hopes something will show up that way. She said if not, we will do the blood test.

So I don't know much now. I am waiting till Thursday or Friday when I can call for the results.

Hey there Hukleberrie!
I was wondering how it went for you...Glad to see you are back though. Are you happy nothing showed up or bummed? I can see how that could go either way... you don't want there to be anything bad, but at the same time you want answers. That is unusual that your scope was normal after you had that suspicious small bowel series, however, that could mean you could still have Chrons in your small intestine... correct? Due to the fact that the colonoscopy can not show anything in the small intestine... strictly the large intestine. Did she take the biopsies from the small intestine? Or colon?

I guess she got to get biopsies from everywhere, including the ileum, from what I understand, so it should provide some info. This is from the small bowel series "There is a clumping of constrast in the region of the cecum. I suspect this is within the cecum. It is potentially within some small bowel loops in the right lower quadrant overlying the cecum. I suspect this is related to inflammatory bowel disease, and other etiologies are not entirely excluded either."

So, I don't know what to think. I assume that since it also says it ccould be within the small bowel loops in the right lower quadrant overlying the cecum, that it still could be crohn's. I guess I just have to wait & see how the biopsies come out, but to be honest, since she was so surprised how normal it looked, I am not expecting much to come out of the biopsies. We'll see. If not, she wants to do the promethsius lab test. (That is another option for you as well, although it is not 100% accurate. 88%, I think is what she said.)

I do want answers, but after living with this IBD for just 2 months, I will be super happy if I don't have it! But answers & feeling better would be great...
:confused::confused::confused::confused: :confused::confused::confused:

Aw sooo sorry hukleberrie!
That has to be soo hard to go in looking for answers and be turned away yet again with none. I go back in Friday for my abdominal ultrasound, and ever since you gave me the advice on pushing for the small bowel series later that same day, I have that now on Friday as well. I am going in hoping to walk out with answers, but like you I am sure I will not. How did they take biopsies of the small intestine? Was this during the colonoscopy as well? Could they see that far up? I don't know what to think anymore, as I'm sure you don't either. We don't want it to be an IBD, but we want answers. You find out Thursday or Friday I believe correct? How have you been feeling lately? What have your symptoms been like? Oh and also... how has your bleeding been and the ears? Any better in either one of those departments?

Well, I feel at least the GI is looking for answers for me. I feel she is in my court & knows something is not right. We will just have to wait to see how this plays out.

You probably will not walk out with answers after your tests, because you will have to wait for the results as well. Give yourself until the end of next week before you will know more, then you will be excited if you get answers before then.

Yes, during the colonoscopy, if they get to the ileum (that is the last part of the small intestine) and take biopsies, then they took biopsies of the small intestine. Of course, they can't get to the whole small intestine, just that last part. So if they took biopsies of your ileum, then they did biopsies of your small intestine during your colonoscopy as well. I hope that explains a little bit.

I stopped spotting. So I haven't pursued calling the gyno back about it (my pcp said to call him). I am waiting to see what happens after I have my period. So I am waiting, waiting, waiting, for that too....

My ear is still the same....

I am having mucus, bloating after eating, 2-6 BMs a day (no constipation lately), some cramping, low-grade fevers sometimes, that hip/pelvis pain (I made an appt. with my osteo to see if I could get that figured out, I assume it's not due to this bowel problem), gurgling, that lump, migraines/headaches, dizziness (probably due to ear), palpitations, and rib pain. I have been able to maintain my weight & I have not been getting up in the middle of the night for BM since starting the prednisone. I have been having puffiness as an issue, think that's related to the prednisone, that's why I want off of it.

So, that's about it. Just waiting, waiting, waiting.... I have read that sometimes a normal colonscopy has abnormal biopsies. Maybe it will show something. If not, it's back to more testing (promethsius lab blood test).

hii sorry to interupt your convesation but im having very similar problems to you both, i have diarrhea, serious abdominal pain, sometimes blood in the diarrhea, fatigue and serious joint pain and also sometimes high fever. Im only 16 and have been having these problems since last january... they took my appendics out thinking it was that, ive had two colonoscopy first one they saw severe inflammation but then lost my biopsy results and second one saw mild inflammation but biosies said nothing... blood tests point to chrons but cant show anything... its horriable ive had enough!! i no how you all feel! after the first gastro doctor loosing my results my mum sent me to another hospital and they have been ever soo good although blood tests show IBD they cant find where it is, thats why ive got to have the capsule endoscopy tomorrow im hoping it will show something.
I hope you all find some answers very soon and ill let you no if i find anything out
I hope your feeling better very soon.

