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Sunshine, I must have completely missed your question about pill cam prep. What Star said is true - it's up to the doctor/hospital whether or not you do prep beforehand, and there is only one type of pill cam at the present time. I had to do 1/2 prep for mine, Allie had to do a full prep, and it sounds like you won't have to do any - lucky you!! They might ask you to not eat very much or to fast overnight beforehand and there will probably be specific instructions as to when you can eat or drink after you've swallowed the capsule. They might also be picky about what you wear - for mine, I was told to wear one thin 100% cotton shirt. Apparently the signal from the capsule to the belt can go through one thin layer of cotton, but not any more than that and not other fabrics. So, make sure to get all the specifics since your instructions will probably be different from what I got or what Allie got. I was told really specific things too like no fish oil for 5 days prior to the pill cam - apparently fish oil can cause bubbles in the digestive tract. Anyway, I don't want to overload you with info, and you'll surely get all the info from your doc anyway.

Allie, how'd it go? I'm guessing you're all done by now with the pill cam? Have you expelled it yet? I never did find mine, but on subsequent x-ray they didn't see any trace of it, so apparently it snuck out at some point. The good thing is, they don't make you return the capsule, just the belt. They'd probably get a ton of complaints if they made everybody search through their poo looking for that little capsule! ;)
 
Star, okay, thank you for that info on the pill cam. I wasn't sure. All he said that I would have to do is just come in for the test in the morning and drink a prep there and then swallow the pill. He will give me more directions on what to wear and all of that stuff when the time comes closer and we have a date picked out and everything. I'm nervous... not sure what to really expect for that.

Cat, you had a pill cam done?? They didn't find anything?? That's so sad... I'm sorry. :(
Your comment about returning the capsule after you expelled it was really really funny! haha. :p

Kinda stinks that I have to do the laproscopy to see if I have Endometriosis. But, at least we can cross it off the list after I get it checked! Even my Gyno said it seems more of a GI issue, but that it could very well be both. But, we will see! and hopefully the colonoscopy results will tell something and the pill cam will be done soon.

So, what do you do after the pill cam? What is there really left to do?

Cat, what is your next step as far as figuring out what's going on in your tummy?
 
Sunshine, yes I had a pill cam and it came back normal. I had put a lot of faith into that test, and it was absolutely devastating to hear that it didn't find anything! That was back in Sept '10 that I had the pill cam. In Oct '10, my GI put me on Entocort which put me, if not actually in remission, then pretty darn close to remission. Sooo, since I have very little to no inflammation or symptoms right now, there's not really much point to doing tests right now. It's kind of a catch 22 - I've still got the illness and I could flare up at any time, but I can't try again to get a diagnosis until I do flare again. So for now I'm indefinitely in limbo, feeling pretty well but dreading the next flare. But also weirdly kind of looking forward to the next flare because it means I can resume testing! It's an odd place to be. For now I'm trying to enjoy being in remission. I've learned that remission doesn't mean cured or 100% symptom-free. If I eat the wrong thing, or get too stressed, don't get enough sleep, etc I'll still get a few days of diarrhea, nausea, low appetite, pain, and so on. So I still have to keep on my toes! But as long as I don't make my body angry, I have mostly good days. And for now, I'll settle for that. But of course I do want a diagnosis too. Can't always get what you want, I guess!
 
Cat, I am soooo sorry to hear that they didn't find anything. I am worried about that as well. Entocort is something that only people with IBD respond to, isn't it? Or can your gastro doctor do that? Put you on something that ONLY people with IBD would feel better with, and then it would 'kinda' bring a diagnosis. Even though, unfortunately there was no actual evidence for it. :( Gosh, that's so upsetting, I feel so bad for you. But, at least you are having more good days! I know it's gotta be so frustrating to not have any signs, but you never know, maybe you will one day if other signs start showing up. My body loves showing up normal in everything, and I am afraid that when they do the pill cam, they will be like, oh everything's perfect! lol... then it's like a slap in the face, and you have to start back at square one. I was thinking about possibly going to a testing center like the Mayo Clinic or something if no results come back with anything and if my gastro doctor gives up. But he seems very determined so I doubt he'll do that.

I decided to take off school for the Fall semester, just because I've gotten worse the past 2 weeks. My nausea hasn't been going away like it usually does. Running off of no sleep, pain and nausea is really hard of course you know that. So, going to school this semester is probably better if pushed off until I'm feeling better. Plus, this will give me 5 months to just do whatever tests or procedures necessary to get better. School can wait, my health is first! My 21st birthday is in 18 days, crazy how long my tummy issues have been going on for! Time flies!!
 
Hi guys, Blimey you miss a lot if you don't browse for a while.
I'm sorry that so many of you aren't any nearer diagnosis.
Allie that's brilliant that you will have your results so quickly, you will have to let us know asap! And sunshine fingers crossed for yours too.
Cat , happy to hear you are feeling reasonable at the moment.. When do you see gi again or are you changing gi's ?
Star have you got an appt with your new gastro and your rheumatologist? And why don't you ring the complaints department and ask why they have not responded within the allotted time?
And anyone else... Can't recall anymore threads, think I have temporary spongebrain, I hope you are doing ok.
 
Hi littlemish, so nice of you to stop by when you've got your own troubles :)

I see new GI on 22nd August and Rheumy again on 12th September. Tbh I have no hopes for GI, if I end up under Rheumy alone I would be quite happy. You know a department is no good when a Dr in another tells you in a round about way to avoid them! Not that is something I hadn't already figured out haha. I mean, what kind of GI only does a flexi-sig to diagnose IBS? Sje was supposed to be the top one there.

Hoping biopsy results are back within another 1-2 weeks and stool sample I am hoping will be in Friday but really have no idea how long it will take, surely it shouldn't be longer than a week? Was handed in direct to Path lab at Hospital too!

I plan on ringing up complaints service tomorrow, I wanted to give them more time to hang themselves, as they can't use the excuse "oh it's in the post, we posted before deadline etc". So if nothing arrives they haven't a leg to stand on and they can't fob me off tomorrow.

I am mighty pissed off and really upset, they are supposed to be the ones that help me. I just have not got the energy to take it any higher right now, I can only do so much (which is getting less and less) and just can't do it. I am really going to implode soon with the stress, this month marks 5 years since I got ill, and no-one except Rheumy is willing to help me, I get that bit worse every few weeks and can't seem to get anyone else at that Hospital to care.

Woke up with awful abdo pain this morning too which I did at least manage to sleep off. But when it gets that bad it tends to come back :( My appetite has vanished which is great fun since I have to take shoulder painkillers with a decent amount of food.
 
Hey everyone! The entire procedure yesterday went well, and then we did the 3.5 hours drive home and crashed. ;) They said the receiver got 55,000 pictures, so heres hoping at least a couple of those show the issue!

Cat, that is a good point with dehydration. I think we thought allergy because I also broke out into a mild rash as well. My veins in my hand were all visible as well, which was kind of scary, lol. But I was at least slightly dehydrated, because even though I was drinking a ton of golytely electrolyte stuff that they prescribed, I was always incredibly thirsty! After I drank the required amount of prep stuff I would drink water, sprite, or even eat some jello, but everything was running through me so fast that it wasn't helping, just keeping me in the bathroom and not in bed.

I still feeling like I'm prepping, since everytime I eat it just comes right back out, but that is normal symptoms for me. I haven't seen the pill yet...my husband thinks it would be awesome to keep it...I think he is insane! ;) While driving home he said "we should keep it and say, this finally got us the help we need!". I asked him what we would do if the test comes back normal and he goes, "well then we will CRUSH it!" He is so hilarious sometimes, especially when he is trying to make light of this entire situation. :p

Cat, my dog wont fetch either! I bought her a squeaky toy that she loves, but she never brings it back. She usually runs after it after I throw it, attacks/ plays with it for a little bit, then runs back to me all happy. :p If she does put it in her mouth she only brings it back about halfway. She has the herding instinct though, because she loves to go into a large field buy our house and run around us as fast as she can. We will call her to us and she will run to us, then keep going, which can be very funny!

Sunshine, I have heard that doctors can be very different in how they prep you for a pill cam. For my small bowel follow through I did not need any prep, so I'm guessing you don't need any because the small intestine doesn't need as much cleansing as the large intestine. My doctor wanted the pill cam to see as much as it could, so if it ended up going to the terminal ileum/ colon and it was still taking pictures, then it would be clean so that it could see if there were any problems. Since you had a colonoscopy recently they probably don't want you to go through the trouble.

As for what test after the pill cam..I am actually not quite sure. I have no planned tests at the moment, but I'm sure if your doctor believes there is something not found he will try something else.

That's exciting that you are 21 soon! :D And I understand the taking off school to try and figure things out. I dropped out a year ago due to the symptoms I was experiencing (I really didn't like having to be on tramadol and go to class...), so I left and came here to be with my husband. I told myself I would go back a year later and try again, and of course I am still sick. I fly out of here in 9 days, but I know I have to finish these three classes and graduate!

Star, I hope the new GI gets things in order for you! And that your test results come in soon. I'm sorry the complaints service isn't taking your requests seriously...that really sucks! Hopefully the new GI will be good enough to make the complaints worth it.
 
Sunshine, unfortunately responding to medication such as Entocort is a good indicator, but not enough for even a "kind of" diagnosis. Entocort specifically works only on the terminal ileum/ascending colon area, so yes, it pretty much only works in Crohn's (it does not work in all types of Crohn's, just the kind that is in the TI area, and Entocort also does not work in Ulcerative Colitis). There have been recent studies showing Entocort also works pretty well in microscopic colitis although it hasn't been officially approved for use in that just yet. My GI has said that this could be Crohn's or microscopic colitis, but we're still not sure which one this is. My GI won't even say for sure that this is an IBD (he's very cautious and won't hand out a diagnosis without hard proof). He's given me a placeholder diagnosis of "chronic non-specific enteritis" (enteritis is just a general term for inflammation in the intestines). My GP fully believes I've got an IBD, I wish he could give me a diagnosis but he's not the specialist. So I'm close but still stuck. It's frustrating, but it's definitely better to be close to a diagnosis than far away from one. At least we've ruled out most everything else so I pretty much know what I'm dealing with. It was much harder to deal with when there was a long list of possibilities. And of course it was much harder to deal with this illness before I hit this remission or near-remission state!

Little Miss H, I hope you're doing better! With regards to my GI, I've been putting a lot of thought into whether or not I should switch GIs, and I still don't know. For now, I guess there doesn't seem to be a lot of point to looking for a new GI - since I'm in/near remission, doing more tests or re-doing some of the tests I had last year wouldn't make much sense and would most likely not find anything (especially since all the tests I've had didn't find anything even when I was nowhere near remission!). My current GI is okay, not great, but I'm afraid that if I switch to a new GI, they might say it's IBS. At least my current GI is willing to try things like Entocort on me and he believes it's more than IBS. I guess at this point, even though my current GI isn't super great, he's better than the unknown... I think. I see my current GI again in mid or late September so I'll re-assess my feelings after that appointment.

Star, I hope you can get your test results and some answers from the complaint people when you call them tomorrow! I certainly understand having no appetite and having to take meds with food, been there done that. Can you get any of those supplement drinks like Ensure or Boost to have with your meds? In the past, I've been on meds that have to be taken first thing in the morning, and have to be taken with food, but I am one of those people who just cannot stomach food for the first few hours that I'm awake. It makes me nauseous even thinking about eating first thing in the morning, and I've always been that way, even before I became ill. So with meds like that, I can at least stomach an Ensure or some similar drink right away in the morning, that's always worked well for me. So if you can tolerate drinks like that, give it a try. It's definitely easier on the system than actual solid food is.

