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Sick and tired of being sick and tired

Sorry, but just so tired of being treated like there is nothing wrong here. Why can't these hospitals and docs do something to help me. I go in and they just blow me off, when it is clearly visible that there is something wrong. I look like I am 9 months pregnant and about ready to pop a baby out. I can't stay in the hospital, because the MI hospitals don't want you there unless they feel that you have a visible life threatening condition, or that is what they all say. I can't eat anymore without the food getting lodged and forcing me to vomit it back out, nor do I want to eat anymore because it just hurts so bad afterwards, so why bother. I am having all kinds of other symptoms now, with the skin itching, to my sex life being affected, to having a hard time breathing, to sores on the inside and outside of my mouth.

Sorry, I just needed to vent after a violent episode of vomiting what little food that I managed to eat today.

I was even sent home with no meds for the Crohns, nausea, vomiting, diarhea or anything for the pain.

Just so so tired of this disease
 
Margie,
I am so sorry you are going through all this pain and suffering! How horrible for you. What does your regular GI say? No, it is NOT okay to vomit up all your food, hon! It is really not okay to have trouble breathing. Personal here but have your stool habits changed? Are you running a temp? I don't know about your history, so I don't know how long you have been dealing with this nonsense, so forgive me if you are an "old Crohnie" and you are aware of danger signs.
Please, please call your doc. The vomiting & very bloated stomach are scary signs.
Michele
 

AndiGirl

Your Story Forum Monitor
That is horrible, Margie! I am not familiar with the health care system in any state other than Alaska. I think our state is lacking in many ways. Right before my 29th birthday (many years ago), I was suffering from extreme nausea, and a lot of tenderness in my lower right side. It was horrible! One of the ER doctors told my parents (before I was married), that I was severely constipated. They put me on all sorts of laxatives and roughage. Oh boy, did my pain continue! My regular doctor finally suggested that I see a gastroenterologist. Evidently, my doctor looked at my x-rays and said that I was definitely not constipated, and he had felt a mass when he palipitated my right side. Sadly, even after seeing the GI doctor at the age of 29, it took three more years before they discovered the Crohn's Disease.

It sounds as though your situation is even more urgent and needs some attention ASAP. Do you have insurance? One of my friends here in Alaska has relatives in Wisconsin. She has been battling with Crohn's Disease for about the same amount of time that I have been. She decided that during her vacation back home to WI, she was going to make a trip to the Mayo Clinic in Minnesota. Evidently that is the cream of the crop. My friend is on a limited budget, but her insurance did cover her visit. She has a decent doctor here in Alaska, but she wanted to get another opinion from a well known hospital with an excellent reputation. She was glad that she did, because she found out that her CD was even more extensive than her AK doctor had indicated.

Have you been checked for gastroparesis (spelling?)? I have had problems with feeling full after eating (even when I didn't eat much), and feeling like my food was getting stuck, or wanted to come back up. My doctor told me that I probably had gastroparesis, which can be common with CD. She prescribed Regalan. It has helped some. I wish I had more that I could offer in the way of help.

You are among friends here, so please feel free to join in the threads or to call out for help. Hugs to you my friend.
 
Michele,
I have no regular GI doc yet. The GI that I saw while in the hospital was a condescending ass that patted me on the head after doing the colonoscopy and endoscopy looked at my extremely swollen abdomen and said to me, you are normal and there are no signs of Crohns so we are sending you home today. This was after 3 days of no food, liquids, etc, only morphine for pain, nausea meds for the vomiting and the IV drip. They sent me on my way and said to schedule an appointment in 2-3 weeks of which I couldn't get in till about a month. This has now been going on with the distended abdomen like this for over 2 months and can't get any help from any of them. I feel like there isn't anything that I can do or say to get them to listen to me. How can they just dismiss me like this when the swollen abdomen is clearly visible that there is something definately wrong. Don't know what to do. Tired of fighting this and the docs.
 
