Not sure what to do.

Hi there, everyone! I'm new to this, meaning both the forum and UC itself, so forgive me if I'm missing any important information. There is a lot going on here, so I'll try to condense it all to get every detail.

Some history:
I have been dating a wonderful man for 3 years now who happens to have UC (24 years old), for this entire time, and from his diagnosis in 2010, he hasn't had so much of a bad flare as occasional bloody stool, to which he'd take the Mesalmine enema for about a week and the problem would go away.

More recently, due to moving, lack of funds, and no insurance, he hasn't been able to see another GI doctor to get more Mesalmine after it ran out. about 3 weeks ago, he finally got to a GI in our area and was given another dosage, he was also scheduled for a colonoscopy. Until this point, he had only been having bloody stool, but it seemed right away, after taking the Mesalamine enema that he got worse. He was now getting severe stomach cramps that he'd never had before with UC. When we saw the doctor for the colonoscopy, he instead prescribed him Lialda, the oral Mesalmine, and he has since been taking 4 of those each morning. Now, I'm not really sure why he seemed able to take the enema in the past, but now has some kind of intolerance.

After the scheduled colonoscopy, he was vomiting and couldn't seem to hold his bowels and was promptly taken to the ER where he was admitted to the hospital for almost a full week (also turns out he somehow got Campylobacter food poisoning, which I'm assuming made the flare 20x worse). While there, he was given the Lialda, Morphine, and Percocet (for the severe abdominal pain) and antibiotics (for the food poisoning). The GI at the hospital told us that he should get better by just taking Lialda every day and when he was discharged this past Wednesday, we found that not to be the case. He called in an order of Prednisone (the doctors at the hospital were reluctant to give it to him since he showed early signs of hip deterioration from earlier use of Prednisone) on Friday and has been taking 4, 10MG tablets since Saturday morning.

So far:
He is incredibly weak, can hardly get out of bed to move around, and has a really hard time eating with no apetite. He was about 159 pounds before entering the hospital and has now dropped to 143 (maybe lower by now). He's been this way since returning from the hospital. He also has been getting terrible acid reflux and hot/cold flashes (maybe from morphine withdraw? Either way, can't seem to get relief from it and appears to be worse during the day). Ever since I have been spending most of my days reading this forum and other sources to try and soothe his symptoms. Nights are the worst, during the day things can look optimistic, fewer bowel movements, hardly any blood, but when night comes and it's time to sleep, he seems to be running to the bathroom more frequently (with blood) and has really awful stomach pains that keep him from sleeping (doesn't help that the steroids keep him up also). Since being hospitalized and even being at home, he has not had a good full night of sleep.

Eating has been minimal as well. I was giving him Ensure Clear to get some protein in his system, at the least, but after some research today and a really bad night of stomach pains last night prior to finishing an entire Ensure Clear bottle (something he has not done yet) I've decided to stop giving it to him and am trying to find other foods to get him. Thinking maybe some homemade juices with foods he can have and that can help soothe him. So far he's had some Jello (seems to stay with him), Applesauce (thought maybe it gave him the acid reflux, stopped eating it), and plain regular waffles (just one, can't seem to eat any more than that). I also tried giving him a banana yesterday when the acid was bad, he took a few small bites and gagged, so I don't think I'll try that again.

So far this has been a nightmare. His quality of life has changed drastically and at times I feel like I can't do anything. I feel really helpless when his pain is super intense and I just can't do anything to soothe it. We're gonna try to get an appointment tomorrow (darn Holiday weekend) and see what can be done, also to start taper on Prednisone. I almost feel like he's not getting better. I really don't know what to do for him, especially when night comes. Any suggestions? Help? As I've said prior, this whole thing is completely new to me, I just don't want the man I love to suffer anymore.

Medications:
Pantoprazole Sod Dr (40MG tablet, take every morning, prescribed by Dr at the hospital), Prednisone (4, 10MG tablets), Lialda (4, 1.2GM tablets). He was taking Percocet (5-325) for the pain as needed every 4-6 hours, but I had him stop taking them so he doesn't grow dependent.

sorry the pred did not help.

could the enema have been a different generic brand?

food poisoning can really intensify a flare.

sadly, for some time the pancolitis has been untreated since enema does not treat past sigmoid.

it may take iv steroids in hospital, and it may be time to try a biologic instead of waiting on lialda.

i got good pain relief from tylenol-iii with codeine

Firstly,
Glad he has such a good, supportive person in his life. flaring is so difficult and painful and having supportive people can make it that much better.

