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Hi everybody

I’ve been sick for two weeks, going on three. I’ve had a low grade fever on and off and mainly at night. First week I ignored it and managed to do well with ibuprofen and paracetamol. Second week I stayed home from work. The fever was still on and off but I felt more fatigue and muscle and joint pain.

I went to the local clinic twice. They ruled out COVID-19 and saw I had a elevated CRP. On the second visit it had gone from 57 to 61 so they referred me to the emergency room where they’d be able to run more tests.

So I went. They found nothing off except that my CRP had gone down slightly again so they sent me home and told me to check my CRP at the local clinic in a few days. I did that today and it went back up to 56.

If anything I only feel slightly poorer everyday but it puzzles me that the doctors cannot or will not find anything wrong with me. Does anyone have a clue?

I’ve had to pause my Simponi infusions and azatheoprine as long as I have a fever but I’m afraid holding off on it will only make me feel worse...

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@Fredrik posted:

All right... thanks. I’ll wait for another symptom or for it to go away then!

The one thing you can do in the meantime is make sure you’re getting appropriate medical attention. If I were in your situation I’d want a  (good) general internist to be taking care of me, paying attention to an evolving situation over time. An ER or urgent care doc would tend *not* to be the best choice for this, and I don’t know what sort of local clinic you go to.

Fredrik,

I wish you the best in finding an answer on these fevers and the elevated CRP. I would agree with Scott on seeing an Internist because the "local clinic" docs tend to be lower caliber professionals who look for obvious solutions, and tend to shoo the patient out the door without a hard look. My internist is the best. Were it not for his scrupulous one hour physical exam, my thyroid cancer likely would not have been discovered in 2015 and maybe I would be pushing up daisies right now. He called it and by identifying it when he did, I was able to achieve a good result from surgery.

Don't settle for bottom of the barrel medical care. Seek a good professional. I sometimes see posts like this on this board, and I get the feeling that the poster is being shuffled around without really getting good medical care. A surprising number of people allow this to happen and are not good self advocates or proactive in seeking the best possible professionals for tricky medical issues. It's up to you to not let that happen here.

Last edited by CTBarrister

Scott F and CTBarrister,

I live in Sweden and the way it works here is that if you want or need immediate attention you go to the emergency room where they can do all necessary tests and scans as it is taking place in a hospital. The local clinics are there for non-acute general medical issues.

At the emergency room they decide if you need hospitalization or if you can go home and wait and see. The doctor there, an intern and not even a fully licensed physician, didn't think I need to be hospitalized so she sent me packing. Of course I've been in touch with my specialists but the feeling I've gotten from them so far has been that it's probably a viral infection and that it should just go away on it's own... But I reached out to them today again so I'll see what they say as I suspect they too are starting to wonder what this "fever of unknown origin" is really all about.

Anyway, thanks guys. I'll keep you posted so check back in if you're interested in seeing how this whole thing plays out.

Hmm, no-one has mentioned pouchitis, so I guess I will!

Are your BMs normal? Any crampy pains in the abdomen?

Aching muscles, low-grade fever and a general "under the weather" feeling are the way pouchitis manifests for me (I only get mild pouchitis).

These symptoms are usually accompanied by extra/more-watery BMs (hard to tell sometimes what is pouchitis and what is something I ate that was too fibrous until it continues for a couple of days), maybe with an odd colour and smell.

I also get mild crampy pains in the upper abdomen.

Sometimes I only get the muscle aches and fever, which is why I'm chiming in.

Hope you feel better soon.

Sarah in Australia

Last edited by Kushami

Hi,

my name is gabriella and I got my jpouch in november last year (2019). Since then my pouch has been working really good except some smaller issues.

but for 2 weeks ago I started feeling really naseous (I have felt nasea from time to time but this is a lot More and for longer). Im so naseous to the point I feel I could almost vomit.
I also got a stomach ache both in one area that I had some ache at before at times (think maybe adhesion) but also More in the middle of my stomach a bit over my bellybutton.

Im also feeling a bit under the weather. Feeling like I have a fever but I dont.

