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Saw the doc again...

So I saw the GI doc again. He ordered a small bowel follow through. I think he is pretty set on labeling me with severe IBS. He said that I have the most severe case of IBS he has seen or heard of. This comment made me think, "Don't you think that should tell you that it's something else?"
I don't have emotional issues. No stress, anxiety, depression, etc. So I know it's not anything like that which causes my symptoms.

I joined an IBS forum and IBS just does not fit. I wrote my story and I've gotten replies that it sounds like an IBD not IBS. I've read through the IBS forum and so many of these people are on meds for mental health and not that it's bad or anything...its just that I don't fit there.

I'm trying to find as much information as I can and I can't settle with IBS. My GI doc himself said that his IBS patients don't get severe symptoms like me that send them to the hospital.

I just don't know. I feel like giving up at this point because I am so tired of going to the doctor all the time. I don't want the hassle of getting a new one and going through everything again.

The hyoscyamine I started taking is helping. I feel much better than I have in ages. I still get little pains and cramps here and there, but overall I am feeling a lot better. EXCEPT, it seems that once it starts to wear off my bowels start freaking out again. I take it four times a day but once I wake up I think it has worn off and my stomach hurts and cramps up. Ugh, like now the feeling like I have terrible poops when I don't. The cramps, the pain.....it hurts!!!! The pain is just radiating throughout my lower back and I feel like I am going to crap my pants. Oh well....I guess I can't expect to feel okay all the time. I just got so excited that I started to feel better. For the first time I was able to say that I felt normal. My bowels don't want me forgetting about them I guess.

I want him to find the real problem and find something that can help.
 

Crohn's 35

Inactive Account
Hey PP, I am sorry you are having such a rough time of things lately. Yeah, even though I have been dx with Crohns for decades, if I have a flare he says I could have IBS too but when I take Buscopan, same type of drug for cramps and stuff they dont work. Sometimes when they can't figure it out, they just put a label on it, to satisfy or calm down your fears. Crohns is very hard to diagnose, and can take many tests before confirmation. Even if you have IBS diet still helps, no dairy, it causes havoc on your gut. What are you typically eating? Drinking?
 
Hi PP
I've just been diagnosed with Crohns after being labelled with IBS for all of my adult life - I'm 39 now !
Try to keep a diary of eating/pooping habits - it's only now I am starting to feel slightly better on the steroids that I reallise just how sick I have been. I think if I had written it all down I would have had a better case to put to the doctors and i might have got treated/diagnosed sooner.
 
I've been meaning to start a food diary but some days I can be fine with something and the next I won't. I just need to buckle down and do it.

I don't eat much because my gut hates food. I usually go several hours until I absolutely need to eat something. More so its just that I'm not hungry.
I ate a veggie sandwich at Subway for lunch yesterday and that hurt my tummy. :(
I seem to be done in by veggies. The last time I had a severe cramping episode that woke me up in the middle of the night I had eaten carrots and roasted chicken. The biggest thing I can't do is eat a big meal. I eat small portions and that usually helps. If I eat more I will be full and uncomfortable for several hours. It's like my food can't get through a certain point and stays in there forever.

I've avoided salads ever since I ate one and got sick for a week, unable to eat anything. Anything I tried to eat would come out five minutes later in a yucky burning acidic mess.

Bleh, it's just so hard. I'm sick of this.
 
Oh hon, many of us were told IBS in the beginning. My doctor actually told me my symptoms sounded like IBS or colon cancer, but NEVER IBD -- riddle me that. Thanks to this forum, when I went in for my first GI appointment, I was warned to prepare myself to hear it's stress or IBS. Ironically, those were the first words he muttered out of his mouth within the first 30 seconds of speaking to him. Like you, a food journal is pointless with me because one day I can eat certain foods and another time I'm in agony. The ONLY consistant food that causes havoc every time is tomato basil soup -- I can eat chocolate okay one time and the next time feel like death which was another reason why the doctor was reluctant to say I had IBD because if it was IBD, it'd make me in pain, "every time" (eyeroll). Wishing you all the luck in the world right now. Been there, done that and still battling it out with my GI.
 