Allie, I really hope the pill cam found something! So you're supposedly getting the results tomorrow? That is so fast, I hope your GI is able to look at all the images between now and then! When I had my pill cam, I was told by the receptionist that it takes about a week to get the results. But after a week had gone by, I called to see what was up, and they said "Who told you it takes a week?? It takes more like a month!" It ended up taking about 3 weeks. So I hope your GI is very speedy and can get you the results as quickly as he said! If I'm remembering right, you're coming back to the US on Saturday? So, ideally, if the pill cam gets you a diagnosis, you could start treatment as soon as you get back? That would be great, if you could start treatment and get to feeling better just in time to graduate! At any rate, you need some relief! Best of luck with the results and with finishing up your degree, I hope it's all smooth sailing from here on out. :)
 
Thanks Cat! Yeah because he has military obligations starting Saturday, so he has to finish them by tomorrow or I wont get the results for a long time... like over a year lol. I'm skeptical too, so I'm not getting my hopes up that I get a call. I don't know what their policy is on having other doctors go through the images, but I wouldn't be surprised if it got handed to another doctor due to the short time frame! They are also going to email me certain pictures, especially if he finds inflammation or damage, which I thought is pretty cool.

I'm coming back to the good ole USA in 9 days, so next Saturday. :) Right now we aren't coming up with a solid plan for treatment (don't want to get our hopes up), but I will either make the drive back to my GI's office next week before I leave, he will start treatment over the phone, or I will have to see if my insurance will let me see someone in the states once I get back. It would be great if he just sent an rx for me to pick up here so that I don't have to put much effort into it, but I doubt they will let me have it that easy...the military likes to make things complicated as you can tell. :p

I agree with you Cat, at least your doctor is not saying IBS and is trying to find a way to figure it out! I think with cases like ours its hard to leave a GI who has seen you for a long time and knows that it is something real and serious. Hopefully after some time there will be an opportunity to finally find the proof for you to get a real concrete diagnosis!
 
Well I tried the complaint people but couldn't get anyone to answer the phone. As they shut at 4pm I left a message and will get Mum to try tomorrow since I am fed up with the whole thing, I am likely to rant at some poor person whose fault it isn't!

Thanks for the suggestion Cat, but the codiene irritates my stomach something rotter if I don't have it with enough food, so it has to be solids and not liquids.

It's one of those days where I think it'll be easier to give up trying to get better since I can't get enough help and i've no energy to try anymore :( I'm very much aware August is my anniversary month of when I first got sick 5 years ago now and it just makes things that bit worse and harder to cope with.

On a side note, i'd bet you anything since March (Pill Cam refusal) the cost of my care (Clinic appointments, blood tests, scans/other tests, A&E care), has far exceeded a Pill Cam or PET scan, and climbing still! :devil:
 
Allie, So happy that they took so many pictures! They must have an answer after all of that! :) You have to tell us as soon as you hear back!! And, yeah not dong school is probably a good idea until I get figured out. I'm glad I'm not the only one with the school issue.

Cat, that stinks that Entocort is really only good for if you have crohn's in the TI. I wish they could give you something that maybe would check your small intestinal crohn's. Since there are so many spots where crohn's can manifest. Maybe your doctor will do another test in the near future, and can tell if it's microscopic colitis or crohn's. It must be difficult when the doctor isn't sure which it is, and won't even say anything about it. That's how my GI doctor is. He refuses to ever say anything about what he thinks or what he sees until he has complete, hard, proof. Which is great, it's just like, when are you going to tell me what you're thinking! That's great that you are SO close to a diagnosis, but then yet so far, because no one will just make up their mind and say this is what you have. Which i understand because it's a lot of pressure if you mis-diagnose someone. But, someone has got to be the one to make a decision so your not living with pain and no diagnosis or real treatment for it forever!

I've decided I'm actually going to wait for them to check the endometriosis idea until AFTER the Pill cam. Thinking that's probably best.
 
Star, I'm sorry about your frustration right now. :( I have been sick for a little longer than you, but I have only been pursuing it for the past year....I cannot imagine heavily pursuing it for 5 and still waiting. I really hope a test comes back positive or your new GI on his own decides to do the pill cam.

I mean, I went to the doctor at first, at 15, but I was too scared of the possibilities to try more. The first GI I ever saw said IBS without touching me, and when I came back saying the meds made my throat close up he yelled LIAR in my face and stormed off. So I was afraid of doctors for a good long while!

Sunshine, didn't you say the endo test was laproscopic? Where they actually make an incision and look around? I would hold that off if possible...my minor hernia surgery took a few days to recover from due to the anesthesia (an ER doctor claimed I must have a hernia, cut me open and found nothing... they only cut me open a little bit though, so they didn't see my intestines). The day after I felt like I had been run over by a truck! My husband picked up my arm and I started crying. So that test might be harder to recover from than a scope or pill cam.
 
Allie, yeah that's why I'm going to wait until after the Pill cam and after everything he wants to do is checked. I just have a weird gut feeling about the laproscopic thing, because I know this is a GI issue. and even my gyno said she thinks it has more to do with my GI system, and not female parts. but she said it could be both. but i'm going to hold off on that for a while and go with my gut feeling about the GI issues.

and I hated when I went to my first doctor and he said IBS without looking at me either, it's like how can you even tell? lol. makes no sense. Glad you pursued another dr and had a pill cam done allie!! :)
 
Yeah, I'm glad too. :) My OBGYN did the same thing...as they were doing the ultrasound (a transvaginal one...fun stuff) they could see my colon, and it didn't look quite right, so they told me to see my GI. This was a tech, and she was very polite. My actual OBGYN came in afterwards and laughed in my face saying I was just constipated and to go home and take some laxatives! O.O I went home so ashamed that day...I knew she was wrong, because I had been put on percocet and diluadid the night before at the ER, which causes constipation, but I was still so upset! I never went back, lol. But it is something to look into if all your GI stuff comes back normal!
 
wow, what a rude OBGYN. jeezeeee sorry that had to happen to you!! that's craziness! i'm definitely thinking it's GI related so i'll look at the OBGYN stuff later.
 
Cat, I just reread what you said at the top of the page (it was hard to remember all of it the first go...so many posts! :p), and you talked about wearing a cotton shirt...was your receiver just a belt with the receiver, no wires? I had 8 receivers stuck on my stomach, and their wires went to the receiver, so the amount of clothing didn't matter. Then the belt attached around the waist and over the shoulder since it was heavy. I was afraid someone was going to think I was a bomb since I had wires coming out of my shirt into this weird belt thing! :p

The tech didn't stick them on correctly though, and I ended up having two fall out of their little sticky things holding them to my belly. It was kind of worrisome at first, but it looks like they still got the pictures since they were still next to my belly, just out of the holders!
 
I was the same way, Allie. I had sensors all over my abdomen. I didn't get any clothing dictates to the best Of my recollection. I wore elastic waste pants just assuming that'd be more comfortable. We are all waiting anxiously for your results!!
 
Trust me, me and my husband are very nervous! But im trying to keep my mind off of it as best I can. :)

I hope everyone has a great day!!
 
We are all waiting with you lol! :kiss: :ghug:

I don't think a new GI will be much use but willing to try. No chance of a Pill Cam sadly, the funding approval decisons are taken outside the Hospital and above the Consultants so even if he wanted me to have it, it's a flat no unless I have biopsies positive for CD or become aneamic. Even my useless ex-GI said it was useful in cases like mine and wanted me to have it!

Phoned GP again today and still no stool test results, argh! Going to phone the Hospital Path Lab next week and get them to give me guidance on how long that test normally takes.
 
Allie and May, from what I recall, when I did the pill cam I just had the belt on, no stick-on sensors - they said that with a cotton shirt, I shouldn't need the sensors, just the belt. I don't know if it was a different type of belt that didn't need stick-ons or what. I'm pretty sure the only times that I had the stick-on things was when I had my c-scope and again when I had my upper endoscopy - they put stick-on things on me then to monitor my heart rate & other vitals while I was under sedation.

Allie, we're anxiously awaiting any news about your pill cam results! Fingers crossed for you! I hope that doctor of yours comes through and gets the results to you today as promised! I'm not sure what time it is there - it's about noon here, so hopefully he'll be calling you soon? Good luck!

Star, have you gotten ahold of the complaints people yet? If not, that's just awful! They're what, about a week later than they promised? And I can't believe those stool test results still aren't in! I'm sure when I had mine it only took about a day to get the results, although mine was just testing for bacteria & parasites so maybe that's easier to look at quickly (I forgot what your tests were looking for but I believe it was something more than bacteria/parasites?). Mine were done in-house too, my GP's office has a lab in the same building that can process some of the test results right there very quickly (some of the more complicated ones still need to be sent out which obviously takes longer). I hope you get answers from all these people first thing next week - it seems like everybody's just keeping you waiting!

Sunshine, having the pill cam first rather than laproscopy sounds like a good idea to me! If you read Crohn's Mom's thread entitled "My updates", she talks about her recent laproscopic surgery, and it sounds like she's had a rough recovery and is still in a lot of pain. The pill cam is definitely not painful (unless it gets stuck, but they should do either small bowel follow-thru or patency "dummy" capsule first to make sure that won't happen). Have you got your pill cam scheduled yet?
 
I just posted a thread on the results...my GI didn't get around to doing it. :( So I have a while to go!

Cat, thats interesting with the belt! I would have liked just a belt, the wires got very uncomfortable, and it was hard to sit down. When I pulled up my shirt and saw that the technician didn't secure them right I freaked out...I didn't know how close the recievers had to be to get the image. The technician didn't complete the process of sticking them to me, because there were tons of plastic things covering sticky that wasn't being used, that kept them from coming out of their holders. We told him about it when we returned the device and he apologized. I only had on a cotton shirt too, but I was never told what to wear beforehand.

Star, I am so sorry that the board is keeping you from the cam. After so many years, if I were you, I would try a completely different doctor/hospital. If my insurance wasn't so strict I would be going to an IBD specialist in the states instead of the military doctors I am restricted to, and I think it would do you some good for a brand new pair of GI eyes to look at your case without knowing your past. I know that that first GI's BS dx on my record has really dampered my case, and I will never tell another new GI about it again!
 
Thanks Allie, I had planned to travel to a specialist NHS GI unit in London, but i'm too sick now to travel anywhere, so another Hospital isn't an option for me, it's public transport or don't go as I don't drive and no-one to take me (and I don't think i'd do well with a long car journey anyway, can't make it in a taxi to see Grandparents 20 mins away now), and I can't manage it. New GI will be my third!

I am hoping though the complaints service did manage to get me an outside review. Mum was too busy at work to try today but she's going to leave another message tomorrow.

Yep Cat it was a feceal elastace which measures pancreatic enzymes, no idea how long it should take which is why I may ring lab next week. But I am getting fed up of all these fruitless calls so may just wait until I see new GI on 22nd.

If I end up just under Rheumy I will be quite happy, since he realises i'm sick and is quietly determined to sort me out, which is nice!
 
Allie, sorry to hear you didn't get the results back yet. that stinks. But whenever you do get them back you must share them!!! We are all so excited for you!! :)

Cat, I haven't scheduled the pill cam yet, when I go to my meeting when they get the biopsy results back from the colonoscopy, then he will schedule it with me. I hope they get the results back soon!
 
