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margie

margie

Joined
Feb 21, 2011
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369
Pill Cam results came in on Friday. My GI doc said that he saw something in the small bowel, not sure if it is an ulcer or something else. I am now scheduled for another night of no food tomorrow after 6pm and only water until midnight. I go for the Small Bowel Series on Tuesday morning. The test I guess can be anywhere from 3-5 hrs.

Sure hope this one can give me some answers, because I am really getting weaker and weaker every day. Not to mention soiling more underwear because of being out and not making it to a restroom in time.

This morning in about a 3 hr time frame, I had to go to the bathroom at the very least 10 times. Soooo very tired now, and yet can't sleep because of crying in my sleep that ends up waking me up in tears because of the pain.

I just want some answers and some help with all of these symptoms.

Trying so hard to hang in here, but it is getting harder every day now. I almost passed out in the shower this morning, and blacked out walking down the hallway to the kitchen.

Sorry just needed to vent and talk with someone that understands what I am going through. I know that I have done nothing but whine lately, just can't help it. So very sorry, because I know all of you have your own pain and suffering that you go through too.
 
So sorry to hear you are feeling so awful! The physical pain and suffering can really drain us mentally too. I hope you find out how severe your flare up is and get the proper treatment asap! Know you are not alone! I have been there before. I hope you are going through the worst now and things get better.
 
Hang on in there, Margie, and try to rest is much as you can. I know it's very tiring and stressful being ill and feeling that there is nothing you can do about it. Hopefully this coming batch of tests will get you on the road to recovery.
Helen x :hug:
 
I sure hope so Helen, because these last 3 months have been horrible.

Thank you both for your support when I need it. I am usually not such a whiny person, but this is horrible.
 
You poor thing Margie, you've been to Hell and back lately!
Really hoping you get the answers you deserve, if not, then SCREAM the bloody place down! Just don't get sectioned!
Fingers crossed for you
xxx
 
ha ha Margie!
Being sectioned means being carted off by the men in the white coats! (under the mental Act)
I nearly did! The GP thought I was crazy when I laid down and screamed for an answer, but I got my referral to gastro and the rest is history.
I should've got an Oscar!
I'm such a drama queen!
xxx
 
Good luck on your test tomorrow, Margie. If it's the barium stuff, make sure you drink lotsa water to flush it out afterward. Hoping you get some clear results with this one. :)
 
lol Joan, thought the other was going to do that when I first got sick, kept telling me to go to a Psychiatrist, told him he was the crazy one and that I knew my body better than him. I figure I can play their game too. ,

Marisa,
Thanks, I sure hope this is the last test I have to go through to get some answers.

After vomiting last night violently and again hovering over and sitting on the toilet today, I have been good and am eating a small bland meal for dinner and nothing after 6pm. Long night tonight and hopefully won't take 5 hrs for the test tomorrow or going to be exhausted when I get home.
 
Good luck Margie! I wasn't even there 2 hours for mine so fingers crossed yours will be quick.

One tip though, you will need to be very active in flushing and using the scrubbing brush in the toilet, for several days, when the barium starts being passed! It doesn't dissolve in the water and left on it's own forms a solid mass, hence the flushing and scrubbing lol.
 
Good luck, Margie! I hope you will finally get some answers! Please keep us posted!
 
Well got through the small bowel series this morning, however, didn't make it back home in time for the restroom and soiled myself again. I am so cramped up more so now than I was before the test. The radiologist said that the barium went through the small bowel very fast and into the large, they were surprised at how fast. Not quite sure what this test is going to show, all that I know is since the drinking, I have now had the barium run through me like water. I thought that most people it would bind up and cause constipation, I sure don't see that happening since I have already been in the restroom about 5 times since drinking it which was only about 2 hrs ago.

I guess now I just wait and see what the results show.

Thanks everyone for all of your support, means a lot to me.
 
Margie, I had my barium with follow thru this morning. Apparently I now hold the record for the quickest passage of barium at the Luton and Dunstable Hospital. I'm waiting for my trophy...:ywow:

Yes, in 15 minutes flat, I had disposed of the barium. Thank god for the bag boys and girls! At the follow thru, the radiologist said I needed to drink more of the white yukky stuff as there was none left. (this was 30 min after drinking) I gave him "The LOOK", and he errrrmed and said, well maybe not.

As for this stuff causing constipation, what are they talking about??? More the opposite for me anyway!! :stinks:

Anyway the radiologist gave me the results right then and there. No inflammation in upper bowel. (not a surprise...) What did they say exactly to you?

