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Has the GI told you about PTSD and Crohns?

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Posted 9/29/2012 3:33 AM (GMT 0)
Now, my GI is back telling me that all my pain, decrease appetite, diarrhea, some constipation, weight loss, nausea all the time, eye problems, etc. are not from active crohns but from PTSD. He describes this as my body still thinking and acting as if I have active crohns. I am really sick with crohns. I am very fatigued, dizzy, body aches. Have any of you heard about this? To treat this, he wants me to take Seroquel 25 mg at bedtime. Seroquel is an antipsychotic. I tried this dose one time and I was so drunk the next day. I can barely take 1/2 of a dose. Now, he wants me to take another med-antidepressant which is used in the elderly which helps to gain weight but also helps sleep. I can barely get up in the morning and already take trazodone for sleep. My last CT and colonoscopy did show some ulcerations but he said that it didn't note much inflammation. I have lost 30 lbs since last Nov or Dec. and 6 lbs in 3 weeks. I believe my disease just isn't showing the severity on films. My labs do show an increase plt count and for me an increase Cpeptide. Can anyone help? I asked him about TPN but again he wasn't interested. He said my labs didn't show malnutrition. Actually, my albumin was on the lower level of normal as were most of my nutritional labs. I never saw my Zinc or iron levels. My hb was a little low. My glucose was low on all my labs and K was only low on one lab.
Posted 9/29/2012 11:04 PM (GMT 0)
That's a new one on me. Going on my 30+ years of experience, it sounds to me like you ARE flaring. Are you able to get another opinion? This just sounds like a doc who wants to blame your CD symptoms on something else. JMHO.
Posted 9/30/2012 12:05 AM (GMT 0)
I think calling it PTSD and giving you Seroquel is a bit extreme! For me, I find that as I'm recovering from a flare I often have leftover irritable bowel before things completely settle down. PTSD is a term more commonly used as a a psychiatric reaction to trauma, like war or abuse. I hope that your GI's intent was that your body reacts after the physical trauma of the flare and you still have some symptoms. I do think antidepressants can possibly help with sleep, stress and even to help lessen chronic pain, but antidepressants will do nothing to calm Crohn's disease itself. I agree with lamb61 that if you can get another GI opinion you should do that. I think your labs should be completely normal if you are in remission, and if you are still in a flare, you need more than antidepressants.
Posted 9/30/2012 12:35 AM (GMT 0)
Thank you for your opinions. I don't know what I would do if I didn't have this forum to vent and everyone's experiences with living with crohns to help me through these day to day battles. I have even tried to look up what he is telling me on the internet and I can't find it. I do feel like I am going through a bad flare and need additional medical treatment that I am not getting. The bad part is I came to UNC from another GI doctor at Duke because I needed a second opinion. The GI at Duke just basically stopped doing anything for me except prescribing Humira because my films were normal and labs. But, I was experiencing bad symptoms. Now, my films are not showing bad inflammation but some abnormalities and UNC want do anything else either. Duke didn't say anything about PTSD but did mention possible scarring or muscle spasms uncontrolled or IBS. I saw Dr. Wilson there. Nobody will do a pill cam or small bowel follow through. I also haven't had a scope which before showed alot of inflammation in my transverse colon. I wonder if a colonoscopy can spot this like a scope can or what they tested me with before that was specific for this area but wasn't a colonoscopy. I don't understand why I can't have a pill cam for goodness sake. I keep requesting one. I came to UNC through their ER because I was in desperate pain one night and knew Duke wasn't going to help me any longer. UNC did admit me and I thought was going to help. I got put with a GI from there. My GI does seem to care and he did call me today to see how I was doing. I sometimes think they just don't know what to do with me because of my films not showing what my symptoms are saying. I just know I am really sick and can't live this way. I am really having a hard time lately due to the ongoing fatigue and complete body melt down because I have no energy with not eating.
Posted 9/30/2012 2:37 AM (GMT 0)
I believe you that you are really sick. It makes me really angry when docs don't listen to their patients. Are you married, or do you have a close family member or friend who can advocate for you? I think you should ask for an office appointment with your current GI ASAP. Bring someone with you, and you should lay out all of your symptoms and concerns. If you get nowhere with that, then it's time for a third doc. I don't know what you meant in your post when you write, " I also haven't had a scope which before showed alot of inflammation in my transverse colon. I wonder if a colonoscopy can spot this like a scope can or what they tested me with before that was specific for this area but wasn't a colonoscopy." A colonoscopy is a scope of your lower intestines, and an upper endoscopy is a tube that goes down your throat through your stomach. A CT scan or pill cam can visualize your entire small intestine.
It is so hard to advocate for yourself when you are weak and sick. Your doc needs to understand that you cannot just take Seroquel and go away. I hope this helps.
Posted 9/30/2012 12:45 PM (GMT 0)
Well, on the positive side, I can't help but feel at least slightly impressed by your GI's creativity. Whereas the vast majority of GIs are content to settle for run-of-the-mill IBS to write off GI symptoms they don't understand, yours takes it one step further to a full-blown psychiatric condition and antipsychotics!