Andi,
I actually was being treated for gastroparesis before the actual diagnosis of Crohns. I had gone to the Mayo clinic when all of this first started but, surprising as it was, the Mayo clinic didn't do anything for me except send me home with a very vague you have a functional gastrointestinal disorder, and sent me home with no meds either. I do have insurance, but it is state aid and in MI that sucks because most of the docs don't accept it or you don't get quality health care.
 
Arrrrrgggggg! To treat you as if you have no idea that you have pain! I really hate that! #1. You are important.
#2. You are aware you have pain, so just mentally give those guys the bird & forget them; they are obviously USELESS!
Insurance issues are tough, I know. I now have good insurance but remember the days I didn't & the hoop jumping I had to go through. Don't get tired of fighting,hon; get even! Find someone that will take your insurance but more importantly, someone that will treat you as a person, not a walking problem/disease. you really are worth it, you know.
Michele
 
I am really trying Michele. I really am, but the longer that I go without treatment and meds the worse this is getting for me. I am still so confused about the warning signs of this disease too. I have never had a very serious problem until what I suspect is going on now, but then again I don't really know because the docs are treating me like I am nuts. Can you tell me what the warning signs are that I need to watch out for. The flares that I have had over the past several years have only been the vomiting and diarhea, but no bleeding or any of the other symptoms. So I feel like I am still totally in the dark with this disease and what I need to heed as a warning sign. Can you help me to understand a little bit better?
 
You've asked for "warning signs" so I just thought I'd let you know what symptoms I've had when ill. I, like you, get vomitting and diarrhoea, and also extreme lethargy/fatigue, complete loss of appetite, lots and lots of blood (at my worst and when not eating I have gone to the toilet and have literally passed nothing but blood), anaemia, chapped lips/sores around the mouth, loss of a lot of weight (at 10 years old and around 4"10 I weighed less than 5 stone/70lbs when I was having one of my worst flare ups) I also get crippling stomach pains as do the majority of Crohn's sufferers. Feelings of faintness and being weak (although I think that's from loss of appetite leading to not eating and low blood sugar). I hope this helped shine a bit more light on the illness, even if it is just from the perspective of myself.
Take care of yourself
xxxxxxx
 
Oh honey I am so sorry. What you are going through right now was me last year. I wish I had better advice then just go to the ER when your pain is ridiculous, and when you get there, always say your pain is a “10 out of 10!” It always helps if you can throw up in front of them. Lots of us know what it is like to be treated like you are crazy when you know that something is wrong. It is awful, but, trust me you are not crazy, and you are not alone.
 
Margie,
I have been dx with Crohns for years. The only time I had what you are describing is when I developed a blockage. I am not saying you have one, I am just saying that is what it was with me. My toilet habits changed from going almost constantly to hardly going at all & when I did go, it was like a ram jet & painful!! I bloated to where some friends I had not seen in months congratulated me on my pregnancy (I didn't say anything to them, bless their hearts). I wound up going to my family doc, he took one look at me & called an ambulance. It was cleared up with high power meds but it took 3 weeks!
Is there a different ER around you that you can try? This is going to sound nuts but act sick! We have a habit of "sucking it up" till another day. Don't. Hold your stomach, groan a lot, as stated above, if you can hurl on their shoes it is a plus.
Discomfort is okay sometimes. Pain is our bodies way of saying get me some help. And, your right, it sucks.
Keep us updated, hon. Don't let the bums win. I know you're tired & frustrated. Just keep plugging along, okay?
Anytime you need an ear, we are here for you!
Michele
 
Hi Margie,
Sorry to hear about your experience at the hospital. You really need to find a good GI. You mentioned a colonoscopy and endoscopy, but did they do a small bowel follow through (small bowel series)? The one where you drink barium and they xray you? The two tests you mentioned would only let the doc see the very begining and very end of the small bowel. What about the other 20 feet?

Don't give up - find a good doc, they are out there.
 
Thank you everyone for such a great support system that we all have here. I really don't know what I would be doing right now if I didn't have the support that I am getting from all of you.

I love my man so much, but the pain is getting so bad and the symptoms are so horrible that I am even snapping at him now.