Hi Millie-
I am so sorry to hear about what you have been going through. There is no excuse for losing biopsy results, and I am sorry you have had to go through all of this. Colonoscopy's do not show chron's in the small intestine, so if your Dr. was possibly thinking Chrons, this could be where it is hiding. The capsule endoscopy I hear has fantastic results, and am actually awaiting one myself in a few weeks (if my tests on Friday prove inconclusive). I hope you find results tomorrow, please keep us informed on your journey.

Best wishes!

Colonoscopies CAN show crohn's IF they are able to get to the Ileum & IF that's where the problem is. The caspule endo should help clue you in. Have you had the small bowel follow through? That also helps....

I am still waiting on my biopsy results. I am going to call tomorrow. I am so curious, but have a feeling it won't show anything....

Keep me posted both of you!

Hey there Hukleberrie-
Yea I guess I just meant colonoscopys won't show Chron's in the "majority" of the small intestine... at least that's what my Dr. told me. I agree with you though, yes if they can see to the Ileum than it could show this... for some reason Dr. couldn't see that on me though. I am nervous for you to call and find out, please keep me posted! My fingers are crossed for you, whether that means for a final diagnosis or for you to be IBD free?! Either way...

Keep me posted!
Warm wishes!

thank you both for replying a and i hope you didnt mind me interupting you conversation... i had my capsule endoscopy today and i felt major bits of pain and nausea for about 15 minutes during it... the doctor said this could be where i have narrowing of the bowel... the doctor strongly suspects i have chrons... as it does run in my family and blood tests show it... i no how awful all this and i bet you are both the same and just want a name for whats going on inside you! Good luck tomorrow btw! let me no any results you both get... please keep me informed of any progress and ill update you when i get my results... keep well and good luck for tests everybody

Hey there Millie-
I am so sorry to hear of the pain and discomfort you felt during your capsule endoscopy hun! I hope you find answers though... please let me know when you do find out!!! I will be thinking of you!

Warm wishes!

Hukleberrie- ANY ANSWERS!!!!?????? I've been thinking of you!!!!

No answers, and I am having a lot of blood in my stool. I know she said I would have bleeding because they were deep biopsies, but I didn't expect it to last this long.

I called today for results & was told the nurse would call me back, but I didn't hear back, maybe they don't have them yet. I hit them up about the blood & am waiting to hear back about that too.

I am just tired.

Awww hukleberrie- I am so soooo sorry. And am sooo sure you are tired of all this. All of it is just not fair, the constant waiting game gets so old, and you know better than any of us. I am sooo sorry, my hopes that you will hear back tomorrow! You are in my prayers!

Biopsies came back normal, I guess. So, I can start to taper off the prednisone!! Yippee!!

I don't really know what this means at this point. I know the SBFT showed inflammation or something, but don't know what that could be. She had also wanted to do the promethsius lab blood test, but I didn't hear anything about that, I will have to ask.

So, at this point I am just going to taper off the prednisone & hope all goes well & wait for my follow up appt with my GI next month. We will see how I do with the taper....

Still bleeding. I was told it was from the biopsies, but I can't believe I am still bleeding 8 days after the colonoscopy. I called back & the nurse seemed surprised about that too. I won't hear back about that until Monday.:confused:

Hey there Hukleberrie-
Yay for the biopsy reports! I'm glad they came back negative and you can weed off the prednisone. Are you happy or still down about the results? I know you want to find out what this is that is going on with you. Is the Dr. no longer thinking about an IBD with you? Glad to hear you finally got the results though... you've waited long enough!

I have no idea what the GI is thinking, she didn't give me that info over the phone, I see her in month to discuss, I guess. This has been going on for me for 10 months, so I am not surprised. I THOUGHT I had a dx, but now I am not sure. More tests, I guess. She had wanted to do the blood test, but I didn't hear anything about that.... I just wonder what caused the small bowel series results....