Wow, that's exactly what he first told me!
"It's stress, you need to take a day off and go to a friends house."
First off, I've had issues while being out with friends. The worst was when we went out to eat and I had a rice and veggie bowl and nearly felt like I was going to die.

Or how about crapping your pants while out with friends? Ugh, that was so embarrassing. That happened years ago but we all went on a trip to Mexico and it was so embarrassing being stuck in a hotel with a group of friends and I had diarrhea the WHOLE week. :( Totally not fun when we were out and I had to cover up an accident and insist I needed to get back to the hotel without letting them know what happened.

I know my body, I know it's not caused by stress. At least my GI doc is sort of getting a clue now. This just seems like its going to be a long battle.
 
pewpewlasers said:
Wow, that's exactly what he first told me!
"It's stress, you need to take a day off and go to a friends house."
First off, I've had issues while being out with friends. The worst was when we went out to eat and I had a rice and veggie bowl and nearly felt like I was going to die.

Or how about crapping your pants while out with friends? Ugh, that was so embarrassing. That happened years ago but we all went on a trip to Mexico and it was so embarrassing being stuck in a hotel with a group of friends and I had diarrhea the WHOLE week. :( Totally not fun when we were out and I had to cover up an accident and insist I needed to get back to the hotel without letting them know what happened.

I know my body, I know it's not caused by stress. At least my GI doc is sort of getting a clue now. This just seems like its going to be a long battle.
That's what kills me, too. We KNOW our bodies. I know for a fact that stress can intensify my symptoms, but in no way is it the primary cause of it and that's something that my doctor failed to "get". I walked out of my first GI appointment on the brink of tears with frustration. I remember when I was listing my symptoms, giving my history, etc. he was jotting notes on my chart and casually asked me, "Do you have a family? Y'know, children and stuff"? I said, "Yes, I have three boys" and he goes, "Do you think they're the cause of this"? I honestly thought he was kidding and I sort of chuckled until I realized he was dead serious. I simply repied with, "Look, I know having three boys is a handful. I get comments on it ALL the time, but I assure you that they don't cause me to feel as if my appendix is going to burst through my abdomen and crap my brains out after I eat".

One of my best friends, who is a nurse and has Crohn's told me that IBS is code for "I don't know what in the hell it is" and boy, isn't THAT the truth. When she went in years ago for her symptoms, the doctor tried convincing her that she was depressed. After all, all mom's are suffering from something (eyeroll). She explained to him that her symptoms were NOT stress related and finally he nodded his head at her and said, "Okay, here's an Rx. Let's try this firstly". That bastard handed her a prescription for Zoloft, HA!

I have lost a lot of faith in doctors over the past year since I've gotten sick. I know, I don't mean to make such a generalization, but with the exception of my gynecologist who HUGGED me and told me we were going to get to the bottom of this, I have been made out to be some hypochondriac, bored-to-death, attention seeking housewife by my GI and numerous ER doctors. I've been told that I had Pelvic Inflammatory Disease (even though testing came back negative), ovarian cysts, refused an ultrasound in the ER because "it's probably nothing, but you should really follow up with your PCP and figure it out" and that's not even all of it.

The sucky thing, Pew? You're not alone with this. The good thing? You're not alone with this. :) If we're going to be treated poorly, well, at least we all have each other, LOL.
 
