Any Ideas?

[Nic]

Ok so this question is about my husband.

New years eve he was admitted to the hospital because he spent all day (starting at like 4-5 in the am) pooping blood and was in severe pain. They did a CT Scan and it showed severe inflimation in his colon and they said he also had a serious infection. He ended up staying in the hospital for about a week. They loaded him up on steriods, antibiotics, and pain meds. They decided to do a colonoscopy because the GI doc thought he had UC, he said he had all the typical symptoms(he also started him on Pentasa while waiting for the test). Well they did the colonoscopy, which they used a pediatric scope on him because they were worried about the inflimation and hurting him more and then sent him home on Prednisone and antibiotics, he was on them for a week, to wait for the results. When he called 2 weeks later the nurse said they found NOTHING! Said he had some internal hemorrhoids that were nothing to worry about, but that his colon showed no signs of UC! Well since then he still isn't normal. He's had nothing but D since (not one solid poo & it is a little mucousy), several times a day (he was in the bathroom all the time before this as well), and still has some blood when he wipes(which is prolly from the hemorrhoids *fingers crossed*). I swear you would think he is the one in our house with Crohns, he is in the bathroom more than I am and I'm in what seems to be a flare up!

What do you guys think could be going on? I'm not sure if they checked his intestines during the colonscopy, I would like to think while they were in there they did, but they didn't mention it. I have suggested to him that he asks for a Upper GI test to see if maybe its in his small intestines somewhere. With all of his problems it seems like Crohns or UC to me, but I'm lost now that the doc said he didn't see signs of UC, even though he was convinced thats what it was before the colonoscopy.

Sorry this turned out so long and thank you for reading it. My poor husband is starting to get worried because he says something isn't right and I don't have any more answers or ideas for him

 

[Tan]

Hi Nic, Oh the poor guy... you both are going thru hell at the moment my heart goes out to you.

I noticed you said he went on steriods and antibiotics did he get better while on them?? Is he still on them??
I know Pred is meant to be awesome when you have Crohns or UC so if he didn't get better then maybe its something else. Im not an expert or anything I have only been diagnosed in Sept so still learning but from what I have read everyone seems to think its a magic drug and I also found it really great when first diagnosed.
It does sound like crohns or UC amd considering they did find inflammation in his CT maybe it was missed in the colonoscopy or its somewhere you can't get too with the scope. I know I was lucky that my ulcers where found as they are in the Terminal Ileal and my GI only manage to find a few but then when I went for a small bowel follow thru they found heaps more. I asked him why they found more then when he did the scope and he said the scope can only go so far into the small intestine. So maybe that what happened with him its in a place they couldn't see.

Good luck hun don't give up and push for answers if your hubby is saying something it wrong then it is.. I know I felt exactly the same we know our bodies better then anyone else.

 

[Nic]

Hey Tan! Thanks for responding! He did get better while on them, or at least seemed to, they sent him home from the hospital so I'm guessing they wouldn't have sent him home otherwise, but then again the docs/hospitals up here aren't the best from my own experience! He's not on them anymore, they only kept him on them a week after he left the hospital. And I have to say thank goodness because between the withdrawls from the pain meds and prednisones side effects he was miserable and whacky! He couldn't sleep at all, he would bring the laptop to bed and would stay up until 6-7 am every night! He had a really hard time on them and said he didn't know how I handled being on them for a few months.

He actually was in the bathroom again while I have been typing this, his second time since dinner. He just came out and said it was a little more normal this time, but it looked like he was taking Pentasa again, little white dots, said it was weird. LOL sorry for the graphic description, but I'm really trying to figure out whats going on with him!!

I'm still learning all this stuff too, as I was just diagnosed in July 2009 and like you I'm 28! Seems we are running along the same path This forum has been my life saver, it helps me so much!

Thanks again Tan!

 

[pb4]

That sound very bizarre to me...they saw inflammation, even had to use a pediatric scope due to how bad it was then weeks later they say there was nothing??? I know crohn's can be more mysterious than UC for the most part, crohn's can pop up anywhere in the GI tract from the mouth to anus, UC is limited to the colon/rectom only....maybe he had a bad case of C-diff but even that can take a long time to clear up and certain antibiotics need to be used for it, especially since often C-diff can occur from over-use of antibiotics.

Maybe find another GI for a second opinion and for more tests to be run, small bowel follow throug, blood and stool.

 

[Tan]

I know exactly how you feel this forum has been my life line too Im forever on it my hubby just walked over and said you must have read everything thats on there by now. Just doesn't get it... he is sitting infront of the tv vegging out while I prefer to sit in front of the computer and speak with my virtual friends. I just gives me comfort to talk with everyone on here. Makes it easier to deal with this disease knowing others you are talking with feel the same way.

