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Am I Crazy?

I've had crohn's for 21 years now and IBS for 6. It's difficult to differentiate the two since the symptoms are the same. I've been to numerous doctors in the past few years and tried just about every medication available but nothing seems to work for very long. It's just robbing me of my life at this point.

Now I feel like the doctors look at me and cringe becuase they don't know what else to do. I don't think they want to deal with me anymore. And I don't know what else to do to help myself!

I feel like I'm going crazy or dwelling on it too much maybe. But it's difficult to ignore when you're running to the bathroom all the time and in constant pain...I guess I just want to know I'm not alone. Has anyone gone through something similar to this? If so, what have you done about it?
 
Sorry to hear the disease isn't being kind to you. Sounds like your doctors aren't either. I'd suggest finding a new GI that'll listen to you and help you find a plan that'll fit you best.

As far as your diet have you tried any changes or are you just relying on medications?

You're definitely not dwelling on it too much if you're in pain and experiencing a flare, you're ill and your doctor is doing their job it sounds like. Good luck to you, and best wishes!
 

Jennifer

Adminstrator
Staff member
Location
SLO
Hmm, they should have at least tried to do something about your pain. For me I'm always running to the bathroom and I live with it for the most part and its just become normal for me. I use bath wipes to help my butt when it needs it (cause constant TP just hurts after a while) and I use Immodium to stop diarrhea when its out of hand or when I won't be around a toilet for a few hours.

If your doctors are doing nothing and you're still in pain and have constant diarrhea, then I agree that you should look for a new GI because I don't think its right for them to just throw up their hands and let you suffer.
 
Thank You

Thank you both for replying. I have tried bland diets and even liquid diets, but those didn't help. The doctors I've seen so far have not been very helpful as far has diets. I am going to make an appointment today to see a new doctor. Maybe someone else will be more willing to take on my case.

I appreciate the support here. I often feel alone in all of this and it's nice to know there's a place I can come where people understand. :wink:
 

Crohn's 35

Inactive Account
Hey Amy, maybe you should try to eat bananas and apple sauce, two natural binders. Also cholestyramine, from your doctor will calm it down. You need to find away to get your pain undercontrol, no one should have to live that way. You are def not crazy, getting used to this disease takes time... hey it has been over 20 years of symptoms and I still try to be 100% positive (hate that word) but I am not one of the lucky ones who find remission or out of a flare long. Everyone is different, so hang in there, let us know what your Doc says ok.
 
Thank you all so much for your helpful advice! I am going to try modifying my diet again (and will definitely incorporate bananas and applesauce). I will update you with what the new doctor finds. Thanks again for your support,
Amy
 
Hi Amy,
Yup been there with a Doc who led me to believe that the rest of my life would be 60 mg's of corticosteroids, a moonface, and just suck it up! I researched everything and looked into clinical trials, and new drugs. I then presented my research to my Doc. At the time, the steroid (that has a time release aimed to dissolve in the illeum) can't remember the name... had just been released in the US and i lived in australia. I told my doctor I'd fly there to get it. He seemed perplexed as to why i would go to such lengths! He was happy just to treat the symptoms and not the cause. So, while I was still under his care, my health remained poor and illness was preferable to the side effects of steroids.

Then, I ended up moving to the US, and found the most incredible GI, and a woman! yaaay! Instead of some stuffy old bloke poking around down there! ack. She is caring, and has plan A and plan B and Plan C etc... She helps me with all sorts of treatment that I inquire about. I am now so well, off steroids and have my life back after years of illness. It wasn't until I found her that I realised what a doctor could and should be. When I developed nasty side effects from long term flagyl, she had a back up plan. I think i'm on plan G by now... and it all seems to be working just fine.

So I encourage you to shop around For a new GI, arm yourself with knowledge about your disease and the current treatments and see what their willingness is to create solutions and plans for you. Are they caring? Do the doctors ask the right questions? Or are they aloof? Really interview them and see how you feel about them.

I hope you find a caring doc. and if you're in Santa Monica CA, USA, I can recommend a great one!!!

Oh, and as far as the trots go, I still run to the bathroom here and there and I never know what tomorrow will bring (or the next hour for that matter), I never trust a fart, and I make sure I keep the undies lined with pantiliners for just in case. I also keep a spare pair of clothes with me for emergencies and a full travel bathroom kit, with wet wipes, small packet of soft tissues, pantiliners and hand sanitiser like purell. this all helps to give me confidence to go out, and travel... and if the worst happens, I've got it covered. No worries!
 
oh ps - bananas are too hard for my stomach and cause more probs, but apple sauce is a winner. It is so individual. I'm sure by trial and error, you will find what works for your guts! and if you have any tips and what worked for you, let us know.