Hi,
I was also told in my early 20s that it was just IBS. When I lived in AZ 19-21. I went to a doctor there and he told me well your a college student, its very common for you to be stressed. Maybe you have a little depression or anxiety from moving so far from what you were used to. Then I thought when I moved back to NY at 21 I would try again. I was told at 21 because my sypmtoms were not debilitating that IBS is commong amoung young girls. Just eat smaller meals throughout the day. This was when my sypmtoms were not horrible but I knew something was wrong.
I gave up on doctors at that point. I ignored anything related to needing a doctor. When I was 26 the symptoms started to get worse. A Lot worse. I couldnt eat anything. I still tried to ignore it. I was losingweight, throwing up, running constantly to the bathroom even sometimes just for blood to come out. I ignored it for a while like this that one day my mother made an appointment for me with her doctor GP and said he will get this fixed. I refused to miss work like an idiot even though I was hardly able to stand. I was not well enough that day to drive so my mother did and said just dont go to work. I still went being the stubborn one I am! I said it doesnt matter they wont find anything later. I will hear IBS again because thats there way of just saying you have something to try to make you feel better when they have no clue. I lasted a little over 2 hours at work. When I went to get up to go to the bathroom, I had to grab onto the side of the desk I felt like I was going to pass out. I then said I had to go left and thank god my mother was waiting in the car the whole time outside. She said I knew you wouldnt make it through. We went to the doctors and he said go to the ER im admitting you. I was, and tests were done over that week by the GI there. It was like they put a fix a flat in me to make me mobile again then sent me home. I lasted a week and was in the same position as before. I refused to go back to that hospital so went to another one. St francis. I found my GI there that I still go to. He told my mother and myself I will not let her leave till I know what this is. And it was Crohns. I thanked him when he told me my Diagosis. From the doctors the prior years not finding out what it was when it was not horrible, almost 2 feet of my ileum was sooo narrow and months later had to get a resection.
I know this should be in a my story section because there is more and I never did that! Sorry its long!
But like you said PP ypu know your body! When depression or stress is mentioned I usually say wouldnt you be if you were continuously not feeling well. Dont give up like I did and ignore this. There are some doctors out there that are somewhat competant and will be able to help you.
As far as the food I would try to stay away from a lot of veggies for now!
 
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vshirey317- Wow! Do we have the same doctor? LOL!
He asked how my home life was and I told him I am a full time student and I am a stay at home Mom of a two year old.
Hey, that's why you are sick!
GIVE ME A BREAK!
No, I tried to explain to him....When I am not feeling well I get stressed because I cannot give my son 100%. In turn he does things that stress me out because he needs all of my attention all the time. I'm already feeling sick, it just makes me feel worse!

Jennjenn- That sounds terrible! I am so sorry that you went so long having to deal with that. Up until now I have been sucking it up and convincing myself that its normal.
The worst part was I used to be so embarrassed of my diarrhea and other symptoms that I would never tell the doctor. I would go in complaining of my stomach problems and they would ask, "Do you have diarrhea?" I would lie and say no because I was so embarrassed of telling anyone.

I'm just so tired of this now that I just go in there saying, "Look, I crap my insides out all the time. I wake up at 3am with terrible cramps and sit on the toilet for hours while my insides drain out my butt. FIX ME!" When it started getting really bad I had to get over it fast. I wonder what he thinks when I tell him I feel like I am going to crap myself all the time.
 
C

crazycanuck

Guest
Im sorry for the problems and I felt the same way about switching doctors. My old doctor only had two solutions to every problem, increase dosage or steroids. I was getting fed up with his lack of effort in explaining my condition and solutions. I switched doctors 3 weeks ago and now know more about my condition than I did in the almost 2 years prior. I did have to switch meds, found out that I have been getting worse because of the treament I was on and the whole bit. But I thank god I made that switch now because I didn't realize how much better it could have been. I believe you can never really beat this disease down unless your fully confident with every part of it. This forum helps with support and your doctor should too, your doctor should be there for you and listen and help with your concerns and questions. Also please don't be embarassed with your symptoms your very much normal. Infact I was up just last night with you, had 4 hours of sleep last night. Also remember these doctors work with people like of all of us on here for a living and I gaurantee no matter what you say they have heard it before. I had the embarassing feeling at first too but I had my aunt who has colitis tell me this and it made sense. Good luck and no matter what you do I hope you get better quickly.
 
Dont be embarassed. Thats what they are there for. If you do not have any confidence in this doctor, have your files transfered to another one. After the follow through they should have more answers. If you still do not feel comfortable with the doctor and his or her answers then I would search for another one. With any long term condition I think its better to find a doctor that you feel comfortable with. Whatever you do dont hold back necessary information to which they might be able to help you better, and dont give up.
 