Well left another message with complaints service, I give up I really do.

How I am expected to carry on any longer than this I do not know, I am so close to cracking up totally. The shoulder pain has been so bad lately it's made me cry. Yet I have 5 weeks until pain management clinic, no chance of getting in sooner, had a 4 month wait for the appointment. I am taking as many pain pills as I can and can't get anything stronger from GP.

I wish I could hear about a no answer for the PET scan too so I can get Rheumy to add me to another waiting list for the laparoscopy. Maybe I will email him tomorrow and ask him to do that. Since it is another month before I see him again. And decided GI appointment in 2 weeks will be a waste of time and precious energy. They want to say IBS since they won't admit their mistake, why am I bothering really. And there are no more GI tests apart from Pill Cam which I don't fit the funding criteria for anyway, not willing to do any repeats either, physically or mentally if i'm honest. I can't travel to another Hospital so I am stuck where I am now.

Disability benefits review is right around the corner so add an appeal to my stress load since I will never pass under the new rules. And I will have an income drop of £45 a week while it is sorted out. I barely get by as it is. Things like a car, holidays and cable tv are a foreign language in this house. Being genuine is by no means enough, those with MS, brain tumours and terminal cancer :eek2: (!) are being told they are fit for work by the agency (yes, profit making agency) who makes the decisions. Everyone, including the Government and the man who designed the new system agree it does not work, but does nothing about it since it is achieving it's aim of slashing the numbers. Although I am hearing tales of the appeal tribunal service creaking under the strain and close to collapse.

Not even the though of legal action afterwards for misdiagnosis and neglect comforts me, I will win and have money to do the things i will always dream of; but I need a diagnosis first and more importantly I need help now. The thought of that has been pretty much the only thing keeping me going but it doesn't help me in the here and now.
 
Star...I'm so sorry. :( I don't really know what to say, but I want you to know you are in my prayers and thoughts with the wall you seem to have hit.

Don't you take codiene for the pain? To tell you the truth, thats a pretty good one for someone who isn't diagnosed.

All my doctors are willing to give me is Tramadol...its not working anymore either, because this flare has lasted too long. I have said to my husband several times today that I would do anything for just one percocet to have four hours of relief...I was on it when they thought it was a hernia and it was the best working stuff I've had! I've also used hydrocodiene in the past but the last time I used it it gave me hallucinations. o_O

My pain is terrible today! It was the cramping pain, which never happens to me. It was both the upper left quadrant and the lower left. It finally slowed down but now my stomach feels like it was beaten or torn to shreds...so I've got a heat pack on it, but it isn't helping much. I'm going to ask for stronger pain meds if they see crohns on that pill cam!
 
Hello everyone, I certainly feel your pain and frustrations. I was diagnosed with Crohn's in 2003, battled severe abdominal pain for a few years before finally having an ileocecal resection done in 2008. Ever since surgery, I've had severe diarrhea. I know diarrhea is common for a period of time after resection but it has continued. My doctor has had me try numerous rounds of Cholestyramine which hasn't helped. I have also tried Welchol, Entocort, Prednisone and numerous others including 4 Lomotil/3 times/day (prescription strength anti-diarrheal) which hasn't even touched it. I have had numerous colonoscopies, MR enterographies, endoscopies, stool and blood tests, etc., all of which have showed that my Crohn's has been under good control ever since surgery. The diarrhea has been so bad for so long that I recently developed a perianal fistula and abscess that I had to have surgery on. None of my GI doctors can figure out what is going on since my testing for Crohn's is all negative as well as all other testing - infections, Celiac, food allergies/intolerances, etc. I'm currently back at the Mayo Clinic for another round of testing.

Has anyone had similar symptoms or heard of someone else that has knowing that all Crohn's and other testing has been negative? Thank you for your help, I'm desperate! Hope the rest of you all find answers soon also!

Current Meds: Humira 40mg injection every 2 weeks
 
cdoc79, you say at the beginning you were diagnosed with CD, but then say your testing for CD is negative? If you could clarify, i'm sure someone could help you. I have heard good things about the Mayo clinic!

Allie, yes I am on codiene 30mg/paracetemol. But I have to take them with a decent amount of food otherwise I get a side effect of more stomach pains (nothing touches abdo pains, I actually take it for shoulder pain). So when I have little appetite is is a struggle to get the relief I need. And when it's bad one doesn't work, so I have to take another, which involves yet more food, which I can't always do.

Day-to-day it can be manageable, but when it flares up it gets really bad and hard to control.
 
Finally managed to speak to someone at the Complaints Service. Apparently the final outcome reply was the letter I got from my GI. So no independent review of my case. And how is that dealing with what I asked for, they didn't even bother to write themselves to say that's what that letter was, left it in the hands of the GI I complained about basically.

I'm done I really am done.
 
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Hey all, I have been reading all the "undiagnosed club" posts and thought I would join in!

I'm 23 and have had gastro problems since I was about 10. I haven't been diagnosed with anything really yet. Here's my story.

2006, last year in highschool, I started getting urgency and loose BM's daily with terrible cramps. I'd run out of class all the time and rarely went to house parties.
06-07 I suffered through this a couple times a week, rarely getting any relief, and thats when the anxiety kicked in.
In 08, I gained 30 pounds in 3 months. Went to the doc cause I was sleeping 13+ hours a day for a month, found out my thyroid levels were through the floor, found out I'm hypothryoid (DONT KNOW WHY STILL, could be Hashimoto's since I haven't found a constant dose of meds in 3 years). At the same time, I was having daily diarrhea with terrible cramps and cold sweats/hot flashes. I would get dizzy and numb and sit on the toilet until I knew I could get up and walk.
Well it's been 3 years since, and my GP always told me it wasn't serious. I have been on Imodium 3-4 a day, for 3 years. It is the only thing that can control my D so I can go to work and do some normal things in my life. I am a VERY active person and it has been so hard to keep that up.
Well in the last year, I have had different issues come up and it seems no doctor here cares! I have always had low red blood cells, anemic but not sure if its iron or b12 or anything for that matter. No doctor has ever tried to find out why, and just recently it has been really bad. My "montly time" is terrible, I get so sick and it is always a "light one" the last few months, so i know my RBC is really low. Doc doesnt care.
Went to a GI 2 months ago because of chronic abdo pain, lower right. He asked all the questions, did a Celiac panel and some serum and sed rate tests and the nurse says "I'm ok". Did a flex sig a month ago, 4 biopsies, still waiting on those results. i just found that having a flex sig is weird, since all my pain is right sided.
I have had 2 gallbladder ultrasounds due to terrible colic and cramps and shooting pains from my top right abdo to my back and ribs. Nothing showed up.
GI has blown me off now and I have another GI appt in January with a different doctor to see what she thinks. I am also looking for a new GP cause I moved last year and need a doctor closer by.
I just started a gluten free diet and dairy-light diet, really tough by the way!
I am taking it light on my meds, I want to see how my gastro symptoms are.
All tests are negative and I'm kinda at a lose, it seems in Canada that no one thinks gastro problems are important unless its an IBD.
Symptoms:
D, watery, mucousy and explosive! (sorry!)
Cramps, doubles me over and not really relieved after a BM
lower/upper right pain, dull ache and very annoying, around almost all day every day.
Anemic
Hypothyriod
Joint pain, almost daily (knees, hips, wrists)
Fatigue, pretty bad. I can fall asleep at my desk!
Hot flashes and cold sweats, happens daily. very weird!
Dizzyness, seeing white and black dots it i get up or sit down to quickly, have fallen over a few times.

I'm at the end of my rope. I don't want to live off Imodium for the rest of my life but with the doctors being this way, it seems I have to. No doctor wants to do any more testing, they see me as a over reacting woman. I'm really at a loss of words.
Reading everyones story is so disheartening that so many doctors just don't listen and want to help, why did they become a doctor if they don't want to help everyone?
I could go on with my problems but oh well.
 
Stargirrrl,

Yes I was diagnosed with Crohn's in 2003 via testing/imaging, struggled with abdominal pain (but no diarrhea) until 2008 when I finally had to have a resection done. Ever since the resected portion was removed, everything else has looked good, no signs of active Crohn's but have had severe diarrhea ever since surgery in 2008....despite all imaging showing I've had no active Crohn's since.
 
EnviroChick, welcome and I'm sorry to hear your doctors aren't helping. Are you able to get referred to a different doctor? And as far as tests go, it sounds to me like you haven't had a colonoscopy yet? That's usually one of the first tests a GI will do, so it definitely sounds to me like a change of GI is in order. Especially since your pain is in the lower-right, that could be the terminal ileum (it's the last part of the small intestine, and can usually be seen on colonoscopy). The TI is the most common place for Crohn's to manifest, so it's definitely worth looking into that! My pain is in the lower-right as well, and your symptoms sound a lot like mine. I don't get super massive fatigue, and I don't have thyroid issues as far as I know, but I get the diarrhea, dizziness, pain, etc. I also get the joint pains and was recently diagnosed with arthritis in my hip. You might want to have your primary care doc take a look at your joints with a few x-rays, that's how my arthritis was diagnosed. Arthritis is common in Crohn's and so is pretty much everything else you mentioned. I get horrible night sweats when I flare up too, it gets so bad I sometimes have to sleep on a towel because I soak right through the sheets!

I'm glad Imodium is helping you somewhat, but you shouldn't have to rely on that alone, and of course that probably isn't helping any of your other symptoms. Keep trying, don't give up, seek out better doctors who do care and who understand that you're suffering and need answers. Hang in there! It CAN get better, but unfortunately it can be a fight to get to that point.

Cdoc, welcome and I can't believe you've been diagnosed but are also undiagnosed! Stories like yours just make me sad. So if I'm reading this right, you've been diagnosed with Crohn's, had surgery, have Crohn's-like symptoms now but they don't think it's Crohn's??? Have they checked the entirety of your small intestine, such as with pill cam or even double balloon endoscopy? I haven't had surgery myself but you may want to do a search of the forum and see if you can find other threads regarding post-op chronic diarrhea. I'm sure I've seen threads talking about that before so it's not just you! Good luck, I hope you can get some answers and relief soon!

Star, how endlessly frustrating! I'm glad you have a good Rheumy, because it sounds like you keep hitting brick walls with everything else! I can't believe the complaint people took 25+ days and that was all they could do was have your current GI write you a condescending letter. And, I can't believe the disability program there makes terminally ill people go to work! I'm wondering who would actually qualify for that program, that just sounds insane! :( I really hope the new GI is very good and makes up for some of this awfulness. Only a couple more weeks now until you see the new GI, right? Got my fingers crossed for you! Hoping you get the best GI ever!

Allie, sorry to hear that you're not doing well today either. :( I love my heating pad, when I'm in a flare I keep it cranked up on high. The only problem is that it shuts itself off after 2 hours so I have to keep turning it back on every so often. Other than that, it's great and helps a lot with the cramps & pain. I don't suppose you've heard anything further regarding your pill cam results yet? I really hope another doctor can look at the results for you. And I hope you can get to see a doctor here in the US. Didn't you say you had a great doc here before you went to Germany? Could you see him again when you are here?
 
Thanks for the reply Cat!! Much appreciated.