I have to tell you that he loves me so much though, that he went out to get me some puczki just now but all they had was one box and they were prune ones.....ick....don't think I need those kind though.....lmao
 
A huge fat donut filled with all kinds of fruit fillings like apple, strawberry, etc. But the prune ones.....ick.....lol
 
Joe,
They did do a barium too, but the only thing that was found was that my stomach is inflamed and that there is a thickening on the intestine and the GI didn't tell me which one it was or anything else. All he said was that I am normal and sent me home with no treatment at all
 
Oh, donuts! I haven't had one of those in I can't tell you how long! We had a place called Crispy Cream donuts when I was in college. I would wait for the sign "Fresh, hot donuts" and rush over to get some! Ahhhhh...thinking about it makes my mouth water!
Michele
 
Yeahhhhh I sure wish I could eat some of the foods that I love, just can't anymore though. Favorites being ice cream and salads, big no no's now
 

AndiGirl

Your Story Forum Monitor
Here's a hug, Margie! I used to be a foodaholic. Limiting my diet and excluding offending foods has been the hardest part of this disease for me. I keep telling myself when I die, hopefully I'll make it to Heaven, then I can eat whatever I want. LOL!
 
oh yesssss a nice big chef salad with lots of blue cheese dressing and for dessert a great big bowl of dutch chocolate almond ice cream....yummmmm.
 
Wow did I just have one heck of a major sharp cramping in my lower right side of the swollen abdomen. That really hurt and still has kind little sharp pains there. What in the world is that now?
 
Oh, donuts! I haven't had one of those in I can't tell you how long! We had a place called Crispy Cream donuts when I was in college. I would wait for the sign "Fresh, hot donuts" and rush over to get some! Ahhhhh...thinking about it makes my mouth water!
Michele
LOl that reminded me of an ex-boyfriend years ago!! He used to look like a little kid staring into the window of a toy store while drooling...except it was not a toy store it was Crispy Cream!! The convererbelt would just have tons of fresh donuts constantly coming out...People would stare at them with smiles on...I always found that humerous..
They closed all of them down in most parts of New York...I do not know how they could not survive...they were always crowded.
 
Crispy Creams were always busy here in MI too, think they still are. I don't know, because as much as I love donuts, can't have much of them anymore either.

Margie
 

AndiGirl

Your Story Forum Monitor
When I can't eat because of a flare-up, that's usually when I dream of food. So unfair!
 
and only having one meal a day and a small one at that, won't even stay down anymore. Soooooooooo tired of the vomiting after eating. We can dream that is for sure, but you are so right it is so unfair.
 

AndiGirl

Your Story Forum Monitor
That has to be so horrible. I hate vomiting anyway, but to do it so often. I hope your diagnoses and treatment plan comes soon. You don't need to live like that.
 
I sure hope this new GI doc that I see next week will do something to help me. I have had this swollen abdomen, vomiting, etc etc etc for no less than 6 weeks now, with no meds at all for any of it other than the 3 days of nausea meds and pain pills while in the hospital, but sent me home with nothing after that
 

AndiGirl

Your Story Forum Monitor
I will send some prayers your way, Margie. That swollen abdomen and the vomiting sounds very alarming to me. That doctor better take it seriously and treat you with the kindness and respect that you deserve.
 
I had an extremely violent episode of vomiting last night to the point of crying. I found myself crying even while sleeping last night from the pain, nausea and vomiting. I am just trying to hold on until Wensday when I see the new GI doc. I hope that I can, but if I have another episode like last night, I will be back in the ER again, which I am seriously trying to avoid, just because they sent me home after a 3 day stay last time.

I sure hope that I have a better day today than I did yesterday.
 

xJillx

Your Story Forum Monitor
Oh, Margie, I hope today is better, too. I know the feeling of trying to hold out until your next appointment, but perhaps you should reach out to your doctor to let him/her know what is going on. Maybe they can schedule you in sooner. Thinking of you.
 
I had tried to get in sooner and the only way I could would have been to see the same condescending associate of hers that saw me while in the hospital. So I just have to try and hold out until next Wensday.
 
