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.
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!
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....
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.