I am happy about getting off the pred. I pretty much figured this result would end up this way....

hii just a report on my situation at the moment... i got a letter through about a week ago which said i had a appt for 20th june... but my mum was like ok then they cant have seen anything on the pill capsule because they would have made one nearer anyway... i got a letter through this morning saying they have had to bring forward my appt urgently to the 12th may... im reli scared they have found something terriable. how are you both feeling now?
my thoughts are with you both.

Just call & get the results. They will tell you the results. Don't be scared. If it's anything, they will probably just put you on prednisone or some type of med to fix it up! : )

BTW, I am feeling good, still going often & having mucus, but besides being tired (probably because I am so busy) I am okay. Still having pain, but GI says it's not from a gastro issue, so I am taking that up with my osteo next week.

My GI called me this morning & she said maybe I just have IBS from a bacterial infection that had caused the colitis before. So, I am not sure what is going on. I am tapering off the prednisone & off the azulfidine completely. I should still follow a diet & eat only what doesn't make me sick. So right now I am optimistic that maybe it's nothing & MAYBE I don't have Crohn's. But we have to see what happens when I am off the prednisone next month. It's a waiting game again for me. I don't really understand why the small bowel series showed something, though. I am going to request another small bowel series test if I still have problems off the prednisone. I just want to make sure I don't have crohn's....

Hey Millie, I agree with Hukleberrie - call and get your results (I wouldn't want to sit and wait either!) Hukleberrie I am glad to hear that you are feeling somewhat better :)! Very interesting that the Dr. would call and say perhaps it was IBS... who would have thought. As far as me... I got the results back from my ultrasound which showed no stones, and my small bowel series (turns out the radiologist did it incorrectly so they didn't have a clear visual-GREAT! NOT) Anyways... May 15th I am due for a capsule endoscopy. I really don't know why... when all the other tests have come back negative I am sure this one will as well. However, I am still having the pain. More and more I start to doubt myself and think well maybe all my symptoms are just due to IBS and stress, as I know stress can do havoc on your body. However, my Dr. said if this was the case my IBS meds would have shown some improvement, and they didn't. I even called my Dr. a couple days ago, asking him his true opinion about whether or not I should even go through with the capsule endoscopy. I asked him the likelihood of even finding anything that could define my symptoms and pain if all the other tests didn't. I asked him to be brutally honest with me. He informed me, that he believes there is certainly something going on there (due to my symptoms) however, he just can't find it. As a result, he said that the capsule endoscopy would allow him to really see my small intestine... and he told me he really thinks I should go through with it. So I'm taking his advice and going May 15. I want there to be nothing, but at the same time if nothing is found I know that this is the end of my tests (nothing else to do) and I don't want to live with these symptoms forever.

Well, I am just tired of the poking & proding. I am just ready to get off the meds & see what happens. If the colitis in the colon was gone, maybe the prednisone helped that as well. If I get off it, I will know I am still sick if I lose weight or get D or become really ill or something. I see the GI the 19th of May & she said that was a perfect time because I will be just off prednisone. I am ready to know. I am kinda glad this colonoscopy was clear because if it is IBD than it will show it's ugly head & we will know exactly what we are dealing with. If it does NOT "come back" where I am super sick like in December & January, dropping weight like crazy & so exhausted & dehydrated all the time, then it's just IBS from the infection (I guess that can happen). But, if I am sick again, then I KNOW it's CD and I will finally have a dx.

You can guarantee that if I am still having mucus & frequent BMs, that I will push for another small bowel series to make sure that what they caught before isn't still there "in the small bowel loops overlaying the cecum or ileum". (That was a possiblitiy, but he THOUGHT it was in the cecum or ileum.)

I am not healed, I don't feel it, and I still kinda think it's CD. But, I HOPE it's IBS. And I am tired of this game, so I just want to know. I will post as I taper. I go down to 10mg tomorrow.

ahh good luck for trying to get of the meds i hope everything works out for you and let me no how you are feeling after? amberwalsch is there any update on your case?
hope your both feeling ok

Hey there millie- thanks so much for the concern! No new updates with me, I go back in May 13th for the capsule endoscopy. But now I am also being tested a few weeks for diabetes... so who knows. How are you doing?!

