So frustrated!!

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huntersgirl

Joined
Apr 18, 2012
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Hi all! I am glad to have found this forum. I am 45 years old and have suffered with intestinal problems for as long as I can remember. Over the past 2 years things have just gotten worse. Finally, this past november I went for a colonoscopy and upper endoscopy. These only showed lesions in my duodenum and he couldnt get into my illeum due to the inflamation. This led to a ct scan. It showed I have a small hernia and a contracted gallbladder. Still not the cause of my problems, though. Then I went to the er when the pain was so bad. They took another ct and found nothing and sent me home. I finally got in with the gi who did a boat load of blood work, took stool samples, gave me a plain abdominal xray and I have an ultrasound scheduled for tomorrow. Out of all that they said I am vitamin d deficient (my level is at 4) and of all things they claim I am constipated!!! I have more diarrea than 20 people combined and they say im constipated!! I have severe stomach pains, the diarrea, blood in my stool, joint pain, fevers, and I am so drained of all energy it is all I can do to get out of bed most days. Also, when I went to this gi, I actually only saw him for about 2 minutes. The rest of the time I only dealt with the PA. Is this normal? Oh, and I forgot to mention the nausea and vomiting,too. I also have a mother who was diagnosed with crohn's about 4 years ago. Please, does any body have any ideas or suggestions? I am so at my wits end. Most days I just want to give up and cry. Luckily I have one awesome husband who has been great, but its not easy on him, either. Especially when I cant even get out of bed. Sorry for being so long winded. Thanks for the help!
 
Again, welcome to the forum :)

With your symptoms and with your mom having Crohn's Disease, Crohn's Disease would be my guess. :(

In all that blood work, did they test for vitamin B12? If so, what was the number? That your terminal ileum (the last part of your ileum they couldn't access) was that inflamed makes me think you may be deficient in B12 as well.

Please keep us updated and let us know how we can help.
 
huntersgirl-
In my uneducated opinion it sounds like Crohns Disease.
I know what you mean- some days during this flare I roll
out of bed asking myself how long it will be before I can
crawl back in.

I hope you get an official dx soon thats the first step to remission!!

Good luck!
:dance:

Lauren
 
I am really glad to have found you guys, it feels so good to know others have gone t hg rough the same things I am going through. Yes, david, they tested my b12 also. It was at 426. From what I can tell that is about midway in the normal range. Is that right? I was reading in your newbie section that a person can have all normal test results including blood work and still have crohn's. If this is the case how in the world will I ever get a diagnosis? I cant keep going through this. Its draining me financially, as well as time out of work. I cant jeopardize my job, either.
 
Huntersgirl-
I had this talk with my Dr and a good friend who is a nurse
At some point you treat the symptoms and the patient. With
Crohns it can be a process of elimination. Eliminate everything
thing else.

Very frustrating!

Lauren
 
That's a pretty good level for vitamin B12, that's pleasing to hear :) I tell people to get above 500 but you're doing pretty good. IF it turns out to be Crohn's Disease, I'd get your B12 tested again in 6 months or so to make sure it's holding steady and not trending down as the liver can hold up to 5 years worth of it and you could be making lots of withdrawals on your bank account.

Did they take biopsies when they did the scopes? If so, what were the results of those?
 
They said all the biopsies were "normal", whatever that means. Pretty much everything I have had comes out normal. Im tired of being looked at like I am crazy!
 
You're not crazy. Normal, healthy people don't have inflammation, ulceration, blood in stool, etc. I know this is incredibly frustrating but a diagnosis will come your way. You may want to talk to others in our Undiagnosed Club who understand all too well your frustration.
 
Had an abdominal ultrasound today and I happened to get a look at some of the liver pictures. A couple of them showed some blue, red, yellow and green spots. Any idea what those mean? I also saw like a black oval shape...
 
Im sure I will get a copy of the report in a few days. Its just the waiting makes me nuts. Is there a certain type of pain with crohn's, or is it different for everyone?
 