I haven't have a coloscopy, only a flex sig, and I agree that it is very odd. My GI said during my flex sig (I somehow only remember this through the sedation) that I have IBS. I woke up out of the sedation and my fiance was driving us home and I started bawling cause I knew what the doctor said wasn't fair and he had no right to assume that its "only IBS". I felt terrible for my fiance cause I was just a wreck afterwards, and still am 1 month later.
I am seeking out a new GP so when I get in to see her, I will get a full work up and hopefully she will help me out with my joint pain that I shouldn't be having at 23!!! I take Aleve a lot to help it subside, and I go to the gym about 3 times a week, so i need the pain meds to cope!
It seems like a lot of people have a rough time getting DX with Crohn's, which is very interesting. I know for myself that tests coming back negative are very VERY annoying and make you feel like everything is in your head and the doc's tend to think that already.
I'm hoping I don't have to wait until January to see a new GI to get more tests, I hate the waiting game.
It's great to know that their are a lot of people out there but its also sad that so many people are in pain and no one is really there to help them through it.
 
EnviroChick, welcome to our little club here. I'm sorry you are in the situation you are in! Reading you story reminds me a lot about my own. I am a workaholic, and love to be very active, so I completely understand how hard that can be with an undiagnosed illness. When mine got as bad as it is now I ended up dwindling down my activities one by one, until pretty much everything was gone. Its not fun! I'm actually adding things back into my life very soon, and I feel that I need it emotionally, and I will have to get through it physically.

As for your symptoms and tests, no one is anemic for no reason. Are they treating it in anyway? If they aren't, you really need to bring this up to your new GI, because it needs to be addressed. I really hope your new GI gives you the time you need to get this all figured out! Let us know how it goes.

Star, that's really weird that your codiene causes more stomach pain, but I'm glad it helps your shoulder pain when you need it. My tramadol is the same way, sometimes I have to take two for it to be effective (which the doctor has approved)...I hate it though because of the side effects! Yuck!

CDoc79, I'm sorry your doctors aren't getting you the help you need. Have they tested your small bowel at all, even before your resection? I'm not an expert with all of this stuff, but I have seen several people here not get a diagnosis because their crohns was hiding in their small bowel. Blood tests aren't 100% accurate, so I wouldn't put everything into that. I hope you are able to figure a way to relieve you symptoms soon!

As for me, this trip is really starting to stress me out! Of course, my flare is still going, and trying to pack for a four month trip while being in a flare has been difficult. My husband and I wonder if flying is even a good idea right now, but since my GI doesn't seem to care at all I really don't have any way to make it better. >.< I am excited, scared, stressed, upset, and happy and the same time...and I really don't like it! HA! :p
 
Ha ha we were all replying at the same time...

Cat, I have a heat pad per say, but its a gel pack that you can heat in the microwave. I'm buying a real heat pad when I get to the states, since they aren't available here. I contacted the patient advocate today but I haven't heard back from them yet. It looks like I can choose who I see while I am home, so I think I will either go to Saint Joseph's new Digestive Disease center or I will go back to my old GI. Just depends on who is on tricare's list of approved doctors. I wont see anyone until I get my results though, since there really isn't any point. If the pill cam comes back normal I know most GI's wont help me for awhile, and I'm getting tired of trying anyway..but I have a feeling that pill cam showed some damage! Lets hope so at least, and lets hope I get those pics soon! One can only hope!
 
EnviroChick, it definitely sounds like you need a new GI. Any doctor who thinks that you can diagnose IBS with only a flexi-sig is out of their mind! If you have Crohn's, that can manifest anywhere from mouth to anus, and it sounds like he barely looked at any of your digestive tract. Unfortunately, I think most if not all of us here in the club have heard from (bad) doctors that it's IBS (or depression, hormones, all in our heads, and so on) - you don't have to stand for that though, especially from a doctor who barely did any tests and didn't even do a colonoscopy (which is pretty standard!).

Getting a good doctor can make all the difference. My GI is okay, not great but not terrible either. He does believe that I'm legitimately ill and it's probably some form of IBD (most likely either Crohn's or microscopic colitis). He's put me on Crohn's medication in the past and that worked really well for me. So, it is possible to be undiagnosed but to get some proper treatment and to feel some relief. I was on Entocort for 7 months and that made a huge difference for me. I feel like my illness is in or near remission now and I can live a pretty normal life. So, long story short, don't give up! And seek out a good doctor who takes you seriously, and keep having tests. I know it's exhausting and endlessly frustrating, especially when every test result comes back normal and on paper youo're the picture of health. Believe me, I've been there and done that! But even so, it can get better. I'm proof of that! :)

Allie, that's awful that they don't sell proper heating pads over there! I don't know what I'd do without mine. I actually have a heating pad and also a microwaveable heat therapy stuffed animal (it's literally a stuffed animal that I microwave and then it's warm for about an hour). So if I'm having a bad guts day and a bad hip day, I can heat both painful areas at once. Soooo lovely. Sometimes on cold winter days I'll put my heating pad on even if I'm not feeling bad! Ha ha. ;) Glad to hear that you can probably see your choice of doctor when you get back here! I wonder if your pill cam results could be emailed to a doctor here to review? At any rate, I hope you get those results back soon. We're all pulling for you and hoping for some useful results!
 
I too was diagnosed with IBS after a normal flexi-sig... and look where that has got me! IBD can manifest anywhere from mouth to anus so no way is one test looking in one place enough.

Thanks for the kind words Cat :) I have no hopes with new GI after the general attitude from that department, but I have to give it a try. If he isn't going to look and things any differently then I shall just stick with Rhuemy alone like he suggested I might do. I am pretty much going to get my test results, ask him if he thinks it is IBS, and suggest I go back to Rheumy but remain an active patient so I don't have to wait months in case I need to come back.

Getting stressed ringing surgery every few days only to be told test results not back. So better for me if I focus on the 22nd as the day I get the biopsy & stool sample results. If there is anything found they should call me in the meantime but hasn't always happened that way in the past.
 
Ha, I was diagnosed with IBS after no tests...the doctor looked at me, didn't even touch me, and said IBS! I think thats probably the issue with being undiagnosed for so long...that IBS dx has haunted me! It seems to haunt anyone who gets stuck with it!

EnviroChick, I agree, you need a new GI. And from what I just said, don't tell them the IBS BS! It can really put new doctors in a mindset that is really hard to get them out of. Even if it is IBS, they should look a little harder before they decide that!

Cat, yeah I wish they sold heat pads over here too! The gel thing doesn't last very long. either, so thats why I don't use it very often. If I could stay with military doctors that would be awesome, because all of my records are on a server that all military doctors access...they can see my awful weight differences, my blood tests, scopes, everything! I haven't really thought about the pill can results being sent to a civilian doctor..the GI's at landstuhl have to go through the pics, and my plan is to ask them for a letter for some kind of proof to take with me to a doctor in the states just to get started with treatment. I know that isn't the best plan, because I know this is going to need long term treatment and attention if it does end up IBD, but I just want to be able to get through the four months at school. I know Tracey mentioned that pred and other drugs they use at first to tackle the issue are about three month courses, so I'm hoping to can just get started here and then go back to the military hospital to continue once I'm back.

Seems like most of us are just in a waiting stage right now! I hope everyone is having a good week so far. :)
 
cdoc79, I have been thinking on you :) How do your current symptoms compare to pre-resection? Do you think it may be possible that the CD has come back elsewhere, but is not yet showing up on tests. There are lots of people on here who had normal tests for a long time, and then one test (like a Pill Cam) found it or it finally started to show on regular tests. Or perhaps, before your resection it was there then but wasn't found since it isn't showing on tests. So it would still be there, outside your resection area.

Also are the Drs, and yourself, satisfied the surgery was done correctly? As a problem there could be causing your symptoms. Did it all go to plan etc?
 
Allie, isn't that great when all your doctors are on one computer system and they can all see each other's notes from every appointment and test you've had? My doctors are like that, I go to the University of Wisconsin system (they have a huge hospital and a bunch of clinics here) and my GP, GI, and physical therapist are all on the same system. And if I go to the ER or to urgent care they can look up my files there too. My physical therapist hasn't had any other clients with IBD, so when I first started seeing her I told her about how I may have IBD and how my arthritis is probably related to that in some way. She had never heard of an IBD-arthritis connection before, so she did a bunch of googling and apparently she learned a lot! The next time I saw her, she said that I was right and she put in my notes that she now believes my arthritis could be related to my possible IBD. I was happy about that, because it means my GI and GP can see that my physical therapist is on board with the IBD thing too. So anyway, long story short, I hope that one GI you had who really believed it was Crohn's made some good notes in your file for all the other military doctors to see!

Star, I know you're trying to not get your hopes up, but I really do hope this new GI is good. You've had such a rough time, you really deserve a doctor who is going to listen and take you seriously and help you on the road to getting well again! If worse comes to worse though, I'm glad you have a good Rheumy, and I hope he's able to get you something in the way of testing and also some relief from your symptoms. Do you think the new GI will be able to get you the PET scan you've been hoping for? Or is your Rheumy still working on that?

As for me, I'm actually feeling kind of crappy today. I overdid it yesterday with "healthy" food and I think that's why my body is unhappy today. I had a big salad at lunch, and then blueberries for a snack, and then when I got home hubby made me a big glass of carrot juice in our juicer. I've had d, nausea and pain ever since! I can usually do those types of food on their own, but apparently my body didn't like it that I had all 3 in one day. I'm already feeling somewhat better now that the Zofran has kicked in, so I'm sure it's not a flare, it's just that I ate too much of a good thing. ;) Back to a totally bland diet for me for a few days! Of course, I went to the store this morning to get myself some Gatorade because I feel like I lose electrolytes quickly when I have d, and while I was there I saw some candy on the shelf that called out to me. So I bought the candy and had that this morning and felt even more nauseous afterwards. I am just not learning my lesson with unsafe foods lately! I need to be way more careful with what I am eating right now.
 
Yeah, I really like that it is all in the same system! It really helped when I had my first appointment here in Germany, because they could see that I had seen a military doctor two weeks prior and had weighed 124. They weighed me at 114! It was an obvious sign something was going wrong.

I'm sorry you aren't doing well Cat. :( I get the same way when I eat healthy food. It sucks because its my favorite! I could eat fresh fruits and veggies all day and night if my intestines would let me.

I'm not doing well today either. When I got up this morning I took stool softeners to try and counteract what the tramadol had done, since I have learned that taking the stool softeners while on tramadol doesn't help. I drank a bottle of water with them, and ten minutes after that I started throwing up. Once that was over I had bad D for about two hours! I know it wasn't just the stool softeners, because I had tossed and turned all night in pain, and ended up with bad D at about 3am. Ugh...that is all I have to say, lol.
 
Allie and Cat, sorry you guys have been feeling so bad lately! :( Heating pads are definitely one of my best friends haha.

GUESS WHAT!!?? AUGUST 17th IS MY PILLCAM PROCEDURE!!!! ahhh so nervous!!!
 
YAY! That's great! Its really an easy procedure, the only bad part is not eating for pretty much two days straight. What prep are you doing? I really hope this gives you the answers you need!

I heard back from the patient advocate, they suggest I call my GI clinic directly and tell them that I would like another doctor to go over the images, but he also said I will need to go in to get the results. I'm hoping another GI will be as understanding and email me the results, if I can find someone to do it for me! I will contact them tomorrow. Fun stuff! Hopefully I will make some progress, I do not know how I will go through a semester of school this ill!
 
