Any help would be great

[cara_and]

My husband was diagnosed with crohns about 1 1/2 yrs ago. Although at first the doctors were great it now feels as if they are not as helpful. Everytime I call up to get an appointment they act as if I should go to my family doctor. But when I call my family doctor they tell me to take him to the specialist. Anyway now we are having another issue and I don't know who I should call.
At first we thought my husband had the flu. His stomach was upset and he had diarrah and was tired. It has been over a week and although the diarrah is a little better he still has some cramping and naseua. He is tired alot which we had been getting used to but its even worse lately. But its the stomach issue that really has me worried. He hasnt eaten anything he shouldn't, He has only been drinking water and gatorade. Do you think I should call the specialst or give it some more time?
For medications he is taking Pentasa and Werchol. We do have some steriods on hand that they told us to keep in case he had an episode.
Does anyone have any advice because we are so confused and having a hard time figuring out anything about this condition.

 

[My Butt Hurts]

Hi, I'm glad you found us. I would have to say that if he is having Crohn's symptoms, he should definitely see his specialist. It wouldn't make sense to go to his regular doctor.
I've never heard of Werchol before so I looked it up. It's a cholesterol med? It said that you should not use Werchol if you have a history of certain bowel problems (eg, blockage, paralysis, slow movement of the bowel muscles) or major stomach or bowel surgery, or you are at risk of bowel blockage. Not sure if that applies to him though.

I had one concern when you mentioned having steroids on hand just in case. Is it prednisone? Were you given directions on how to take it, and how to taper it? It can be very dangerous if not taken correctly.

If he is drinking too much Gatorade that might upset his belly. Sugar can cause irritation and inflammation. Maybe he could look into drinking some supplemental drinks such as Ensure, Boost, or something similar to keep up the calories. You might have him look into a low residue diet too. (google it)

You're right, this disase can be very tricky to figure out because it can change daily, and the treatments vary so much. Honestly, doing a lot of reading on here may help you more than anything.

Good luck, and welcome to the forum.
MBH

 

[cara_and]

Thank you so much for your response. They gave him the Werchol to firm up his bowel movements. I didn't quite understand it either. But it had helped for awhile. The steroid is prednisone. When he first was diagnosed it was because he had a horrible epidsode. His infection was so bad that they didnt know if he was gonna make it. Thankfully they got rid of the infection after being in the hospital for a week. When he was done with his steriods for that incident they told him to refill it again and keep it on hand if he starting having problems but gave no directions for it.
I never thought of the sugar in gatorade, I just wanted him to quit drinking so much caffeine with his soda. We have done the low residue diet a few times when he had small flare ups.
Thanks for the advice. I really appreciate it. I think I just have to start getting firm with the doctors.

 

[My Butt Hurts]

Well, the directions for the prednisone are just to start at a certain amount, and to taper, but if he's already been on it, then you probably know how to do that already.
Yeah, caffeine can stimulate the bowels, so it'd be a good idea to cut that out. Some people use coffee in the morning as a laxative.
The Werchol could be causing his cramping. The one time I tried a metamucil wafer to firm up mine, I had terrible cramps and never tried one again. (I'm not saying to stop it, just something to look into maybe.)
Hopefully someone else will chime in with an opinion on that.

 

[Jennifer]

Ya I'd contact the GI doc. It could be a virus but everyone has different symptoms when they are in a flare. I know I have flu like symptoms when I'm having a flare. If this is similar to one of his previous flares then ya, GI for sure. When was his last scope since he was diagnosed so recently? I'd imagine they'd want to do a colonoscopy once a year to check on what's going on in there (or endoscopy if the Crohn's affects the upper portion). Keep in mind that if you aren't comfortable with your current GI doc you can always seek a second or tenth opinion if need be. Its hard to find a good GI these days for some reason.

I take Lomotil to help harden my stools but you should only be taking stuff like that as needed. Its more important to find the cause of the diarrhea and treat that rather than let it fester and get worse. My GI thought I was prone to loose stools after having my resection but after putting me back on 6MP, they've hardened up and I usually only have diarrhea now when there's lots of stress involved or if I eat any of my trigger foods (foods that cause symptoms but not flares, there's a difference).

I wouldn't trust any doc who gave me Prednisone and to use it as needed. That's not a drug people should screw around with especially if they may not even need it. Why would you take it if there isn't any inflammation or sores etc.? The GI should run tests first before prescribing such a drug. Your husband wasn't diagnosed that long ago so its not like you guys fully know the drill of how high a dose he should be on and for how long and when to start tapering. I'd find another GI if they're just handing out pills like that. Self medicating is never a good idea, not if it can be avoided and in this case it can be.

And yes, sadly we have to be firm with the doctors, GI or not, to get anyone to listen to anything. I bring in a list of questions, concerns and sometimes even a drawn diagram so they fully understand, and make sure they address each point. If they don't and cut the appointment early, they aren't worth my time and effort and they don't get to see me again. Good luck to you and your husband.

Stay away from diet drinks as the fake sugar in them can cause diarrhea. Stick to Ensure, water, tea (decaf), and broth till the vomiting stops. But for me, if I'm vomiting frequently, I go to the ER. At least then you get IV fluids to keep you hydrated and they may be able to run tests to find the cause (tell them you have Crohn's) and they may check for a blockage which I hope he doesn't have. Your GI doc should be doing regular tests though to make sure there isn't any narrowing that could be causing this.

And welcome to the forum!

 

[partlycloudy]

Your husband's symptoms sound exactly like mine when I'm having a mild attack. I have diarrhea, exhaustion, nausea, some cramping. Generally I'll go on a liquid or low-residue diet (very little solid food even on that), take Imodium for the diarrhea, Tylenol or hydromorphone for the pain, and Zofran for the nausea.

My personally experience is if I can get the diarrhea and nausea under control that helps with the exhaustion. Lowering my food intake gives my bowels a nice rest and cuts back on the cramping. Even my husband has noticed that relieving some of my symptoms seems to accelerate my getting over an attack.

Crohn's can be really tricky as it's so different for everyone. It's possible he ate something prior to the attack that brought an attack on. Food is the most common trigger for me.

In any case, I agree with others who've said you need to see the GI doc. I also agree that when you get a chance you should find another one who is more interested in managing your husband's health rather than referring you to your family doc. I don't mean to be critical of your doc, but that seems incredibly irresponsible in my opinion.

Edited to say I hope you get the help you need and your hubby can begin to feel better.

 

[cara_and]

Thank you so much for your responses. Now I know that I am not crazy because I have had my doubts about this doctor. My husband has not had a colonoscopy since he was diagnosed, which I thought was strange. All we really seem to know is that he has Crohn's of the ileum and that they prescribed him Pentasa and Welchol.
When I am done on here today I am going to make a list of questions and demand some answers and then call my insurance company and find other specialists in the area that they will cover.
I am so glad I found this site. Thanks everyone!!!