Margie, I have a connective tissue disorder that helped teach me about idiopathic gastroparesis. Your bloat and vomiting symptoms definitely match it. However, it should have showed up on a barium sallow, and gastroparesis doesn't usually include diarrhea, mouth sores, or "intestinal thickening". Those are pretty damn big red flags, in my opinion, so I'd advice really pushing to get treatment elsewhere. Vomiting should be taken very seriously, anyway.

Keep everyone posted.
 
I was treated for what they thought was gastroparesis when I first became ill....I was later diagnosed with Crohn's from the pill cam procedure. It is just really taking a toll of me with all of these new symptoms that I never had before. The swollen abdomen being the worst right now. Concerns me, but obviously didn't concern the GI doc in the hospital enough to warrant further testing before he sent me home.

I go Wensday to see another GI doc, hopefully I will get some form of treatment and answers as to why this is happening to me.
 
I didn't read your being on any medication currently. Are you? Either way, with symptoms like yours, it should obviously be taken seriously. What a fiasco.
 
The GI doc had me on meds for nausea and pain while in the hospital 3 weeks ago, but sent me home with no meds at all, not even for nausea or pain.
 

AndiGirl

Your Story Forum Monitor
I've read that gastroparesis and Crohn's can go together. All the vomiting is scary sounding. I agree, that they need to take it seriously.
 
Had yet another night of vomiting, pain and crying all night. Now to add to all of my other symptoms, I am now having problems with intercourse. I feel like he is jamming up against a wall inside of me or something. Hurts so bad to even make love to my guy now. Hate this horrible disease and what it is doing to me
 

ameslouise

Moderator
Margie -you should get an award for wanting or even considering having sex right now! Good for you! How can you even think about it with all the vomiting and pain you are having?????

I think your new GI appt is just a few days away now. Hang in there!

- Amy
 
Amy,
I have always told myself that I will not let this horrible disease rule my life. I live one day at a time. And even though, I have such horrible days lately of vomiting, etc, I still have the one man in my life that truly loves me for me and has always supported and cared for me when I am down and needed him. How can I not try and show him how much I love him. That last thing that I want to do, is lose the love of my life to this disease. Crohn's may have taken part of me, but I refuse to let it suck the life out of me too. I have now started my second novel after submitting my manuscript to the publisher earlier. This one will be titled "Crohn's Disease Won't Rule"
 
Amy,
My GI appointment is on Wensday morning this week after waiting almost a month after being released from the hospital. I sure hope this appointment isn't a dissappointment and that she will actually listen to me. If not though, my boyfriend will be going in with me to let her know exactly what is going on with me.

Margie
 

AndiGirl

Your Story Forum Monitor
I am praying that you will get the compassion and respect from this doctor. Your body and mind need a rest my dear friend. Sometimes it does help to have another person around. It sounds as though your beau is loving and supportive.
 
Andi,
He has been my rock. I am so glad that I finally have a man in my life who truly does care about me and is there to take care of me when I need him. Without all of you here in the forum, him and my one son, I don't know how I would ever be able to handle what I am going through now.

Thanks all of you for the support that I am getting here in the forum. I am so thankful that I have found all of you here.

Margie
 
good luck margi, im praying they finally get you some relief from whats going on.. its hard when doctors seems to not care because its not them in pain or going through all this suffering.. i remember i was so fustrated one time i yelled at the doctor because i couldnt take it anymore.. thank god for my general practicioner.. shes the one that made sure everything happen for me and stayed on the doctor till he diagnosed me.. some doctors still care about their patients.. ill pray that this doctor you see on wensday is one of the good ones that will do his or her best for your care
 
spcwife,
I sure know that feeling, when I first became ill with this disease a few years ago, my doc told me to go see a Psychiatrist that it was all in my head, put me in the hospital for 9 days and did only 3 tests the entire time, I told him to discharge me and that he was a worthless piece of sh...... He asked why I said that to him and I told him because he doesn't believe me and is doing nothing for me.