I can't believe they are making you wait so long! gosh, I can't wait to hear what they say about your results Allie!! I'm so happy for you!! hopefully some other doctor will go over the results for you, so you can get them asap! :) *praying for some answers for you!!*

The lady said she is mailing me the procedure prep information, so should get it soon. She did mention I will be on a liquid diet the day before and will have to take something over the counter at 7pm that night. then come in at 7:30am and swallow the pill and such. I really hate doing these preps, with the Gastritis it makes me feel SOOO sick after not eating or taking my medicine for that long. and basically doing it for 2 days sounds like it's not going to be very delightful haha :( but I gotta do it!! This could be the solution to all my problems!! Just like Allie!! :)
 
Yup, hopefully all of the trouble the test makes us go through will be worth it in the end. :) Sounds like your prep is very similar to mine!
 
Yeah definitely!! We can only hope!! :)

I found this really useful app on the iphone! And they weren't kidding when they said, there's an app for everything! It's called Bestroom. Where ever you are it locates where you are and finds the nearest restrooms and tells you how many stalls are in that place and everything! VERY useful when you're out and are in worry of where there are restrooms near you. It does it for you! :) Just thought you all should know about that, if you guys have an Iphone!
 
I have an app like that! It is useful!

I also have an app called GImonitor that you can track all your symptoms, medications, and your food history. It can even create charts to show what you ate near the time you had awful pain, and can create reports to email to your GI. It also tells you your quality of life on a one to ten score. Its really handy!
 
Sunshine, that's wonderful news that you get to have the pill cam so quickly! Only one week away! Yeah, the prep is on par with colonoscopy prep and can be pretty miserable, but like Allie said the procedure itself is a breeze. Once you swallow the pill and put on the belt, that's it! You go about your day and return the belt after about 8 hours when the battery runs out. Let us know if you have questions about it, there's a few of us now in the club who are pill cam veterans. And as always, wishing you tons of luck! Got my fingers crossed and will be thinking of you on the 17th. :)

I have a crappy old cell phone that pretty much just makes phone calls so I don't have any apps like what you guys are talking about. My finances have been really tight lately, but my hubby's been actively looking for full-time work (he's been a freelance artist/animator for the past 8 years or so, but lately he's just not getting enough freelance work lately and I'm too stressed with working full time and making my paycheck stretch to pay our bills, so I'm very happy that he's looking for steady full-time work!). As soon as hubby gets a job we're switching cell phone companies and I might get one of these newfangled smart phone thingies and get some apps and stuff. My best friend just got a blackberry and she loves it and I'm kind of jealous, ha ha. She's a crohnie too so I'll tell her about these apps! Are these free apps or do you have to pay for them?
 
I'm really nervous about how big the pill is. I'm not a very good pill taker! And I'm nervous about the gastritis acting up! It does not get very friendly when I don't eat a little something. Of course, just gotta get through it though.

The app that's called Bestroom is FREE!!! :) gotta love that!!

I haven't been to the bathroom in 3 days... Very weird for me. As that's not usually my problem. I've been eating a lot of bread though. Maybe I should try to eat stuff that's easier to digest. Any thoughts?
 
SunshineSmile said:
I'm really nervous about how big the pill is. I'm not a very good pill taker! And I'm nervous about the gastritis acting up! It does not get very friendly when I don't eat a little something. Of course, just gotta get through it though.
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I was worried about this, too, but it wasn't as huge as I anticipated. It was about the size of a good sized vitamin, but it's not hard to get down. I sometimes gag my vitamins down (especially the big uncoated ones), so I hear you, but really it wasn't bad at all. Try not to sweat it. You'll be fine. I was allowed to eat about 4 hours after swallowing the pill. I could have light lunch or something.

Best wishes to you, Sunshine.
 
Mayflower, thank you so much for your thoughts on the pill! I'm glad I'm not the only one who has a hard time taking pills. The good thing, is it's only ONE pill. So once I get it down, it's done!! How did the Pill Cam go for you, Mayflower? Did it show good results? If this doesn't show anything, I'm really not sure what to do or where to go.
 
Sunshine- my results were that there was an area in my duodenum that had narrowed, causing the pillcam to reflux back into my stomach a couple of times before finally getting through. But once that was assessed by Upper endoscopy it turned out to be sharp angulation of my small intestine. He attributed it to my being thin. No ulcers were found or any visible inflammation. I don't really know what's wrong with me. He put me on two rounds of Xifaxan which have kept things quiet for awhile now. I'm starting to have some d and morning nausea/loss of appetite, but I've had a stressful week and thats what I'm blaming for now.
 
Sunshine, I agree with May, the pill cam is a little bit bigger than an average vitamin but it's not crazy huge and it's really not too terrible to get down. I sometimes have problems swallowing pills as well, and I got my pill cam down with my first gulp of water (I have to admit, I surprised myself that it went down that easily!). And as May said, you'll be allowed to eat a few hours after swallowing the capsule. My doctor was very strict - I was allowed one 8 oz glass of water when I swallowed the capsule, then another 8 oz glass of water 2 hours later, then a light lunch and more water another 2 hours after that, and I believe after that point you're allowed to eat & drink normally again. So it's not too bad.

May, you definitely have had a very stressful week, I am not surprised to hear that it's affecting your guts! I hope things calm down now that you're back home again. Take care of yourself and do what you can to de-stress. I find a hot bath works wonders for me, and when I can afford it, getting a massage is super lovely too. :) Hang in there, and I hope you're back to feeling good again soon!

I'm doing better today than I was yesterday, so I'm sure it was just because I wasn't sticking to safe foods. Guess I need to lay off the salad for awhile! Oh, and I have a new complaint about my GI. Well, specifically, his resident. He's got this resident doctor training with him, and he wants her to learn of course, so he has her do most everything (except make decisions about patient care - but he has her do all the leg work basically). The last time I saw him, he told the resident to refill my prescriptions. Well, she apparently didn't refill my Omeprazole (Prilosec)! I had a 3 month supply so I hadn't realized there were no refills until just now. So I put in a call yesterday saying I need a refill, but haven't heard anything back yet. Hmmm. My GI used to have a resident that I really liked, but she must have moved on or whatever and this new resident is not very good. Hopefully she will move on soon too because I don't like this chick. Just give me my Prilosec, lady! I asked for her to double the dosage too, we'll see if she remembers to do that or not.
 
Sunshine, the pill isn't hard to swallow at all. :) They actually coat the pill in something that makes it slippery when you add water.

I was allowed a tiny sip of water with the pill, and only water and sprite until I turned the belt in 8 hours later, so it seems like there are a lot of differences between doctors! I was very hungry by the time I turned the belt in, but then when we got dinner I barely ate any of it, due to not eating for two days because of the prep. We ate at a restaurant on base near the hospital, and the waiter was offended that I didn't eat my food... oops! lol

My husband is fascinated by the technology used, and before we even met he had done all kinds of research and reading on this procedure. He know more about it than I do! I ask him questions all the time.

Cat, I'm glad you are feeling better! I hope they refill your meds in time!

I wish I were saying the same, but it seems like this will be around for awhile. I've had bad D all day and pain, which doesn't usually happen the day after I take a tramadol.. I'm wondering if my flare has just gotten that bad or if something else is up. o_O Either way I didn't do much today!
 
Cat-a-Tonic said:
May, you definitely have had a very stressful week, I am not surprised to hear that it's affecting your guts! I hope things calm down now that you're back home again. Take care of yourself and do what you can to de-stress. I find a hot bath works wonders for me, and when I can afford it, getting a massage is super lovely too. :) Hang in there, and I hope you're back to feeling good again soon!
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Interestingly enough, I have a gift certificate to a spa that I haven't used yet. Thanks for reminding me!! I will have to do that here in the next few days. I've lost a few pounds even. I'm teetering around 120, which is always when people start telling me I'm too thin (just under 5'7''). Ugh.
 
Mayflower537 said:
Interestingly enough, I have a gift certificate to a spa that I haven't used yet. Thanks for reminding me!! I will have to do that here in the next few days. I've lost a few pounds even. I'm teetering around 120, which is always when people start telling me I'm too thin (just under 5'7''). Ugh.
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That sounds like a great idea!

And 120..wow, I am 5'2", and I weigh the same!
 
Enjoy the spa, May! :) Sounds lovely, wish I had a gift certificate. As for weight, I'm 5'8" and right now I'm at about 132 lbs, which is a pretty good weight for me. When my illness was bad and uncontrolled I dropped as low as 115, which is what I weighed when I was like a sophomore in high school (I'm 31 now!). 120 would be too skinny for me too, I need to be at least 125 or people start commenting that I need to eat more and stuff like that. Although I swear some people haven't even noticed the flucutations in my weight - when I tell people that I went from 136 (pre-illness) to 115 to about 140 (Entocort made me gain a bit too much weight back) and now to 132, they act like they have no idea that I had a 25 lb weight fluctuation last year! The odd thing is, I'm not sure if it's the bloating or the Entocort weight shift or a combination, but I've got a bit of a tummy now even though I'm thin. I don't like it! Hopefully my efforts in the gym will pay off and it'll be gone soon.
 
What a great Forum. I am still undiagnosed as well. I have had the EGD and Colonoscopy all at the same time, that showed enough Ick to put me on Pentasa and Pred this all began about 2yrs ago. I being a silly ninny thought these giant blue pills were going to do the trick, and I also was a bit naive about the Pred I was afraid it would masculate me! :eek2: So when I had appt after being on these for about a month I told her no change. (Really in hindsight the Pred is a lifesaver) I said this because I still felt like hell. If you look at another post of mine, I likened my guts to my leg. You never notice your leg until you get kicked in the shins... :duh: So because I was still complaining she decided that maybe it is IBS not CD so to be ever more sure we did the Pillcam, that showed more CD, but she is confused b/c the pentasa should have eased that. And definately the Pred. Well, it DID only I was expecting it to make it GO AWAY. So we moved onto a 2nd opinion a colleague of hers and he put me on the entecort which I have decided I like the pred better :bigwave: The entecort is a little okay. We just had our last Office Visit until October. I am scheduled in Sept for a Dbl Balloon Enteroscopy. She has recommended that I discontinue the Entecort until that goes down just so that I am really inflamed and sick in there when they look.
I on my own decided to stop the pentasa about the same time a week ago. I think I am going to put that back into my pill box. I have been sliding pretty rapidly the last two days. This morning I had a full blown 'Episode' - Sudden heat cold sweat all over, I had to run to the bathroom strip down and grab a towel b/c I was balled up and when I was projectile vomiting yellow foam :puke_r: I was hitting the side of the wastebasket and toilet bowl as oppposed to into it, So I buried my face in the towel. This type of pressure and contracting of the muscles usually causes me to evacuate the other way too... :awe: This whole ordeal lasted about maybe 12min? So C'mon folks what would YOU call this? So anyway my Dr is also on the fence if I have IBD or IBS :O But I have to take some responsibility. I think my being so naive about it all really gooked a lot up. I have a better understanding of what I have and that really if it is either one of them it is NEVER going to completely go away. Just one has the potential to really get nasty... Thanks For Reading!! :eek:utahere:
 
Hi Gidget, welcome to the club and I'm sorry to hear you're feeling so awful. Projectile vomiting and diarrhea together are never a good sign! It could indicate an intestinal blockage or partial blockage. If I were you I'd either call the doc or go straight to the emergency room. Especially go to the ER if it continues or worsens, or if you get new symptoms on top of everything. Good luck, please keep us posted on what you end up doing! Worried about you and hoping you feel better very soon.