Iagree that remicade along wiht something like imuran is a very good option. it tends to work quickly
he needs to get off of the steroids if he is having hip problems

remicade can be given outpatient, you can either do it at the hospital/gi office/infusion center

all his sweats and chills can be from narcotic withdrawl, flaring, and or steroids
he should not be on any narcotics during a flare like this, it can make things worse and increases the risk of megacolon and or perforation.
tramadol and tylenol are ok for pain (NSAIDs are not ok advil/motrin/ibuprofen, aleve/naproxen, aspirin)

his stool should be retested to see if he has cleared the infection and if he has cdiff or cmv

what is his c-reactive protein?

you might want to try ensure powder as it does not contain carrageenan, it is like the shakes but you need to mix it with water. there are some good studies that show caraggenans might cause exacerbation of colonic bleeding.

What a terrible situation, thank goodness he has you to help him. What people find is that we all react differently to foods, and so it really is trial and error, bone broth, bread,potatoes,chicken,salmon, rice, those are the sorts of foods to try him on, personally I would not give him those ensure drinks, I think for people like us they arent great, bone broth is far better anyway. Can you try making some Water Kefir, its full of probiotics, which might help.

Given what you have said about his dramatic response to the enema, he may have developed an intolerance to mesalamine and since Lialda is also mesalmine that could be making him worse. Since he's on a high dosage of pred it should be doing more and it's not. Talk to the doc about seeing if you can stop the Lialda and enemas and see if it helps at all. At this point it doesn't sound like it could make things worse to discontinue for a day or 2 to see what happens.

Try to give him soft, easy to digest, foods. Noodles, bread, eggs, mashed potatoes, yogurt -- but watch the labels for carrageenan (sp?)-- some have it others don't. Not sure if it really matters, but why take a chance when there are so many brands to choose from.

He is a fortunate man to have you in his life. Hope he feels better soon!

I'm happy he is off Percocet. It is really not save for active IBD in most cases.
Being off that may make him SEEM to get works because Percocet masks symptoms

C-reactive protein or crp is a protein that our bodies make when there is inflammation. Not everyone's body makes it (bout 80 percent do) and it is not gut specific
However it has a short half life, so it can tell us, almost real time what the extent of the inflammation is.
There is also fecal calprotectin but it takes 10 days. And ther is esr but the levels don't rise and decline as rapidly as crp.
Hope that was clear.

a small percentage of people get worse with mesalamine meds, and the intolerance can mimic flaring. dont know why the docs were so quick to dismiss you and his mom, it was a good thought

I've been chewing (or maybe re-chewing) on the thought that this might be Mesalamine intolerance. It just makes sense, he didn't get severe flaring symptoms until right after he started taking it. There was one night in the hospital, the night before he was discharged, that they tried not giving him the Lialda and seeing how he got through the night. He did without pain, but they still wanted him to take it in the morning, and the doctors both kept saying it wasn't the meds.

CCinPA said...
That's weird that he did better but they wanted hm to take it again.

Agreed. Confused the hell out of me. I just trusted the doctor's words against my own thoughts. With that said, is there any alternative medicine he can take besides Mesalamine if this turns out to really be the problem? Also, any recommended probiotics?

"Gt's synergy is one of the better brands. Gingerberry seems to be the most popular flavor, taste the best anyway."

they are all yummy - cept the ones with them chia seeds things - GAG !

good stuff - i pretty much drink it daily -


and why exactly is he on the PPI's ? cuz some hospital doc said so ? i'd get a second opinion - my opinion is they are crap and any reflux should be dealt with via diet -

If he is having a reaction to the mesalamine he should start seeing some improvement pretty quickly -- within a few days after stopping I think. If there is no change then it's not a problem and he should start taking it again.

Pred has a lot of side effects -- hot flashes and night sweats are very common. Until he's able to taper down in dosage it often can interfere with sleeping. You probably want to get familiar with the side effects because they are numerous and common. about the only thing I know to do about them is to drink lots and lots of water to keep flushing your system. That can help but will not eliminate the side effects.

Yikes that's pretty scary. I hope everything goes wel, good luck and keep us posted.

This is all so frightening. You are in my thoughts. Hoping for the best for him.