Also, I was reading in my Science magazine about Marijuana derivative that is showing promise for Crohns, and other autoimmune disorders.

Also, there are still clinical trials going on for hookworm and Crohns. Sounds a bit yuck, but it too is showing promise for healing. Perhaps looking into clinical trials might help you explore new treatments. It sounds like you've really been on the merry go round of doctors and meds.
 
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Crohn's 35

Inactive Account
Welcome weetbixkid! Perhaps you could join us and put your full story on a my story thread so everyone can greet you and welcome you to the community, your meds and story. Glad you found us ;)
 
Hang in there....I feel crazy too! Ive been really sick for over 12 years and everytime I would go to the DR or ER they would treat me like I was crazy since they could never figure it out. I eventually started to think I was crazy or mentally making myself sick. So the last time I got really sick, I decided to not do anything about it.....I mean they never had answers and always sent me home. So I laid for days with a fever and severe pain....I finally went to the ER with a 103.8 fever and couldnt walk....I almost died on Valentines day!! I was in the hospital for weeks and they sent me home saying it was Colitis. I was back in a few weeks and worse than before. I spent most of March in the hospital to finally get put on Crohns meds....but no diagnosis!! Just kinda trial and error....well the meds worked!! So it is presumed I have CD....but still not absolute!! Im still so frustrated, but have some hope. Just remember while its really hard for you and this has become your life.....it could always be worse!! Stay strong, and good luck~
 
NEVER let a doctor ignore you or treat you badly. They work for YOU. Not the other way around. Even if you have to drive a bit, there are other doctors. Not all Gastroenterologists are created equal. You have to find one that works for you and with you!

Sorry to sound so harsh, but it makes me angry when I hear about people not being able to get good treatment because their doctors are only giving them mediocre treatment. Tell your doc to get off his arse and treat you - or you will say goodbye. And then do it!! I have had to. It works. You don't owe a doctor anything. They owe YOU their best efforts.
 

ameslouise

Moderator
Ditto all above. Remember that you are the customer and you have a right to shop around for a doc that is a good fit for you.

You are not crazy - your doc is for making you feel that way!

- Amy
 
Thank you all so much for your responses. I feel better knowing I'm not the only one going through this, but I am surprised by how many of you have had similar experiences with doctors and hospital staff. I am thinking about traveling to Mt. Sinai. I have heard good things about their GI specialists. Has anyone been treated there, or familiar with that hospital?

Thanks again everyone for sharing your stories with me. It really helps. :)
 

Crohn's 35

Inactive Account
Yes, go to the edit of your post and there is a delete part of it, you can put a reason for deletion if you like.
 
Hang in there. Let me tell you my story.

I was dx'd in 1999 with UC (proctitis) by an excellent GI in New Jersey. I eventually relocated to PA, and got a different GI, who seemed pretty good. During 2008 I started having persistent GI issues, along with some systemic symptoms (fatigue, achiness, joint pain, swelling, and burning diarrhea). I had an awful episode Feb 2009 and GI dr dx'd gastritis (rx'd Flagyl) and did scope in March. Said colon looked great, and biopsies were normal.

GI symptoms came and went for rest of year. By November I was at my family dr in acute pain and bloating and he was convinced I had diverticulitis. He sent me to hospital for CT scan - it showed none. Everything looked fine. He dx'd c-diff/bacterial overgrowth and put me on flagyl. Around the same time I got a sinus infection and he put me on ceftin. I felt like a million bucks being on those 2 meds! He gave me refills on the flagyl and said if the pain got bad again I would need to get right back on it.

Pretty much my symptoms came and went the same way they did the year before. You know that feeling...that something's not right in your body. So I decided to call the GI dr that I saw back in 1999 in NJ. Best thing I ever did.

The consult went well, she remembered treating me. I told her how frustrating it had been because I knew something was wrong with my stomach. She asked questions and listened to my symptoms. She answered my questions. She actually promised me that she would find whatever was wrong. She ordered bloodwork - my B12 was low - in the 300's. I think the terminal ileum is a common place for Crohn's, and also the place where B12 is absorbed. She wanted to verify with the scope.

She did scope earlier this month. She said my terminal ileum looks stiff, but biopsies came back normal. Apparently this is a milder case of terminal ileitis, but she does dx Crohn's. I'm on B12 shots, and have just started Lialda (mesalamine).