Hey there Hukleberrie and Millie-
Latest update on this side... lately I have been having these jack-hammer feelings from within (they are like internal shakes where I feel as though everything inside me is shaking but no one else around can feel it, kind of freaky)... it can come on just out of the blue and it takes this look... I'll being sweating heavily, I will become very dizzy, eyes will go blurry, and my heart is racing. I called my general doctor with this information yesterday... and he was incredibly intrigued. He is beginning to think that the stomach issues could be just a side symptom of something else I may be going through... he is now working with my GI doctor (who has been performing all my tests) and called me first thing this morning. He said he was at the hospital late last night with my GI doctor having a meeting, going over all my lab work and test results to see what they could piece together... (FINALLY SOME GOOD MEDICAL ASSISTANCE! :)). Anyways... I got a call this morning bright and early from my general doctor who informed me that he had called ahead and that I needed to go pick up an automatic blood pressure monitor, the instructions were to take my blood pressure three times a day... and whenever I found myself to be going through these "episodes" of stomach pain, or jackhammering associated with sweating, to take it again.

Long story short... I picked up the machine this morning (45 minute walk there and back... college kid with no car on campus haha)... came back here and took my blood pressure, it was within normal range. Then about an hour ago I started to feel an episode of dizziness coming on I took my blood pressure and it was 137/72, so it changed somewhat from what I am usually at but not significantly. Now I need to wait out a major episode to take it yet again.

I thought I would post this due to the fact that this kind of reminded me of Hukleberrie. I remember you saying that you may be having a thyroid issue. Well my doctor said that he is doing all this blood pressure testing thinking that it may be something where your body releases too many hormones at once... causing these feelings? or a thyroid issue? When I drive back home to go to the hosptial for my capsule endoscopy in 2 weeks they are testing for thyroid issues, diabetes, and a lot more.

Just thought I would update... how strange to go from all the colonoscopy's and such to this!!!

Hope all is well with you both!

That's weird. I have never had anything like that. I do have palpitations & have had blood pressure ups & downs but normally due to pain, I think.

I am on my period now & will see how this long period/spotting goes soon. Maybe it was just the cyst that was the culprit, or maybe it is the thyroid or hormones. It's a waiting game to see...

I am tired of it all. I have an appt. with my osteo tomorrow about the hip pain & rip pain & he normally talks to me about Crohn's as well (he is the one that first said it was a Crohn's issue...). We will see how it goes. I am hoping for relief, not just masking the pain with meds.

I am now down to 10 mg of prednisone, totally off the azulfidine, and tomorrow I go down to 5mg of prednisone. At 5mg or less is when the fun normally starts with this crap. Hopefully since I was only on 20mg, it won't be that bad. But, at least in a week or two I should know how my GI issue is.... Hoping it's just IBS from a bad bacterial infection, but just not sure about that yet.

Sounds like you have a good doctor sticking up for you searching for your issue. That's good. You seem to be in good hands. Keep us posted & I will as well.;)

im soo happy that your finally getting somewhere with the doctors amberwalsch!! as with my case the doctors phoned up this morning saying they are squeezing me in on tuesday for appt because my mum had rang ealier and was like why send us a letter with a big urgent on it if you cant give us a appt till 24th june? so they think its urgent enough to fit me in on tuesday! im really scared of what they have found from the capsule endoscopy... huckleberrie good luck with going down to 5mg i wish you all the luck anyway update me on and of your cases and ill let you no on how i get on on tuesday
my thoughts are with you both.

Hey millie-
That is great news that they can squeeze you in earlier. I know you are worried, but try not to get yourself too worked up quite yet. Often times with clinics/hospitals, they will book you way out leaving more recent openings for really urgent cases. Then when you complain about it they move you up to one of those earlier slots. It's almost as if they are trying to be difficult haha. I have had similar circumstances. When they have called after labwork saying they want to see me in three weeks. My mom phoned and said, why make us wait?! They said, okay come in tomorrow. So we did, and all was fine, nothing too urgent. And even if when you go in Tuesday it does end up being something you don't wish it to be... take some comfort in knowing that if it was REALLY urgent they would call you and tell you to go to the ER... they were willing to have you wait weeks!