I wouldn't say it's so much different for everyone but where your Crohn's Disease is located and the specific way it is manifesting would cause different pain. Some describe burning, others dull ache, some say it's like they've eaten crushed glass, others sharp pain, and others still it's spasms. It's certainly a broad spectrum of possibilities :(
 
sounds like you need to find another GI. especially if there is a history of crohn's in your family. remember you know your body better than anyone else!
 
I agree, I am thinking a new gi is in order as well. I did get the results of my ultrasound and they said I have fatty liver, but that it isnt the cause of my problems. I figured I wouldnt get any answer from this test either. I was also supposed to get a capsule endoscopy, but they had to check if my insurance covers it and I havent heard back yet, and its almost been a month now. David, thanks for the explanation on the types of pain. In my lower right stomach I have burning pain with occassional stabbing pain. In the upper right I have constant dull pain going into my back. I dont know if this means anything. Has anyone heard of overflow diarrea? They are trying to say that I have this. I dont buy this for a minute.
 
Hmmm, yeah, a second opinion might be a good idea.

And start smacking around your insurance company and get them to cover that capsule endoscopy. Don't be patient with them :)
 
Did they give you a treatment for the overflow diarrea. Yes I have heard of it. My daughter is has constipation and she has crohn. She had xray 4 week prior to dx which shown her colon to be completely full. We used prune juice to clear the blockage.
 
catherine, I cant believe I have constipation with all the time I spend in the bathroom. There is no way there is anything left in there!! They told me to do a water enema for two days. Which I absolutely refuse to do, for 2 reasons. One, I spend enough time in the bathroom, I dont want to do anything to encourage it. And two, its an enema! I think that speaks for itself! What test finally gave your daughter a diagnosis? I have had so many, all with "normal" results.
 
welcome huntersgirl :)

I have overflow.. takes a good few days of epsom salts to get me cleaned out.. I thought it was weird too taking a laxative when i had the runs but boy when it finally came out.. felt so much better!
 
I'm being tested at the moment but yeah, they suspect it. Crohns can be constipation and/or D from what I've read and been told.. but overflow is common with constipation.
 
I see Dr Dan Geenen at GI Associates in West Allis or at St Lukes. I do see his PA first but he will spend as much time as I need with me
 
I have had the colonoscopy, biopsies all normal, but couldnt get into ileum due to inflamation.i didnt know an mri could be used for this. What does that look at? Nobody has mentioned mri to me yet. a friend has recommended gi associates to me, thats where he goes. I might look into that. Froedert is a good hospital, but I just cant get over a dr who only spends 2 minutes with me. Im paying for his services, not an assistant. Im in so much pain tonight I almost want to go to the er, but the other time my husband took me in they basically told me I was nuts, gave me a ct which I had just had a month prior and sent me home.
 
We had a choice of a ct scan or mri scan. Because of Sarah's age her gi's boss would only recommend a mri. She drank a constast and my understand is the mri shows the area above where the colonoscopy can reach. Also the biopsies taken from her colonoscopy showed crohn's and the gi told us straight after the colonscopy it was crohn and just wanted to rule a couple of things out.

What I like about both GI's Sarah has seen, was they told me before the colonscopy, that it was not ibs and they would like out what is was.

Huntersgirl are all your blood tests normal? And what blood tests have you had.
 
Huntersgirl, all of my blood test had come back normal, but the colonoscopy unquestionably showed that I had Crohn's colitis. I would say not to let these practitioners bully or intimidate you; you know what you are experiencing and the pain that you feel. Personally, I have never had any real pain with my Crohn's, just some discomfort during flare-ups. Tomorrow I see my GP, and its been almost one year since my diagnosis, so I am curious to see how my blood-work is. Hang in there, Huntersgirl, and I'm glad that your husband is so supportive. I have been on a sulfur drug called Colazal, 750mg 3X daily, for most of the past year, and I hope to get a Rx renewal tomorrow because it works very well for me. You will be in my prayers and lets hope you are able to get a diagnosis soon!
 
Hi huntersgirl,
I can share your frustration with you, I have been going through the run of the mill too. In particular the issues with the loo and worse, job, career and money.
I am here to chat if you want to know anything. Private message or message on here if you like.