Misty
 
hi Margie, I am a 37 yr old mother of 2 and am married to a patient and loving man. I was diagnosed a month ago but I have probably been sick for a long time. It all started after my son who is 3 now was born. They thought it was PPD then depression, lack of sleep but I kept telling Docs check thyroid anything I am so tired. So it took me advocating and not giving up to finally get some testing. I got my first b12 shot, last friday, I take asacol, iron, prilosac, D3, calcium, magnesium and green wheat grass jusice with lots of other good stuff in it as well as probiotics and digestive enzymes. My docs think the supplements can make things worse but I have noticed it has actually been helping. I am afraid of cancer to be honest. Both parents are cancer survivors mom breast at 41 and dad colon cancer at 43. I have to have colonoscpies every few months. I have been on remicade for 2 yrs (psoriasis) but my flare up from esophogus to colon is severe so they are thinking my body is not responding to that type of treatment. After my nest colonoscopy in 2 months if things arent better they will put me on prednisone. If I had energy I would do yoga but I barely have enough as it is so I use it to spend time with my family. I sleep anywhere from 3 to 6 hours a day. I struggle with naussa, cramping and exhaustion which also makes it hard to think, concentrate feel alert, it is all hard. I am struggling w constipation now i am on aasacol so I take stool softners which allows me to have a bm every 2 days maybe 3. I just want to be healthy for my family much like you while also trying more holistic approaches to assit with the meds I am already on. I hope to stay in touch and I will keep you in my prayers, I know how hard it is to lay in bed everyday while you hear your kids laughing and playing and you cant join them, thats the worst part of it all for me.
 
Jill,

Thanks, I will let you know the results of the tests tomorrow or Thursday when I talk with the doctors office.

Misty,
I have already soiled 3 pairs of undies because of not making it to the bathroom, so you are right I don't know what they are talking about, sure don't want to drink anything to help because it is just pouring out of me. I, to, left the hospital and didn't even make it before soiling that pair and since have absolutely no warnings to get to the bathroom at all. Walk and poop.....grrrrr.

The radiologist didn't tell me anything except that it went through extremely fast, faster than most people that have the test.

Won't know what the results are until late tomorrow afternoon or sometime on Thursday.

I hope that you get some answers soon too since this test showed no inflammation.
 
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social me
I am so sorry that you are having so many problems. I know that it is so hard to be so ill and try and live a somewhat normal life. It has been a constant struggle for me, but I do it, because I will not let the Crohn's Disease rule my life. My boyfriend asks me every day how I am doing, and my answer to him is truth or lie. Of course, he says he wants the truth, and so I tell him, but for the most part, I just try to not let him see how I am really doing. Kinda hard when he lives with me though.

All that you can do is the best you can do daily. If you are tired, then get some rest. On the days, where you feel that you can do more, than really enjoy being with your family. I know that it is hard, but really a positive attitude is important, at least that is what I have learned over the years.

I have learned to just try and live each day to the fullest because you don't know how you will feel the next day. So on my good days, I try to go do something that I enjoy. In your case, playing with your children.

Please hang in there and know that you are not alone.

Hugs
 
Aww Margie, I remember the soiled pants oh so very well. I didnt need answers today. My GI had the test done for unknown reasons to me. I have no upper bowel problems. When the radiologist asked why I was there...I said NO IDEA!!?? All my probs are in the lower bowel. Or WERE, I have a bag now. Thank goodness for that today!

Hope you get some answers sweet pea.

Misty
 
I cant smack him...he's too cute! I'd like to smack his bottom, but he'd think I was a dirty old lady. (I am...shhhhhh) :ylol:

Anyway, if it makes him feel better to get 'happy' news for him, fine. Personally I suspect he thinks I hide things from him. Which would be true. I was almost dead and said everything was fine, thank you. So I'm getting what I deserve here!

I'm really surprised the radiologist didnt give you a clue what he/she picked up? Grrrr. Waiting stinks!

Misty
 
I am just glad that everything is good with you for now then.

As far as mine goes, the doctor that ordered this suspects an ulcer in the small bowel, of which I am confused about, because of research that I have done. Is an ulcer also referred to as a fistula or a stricture? Thought I read somewhere that they are.
 
Theres alot of bad info on the internet! But ulcers can develop into other things if left untreated, according my GI anyway. Then again, I could've misunderstood him!
Misty
 
Yeah, an ulcer is kind of like a blister, I believe. A fistula is basically a tear/tunnel that connects organs to organs or organs to skin areas. A stricture is a narrowing, whether it is from inflammation or scar tissue.
 
Well I guess I will find out tomorrow or Thursday what is going on and what is next. I just hope, for the love of God, that all of the horrible tests are done.
 