I sure hope that I am not wasting my time going to this doc on Wensday, but my boyfriend will be going with me this time. I can't handle another one treating me like the others. If she does, than I don't know what I will do, because I can't go on like this anymore. I have another 3 days to wait and that is longer than I care too. I need help now.

Margie
 
Hey Margie, I would be in and out of the ER evert other week because they never believed me when I was in pain screaming and crying.. They said I didn't have chrons because I was constipated instead.. What you might have to do is ask the doctor to do a colonoscopy and look at the thing that connects your small intestine to your large.. I think everyone of us that has it there has constipation mostly.. Atleast from what I seen here some of us do. Tell the Gastro that you've been researching your symptoms and you think that it's located there so maybe when he does do the colonoscopy he can look in the area also.

I don't no what's wrong with doctors they think we all should be the same and our bodies should react the same.. I'm prayin that you can hold on in there till Wensday so you can get to talk to the doctor.. What I did when I couldn't hold on any longer I told my regular doctor who helped me out with the Gastro appointment about the pain and they will give you prescription to hold you off..
Maybe you can do that and atleast get some relief till Wensday..
 
spcwife,
As frustrating as this has been for me, when I went to the ER last time, was admitted for 3 days, had absolutely no food or drink for the entire time, had a colonoscopy and endoscopy along with CT scan and abdominal x-rays, the GI doc there patted me on the head as he looked at my distended abdomen and said that I was normal and sent me home with no meds at all.

I did get some Vicodin from my reg doctor for the pain until I can get in there this week.
 

ameslouise

Moderator
Hi Margie - Just wanted to say good luck at the new doc on Wednesday! Remember to bring a list of questions, bring your man with you to ask and listen as well and DON'T LEAVE UNTIL YOU ARE HAPPY WITH YOUR TREATMENT PLAN!!!

Hang in there! - Amy
 
Thank you Amy,
Change in plans though. I wish you the best tomorrow with your surgery. You will be in my thoughts and prayers.
Margie
 

Astra

Moderator
Hi Margie

I just want to give you a different perspective on this and that is a gynae one.
What you described was me 10 years ago.
A gastro using a scope will not see your girly bits, what you need is a referral to gynae.
Mention your gastro problems and ask for a scan in the reproductive area which lies behind the bowels. That's why gastro won't see them.
If you have endometriosis, these are abnormal cells that can adhere to bowels, bladder and spine and these can/may imitate an IBD. I describe them as barnacles stuck to the bottom of a boat.
Symptoms include diarrhea, vomiting, nausea, distended abdo, and menses all over the place, and pain when ovulating, and painful sex.

http://www.crohnsforum.com/wiki/Endometriosis-can-mimic-Crohns?&highlight=endometriosis

hope this helps
if you don't get any joy with gastro, see a gynae.
good luck
Joan xxxx
 
Astra,
Thanks for the advice. Funny that you should mention that though. I don't have any ovaries. I had a hysterectomy done many years ago, but my regular doctor did blood testing to rule out any cancer. She told me a couple of weeks ago, that she hasn't ruled out ovarian cancer even though I don't have my ovaries I can still have cancer in the area of the ovaries apparently. Scares the hell out of me, beings that is why I had them removed in the first place was because of precancerous cells. I know that I need to go see an OB/Gyn doc, just need to get through seeing my GI doc first to find out what is going on that he can see, if anything. I don't know what is going on, all that I know is that I was in the bathroom yesterday more than out, can't eat anything at all now, no appetite, and so weak and tired.

Margie
 

Astra

Moderator
Hi Margie

I've logged on just to answer you and see how you are doing, bit worried.
Hope you get some answers, what you're suffering with isn't all in your head, I know, I've been there, done that, for 15 years!
It's true, I haven't any ovaries neither but something could still be developing, not cancer tho, but endos. You've mentioned painful sex? Clear indication that endos are present. Another thing too, the distended abdo, I was the same, they removed a huge cyst from my ovaries, I know you've not got any but there could be a mass of endos in there somewhere.
Go and see your gynae to be on the safe side. Get the scans done and rule it out.
good luck and take care
Joan xxx
 
Joan,
Thank you for the advice and your concern. I need to find a new OB/Gyn doc, and will do that probably tomorrow. Just feel like all of these doc appointments are useless and aren't doing me any good. I really have no choice though in any of this. I know that I can't handle much more.