The other thing that really bothers me is my toilet visits. Usually I have pretty firm stool and do take a laxative every other day. I also know that If I eat too much pasta and bread I Will feel constipated.
But since two weeks back my stool has been more watery and so yellow/orange. I have not eaten anything strange...

Has anyone any idea what this could be? Can a partial blockage/obstruction last for over 2 weeks? 😫

i can also note that my stomach is gurgling a lot...

@Brellis posted:

Hi,

my name is gabriella and I got my jpouch in november last year (2019). Since then my pouch has been working really good except some smaller issues.

but for 2 weeks ago I started feeling really naseous (I have felt nasea from time to time but this is a lot More and for longer). Im so naseous to the point I feel I could almost vomit.
I also got a stomach ache both in one area that I had some ache at before at times (think maybe adhesion) but also More in the middle of my stomach a bit over my bellybutton.

Im also feeling a bit under the weather. Feeling like I have a fever but I dont.

The other thing that really bothers me is my toilet visits. Usually I have pretty firm stool and do take a laxative every other day. I also know that If I eat too much pasta and bread I Will feel constipated.
But since two weeks back my stool has been more watery and so yellow/orange. I have not eaten anything strange...

Has anyone any idea what this could be? Can a partial blockage/obstruction last for over 2 weeks? 😫

i can also note that my stomach is gurgling a lot...

@Brellis. A partial obstruction can last for quite a while, though most seem to clear up in a day or three. Some partial obstructions caused by strictures are more or less permanent unless they are dilated or surgically repaired. This might be what you have, and if that’s the case vomiting would be a sign that things have gotten serious. It’s also common for stool to become less solid when the solid material is backed up. I hope you’ve stopped your laxative completely for now. In general it’s probably safer to use stool softener and/or psyllium (or just plenty of water!) than the more aggressive laxatives, but you have to be especially careful when you might have an obstruction. The key risks with obstruction (other than misery) are dehydration and bowel rupture. Are you getting enough fluid absorbed (i.e. are you peeing light-colored urine at least a few times per day), with enough left over to saturate whatever solids are backed up)? It’s also possible for “simple” constipation to behave this way, and patience and fluid are the key things to do.

Another common cause of nausea is gastritis. That might also cause the pain you’re feeling, but I wouldn’t expect it to loosen your stool so much.

You might also have a persistent GI infection, which could cause all of these things. If your doctor agrees with this possibility you could get tested for C. diff and perhaps some other candidates.

@Kushami mentioned pouchitis in response to Fredrik, but I haven’t heard of nausea being so prominent in pouchitis, so I’d guess it’s unlikely.

Good luck!

Thanks for the answer!

I did take some laxatives day before yesterday its for ”junior” so I guess its not as strong as regular. But yesterday and today I’ve just been drinking red grape juice, do you think that is okey still?

How do they see if you have strictures? Is it only on scans?

Its so frustrating to be naseous through days and also not knowing whats causing it.

I did a scope last monday and the doctor Said the pouch looked fine. But Its something thats off thats for sure.
Partly this stomach aches, some in the same area that comes and goes with a tight interval and then aches from other parts of the stomach. I also burp a lot More than usual and is having some pain in my lower back.

got to do some bloodtest and is also going to leave some stool samples though some of the test results will come in a couple of week but its good to at least have done something that can rule out other things.

@Brellis posted:

Hi,

my name is gabriella and I got my jpouch in november last year (2019). Since then my pouch has been working really good except some smaller issues.

but for 2 weeks ago I started feeling really naseous (I have felt nasea from time to time but this is a lot More and for longer). Im so naseous to the point I feel I could almost vomit.
I also got a stomach ache both in one area that I had some ache at before at times (think maybe adhesion) but also More in the middle of my stomach a bit over my bellybutton.

Im also feeling a bit under the weather. Feeling like I have a fever but I dont.

The other thing that really bothers me is my toilet visits. Usually I have pretty firm stool and do take a laxative every other day. I also know that If I eat too much pasta and bread I Will feel constipated.
But since two weeks back my stool has been more watery and so yellow/orange. I have not eaten anything strange...