Margie - I hope you get some answers soon and can be done with testing for a long while! I know first hand how draining it can be.

Hang in there!!!
 
REALLY UPSET RIGHT NOW!!!

Well, I received a report in the mail, of all ways to learn a little more about what is going on with me, rather than the doctor having me come in to explain things. Guess because I am on a state aid medical insurance, of which normally he wouldn't accept, he figures he will give me the results of the PillCam this way, that way he isn't wasting his precious time with a patient who can give more money to his practice than my state aid will.

This is what the test said, and now I am seriously afraid of what is going on. Not understanding some of it and with him throwing this at me through the mail REALLY IS UPSETTING.

Okay, this is what the reports shows from the PillCam Study.

One image shows First Cecal Image. Ulcer crater with exudate?
Another shows Mucosa appears abnormal, non-descript, unable to delineate small bowel vs. colon with certainty
One image says mildly irregular with GE junction. Possible minute areas of Barrett esophagus. Does not look inflamed

Procedure info and findings: This was an outpatient office based study. Our usual PillCam bowel preparation was advised. The Given PillCam was swallowed readily. Transit through the esophagus and stomach was normal. Imaging through the initial phases of the small bowel were excellent. There was no stenosis or delay in transit. The background mucosa appeared intact and homogeneous with no erosions or ulcerations. There was an abrupt change in appearance at 2:27 where retained bile colored content was present throughout the rest of the study. Initial image at 2:27:45 appears to be an ulcer crater with exudate, however, there was adherent content throughtout the rest of the study that degraded imaging to the point that discerning small bowel from colon was difficult. Some of the mucosa that could be seen, for example at 6:06:12 appeared nondescript and abnormal regardless of location.

Summary and recommendations:
This wireless capsule study of the small bowel is difficult to interpret
What I have labeled as the first cecal image may be a continuation of the small bowell in that the transition did not appear typical and imaging from that point forward was degraded by retained content
There is a question of at least one ulcer crater, however this cannot be certain due to the retained content
Dedicated small bowel series is advised to evaluate further (I am waiting on the results)
Close follow up pending above

I want to seriously know why he gave me the results through the mail. How upsetting does he think this would be to me to hear about it this way, with no consultation or explanation from him first.

I, now, feel like I am not good enough and a piece of sh.....t that he can just treat me like this. Damn these doctors. Why couldn't he even have the respect to have me come to the office and explain this to me rather than send this through the mail.

Sometimes, I really wonder why I even bother to wake up, when all there is, is more of the same every day.
 
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Hey Margie.

I'm sorry this is so upsetting to you. You are right. There should have been some sort of explanation. I know my doctor, at least, has the nurse call me and explain whether it was general good or bad. My paper usually says to follow up with my GP who explains in further detail hat it all means.

Do you think your GP might be able to interpret it for you?

I am no doctor, but it sounds to me like the prep didn't do a good job of completely cleaning you out, so there was a film that covered large portions of your intestines, making it hard for him to determine if he was in the small or large intestine. The mucosa is basically the lining of the intestine, which the results say appear to be normal. The ulcer crater with exudate basically means they think they found what appears to be an ulcer with seepage of liquid (exudate - usually associated with inflammation). But, he goes on to say they can't even be sure it was an ulcer due to the presence of retained content (stuff that didn't get cleaned out by the prep).

Looks like he is waiting on the results from the small bowel series you just did.

Though, in my opinion, it sounded like he was already thinking you may have n ulcer, right? I think you mentioned he said something after a previous test/image? I would tend to think you probably do.

My suggestion would be to see if you can get in to see your GP for further explanation of the results to help you feel better about them.

When do the small bowel series results come back?
 
Hi Margie, Dream twilight sounds about right I would be worried about the ulcer that needs checked. My GI sucks too! Talk about lack of bed side manners, hell even thoughtfullness or feelings. For me I have had to fight tooth and nail to get tests done all sowing it wasnt in my head like they have made me believe the last year. In fact now its severe and on top of that I had to b the one to ask for my iron, b and d and thyroid to be drawn because he never requested it with the other blood draws which showed I was anemic and low in all but thyroid. Who is the doctor here? I am sorry to rant, I just understand your frustration and feel for you, what he did by mailing you and not calling was just unprofessional and thoughtless and I am sorry for that.
 
I think what concerns me the most is that of the one image showing areas of minute Barretts Esophagus.

I am still waiting on the results of the small bowel series which hopefully will be in this afternoon.

Sorry for the earlier post, the mail not only upset me but scared me.
 
Apparently Barrett's Esophagus is related to GERD.