If I had told my doctors earlier what happened I might not of gone through this for so long.

I had to resign from my job after my son was born two and a half years ago because I had a c-section and developed a stitch abcess which caused my incision to reopen and I developed four really deep tunnels in my abdomen. I couldn't go back to work because I was in so much pain and had to be on pain killers for months until it healed. They told me either come back or resign and there was no way I could work because at the time I was a manager in a retail store and I could barely stand because of the pain, let alone stay awake from the pain killers. Because of that I lost my insurance and was without it until a couple months ago. Now that I can finally see a doctor again I am just so fed up with being sick that I will tell them everything just so they can fix me.

I talked to my GI about the complications from my c-section and he brought up that there may have been a fistula but it's hard to say. I wouldn't be surprised if the scar tissue has irritated my bowels even more since.

It's been a really long hard road but there may be a light at the end. At least I hope so. When I was without insurance I went through some really tough times. Luckily, some of the symptoms haven't come back. There was one month that it was so painful for me to go to the bathroom and I would bleed everytime. I'm lucky that I haven't had to experience that again. *crosses fingers*

More so I am lucky to have found this forum and so many supportive and understanding people. I really need it.
 
C

crazycanuck

Guest
Wow Im so so sorry thats awful. And I'll tell you I know there is light at the end of the tunnel for you there always is, just different obstacles to get around to get to that dammed light. I'm sure you'll get there and I hope you get a little less stressed being able to write on here which I hope is making you feel better. Best of luck!
 

mwb3779

Kitchenhawk
You guys are lucky I have to go thru this with just a GP. I can't use a GI doc because they are a specialist unless I pay for it out of pocket. Just found that out today. I'm taking 6 mp and I know they need to check my blood reg. otherwise.... I'm kinda stuck. Starting to feel alone again.
 
mwb3779 said:
You guys are lucky I have to go thru this with just a GP. I can't use a GI doc because they are a specialist unless I pay for it out of pocket. Just found that out today. I'm taking 6 mp and I know they need to check my blood reg. otherwise.... I'm kinda stuck. Starting to feel alone again.
Your insurance won't pay to let you see a specialist?
 

mwb3779

Kitchenhawk
I don't have insurance anymore. :( I recently lost my job and insurance. Now I have to fend for myself. Well kinda. I was able to get a little help from the state. But that's just for regular dr visits and prescriptions not any specialists. Life is kind of hard right now.
 

mwb3779

Kitchenhawk
Thanks, its pretty hard right now that's for sure. I'm a little nervous though with taking 6 mp and now I have to have blood work done to check for bone marrow toxicity. Hope he can do that and its paid for by the state.
 
I had the same GI for 23 yrs and he retired. My wife had seen the new GI that replaced him And I met her when she did an endo on Janis. She is now my regular GI and I love her. She will listen to you and doesn't give you the "I'm the doctor" attitude. She insists on seeing me at least twice a year no matter how things are going and she also told my wife to call when I'm being stubborn and not telling how things really are. She even gave Janis her home phone and cell phone in case things should get really bad. I also have learned more about CD than I ever knew since I started seeing her. And I don't feel embaressed telling her about any problem I have.
I just plain love her. Do you guys think she'd mind marrying me even though I'm already happily married? Oh well.
 
PIRATE!!! Does your wife read your posts ;)

Mike - sorry about the insurance thing buddy - definitely stress you don't need!
 
No she doesn't read them and don't go tell on me. lol

I do read them to her. She just rolls her eyes. After 31 yrs of marriage she's use to my goofyness. When we got married a bunch of co-workers came to the reception. Janis had never met them before so I introduced them to her one at a time. When I got to one named Rose a said "Rose this is my wife janis. Janis this is my mistress, Rose." Janis just laughed and said "Why do you keep sending him back." I love to joke around and Janis is use to it. That's one reason I love her so much. My one and only.
 
It's hard not to get tired of seeing the doctor all the time. Especially tiresome when I need to call them to tell them my medication only worked for two days and now it's useless and I need something else.
 
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