Margie
 
I am so so sorry. I really hope you do go to the ER. Make them take X-Rays, and make them keep you there until after you start eating again. So many times, they have kept me there on pain meds and liquids, and then sent me home before knowing whether or not I could tolerate solid foods again. That makes no scene! Of course we feel better when we aren't eating, and aren't throwing up, but we can't just stop eating forever! They need to see you at your worst, not your best!
 
Well I was pretty much told by my doctor that the hospitals here in MI will not keep you if you do not present a life threatening situation, so they send us home. That is why I haven't been back to the hospital, because they haven't really wanted to keep me long enough to find out what is going on. What is the use, really. Sometimes, I feel like all that I and the insurance company are just feeding the hospital and doctors pockets.

Sorry just very agitated, frustrated and scared right now. I can't get past any of this and shake these feelings.
 
I know how that feels, trust me. I’m sorry you are hurting and feel you have nowhere to turn. Try to keep your spirits up the best you can.
 

ameslouise

Moderator
Hi Margie - Did you have your doc's appt yesterday? YOu mentioned a "change in plans". I hope that doesn't mean your appt cancelled!

Let us know! -Amy
 
I just try to keep my writing up on my life with Crohn's and what I am going through daily in my struggle. It helps to know that hopefully something good may come out of such a horrible disease that we here all struggle with. My first novel manuscript is at the publishers now for review, and have now started my second novel. Part of the profits will be going toward research.
 
Well today is the day. Down 6.5lbs now, still can't eat without being sick, and I cryed in my sleep again all last night in pain. Been in the bathroom about 6 times in a 3 hr span this morning, went to the store, gone about half an hour and didn't make it back home before having an accident. Hate this. So sick of all of this crap. My appointment with my old GI, the one that diagnosed me, is this afternoon. My boyfriend will be coming with me. I am writing down a list of all of my symptoms and boy is it long about 2 pages worth, so that he can see what is going on.

Sure hope he starts me on some kind of treatment. I don't know how much longer I can hold here. I am at my wits end with all of this. I feel like I am homebound now. Yesterday I had a problem twice while out where I almost didn't make it to a gas station or restaurant to go and was only gone a couple of hours then.
 
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Update:
Just got back from seeing the GI. Gave him the list of my symptoms and he said "Oh my, Oh my, ya know anyone that gives me a list of symptoms 2 pages longs has to be nuts." Personality.....NOT....I can take the bad joking as long as he figures out what is going on here. He said it could be a few things, I could just be fat and out of shape, I could have poop moving all around in there and not coming out, I could have fluid build up, I could have cancer, or cyrrosis of the liver. What da hell.....FAT....he could see that I am clearly distended, he said it himself, so why in the world would he make a smart.....comment like that. Told me that they have to check to see if the insurance will cover the pill cam which could take up to 2 weeks before they will know, and if the insurance doesn't then I have to go for an upper gi and small bowel series. And if those are normal than it is something functional and not seen by the human eye. He did a rectal exam after I told him that I had nothing but 8 times of diarhea this morning with an accident while at the store, and he said that the rectal was definitely empty. As he dismissed me from the exam room, he said try and eat something.

I am so sick of the damn doctors....I can't seem to find one decent one that cares to do anything to help me.. going into the ER isn't doing me any good either, they just send me home the same way I came in and tell me to follow up with a GI and this is the outcome of the follow up.

Once again, was sent home with no meds, no treatment, no x-rays scheduled and told I would probably have to wait about 2 weeks to even get the pill cam done if the insurance will even cover it. And if they don't, then I have waited 2 weeks to have the other x-rays done I could have done now.


I just want to die....CRYING HERE .......going to bed and really don't care if I ever wake up to yet another bs day of pain and suffering with no sight of any help
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