If you're in a flare this bad, you might need something like pred again. My understanding is that Pentasa is very mild, Entocort is also mild but slightly stronger than Pentasa (it's a steroid like pred, but it's not a systemic steroid like pred is), and of course pred is pretty strong. It doesn't sound to me like you can keep going like this until September for your double balloon endoscopy. It definitely sounds to me like you've got more than IBS - for one thing, you wouldn't have had any response to pred or Entocort if you've got IBS. I believe Pentasa only works on IBDs like Crohn's and Colitis as well.

It sounds to me like you're pretty close to a diagnosis, and might just want to clarify some things with your doctor (like the fact that pred worked, just not as well as you expected). Good luck, keep us posted on how you're doing and if you go to the doctor or ER. Feel better soon!

Edited to clarify: I know it sounds odd to say that having diarrhea sounds like a blockage, but from what I've read on here, it can definitely happen. Apparently d can flow around the blockage, but anything solid hits the blockage and either adds to it or goes back out the way it came in. And all of this is apparently incredibly painful. I've never had a blockage myself (knock on wood) but I've read many accounts of them on the forum. When you mentioned vomiting and it coming out the other end as well, that worried me. So I thought I'd mention and clarify this.
 
Mayflower, That's good that they found something with the pill cam though! But that's crazy that it wasn't gong through right away and kept going back into your stomach... sounds intense. But like you said it's frustrating because you don't know what's wrong with your body still. ENJOY THE SPA!! Sounds so peaceful and amazing especially when you've had a lot of stress lately!

It's weird I usually have morning nausea as well. I wonder if the "irritation" my doctor saw in the endoscopy a month ago was maybe do to a little narrowing of the duodenum so the food would start to go out but then it would come back and cause irritation? I have no idea, just thinking of what kinda makes sense hahaha. It's so hard when you're undiagnosed because everything someone says or research you do you're trying to help yourself and figure out what's going on.

Allie & Cat, thanks for making me feel a less stressed about the pill cam. I think I can do it! :) I'm feeling much better about it. I just hate the not eating part of all of it because of the Gastritis... ughhh. Just gotta get through it!! :)

Gidget, sorry you have had such bad flare ups lately!! But it definitely sounds like you're getting somewhere with these tests and meds! I hope you get diagnosed soon so you can get your flares under control!

What is a Dbl balloon Endoscopy???
 
Sunshine, I'm not exactly sure how a double balloon endoscopy works (I haven't had one of those myself), but my understanding is that it's kind of like a regular upper endoscopy - tube with camera down the throat - but somehow it can see all of the small intestine. And I believe it can take biopsies too. It sounds like a really great test, since it can see everything AND take biopsies, but for some reason most docs don't seem to like to do it. I asked my GI about it and he said that's probably not something we'll be doing, and just left it at that. I think it involves heavier/longer sedation and probably more likelihood of puncturing the intestines with the scope, since it would obviously take a lot longer to do and would go through a lot more intestine than the usual scopes would, so that's my guess as to why doctors don't like to do it.

Sunshine, with regards to your gastritis, are you taking anything to treat it? I was told by a GP that gastritis is often successfully controlled by taking acid reflux meds. Apparently if you get too much acid in your stomach, it can start to eat away at the lining of the stomach which can aggravate gastritis and cause more stomach inflammation, more pain, etc. So reducing the amount of acid allows the inflammation to go down and the stomach to somewhat heal, although I was told that gastritis basically never completely goes away. Since I've been on Prilosec things have been a lot better, although not perfect. I was on Zantac (which is a different type of drug and apparently doesn't work nearly as well as Prilosec) when my reflux and gastritis first got really bad, and switching back to Prilosec helped a lot. Prilosec isn't really recommended for long-term use though so you should probably ask your doctor about all this.

Oh, and my symptoms are usually worst in the morning too, I think that's pretty common with stuff like Crohn's. Even on the days that I feel fine, I have no appetite in the mornings and I get nauseous if I try to eat before at least 10 or 11 AM. I can handle drinking water, Ensure, or tea in the mornings and that's about it.
 
Cat, that double balloon endoscopy sounds very interesting and sounds like it would be a great test to do. But I can see why some docs don't want to do it.

Cat, I'm taking Carafate for my Gastritis. It helps, but when it's really bad if I take tums, nausea syrup, pepto, and zofran it doesn't help the nausea and the acidic feeling in my tummy. and when i do preps, he said i'm not allowed to take my Carafate medicine for it, so it's just going without ANY meds and it kills me :( I just cry for hours. During the colonoscopy I cried more than I have ever cried because of it. That's why I feel like it's weird because most gastritis patients don't have that bad of pain and discomfort... so maybe something else is happening too. I usually don't have the appetite to eat until about 2pm. which is bad, but if I don't feel like eating I don't want to force myself and then be sick.

Also, just got the biopsy results back from the colonoscopy... everything's NORMAL. this stinks! My mom actually went into his office though today because she has to schedule a colonoscopy with him, and he told me to get a CT scan for my small bowel, abdomen, pelvic mesenteric with angio gram protocal done and some more blood work before we do the pill cam next wednesday. He wants to check for Serum Serotonin in my blood work, I don't know what that is for. have you had that checked or know what it checks for?
 
I just read the wiki article about the double balloon enteroscopy. It's a pretty good explanation. short story: it takes a long longer, 3+ hours. It has some potential complications that other procedures don't. biopsies can be taken, medicine can be dispensed, etc, since it uses a scope (as opposed to the pill cam). the balloons are used to pull/push the scope into the small intestines.

http://en.wikipedia.org/wiki/Double-balloon_enteroscopy
 
Sunshine, how long have you been on the carafate? I think it's helping me, but boy is it a pain to try to schedule everything around the doses. Does it cause you any constipation? I went from D to C within a few days of starting it! I also get a lot of pain from the gastritis which is somewhat lessened by the carafate. I feel like the nausea has cut down on severity but it isn't gone, and sometimes it acts up really bad when I try to eat still.

It's definitely working in some ways. For instance, the constipation it's causing is keeping my pills in my body! I was pooping at least half of them out most days.

I'm sorry to hear everything came back normal on the colonoscopy (boy, doesn't that sound weird?!). He may want to check the serotonin for carcinoid syndrome. the slow growing tumors in that syndrome give off serotonin, the level goes up as the tumor grows.
 
Hi Cat Hi Sunshine! Thank you both. I am still feeling quite quake like inside all jittery. I do not have a fever, or anything. These 'episodes' are what brought me to the Dr in the 1st place in April 2010. I was experiencing these about 2-3 times a week, since the med trials it has been reduced to only 1 or 3 times a month. I have to blame myself for this one I think. My bad thinking I could experiment with the pentasa! I am at least pretty sure that if I stop it again 7 days before the procedure that I can almost count on a flare up. I would love to do the pred again, but she wont do it until I have the Dble Balloon.
A double balloon is where they go in and inflate a balloon and then a scope can look around more freely they do this in sections and I have been told different things about how long it can take, I at first was told 6-8hrs! Yikes! I was walking around thinking about planning muy funeral for about 2wks thinking noone can expect good odds being under for that long. But my DH had the wherewithal to ask my DR to clarify how long. She said 1 hr, another consult told me 2-3hrs. In any case I am still nervous but optimistic. I didnt suffer too much after the colonoscopy and the EGD. Yes, I am pretty fortunate with my Dr she is actually not a Dr but a ? PA and very thorough. I remember when she told me for the 1st time that she thought it was Crohn's, she had like a little light in her eye! :LOL I mentioned it to DH later and he saw it too, we thought wow on her behalf it must be pretty exciting. I think I was her 1st 'Major' diagnosis. B/C she also stared at me a long time after she said it and when I was finally able to speak my voice cracked some and I admit I welled up some from the enormity of the word 'Disease' she rushed over to me put one hand on my knee and the other around my back and patted me. Then she said there there, I was waiting for it to sink in. We will get this worked out. So I think my Dr is pretty good thank the Dr Gods! :applause:
 
Carrie, I've been on carafate for about 2 months. and when i first started on it i did the exact same thing! I went from D to C in a few days as well. But now, it's back to my normal D habit because my intestines probably finally got used to digesting it. It's definitely helping with the gastritis, but like you said sometimes the gastritis really acts up and zantac or anything won't help it. But especially when I do a prep and I can't eat or take any of my carafate, my nausea and everything gets TERRIBLE. But, I have to just get through it, and know that it's for the better. so that i can hopefully get diagnosed one day.

I have my CT scan scheduled for Friday to check the small bowel and abdomen. then blood work after that. I wonder what he is checking for and what he thinks is going on. He's probably checking for carcinoid syndrome and many other things by getting the serotonin checked. Thanks so much for the advice, Carrie!! Greatly appreciated!

It's incredible how many symptoms a person can have, and how many different diagnosis can be made. Now I know why digestive problems are the hardest to diagnose.
 
Gidget, that is just so exciting! I'm glad that your PA and your doctor are on the same page, and are thinking they know what's going on!! what great news to hear!! :) I know it's usually not a good thing to find out you have something wrong, but in these cases of being undiagnosed for a long time, you almost want something to show up so that you can be treated and get help! So, congrats!! I think the double balloon sounds really cool and sounds like it will show a lot! Good luck with it!!! :) *hoping for answers for you!*
 
The GI has me on 80mg of prilosec a day (two doses of 40mg - OTC is 20mg) so the doctor said I can't take anything else antacid-wise. are you on anything regularly for it other than the carafate?

My GP checked me for carcinoid syndrome last year sometime, but he did the 24hr urine collection. I had to pee into a 1/2 gallon jug! Of course, it all came back negative to which he told me that it doesn't 100% rule out carcinoid because a tumor might not give off enough serotonin to raise the test to abnormal until its bigger, but he didn't think I had it anyway.

The symptoms get so confusing because they span so many different body processes. My endocrinologist is always trying to get me to only tell him the symptoms he cares about, but how am I supposed to know what those are? Plus, I think he ought to care about all of them since they're all coming from the same body, but you know.

I hope you find something out with this next round of tests!
 
Gidget, Welcome to the club! It sounds like you are close, just need to clarify some stuff with your doctors. That stinks that saying you were still suffering made them think it wasn't what they thought, even with the proof! I hope the endoscopy gets you some more solid proof and you can get it all sorted out.
 
Carrie, I'm not anything else for the chronic gastritis, just carafate.

I don't think I would have carcinoid either, but he is being great, because he is trying to check for anything and everything. I think he's making me do the urine collection too. I feel like I'm kinda coming to a dead end though. because I have the blood work, ct scan, and then pill cam. then what do I do if it's all normal? :( Of course hoping that there's a sign of something to point us in the direction of a diagnosis, but you know, what if. Just gotta be patient, very patient, and think positive. That's all you can do!
 
It's hard to be patient and think positive isn't it? I try not to get my hopes up too much because of all the dead-ends I've already hit. When I got my upper endoscopy and found out I had an ulcer and severe gastritis I really hoped it was h.pylori because that's an answer, but no. it wasn't. I felt more let down from that than I ever expected, because it ended up being another one of those, "well we don't know why you have them..." I've been treated for chronic gastritis since 2003 without it going away, but maybe the carafate will be successful.
 