On the negative side, you seem to be almost being wilfully neglected: not having small bowel tests done for a suspected Crohn's flare-up, ulcers on your colonoscopy being dismissed, TPN being turned down. Increased platelets is one of the inflammatory markers for Crohn's, btw - it's something that I always get and something that my consultant has mentioned to me.

Re food intake. Can you tolerate drinks like Ensure? An all-liquid diet is actually a medical treatment for Crohn's in some parts of the world, but seems little known about in the US. Anyway, the basic idea is that you follow an all-liquid diet for a few weeks, then you very carefully reintroduce solids back into the diet, testing for bad reactions to individual foods as you do so. But the actual liquid part of the diet is what causes many folks' symptoms to improve or even go into remission.

In the meantime, if you can find an advocate for your cause, I would definitely go that route. It can be hard to deal with stonewalling docs at the best of times, never mind when you're sick and in pain.
Posted 10/1/2012 5:03 AM (GMT 0)
Before my husband was diagnosed with crohns, when he was in the hospital with c-diff, and not getting any better on antibiotics, my husband's GI told us that he is having post infectious ibs and is not able to sleep at night and going to the bathroom with cramping and diarrhea because he is anxious and depressed. He prescribed him an anti depressant that is supposed to help with sleep and ibs.

When in a few days they finally did a full colonoscopy and discovered that his colon was like hamburger meat, he apologized for not taking it seriously and started treating his crohns in earnest with remicade.

Doctors make mistakes too, so don't just let it go. If you don't feel this is the right diagnosis and you are not improving on the course of treatment, it is time to dig further. If this doc won't help you dig any further, then it is time to find a doc who cares about your quality of life, not just test results.

Do you think a short burst of prednisone will help? I hope you get some real answers soon that will put you on the road to recovery.

PV
Posted 10/1/2012 12:01 PM (GMT 0)
Well...I never got PTSD, but I was told that I didn't have CD, I was just upset that I wasn't married yet. Yup, those path reports meant nothing to that doc. ps I am married now and I still have CD hmmm?
I think you need a better discussion and if this doctor just wants to treat you mentally, you need to find an actual GI who treats your guts. My scopes show I am in a great remission, but when there is significant pain to affect my life, my GI steps in to care for it. Talk to them...and if you are not getting enough care, try another doc. Take care.....
Posted 10/1/2012 2:58 PM (GMT 0)
Try to see Dr. Scott Plevy. I'm pretty sure he's still at UNC. He's one of the best in IBD.

PTSD?!?! In you gut?!?! Did that doctor actually go to med school? That is just rediculous and insulting. I would be mad if I were you. Hell, I'm mad for you right now. Seriously, do what you can to see Dr Plevy. Hopefully he can get it under control. And he strikes me as the type that if he doesn't know the answer, he'll find someone who does.

Good luck.
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