Have you had any other symptoms?
I have had so much happen in the last year an I was so low in my b12 and folate, I'm believed to have pernicious anaemia. I tend to get stomach issues every morning and my bm's go one of two ways. I haven't been 'regular' with my bm's since easily early last year.
I have been trying to get myself sorted an in the last 8 months it took two of them just to get a blood test done! I share your frustration and of course pains.

I wish you all the best.

Kat
 
Yes, all my blood work except for vitamin d has come back normal. Ive had so much blood work I dont even know what all I have had. I know b12 came back normal.
 
Sounds like all can do is moment is hung here and look for a new gi if your not happy with current one. What are your doctors doing to fix your vit d levels? And when are they going to re tests to see if it working? I think you need try and get copies of blood tests so that you can be more active in managing your health.
 
I am currently on 50000 iu of vit d 2x's/week as well as 3000iu daily of over the counter vit d. They wont retest me for 6 months. I do have a list of all the blood tests that were run on my online thingthat my drs office gives us. Are there any certain tests I should make sure they ran, or any test I should look closer at the results for?
 
I look at iron studies, hemoglobin, B12, Folate. There are some others but I remember what they are at moment.

What you are looking for is whether the results in normal range, how are the moving in range or are they out of range. Any are out of range your want your doctors to tell why they are out of range.

EG. when your Vit D is retest, have the level move up, how fast is moved up.

I personally would not want to wait 6 months for retests of vit D if my level was 4. What is the range on your tests for D.

B12 is other one, your level is low normal? You want to know whether it is always low normal, or is moving on a downforward track.

I think you mentioned you have anemia. What type of anemia is it? What is there plan to fix it?
 
Ok, looking back at all my results, I dont find a result for folate. Could it be called something else? My hemoglobin was 15.3 and my b12 was 426. Other than the vit d they called all the other results "normal". But in looking back I see at least 2 that dont fall in the range. For example, my red blood cell count was 5.2 and it said the range is 3.9-5.2. Wouldnt this be considered borderline high? Also my hematocrit was 46 and range should be 34-45. I dont know if there is any significance to this, but ive got nothing to compare to since this is my first round of bloodwork and nobody has mentioned anything about retesting me.
 
Folate could be vitamin B6 or folic acid. That RBC and hematocrit wouldn't make me think twice. It's good to keep all this data though so you can monitor for up or downtrends. For example, if your B12 is 340 next time and 310 the time thereafter then that would be very valuable information.

Out of curiosity, did you travel to any foreign countries prior to the onset of your symptoms?
 
Hi huntersgirl-

Thanks for hanging in there and answering all the q's...its helpful to read and follow the great info from all the members here. I was wondering what the docs had to say about the inflammation in the ileum?
 
David, no I havent even been outside of wisconsin in 3 years. And should I be having all this bloodwork repeated? It seems like it has been dismissed since everything was ok. Adam, they havent said anything about the inflamation in the ileum, really. They mentioned doing a capsule endoscopy but I havent heard back from them yet as to whether or not insurance will cover it. Im not sure whos throat I should be jumping down on that one, the clinic or the ins company??
 
Crohns sucks!

So sorry to hear your story. Please know you are headed in the right direction. I'd first start an eating log to see what foods cause you the most pain/discomfort. Bring this information to the GI too. Take the supplements vitamins to help and demand medication to treat the inflammation. That will make you feel somewhat human again. Sorry no quick fix. Just know many are out there thinking of you and hoping you find answers soon.
 
Based upon what you've been describing, there's no need to have the blood work repeated for awhile as far as I know. But let's say that you get diagnosed with some form of IBD. At that point having it done on occasion would be a good idea.
 