She is a superb dr and diagnostician. You and most of the people here have been through a lot more than I have. Although I've had GI issues most of my life, they've never been severe enough to really interfere with normal living. Now I've gotten a taste of what Crohn's patients go through, I mean, these people are incredibly strong and resilient.

I'd be happy to give you her contact info if you'd like.
 

Crohn's 35

Inactive Account
Welcome Char, you need your own thread on the YOUR STORY, I am sure dingbat or Nancy can change this, not sure.


I too am low on b12 and do have the shots. The terminal Ileum is a favourite spot for the Crohns to camp on. Not surprised that inflammation and markers dont always show on biopsies but if you are not in pain or mega diahreah, you are doing something right to calm your Crohns down. EVeryone is different and the severity, so we try to cope and do the trial and error thing.

Glad you found us. Lots to learn here.
 
Thanks Jettalady. I will repost on my own thread soon.

And I am very glad to be here. Have lurked the site for a week or so and I've already learned a lot!
 
Sounds good Amy. From my experience, a poor doctor equals poor health.
Good luck with your new lead. I hope it works out and your health improves!

Also, I'm sorry about posting that long winded story as I didnt mean it to be 'my story', rather, a long way of saying, keep looking for the right doctor, when you find one thats right for you, he/she should have several action plans for your health, and care for you wholistically... EG: ask you about foods, your mind health, fitness, and how your health is affecting your relationships. All of this info helps your doc treat you properly. Crohns gets worse with stress, and a good doctor should have their finger on the pulse!

I really really really hope you find the best guts and bum doctor ever!!
 
Welcome weetbixkid! Perhaps you could join us and put your full story on a my story thread so everyone can greet you and welcome you to the community, your meds and story. Glad you found us ;)
Hi Jettalady, thanks and sorry about that. It wasnt very succinct in getting to the point which was... keep looking for a great doctor, its worth it, and you can get you life back! Cheers.
 

braveheart

Passionate Dreamer
I feel like I'm going crazy...
You are not going crazy. As same as you I've had Crohn for more than 20 years and at this point in the time I feel I know Crohn better than ANY Gastroenterologist. I don't need to see an x-ray to say how good or how bad is my Crohn for instance. I know which kinds of food let me feel better or worse, etc.

Sometimes doctors don't know what else to do. I had the same feeling you have some time ago and I started looking for answers on the Internet. And there is a lot on information there. I think this forum is awesome. I’ve learned a lot here. For example I’ve learned what Questran is for and I asked my Gastroenterologist to let me start taking it, he agreed. Now I am feeling a more conformable dealing with diarrhea.

This is a real 2.0 collaborative place. I think Internet and this forum is a good source of information. I hope you get some answers, and support.


Sebastian
 
Thank You!

This site has already been so helpful for me and I've only been on it for a week or so! What a wonderful resource.

Thank you all for responding. I've learned about many different approaches from all of you and I'm anxious to talk to my doctor about them. I guess I'm not going crazy after all! :)
 
Doc's in Chicago say...

I've had crohn's for 21 years now and IBS for 6. It's difficult to differentiate the two since the symptoms are the same. I've been to numerous doctors in the past few years and tried just about every medication available but nothing seems to work for very long. It's just robbing me of my life at this point.

Now I feel like the doctors look at me and cringe becuase they don't know what else to do. I don't think they want to deal with me anymore. And I don't know what else to do to help myself!

I feel like I'm going crazy or dwelling on it too much maybe. But it's difficult to ignore when you're running to the bathroom all the time and in constant pain...I guess I just want to know I'm not alone. Has anyone gone through something similar to this? If so, what have you done about it?

I can totally relate to your experience and fustration! I feel crazy sometimes too. I was told that I had IBS for a long time, both before and after my Crohn's dx.

However, I was recently at a IBD conference/meeting thingy. Some top doctors from the Univ. of Chicago spoke and said that IBS is a crock diagnosis. So, if you have UC or Crohn's and are having symptoms - they are from ur disease, not IBS.

Maybe now, you can stop beating yourself up?:)

Hope you feel better!
 
I can totally relate to your experience and fustration! I feel crazy sometimes too. I was told that I had IBS for a long time, both before and after my Crohn's dx.

However, I was recently at a IBD conference/meeting thingy. Some top doctors from the Univ. of Chicago spoke and said that IBS is a crock diagnosis. So, if you have UC or Crohn's and are having symptoms - they are from ur disease, not IBS.

Maybe now, you can stop beating yourself up?:)

Hope you feel better!
Thank you for your response. Do you have any of the doctors' names, or know where I can find more information on the lecture?
 
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