Oh Thank you everyone!!! I am very greatful. I am also a Squeeky wheel.. Ha ha . . I just remembered that I also had to have an ultrasound on my stomach b/c in the images from the Pillcam and something from the colonoscopy showed that I have bruising UNDER the inner layer of my stomach lining. Also present the same way; UNDER the inner layer of intestine <-- Whichever one they saw in the colonoscopy. They appear as clusters if red/blood dots. When we did the Ultra sound she was listening to see... if there was abnormal circulation. There was none. So that one is still a mystery too. OH Also :LOL Sorry.. I have above my belly button on the right and slightly under my ribcage a slight very very slight bulge. It doesnt hurt. And I seem to remember in my 20's having the same thing only more pronounced. No discomfort. No change in color or temp of skin. Back then I was obsessed.. youth... And I think it was present for about 5-6mos before it went away and I havent thought about is since. Aliens? :LOL Can't be a tubal.. I am proudly Post Menopausal since 37yrs old :p
 
Carrie, I completely understand. It is so hard to think positive, because I have been let down a lot too. I try not to get my hopes too high as well, but it's hard when my mom keeps saying, you'll get better, this will be the test! but then, everything comes back normal. gosh, so frustrating. I wonder what he's going to want to do after the pill cam if it comes back normal...
 
I completely understand too...being positive is frustrating and difficult! I haven't let myself wonder too bad with the daydream of what will happen if the pill cam showed something. I'm pretty much trying to act like they wont find anything. I was devastated after my normal colonoscopy, and since then I have only had one major test (the rest I had in the hospital were doubles), which was a SBFT, and I expected it to be normal...and it was! I think there are advantages to not getting your hopes up, but at the same time it makes this process a huge rollercoaster...
 
Wow, a lot of posts recently! I'll do my best to respond...

Sunshine, sorry to hear that the biopsies didn't find anything. Glad to hear that you get a CT scan so quickly though. CTs are really easy to do, you will most likely have to drink some stuff beforehand (like an hour before the scan) but the good news is that it's not nearly as bad as colonoscopy prep! I was told that the CT contrast stuff often constipates people, but in me it had the opposite effect and I was running for the bathroom the instant I got home. Also, they'll probably inject you with some stuff during your CT. It's kind of weird - it makes you feel very warm for about 30 seconds, and it also makes you feel like you peed your pants! It's disconcerting but the feeling doesn't last long. So anyway, good luck on Friday! I hope it all goes well!

Carrie, wow, you're on a high dose of Prilosec! I was on 20 mg once daily but that wasn't keeping everything totally under control, so I just got word today that my GI is bumping me up to 40 mg for awhile (20 mg twice per day). I'm hoping that works, I've been on 40 mg in the past and it worked well for me previously. You must have really severe gastritis/reflux if you're on 80 mg! I assume you're taking calcium supplements too? Antacid meds are notorious bone robbers, so if you're not taking calcium, please do! I like the chocolate calcium chewables, so much better than the big chalky tablets.

Gidget, I've never heard of bruising in the inner layers of the intestine - but I know that Crohn's can affect all layers of the intestine (whereas Ulcerative Colitis just affects the one innermost layer) so I would imagine the "bruising" was Crohn's damage that was being seen? I don't know what else it could be. At any rate, I hope the double balloon endoscopy gets you some solid answers! Keep us posted!

Allie, any pill cam results yet? Have you heard anything about if another doctor can look at the results and get them to you?

Star, how are you today? Thinking of you and hoping you're having a better day. Not much longer till the 22nd, hopefully the new GI will be great and all your test results will be back. Hang in there!

I'm doing quite a bit better today. Still not quite back to feeling fine, but doing a lot better. I went to the gym today and I could do every weight lifting machine except for the abdominal machine. I tried it, but the abdo pain was just awful when I tried! It's upper abdo pain too, feels like the gastritis is kicking up. It doesn't hurt now, it only hurt when I was trying to exercise. So that's weird. I usually go to the gym Mon, Wed, & Fri but I've got a physical therappy appt this Friday so it's just as well, I'll take a few days off from the gym and hopefully my abdominals will be ready for exercising again on Monday. I did get my GI to refill and bump up my Prilosec to 40 mg so that's good and hopefully will help too. And I promise to avoid salads, at least for a little while. ;) It still seems odd to me that salads and fruit hurt, but junk food and unhealthy food is much easier on me. It makes no sense!
 
Cat, yes I have my CT scan and my blood work being done on Friday! I have to drink that stuff you are talking about, ewwwie, but at least there's not a huge prep the day before!! It's just not eating the morning of. So much nicer. this should be a breeze! I'm so confused why non of my previous GI doctors ever had me do a CT scan before. but, i'm glad this doctor is finally doing that.

Had some Ramen soup for lunch, and now i'm in bed curled up. Not feeling well, really crampy. Glad you are feeling a little better, Cat!!! :) Gastritis stinks! :( It's very weird that unhealthy foods do better in our tummies then healthy ones do! My mom joked around earlier, and was like what do you want for dinner, and I told her I wasn't feeling well. So she said okay, cookies and milk tonight! hahaha, i love her! So funny!

Allie, I'm so eagerly waiting to hear about your pill cam results!!! We're all rooting for you!
 
Joining the Club!

Well, I'm in the middle of testing. Had a CT scan last week and will have endoscopy/colonoscopy in a couple week. Been too scared to go get my blood test done, as well as stool test.
Will do it tomorrow. Unfortunately, because of how much work I've missed, my boss stopped scheduling me, and I'm not scheduled again for a couple weeks. This really hurts, because my boo just got laid off last month.
I haven't eaten in 4 days. I know this is bad. I really do. But I have been drinking fresh veggie/fruit juice.
Also, I've noticed more blood in my stool.
And when I got weighed at my GI appt I found out I've lost 30lbs in two months.
So I'm in this club, but hopefully not for long. Though you know how it goes with getting a diagnosis.
My GI thinks it's either IBD or Auto-Immune Disease.
I've been thinking Crohn's due to the research I've done.

Today is a record high for bathroom visits! Which is not lovely because our complex has the water off for maintenance. Well I guess it's never lovely.

Do you know of any Auto-Immune that would cause symptoms in the intestine? I am high risk for MS because of optic neuritis a few years back (which left me colorblind in one eye). I've had other symptoms of MS for a while, such as migraine, nerve pain, etc.

Because of my financial situation (and the fact that I sill have tons of medical bills coming... insurance ran out already for the year), I haven't been able to afford any of the medication that was helping even a little. Now I wait. Trying not to think of what a diagnosis would mean, but how can I? 22 is pretty young. And none of the possible dxs are a good outlook. Yeesh.

Ok. I think I'm done.
Yell at me for not eating, maybe it will motivate me to choke food down.

dahlface

ps. you're all sweethearts!
 
Cat, I haven't been taking calcium but I know I should. I'm also on 5000UI D3 a day because my vitamin D won't stay up. At some point I need to ask for a bone scan but it's just one more thing on the list. I'll look for chewables and see how I do with it :) I've been on 20mg of prilosec, otc prevacid, both at the same time, with and without xantac, rolaids, and tagamet. After my upper endoscopy, my GI put me on 40mg of prilosec which didn't do anything. So now I'm on the 40mg twice a day and carafate 4 times a day. I haven't been able to hit 4 times in a day since the first day or two. It's very hard to schedule :/

I had pasta for dinner. It seems like I eat pasta all the time, but it's something I can almost always tolerate if I can tolerate anything. Like a dummy, I tried to eat some cucumber at lunch today. I love cucumber but they're killing me when I eat them *sigh*

My nausea was ridiculous until I started the carafate. I haven't needed to take any phenergen since I went on it. Even with the phenergen I still had issues with even putting food in my mouth and making myself swallow it. That hasn't popped back up (crossing fingers) since the carafate, and it used to happen most days. I'm still nauseous but it's usually at a low or moderate level as opposed to half a step from the toilet. definite progress.
 
Hi dahlface; it's not ideal going without food for so long but we understand, really we do! It may be worth looking into proper liquid supplement drinks, being in the UK I don't know what is available in the states, sure someone else can give you the names.

I am still carrying on (somehow). As far as I know Rheumy is still trying for PET scan; but it's been over 6 weeks and by now there would have been a funding meeting so unlikely. It would be nice if new GI wanted me to have it too but Rheumy was very honest with me, you get one based 100% on funding, and not clinical need, and the last patient he applied for one was denied. But as I said, that whole GI department sucks so I am expecting nothing. Just going to ask for test results, is he satisfied it's IBS, then can I see you every few months to remain an active patient etc etc. Five minutes in and out I bet haha.

Joint and abdo pains up and down at the moment... went out today but only because I had to, with the pains and ill feeling I had today normally would have stayed at home, but needed to get stuff done. You know how it is!

:soledance: (just because I noticed this neat new icon!)
 
dahlface and StarGirrrrl - There's ensure and boost in the states. You can get regular, glucose control, extra protein. They've really branched out, it's gotten a bit confusing :p I used the boost glucose control. If you need glucose control, don't get glucerna because it's gross! I really only like the chocolate ensure or boost. I might be picky.
 
Crohn's Mom, I know! I think you two are a lot alike thinking that cookies are an excellent dinner! :) haha I love it. If it's the only thing I can tolerate at that moment, it's better than not eating anything at all!! :)

Carrie, carafate is definitely amazing when it comes to calming down the nausea! Since it's hard to eat 4 times a day, my GI said I don't have to eat a lot, even just a snack like a cracker or something if I can't eat much. He even said the last time I take it, to take it before I go to bed without any food. Maybe that would help get it in 4 times a day.

Dahlface, so sorry to hear you are not doing very well and haven't eaten in days :( at least you are trying to get some stuff down. that's good! I totally understand how you're not able to go to work... I had to stop school for now, because it's so hard to sit through classes when I have to leave all the time to use the restroom. It's good to hear that your doctor thinks he may know what's going on. Hopefully you get your endoscopy and colonoscopy done soon! and your blood tests! Keep us updated! :)
 
Been sick all day.. lazing around in the bed snuggling with my pugs, I just had a major need to feed! The only thing I found remotely appetizing was a small bowl of insta-smashed potato's! :D That was 10min ago and so far so good! Now; GO EAT Dahlface!!! :emot-nyd:
 
Sooooo this is kind of weird... Just ate and then I looked at my stomach and I have little red dots all across my upper stomach. I've never noticed that before and I wonder if it's a sign of anything. Or has anyone had that??? It does not itch, it's just red little dots all across the upper stomach... Very weird.
 
Sunshine, the CT scan really is a breeze! I've had two in the past, both in the ER. The stuff you drink isn't had at all...its actually tasty compared to bowel prep or barium. The nurses were surprised both times with me, I had the entire thing down in minutes!

I called the GI clinic today, and the receptionist was really sweet! She remembered me from my test last week (hard to forget a tiny blond chick walking around with a giant belt I guess ha ha). She said she was going to discuss my request with the head GI and see what they can do for me. I'm hoping they are able to get my my results sooner!

Dahlface, welcome to our little club. I agree with star, liquid supplement drinks might be a good idea for you! They can help you gain that weight back. I drink chocolate ensure too when I can't keep anything down (or just plain inside me ha ha). I'm also 22, and I understand how confusing it can be to get this sick this young. Unfortunately IBD strikes young; I started getting sick at 15, which is an average age of people with IBD. As for other autoimmune disease that effect the digestive tract, I know of one: Addison's disease. Some of us here have been tested for it, due to the fact that it can also cause diarrhea and weight loss. When my GI was at a loss of what might be going on with me, we brought up all autoimmune diseases it might be. I was not tested for addison's due to my potassium and sodium levels being normal. My GI also brought up Lupus several times, but I don't have much information on that one! I hope your upcoming colonoscopy and blood/stool tests show what is going on so that you can get on the mend!