huntersgirl, man I know what you mean, I had problums for a LONG time. For the pain, make sure they give you something for that. As far as a new GI Dr. Call around and find a office where there is 2 3 or 4 GI Dr. and ask if they do alot of crohns treatment. I know how frustrating it can be and the pain you can go through. Some of the best treatment I have got is at the ER. Crohns is not eazy to Dx. 15 years of diarrea and them saying that I had IBS . after a colonostomy they found some small tumer like thing on my apendix so they went to take it out and found a mass of crohns at the end of my small intestine and did a resection on the spot, they sent that removed part to patalogy and it came back as crohns. you know, only a small amount of people have a Dr say for sure that you have crohns. I'll tell you what I would do if I were you. All of my blood work was fine also,blood work does not tell a Dr much about crohns. I had the Big "D" for years and pain. With that said, Do some research in your area by caling colon retal surgents and ask them for names of GI Dr that know alot about crohns, thats what you need to do is find a GI that know crohns. And tell the Dr. what you expect from them and to please help you with the systems, after all, if you do have crohns, that is all they can do is help you with the symptoms, there is NO cure for crohns.
you will work this out but sometimes you have to be a ass to get what you want, but for sure you have to do alot of the research to help yourself. If you have Insurance, and it sounds like you do and with all the test you have taken you must have meet your "out of pocket" level by now. SO I WOULD KEEP GOING TO THE ER until they work this out, tell them you are in pain and you feel like you should be in the hospital if you feel you should. If you have meet your out of pocket for the years and there is no limit, go for it, bug the hell out of them till you get better and you will.
I hope everything works out fast for you. I feel you. And this is a very good place to get the info you need to fight the Dr. till they undrstand. One thing be very carefull with the pain killers, you don't want to deal with withdraws also.
You WILL find a compasanet Dr. that will work with you, and fix you up. Thats for sure.
But right now you are so sensative to ALL of this, you need to take a step back and chill out, they don't think your crazy, keep a cool head but demand that they get to the bottom of this, and they will. See my story, it was no fun at all for what it's worth. But please keep your head up, YOU WILL GET BETTER. Thats for sure.
one other thing, get and keep a copy of all of your test and kep them in a folder. If you go outside of a network they took test you will have the papper work with you. This is VERY, VERY important. Get everything from ALL the DR and hospitals you have sen, they are your records and they will give them to you. I had to fire a few GI Dr. before I found one that would help me, and lossing 20lbs in 1 year helped them get on thier horse and find out what was wrong. If you have lost lbs, bring that up. If not, make sure to stay at a good level. I went from 185 down to 160 over 4 years and then the last year I lost 20lbs in about 6 months. This is also a good sign of crohns. Keep pushing on, and may God help and bless you each day to find out whats going on.
AND keep us posted, we want to support you, but we can't if you don't keep us in the loop.
Keep your head up, Pops (Jim)
 
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Thanks everyone for all the good advice and support. My husband is great to me during all this, but he really doesnt understand, and I try to keep my pain to myself because he feels so bad that he cant make it go away. The one time that I did allow him to take me to the er they did nothing for me, except pump me full of morphine, which took 4 doses before it even touched the pain. He was adamant that they admit me until they found the problem, but the doc said that they couldnt "justify" an admission. I am so exhausted, mentally and physically, I just want to curl up in a ball, shut out the world, and not deal with anything. As much as I would never wish crohns on anybody, at least a diagnosis would be the first start to feeling better.
 
huntersgirl,
You sound like you have calmed down a little bit. I know how your husband fells, I just got my crohns last year at age 60, BUT my wife now 56, started getting colitis back in 1980 @ age 26, blood in stool, pain we had 3 boys 6 years old and under, we were busy LOL, and I wanted to do anything I could for her to make it go away. It was frustrating for both of us but at that time I was very health. After finding out what she had,(colitis is much eazyer to Dx than crohns) she suffered with it for years treating it with meds but finaly had her complete colon removed and that cures colitis. As I said there is NO cure for crohns. At this time you don't know what you have so lets just set back and make sure you find a Dr. that will treat the symptoms until they DO find out what you have. Like I said, you have to be pro-active with something like this, keep after them, tell them that you are not making this up, you are in pain and tell them ALL your symtoms (please keep a log book of your daily symtoms inc. GOOD days) this will help in alot of ways inc keeping you a story of how things progress. I would also keep a food log, sounds like a lot of work but it could help you out alot down the road. Remmber, if you are losing lbs, it is not IBS.
About going to the ER,when you are having pain. Tell the Dr. that you want Dilaudid, that morphine does not work. ALSO, are you taking pain meds RX by a Dr. or maybe by getting them from someone. You can see why the Dr would look down at no RX. If you need pain meds, go to your Primary Dr. and tell them what is going on and you need something for the pain. Tell the Dr. you will be honest with the use of them and your not out to get HIGH. They sould help you out, but only use them "as needed" It's hell try'n to stop using them after taking them for more than 1-2 months every day. You don't want to go there unless you REALLY need them. Myself, I take 5 10/325 Norco a day and have been for 5 years. BUT, I need them. I do tapper down when things get better for a while by 1/2 a pill every 2 weeks without to much of a problum but some people have a VERY HARD TIME doing that, so please be careful.
You will find out what the issue is and you WILL GET BETTER, it's just a matter of time. So set back, keep your head together and take it a day at a time. There is always someone out there that has it way worse than you. Not to down play how you feel, just to make you think about that it COULD be worse. Hang in there and keep coming back for support. We will not let you down.
Pops
 