I thought maybe if he had started feeling better on the pred it might have given some indication but only being on it a week would only mildly help. I was on it for 10 weeks and it did make me go slightly crazy.. had issues sleeping had to end up taking sleeping tablets, I got the moonface and also some extra hair!! It sucks when you can't get decent help from docs really can be a slow process. So you go thru a hospital not a private GI??
We do seem to be very similar.. how funny. Hope you start to get on top of your crohns too with meds.. you were looking into starting something else after the imuran is that right. Hope your hubby starts to feel better soon. It would be horrible to have both of you sick at the same time.

Edit - just noticed on your signature that you start Humira soon hope it works for you. Im not sure what my next meds will be I don't think it will be Humira as I only have mild to moderate crohns what level is yours?

 

[Trysha]

Hello Nic,
I was concerned to see that you said the nurse gave the results'
Usually the GI follows up after investigations with a face to face report to the patient.
Perhaps you should try to speak with the GI directly if possible and let them know the symptoms are still bad., and is it possible that you received the wrong report?
These things do happen.The fact that use of a pediatric endoscope was necessary
also indicates something was happening in the large colon.Such severe inflammation would take time to heal.
The colonoscopy does not cover all the areas that Crohn's could be and further investigations are indicated with the continuance of symptoms.
It could still be UC.
Sometimes it can be both.
It would be a good idea to get in touch with the GI as soon as possible, or at least your family doc.
Good luck with everything
annsplash

 

[Nic]

Tan, He saw a GI while in the hospital, he has his own practice, but my hubby hasn't been there yet. But I'm gonna make him call them tomorrow and figure something out. Only problem is up here (upstate NY, near the Canada border) is that they only have a couple GI's and it can take months to get into them. That's why my Crohn's got out of control, couldn't get into a GI in time to up my Imuran dosage and get into remission.

I think my Crohn's is moderate. But my new GI seems to think its crazy right now. I really think that my biggest problem is malnutrition. I'm going tomorrow to have my Vitamin levels checked and I'm hoping if some are low and I start on supplements that I will feel loads better! I don't have the crazy D and pain that everyone else seems to have. I just get weak, nauseas and bloated. Right before I got dx'd they thought I had Vertigo, its a good thing I brought up my past dx of IBS and my doc sent me to a GI.

Annsplash, Thank you for responding. I'm going to have him call his GI again tomorrow. I think they need to do an upper test to see if maybe it is in his small intestine. Something is def going on and he needs to be checked again. Only problem with him going to our family doc is he is in the Army and has to see an Army doc, who I absolutely can not stand, and if he goes to him right now with the problem he is just going to dismiss it and tell him that he's trying to get out of deploying (they are supposed to leave in April). But I am going to stay on top of him and make sure he gets something done!

 

[Nic]

That sound very bizarre to me...they saw inflammation, even had to use a pediatric scope due to how bad it was then weeks later they say there was nothing??? I know crohn's can be more mysterious than UC for the most part, crohn's can pop up anywhere in the GI tract from the mouth to anus, UC is limited to the colon/rectom only....maybe he had a bad case of C-diff but even that can take a long time to clear up and certain antibiotics need to be used for it, especially since often C-diff can occur from over-use of antibiotics.

Maybe find another GI for a second opinion and for more tests to be run, small bowel follow throug, blood and stool.

Thanks for responding pb4. It is bizarre! I just can't wrap my mind around it! I had to google what c-diff was, WOW that is some crazy stuff! I really hope thats not what it was!! He hasn't been on any antibiotics, just pain meds every so often for his shoulder. We asked my gastro last time we were there, hoping to get another opinion without having to wait for another appointment but they didn't help much. Hopefully we will be moving back down south again soon and we can get a second opinion there. The docs here don't seem to be very good

 

[pb4]

I sure hope he finds answers soon...over-use of antibiotics is one common way of developing C-Diff, but it can also be caught by an infected person, even just touching...my mom (she has UC) was recently in the hospital with a few health issues going on and one of them was C-Diff, we had to put on gloves and gowns incase we had any contact with her so we didn't catch C-Diff from her (last thing she needed with her ulcerative colitis, last thing I'd need with my crohn's).

 

[Peaches]

Hey Nic - sorry hubby is having a rough time. I would call the hospital or the doc's office (whomever keeps the copies of the scope records) and order a personal copy of the scope with results for yourself. This way you SEE what is going on rather than someone else giving you their interpretation of what the GI scoping saw and wrote.

Also - I think what you are meaning to say is you want him to have a small bowel follow through. An upper GI isn't going to get into the small bowel - just esophagus and stomach. Not sure if that is what he needs or not. I'd want to get my hands on a copy of the scope with doctor's results and see what was said there first.

Hope it is something simple - and not "forever" for him. Let us know how things go.