Carrie, pasta is one of my safe foods too! I feel like it is all I eat. o_O
 
As it seems like all hope is not lost for the PET scan. Had some copied letters through from Rheumy. Apparently it is a "tortuous ratification process". But the person who decides is away until early August, and then Rheumy is on annual leave until late August. So I think there may be hope- yey!

Also he has contacted Radioligists at another, bigger and better hospital to see how they would advise we proceed with imaging.

He has also contacted Haematology to see if they would reccommend a bone marrow biopsy and aspiration. Which has scared the hell outta me I have to say, even though I keep telling myself it'll be another dead end!

Oh and the best part is, apparently on my CT one lymph nodes could arguably be considered enlarged measured against conventional measures. Didn't specify where- I had pelvis, abdo and chest scanned.

Also I didn't see the stool test/pancreas issue mentioned anywhere so I will send him an email, he did get a copy of the GI's letter who ordered it, but the poor man is probably snowed under by such letters concerning me!
 
Star, that's excellent that there's still a chance for the PET scan! Please keep us posted, I really hope it's approved! And it sounds like your Rheumy is really on top of things, even though that bone marrow test does indeed sound scary. Why is he interested in testing your marrow? And what does a test like that involve? Hopefully nothing too horrible or painful. I know that bone marrow donation has gotten a lot less invasive and painful than it used to be a few decades ago, so hopefully this test isn't too bad either. When do you see your Rheumy again? I assume all of this stuff will be discussed in greater detail at your next appointment with him?

Allie and Carrie, pasta is one of my safest foods as well! When I flare I like to have buttered pasta. I am lactose intolerant but for some reason butter never affects me (milk and cheese are just murder on my guts though). So yeah, I just cook some pasta and melt some butter into it and mix it all up so that all the pasta is coated in butter, it seems like it'd be too rich for a flare but it's always easy on my tummy. I can do spaghetti sauce when I'm feeling okay, but in a flare tomato sauce is not my friend so I can only do buttered pasta then. I also do a lot of my tuna-pasta-mayo concoction. Oddly I can handle mayo in a flare, that seems like it'd be too rich or fatty as well, but it never bothers me.

Dahlface, welcome to the club. I agree with the others, if you can't eat solid foods right now, please try something like Ensure or Boost. Drinks like that have a lot of vitamins and calories so you can keep your strength up when you're not able to tolerate real food. I personally like milk chocolate Ensure, with dark chocolate being a close second. I have heard good things about Carnation instant breakfast as well but I haven't tried that one myself. Any drink like that will contain good stuff though (a lot of sugar too, but when you're not eating your blood sugar is probably dropping anyway so it's not a terrible thing).

As for your insurance running out and you not being able to afford your meds, there's a few avenues you can try. Your doctor or hospital should allow you to set up a payment plan, and you can also ask them about financial aid. The first year I was ill, I racked up thousands of dollars in medical debt even with insurance, and I applied for financial aid even though I didn't meet the qualifications. Guess what, I was accepted anyway and my medical debt went down to zero! It was wonderful. As far as meds go, your doctor might have free samples that the drug reps give them that they could give to you. Also, check with your doctor, pharmacist, or the manufacturer of the drugs to see if they offer any kind of programs or aid to help get your meds for cheap or free. Good luck! Sorry you had to join this club, and I hope you get some answers soon, and in the meantime please stick around for lots of support & info. :)
 
Cat, I only use a tiny bit of pasta sauce, just enough to make it kind of orange, and that seems to be ok. I can't do mayo most of the time. I can usually do butter.
 
Bone Marrow testing is done I think for cancer or blood disorders, that kind of thing. Even though I have been told by many Drs i do not have cancer, I can't help but worry, as there is a family history. I know if I had had cancer 5 years ago when this all started I would probably be dead now lol, but I can't help but think if it started off very very small, it could fit. But trying not to think about that. They would take a sample of the solid bone marrow and semi liquid bone marrow, by sticking a giant needle thing into my hip. But the area would be numbed and they might even send me to sleep. Would leave a wound requiring a dressing for 24 hours.

It's not a nice procedure, but honestly the upper endo was my worst fear test so I feel I can go through most things now lol. And anything which is non-prep is great. May not even have it anyway. I still think it is a bowel issue causing other symptoms, or something that is affecting my intestines and organs. Sometimes I just don't know what to think!

I think the interest is because while thus far scans haven't revealed anything specific to biopsy (which was the hope for CT scan), he is still thinking that biopsied tissue would be something good to do, as he said in the copied letter I got, "in the ballpark of trying to get a dx from tissue sample".

Yes think will discuss this all when I see him again in 4 weeks exactly. I would like more details myself about this, and want to ask about that lymph node, interested in where exactly it was.

I am getting rather fed up of getting half bits of info from tests, not the first time it has happened. I think the solution would be to read the reports myself while I am in clinic. I can view my medical notes but it is a long process here in the UK. My Dad who lives in the states told me he could walk into GP's office and have a look. I was like, wow!

Did email about the pancreas issue and he is now away until the 22nd August. I hope he has a nice break, he sure deserves it!
!
 
Star, I also have a family history of cancer (my mom's mother died of breast cancer and my mom's father died of colon cancer, and they both died relatively young in their 50s or 60s). It's scary stuff to think about, especially when your doctor is talking about lymph nodes and bone marrow testing! I hope you get the all-clear in that regard, I know we all want a diagnosis but I think we can also all agree that that's a diagnosis nobody wants. I don't know a lot about cancer but like you I would imagine that it couldn't lurk for 5+ years without you dying and I certainly would think that it would have been detected already if you did have it. I know it's easier said than done, but please try not to worry too much about cancer. As my GI said to me before my colonoscopy, it would be really rare for someone my age (30 at the time) to have something like colon cancer. That's not to say it couldn't happen, but it's extremely unlikely.

And you're correct, here in the US you can request a copy of your medical records and it's an easy process. Some doctors will charge you a small fee per page (I believe my doctor charges 10 cents per page) so it can get a little pricey depending on how large your file is, but it's just a matter of making a phone call, finding out how many pages it'd be (they can give you the full amount or just a smaller summary with fewer pages), making a payment and getting it mailed. I believe there's an online system too where you can look at your medical history electronically or have it emailed, although I haven't taken advantage of that yet. But this reminds me that I really should!

You've mentioned your father is here in the States and you've said in the past that he has (or had?) decent insurance. I don't suppose there's a chance you could move here for a bit and get on his insurance? There is a new law here that was passed recently, that anyone under age 26can get on their parents insurance - even if they're not living with their parents, or if they're married, or whatever, they can still get on their parents' insurance until age 26. Just thought I'd mention it to you on the off-chance that it's a feasible option for you. My brother just turned 26 so he has to come off of my parents insurance soon which is what reminded me of this.
 
Star, they have mentioned cancer with me too. Every doctor when I first see them say Crohn's or cancer, even at 15. I think by now, more than 6 years later, it would have either killed me or showed up on a test too. I have family history of cancer too, colon, pancreatic, and skin cancer. I think it is also scary that there is a statistic that it is common for IBD patients to get colon cancer sometime in their life! :(

That stuff was awful, wasn't it Sunshine?!? I couldn't believe I was having to down cup after cup of that stuff. I was super nauseous the morning of the test anyway, so they had to give me a bucket because I was really close to throwing it all back up! I had a great nurse with me though, it turned out she was a patient of my GI too, and was having a colonoscopy in a few days with him. :p We were able to talk about everything and she made me feel better while I downed stuff that tasted and looked like Elmer's glue!

So I spent the entire day packing, and while I was going through my stuff I found medical records from when I was a teenager! I had blood tests and notes from my GP when this all started. I have a referral from when I was 15, saying I needed to see a GI ASAP because of nasty mouth ulcers and abdominal pain....obviously didn't use it...then another from the same doctor at 17...says 2 years of abdominal pain and ulcers...needs to be evaluated and treated immediately...yeah didn't use that one either. I cannot believe I was so naive to think this was just going to go away. I was so nervous about the possibilities that I just tried to ignore it for 4 years...gosh, I wish I could change that! If I had been able to catch it earlier than this it could have made things a little easier to control. :/ Oh well, can't change it now. The blood tests they did were normal except my sodium was low. They never checked CRP levels though.
 
Cat, I didn't know about that new law!! O.O My parent's insurance was way better than the military insurance I'm on now. That's incredible! I know it wouldn't help me to switch being in Germany, but that is neat that they passed that law.

Yeah, medical records are easy to get here in the states. I have my own copy of my CT scan of my ruptured ovarian cyst, my ultrasound, blood tests, etc from my OBGYN, and from two of the ER's I went to in the states. They are very interesting to read...they don't always tell you everything! I think I'm going to try and collect my records from my GI and from the other ER (which was another CT scan) just to see if anything pops out at me. :p Its good to have them for other doctors anyway!
 
Allie, I know the cancer statistics are really scary even for people without other illnesses. I read a really scary statistic recently that said that, over the course of a lifetime, the average (in other words, not Crohnie) person's chance of getting cancer at some point in their life is 1 in 2 for men and 1 in 3 for women. So even normal healthy women have a 33% chance of getting cancer at some point, I don't even want to know what the odds are for people like us! And of course the Crohn's meds often carry increased risk of cancer in themselves too. I know for sure Imuran/Azathioprine does, and I believe the biologics like Humira and Remicade to too. And CT scans expose you to a fair amount of radiation which could later cause cancer. It's just easiest not to think about, because it's so scary! The good news is, I believe that as probable Crohnies we're most likely to develop colon cancer, but for us it should be caught early on since we get so many colonoscopies. So at least there's that.
 
That's very true, at least with us we are so in tune with our bodies we would know something was up, and even not routine tests should catch it! That's crazy that so many people get cancer..it never seems that way!
 
Hey Guys!

Hi Everyone...
Sorry I haven't posted in a while, but I have been in here everyday lurking and reading and getting to know our newbies. I am on pins and needles to find out he results of Allie's pill cam- so make sure you let us know.

I am safe and sound- doing a little better. I have not missed a day of work in 2 whole weeks- a record for me these days! My stomach ulcers are a little better and my "IBS" problems are still bad, but I am really stressed because of work and some other personal issues. You know how it is- good days and bad days. I have to say that mornings are the worst- Cat do you have that problem. Anybody else- my friends on here who also have Gastritis? Let me know. I am super duper sick when I wake up every morning- and stay that way for about 1-2 hours. Guess the stomach acid is all backed up or something. I am so nauseous and have that burning pain- I HATE it!!! :yfrown:

But I just wanted to send a quick hi- to let everyone know I am still alive and kicking, and even if I don't post, I am HERE-hehe. I will be checking in on you guys. :thumleft:
 
Just popping in to say Hiya!
My heart goes out to you all, you're all wonderful!
I wish I could do something to help, but I can't, so....
Sending big hugs your way!
Take care
xxxxxxxxxxxxxxxx
 
Have my CT scan today in 4 hours. Really nauseous and cramping badly! Then when I get there I have to drink that stuff! Ughh :( I wish I felt better to begin with.

Hope everyone has a wonderful tummy day!
 

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