I do have pain meds (vicadin) but I cant take them during the day because they put me to sleep. I may be taking one tonight though. It feels like someone has lit a fire inside me. I guess I am a little calmer, pops. Things were a little better at work today, so that has eased a bit of the stress. I do have one question I hope someone can answer because I am so confused. What is the difference between crohns and colitis, and how would I know the difference?
 
glad you're feeling a little better emotionally :)

Ulcerative colitis causes inflammation of the inner lining of the large bowel (colon and rectum). When only the rectum is involved it is sometimes called ulcerative proctitis or just proctitis. When the entire colon is involved it is sometimes called pan-colitis.

Crohn’s disease causes inflammation of the full thickness of the bowel wall and may involve any part of the digestive tract from the mouth to the anus (back passage). Most frequently the ileum, which is the lower part of the small bowel (ileitis), the large bowel (colitis) or both (ileo-colitis) are involved.
 
I'm not sure sorry :-( I think, from what I have read, that if you have crohns in the small bowel you can have constipation instead of D but colitis is usually always D.. but I can't be sure..
 
They told me that I have constipation with overflow D. I am skeptical of that. I spend WAY too much time in the bathroom to be constipated. There is no way there is anything not getting out!
 
overflow is VERY VERY common with constipation. that's what I think I get too. Here are some links that might help you understand... bear in mind that some of them are not to be relied on as medical knowledge (wikipaedia for example can be updated by anyone) .gov and .org sites are trustworthy information.

http://en.wikipedia.org/wiki/Fecal_impaction

http://pallipedia.org/term.php?id=878

http://www.betterhealth.vic.gov.au/bhcv2/bhcarticles.nsf/pages/diarrhoea?open

http://www.symptomcontrol.info/92.0.html
 
huntersgirl, leebe has given you alot of good info. Yes you can be constapated and be in the bathroom alot. It is called a blockage. sometimes when a person has a blockage ALOT of water or D comes out, I know it doesn't make any semce but it's true.
The symtoms of colitis and crohns can be the SAME, being that my wife has colitis and I have crohns, we have had alot of the same things going on. They are both IBD, but colitis does not effect the small intestines, only from the colon down. It's VERY hard to try and DX it yourself because the symtoms are pretty much the same.Abdomanal pain, the big D, blood in the stool, fever, throwing up (if you have a blockage) I can't think of any one symtom that crohns has that colitis has other than problums with your mouth (sores, yes sores in your mouth or throut. and with crohns you can also have eye problems skin and others. Look up what some of the symtoms are on the net and you see, I'm sure you already have. You can have just 1 or 2 of them or ALL of them, each person is different That is why it is so hard for the Dr to put his finger on a deff. DX of crohns without patholagy work done, and sometimes that doesn't turn up crohns, its a hard one. I heard Dr's say that only about 25% of people that are treated for crohns really have it. I don't know if that is true or not. But all IBD is fom inflamation. I wish I had colitis because there is a cure, remove your colon, and if you ask my wife, and she's just a little thing 5'2" 105lbs, she said now that she is cured everything is GREAT. Yes she has a ostomy bag but she say's, " so what", she weres tight close and she has a real nice shape (size 1 or 2 I think), she has to buy kids close most of the time) and you can't even see that she has a bag. You don't have to put on over size things to feel good, at first while your healing from the operation maybe but not after that. She's FINE for a 56 year old. I'm a very lucky man to have a wife that looks that good and she goes running a few days a week and swims, about the only thing I can think of that SHE says she can't do is use a hot tub, but no one has ever told her that.
Use the pain meds WHEN needed, I can't stress too much about "AS NEEDED" but on the other hand, don't hold back on them if NEEDED.
It won't be long until you fine out whats wrong, or you start feeling better. Take care of YOU, keep the logs and take it slow, but try and do everything you did before this started, don't let take over your mind, and it will try, you are stronger than that and I don't even know you. lol
Keep us posted as always. Have a good night.
Pops. (Chill'n tonight even though I don't feel all the way up to par. No BIGGIE.
 
