Worried wife..please help.

[kate2519]

Hello all, not really sure where to begin. My husbands symptoms started about 2 months ago out of nowhere. Started as diarrhea (8-10 times a day). Being the stubborn man that he is, he refused to go to the dr. 1 month later the pain started. He was unable to move or bend. ER visit resulted in CT scan to check for kidney stones(there were none only enlarged lymph nodes). Urinalysis showed a UTI and labs showed elevated white count. He was given Cipro and sent home. He continued to get worse and was referred to a GI dr. Colonoscopy was done, it showed inflammation in the lower part of the small intestine...that was as far as it could go. More blood work has been done (for crohn's, liver and kidney functions) and today x-rays to check for blockages or capsule retention from the capsule endoscopy. No blockages were found. His Dr is fairly certain it's Crohn's. Blood tests have not come back to say for sure. The capsule endoscopy showed lots of inflammation and ulcerations in his small intestine. He was started on Pentasa and he also started Entecort 3 days ago. He's been on meds for a week now. 3 days after he started them he was starting to feel better..now, not so much. Vomiting and unbearable pain again. I just don't know what to do. I thought we were finally getting some where when he started the meds and now we're back at square one. Is that normal? Does a flare get better briefly and then return only days later? We are very new to this. I've done alot of reading on the internet but don't know anyone personally that has gone through this before. Any suggestions or advice is greatly appreciated! Also interested on any thoughts on the Pentasa/Entecort combo and how they helped you?

 

[MADiMarc]

Entocort worked well for me. It helped with the inflammation which for me translated into being much more comfortable pain wise. Have your husband call the doctor, like now. Tell him is he NOT being a pain in the doctors a@@. You all are new to this and you are both scared. Pain is an indication of trouble. Pay attention to it. The medications might not be the correct ones for your husband. The most important thing to know right now is that each and every Crohn's patient is different.

It isn't always bad. The first flare is the worst (in my opinion) because you have no idea what is going on. Now your husband's monster has a name. Lots of info on this forum. Look around and don't be afraid to ask questions. I rarely have the answers but others on this forum that are much smarter then I could ever be, just might.

Good luck and welcome to the forum.

 

[Jennifer]

Hi kate2519 and welcome to the forum!

How is your husband doing now? I know that Entocort can take up to a month to start working, dunno about the Pentasa though. Sometimes it takes a long time to find the right combination of meds that works best. As mentioned, it depends on the person.

If his flare is really aggressive then its possible his inflammation got worse after his procedures and he might have a narrowing now which could explain the vomiting or it could be a side effect of the Pentasa or the Entocort or both (its is listed as a side effect for both of them).

Hopefully he got in touch with his GI and let them know about his new symptoms.

 

[kate2519]

I can't really say that he's any better. His GI had really led us to believe it was Crohn's based on symptoms and the inflammation and ulcerations that were found in the colonoscopy and capsule endoscopy. After doing my own research I was sure he must be right because of all the health problems he's had in the past that seemed Crohn's related. They called with blood results 2 days ago and they came back negative for Crohn's. He was advised to continue with the Pentasa and Entecort tho i'm not sure why if he doesn't have Crohn's. They weren't helping at all and his PCP changed meds today. Started Bentyl, Flagyl, Phenergan, and Nexium. All I know is he is sick and we have to find out why. He is hardly eating at all..only clear liquids and soft bland foods that he can keep down. I am forcing fluids to keep him hydrated and the pain and weight loss is awful. Is Crohn's still possible even tho the blood test was negative? At this point, I don't know what to think or do anymore..

 

[Rebecca85]

Blood results are not that reliable- about 90% I think (if it's the Prometheus IBD test you mean). So it is perfectly possible to have Crohn's and a negative blood test. I would go on the colonoscopy/ capsule endoscopy results as they are more reliable.

Pentasa on it's own is quite a mild med- what should happen is once the entocort kicks in and reduces the inflammation, Pentasa will help stop the inflammation returning. So your husband can then cut down on the entocort and stay on the Pentasa long term.

Like the others said, it can take a while to hit on the right combination of meds, so keep his doctors updated.

Has your husband tried any sort of drinks supplements, like Boost or Ensure? They might help keep his strength up while he's not eating much.

For that matter, he might want to consider enteral nutrition- where you drink a prescribed meal replacement shake and don't eat anything else, this is easily digested and gives the guts chance to rest and heal. It has good remission rates provided the patient can stick to the regime!

 

[Thermo]

I know its frustrating but it sounds like the Gastro is knocking things off the list, a lot of times its a long list and what most people do over many years sometimes you have to do quickly because of the symptoms. I strongly suggest switching Entecort for Prednisone. Entecort is capsulated and is relased in the small intestines, they say it goes to the affected area only, however if there is enough inflammation there it wont get absorbed which is case and point why so many Crohns patients are anemic. I actually like the way this Gastro is approaching it, but bring in the heavy hitters kick the Pentasa which is primarily released in the large intestines for UC patients and bypasses small bowel. Trade it for sulfasalazine if you want but Prednisone and if you don't see improvement in a week start a Biologic if it's that bad. Keep us updated please.