I would say that "possible minute areas" are something to focus on. Minute means small amounts. Plus the words "mildly irregular" and "does not look inflamed" are included. I know it's easy to say, but don't get too worked up about it yet. :) Sounds like if it's mild, it could be easily treatable. I don't know a lot about GERD though. But with all the vomiting you said you've endured, I'd be happy with only mild traces.

I don't mean to dismiss your feelings though. :) Just trying to make things a little less scary.
 
Marisa,
I understand what you are saying. With all of the vomiting daily though, really scares me because lately been taking antacids more and spraying my throat because of it being so sore.

I am trying not to get worked up with all of this, just not easy. Sure hope the docs office calls me soon to let me know what the test showed.
 
Oh Margie,

Biiiiiiig HUUUUGS TO YOU MY FRIEND. You hang in there and you never know you may be sorted out this time next week !!

Really do hope so

Bruscar
 
Bruscar,
I sure am trying to hang in there, but it just seems like life just keeps throwing me more. I had the mail from the doc yesterday and the IRS all over me today. Just seems like the more I try to keep my chin up and not let this damn Crohn's get me down, the more stress I have that ends up making it worse.

I now have absolutely no appetite at all and could care less about eating. Not only does my stomach distend and cramps up so bad, but now my throat burns and I have the horrible heartburn to go with it because of all of the vomiting, which I never had either. And what is with these little white itchy as hell bumps that I get all over my arms and legs and back. Itches so bad, that I scratch them literally raw.

I am trying though. My book is helping me keep my mind occupied.
 
Oh jesus christ Margie !

Is it not possible to go to a hospital a and e and get admitted and treated that way, do you need insurance for absolutely every situation?

Thats BS isnt it, holy ****. Can you take buscopan?, or have you ever tried it?

I find it quite good, but this isnt about me, god my heart goes out to ya?

Keep fightin babe !

Bruscar
 
Update,
The latest is no future appointments to the GI doc, so apparently he isn't going by his own recommendations of close follow up. Instead he is putting me on Bentyl and that is it. No more tests. Nor more appointments...Still no answers as to why this is happening. I am guessing I need to find another GI doctor, you would think that this one who is a member and on the CCFA site, would be the one to go too, but I guess even with him, it is all about lining his own pocketbook.
 
From what I've read on the CCFA website, apparently they don't necessarily endorse all of the doctors that are listed in the doc finder. They're just listed there because they probably pay some membership fee to be listed on their website, which kind of stinks.

Hope the next doc you find can be more helpful!
 
Bruscar,
I went to the ER about 2 months ago for this same problem, and they did a couple of tests and patted me on the head and sent me home with the very distended abdomen and all of the pain, etc. That was at a different hospital and with a different GI doctor. This makes 2 docs and 2 hospitals in the last 2 months that have done nothing to help me. Don't know what to do, there really isn't any sense in going in because they didn't do anything the first and second time. For all I know my liver enzymes could still be elevated too. I couldn't believe getting the results in the mail instead of him asking me to come in and explain to me what is going on here.
 
I am so sorry to hear this, Margie. Don't let this jerk bring you down and make you give up! I hope you can find a good GI soon who can give you some answers.
 
My GI told his nurse to tell me that he wanted me to start taking Bentyl and said that everything is negative and call him mid week. I have been on this drug now since Thursday night. I take 20mg 3 times a day. All it has done for me is give me more of the same in side effects and more. It was bad enough that my abdomen is so distended and I have cramping in my abdomen and lower back, along with all of the Diarhea and Vomiting. Since being on this drug, I still have the Diarrhea, only now seems like I either have to run to a bathroom in hopes that I make it, or I sit on the toilet with what feels like constipation, but it isn't, just having a hard time going sometimes. I am still vomiting after eating anything. I have cut my meal portions down to the point that my boyfriend says that I am not eating much. I have no appetite for food at all anymore because of what I know happens almost immediately. Cramping, wow, well sometimes the same, and other times especially after eating it is so bad that I cry, very sharp cramping pains followed by vomiting to relieve the pressure.

The report he says came back negative, well that is not what I read on the one report for the pill cam which state minute Barrett Esophagus and a lot of what looked like yellow colored bile content. That does not sound negative to me. Might not be serious, but I do feel something is obviously going on. He ordered no more tests, lab or x-rays and is just gonna let this ride.

I don't want to live like this anymore. I can't stand all of the pain all of the time, I told myself that I would never be like this. I am a fighter and I am seriously tired of fighting what I think has become a loosing battle with doctors.

What am I suppose to do here? Has anyone else been on Bentyl? How long does it generally take to work and help out with all of this?
 

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