huntersgirl said:
Thanks everyone for all the good advice and support. My husband is great to me during all this, but he really doesnt understand, and I try to keep my pain to myself because he feels so bad that he cant make it go away. The one time that I did allow him to take me to the er they did nothing for me, except pump me full of morphine, which took 4 doses before it even touched the pain. He was adamant that they admit me until they found the problem, but the doc said that they couldnt "justify" an admission. I am so exhausted, mentally and physically, I just want to curl up in a ball, shut out the world, and not deal with anything. As much as I would never wish crohns on anybody, at least a diagnosis would be the first start to feeling better.
Click to expand...

Maybe you should curl up in a ball for a while and shut out the world. For me, knowing that I have CD gives me the impetus to do just that sometimes. I owe it to myself. Sometimes in between facing the daily battles and challenges of life, especially with dealing with this scary disease, I take "mini-vacations". Its easy to feel guilty for doing this if we are down-to-earth, responsible people, but it really doesn't make sense to feel guilty for being ill and taking the time out to replenish your energy and recharge your batteries on all levels. :ghug:
 
Jim (POPS) said:
hunters girl,
I was talking to my wife tonight about you and we were also compairing symtoms because she had colitis and I have DX crohns and the symtoms were the same. But like I said before. Everyone is different but both of us had alot of the samething going on. The trick is in regards to IBD, we are all like a puzzle and don't have the same pieces. It's the Dr's job to figuer out the puzzle if it is IBD. The main thing is you have a great husband that supports you, he sounds alot like me, sometimes he over supports, bless his heart, but that's a good thing. And I told my wife about how I told you she was a size 1=2, WELL she said thank you to me but she is a 3-4. She said she would be a solid 3 but alot of the times a size 3 pair of jenns is cut to low and gets in the way for her stoma and bag. I wanted to clear that up. (Heck, I never buy her anything to wear, I just give her the money or around Xmas and her BD, well thats what my dauther is for. lol She would hate anything I would buy, besides I'm colorblind so I don't think she would match very well. :hippy: black & brown maybe
When you start to fell better, even if you don't have a DX of whats going on, you should take a road trip with some of your girlfriends, when my wife got better I sent her and a few friends to Disnyland for a week. It will help take your mine off things and DON"T worry about, what if I get sick while I'm gone, you can be sick there just as well as at home, but if needed come home. Or just take a weekend thing with the girls. I say with the girls and not family because you need to seperate yourself from everyday life as much as you can and not feel guilty about it to truly RE_BOOT. Got it?:ybiggrin:

I hope you and your husband get some answers soon about your condition. I will be praying for you if that's ok. I'm not what you call a Jesus freak, but I do belive in God and the power of praying. I know it has helped me through all my health issues.

size 1-2, my wife said I wish.lol.:rof:
Pops
Click to expand...
good night

sorry for posting 2 times, I'm not good at this or spelling as you know by now. I don't care how well I spell, as long as I get the message out.
 
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Pops, you spell just like my hubby lol so I understand completely what you are saying! Your wife is very lucky to have you. Sounds like you keep her quite entertained! I had a really bad night, spent most of it in the bathroom, but the worst part is when it Carries over to my work day. Its very embarrassing to be in the bathroom more than im at my desk. I just have to work on being confident that they will find the problem and make me better. I really do wish they would hospitalize me and just do what they gotta do to figure it out. Ive run up over 20k in bills so far, with no answers.
 

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