Best of luck though, and please keep me informed. I will be thinking about you and wishing you well!

Hey Millie- How did the appt. go? Did you get results?

hii sorry i havent wrote and told you what happened earlier ive just got out of hospital been recovering from another flare up... i have got small ulcers on the colon and LOTS of inflammation... his was very worried about my blood levels because there extremely abnormal... i feel knowing a little somthing has lifted a weight of my chest he said he couldnt give me a exact diagnosis of chrons disease untill i had this other blood test done. I have just started exams at school so my symptoms are getting worse unfortunatley. How are you getting on any more update?

Well.... here is what is going on with me currently.

I got off the prednisone 2 weeks ago. I also have been off the Azulfidine since a week or two before that. I saw the GI a few days ago & she feels since the LAST colonoscopy came back clear, (focal active colitis again, but no crypt distortion this time like last time), she believes that I had infectious colitis that has since caused IBS. I am still not sure of this dx, but am hoping she is correct. I think the problem with me & my health issues is that there are so many things going on. She does believe my kidney infection last year caused my body to shock & "freak out" (as I call it).

I asked her about the small bowel follow through results & she said someone must've made a mistake on it because she didn't see anything on the c-scope at the cecum or ileum. (I did not argue with her that the results said "possibly in the small bowel loops overlaying the cecum & ileum). I do believe that there was NOT a mistake, though, since the radiologist talked to me about it & the technologist also. Besides, the ER doc looked at the films (or files or whatever) & said that seems to be Crohn's.

So, I go back to see the GI in September & call her with any problems. The issue I have is this: How do I know if I am having problems? I feel like I am having problems now, but since she thinks I am fine, with just IBS, what would constitute a call?

My current symptoms (GI symptoms, that is) include blood in the stool again daily (GI said it is probably due to the small internal 'roids she found during the scope – funny part is that I didn't have any blood whatsoever until I stopped taking the prednisone & azulfidine....), and I am still going 2-4 times a day. It has hardened up, though, hard little balls again. About a week after the prednisone, it hardened up. Currently I am having this yellow jelly-like substance in my stool as well. I had a lot of mucus before, and maybe this is also mucus, but (excuse me for this, I know, TMI) instead of slimy like snot, this is more like jelly or jello. It almost looks like fat. Right before this jelly stuff started, I had 2 days of green slimy mucus. I have lost a few more pounds again, too. Nothing super concerning, though. I have been nauseated & the gurgling is getting louder again. I am also EXTREMELY tired, but the GI believes that is due to coming off the prednisone still.

The GI said to get off all my medications (I am still on Lortab for pain though) & she thinks the meds were not helping or where a problem to my body or something. I don't know.... She did prescribe me Bentyl for cramping. I haven't filled it yet.

I have switched my primary care physician to the osteopath I see for my rib & hip pain. He believes that the pain is related to my GI issue still & I do think he still thinks it's something beyond IBS. I have since found out he has Crohn's, so I think if I do have CD, he will be of great help to me. I see him 2 weeks from Monday so he can go over all my medical history since before I just saw him for my muscle/bone issues.... I will post after I talk with him. I am curious what he has to say. He's a great guy & I do believe he will be of great help with my problems.

My other issues are going to be resolved, I think. I finally got to see the ENT. Had a hearing test, too. I guess my left ear has problems with low sounds & this is normal with fluid in the ear as I have. The ENT wants to put a tube in my ear & also do a nasal endoscopy. He was so surprised that the prednisone did not fix the fluid problem, that is normally the last result medication, but since it didn't work he thinks there may be polyps or something that are keeping that fluid there. I am waiting to hear back on when exactly the surgery will be. I can't wait to get it fixed. I am hoping it will fix my migraines, dizziness & balance issues as well as that muffled feeling.

My female cycle seems back to normal. At least something seems to be working right. I should know in the next week or so if it still is. :)

I am having some symptoms of an UTI, so I am going to do an at home test to check that out, but that's about the extent of what is going on with me now

Hope you both are feeling well.;)

BTW, my osteo is sending me to another osteo about my hip & rib pain to see what she thinks & if her manipulation, which is different style than his, will help since his didn't. (He had also tried an injection in my hip flexor, but that didn't help either.)