Has anyone any idea what this could be? Can a partial blockage/obstruction last for over 2 weeks? 😫

i can also note that my stomach is gurgling a lot...

A good method to prevent blockages that I like to use are: drinking water: before, during, and after every meal. And moving around a lot helps.

Scott F,

It could maybe be it.. but with gastritis do you think its normal for changed stool? And increased gas? My stomach is gurgling aloot!



Lauren, thanks for the advice, any special brand you could recommend?

I often drink with my meals but I’ve also read that if you have some indigestion you shouldnt drink anything with your meals because you dont want to dilude your stomach acid...

@Brellis posted:

Scott F,

It could maybe be it.. but with gastritis do you think its normal for changed stool? And increased gas? My stomach is gurgling aloot!



Lauren, thanks for the advice, any special brand you could recommend?

I often drink with my meals but I’ve also read that if you have some indigestion you shouldnt drink anything with your meals because you dont want to dilude your stomach acid...

I personally drink tap water, I find it most convenient. I hear pantoprozole is good for gastritis. Also, you might want to get tested for H-plylori, just to make sure everything is fine.

@Brellis posted:

Scott F,

It could maybe be it.. but with gastritis do you think its normal for changed stool? And increased gas? My stomach is gurgling aloot!



Lauren, thanks for the advice, any special brand you could recommend?

I often drink with my meals but I’ve also read that if you have some indigestion you shouldnt drink anything with your meals because you dont want to dilude your stomach acid...

You're right that the changed stool isn't typical for gastritis, and it all may be a persistent partial obstruction. All you can really do for that is stay hydrated (and get to the hospital if things get significantly worse).

What does your doctor think is going on?

Lauren, thanks! I think One of the testa was just that.

Scott, I dont know if he really have any idea just ordered a bunch of tests. Also gave me prescription on anti nasea pills and like omeprazol

What do you think about juices? I try now to eat a pretty ”soft” diet but I dont eat veggies so I sometimes do green juices or carrot juices. That shouldnt be a problem right? I mean all the fiber is gone...

@Brellis It all depends on the severity of the blockage, and I really don’t know if that’s what’s going on. It sounds like you’re moving liquids through reasonably well, so your juices will likely work. You could start with a small quantity, and increase if that goes okay and your nausea permits. If this turns out to be gastritis or a peptic ulcer then your changed stool might be explained by your changed diet, though I’m guessing they may have changed in the opposite order.

Scott, its all very confusing. Alot of these symptoms just came from nowhere. I’ve been having som heartburn on and off for maybe a year but has been bothering me a bit more 2-3 months now. But not as it is now. Until this weekend I ate regular food, still do but try to be more careful.
just so crazy this feeling to feel so full and uncomfortable.

having this stuffed feeling all the time but More after eating. And it feels like the food never sinks away from upper abdomen. And I also get pain in my lower back (which worries me a bit because when I had my colon and inflammation I had that too).

maybe they Will find something or maybe not. I also read that its something called functional dyspepsis (if they dont find any cause of the problems).. have you heard of that?

@Brellis I think it’s more likely that this will disappear mysteriously (as most blockages do) than that it will persist without a proper explanation. In the meantime, there are some low-risk things you can try. You could see what happens if you reduce stomach acid for a few days, with something like Pepcid-AC or Prilosec (these are over-the-counter), perhaps supplemented with an antacid like Gaviscon or Tums. A few days of treatment won’t definitively fix anything, but it might give you a better idea of where some of the discomfort is coming from. If you see good results you can extend the treatment.

@Brellis posted:

Lauren, thanks! I think One of the testa was just that.

Scott, I dont know if he really have any idea just ordered a bunch of tests. Also gave me prescription on anti nasea pills and like omeprazol

What do you think about juices? I try now to eat a pretty ”soft” diet but I dont eat veggies so I sometimes do green juices or carrot juices. That shouldnt be a problem right? I mean all the fiber is gone...

You are welcome! And for future of preventing blockages, try drinking water: before, during, and after every meal. Moving around by exercising helps too.

Brellis,

It is Bismuth Subsalicylate and is available world wide. Pepto Bismol is just an American brand name for the concoction which is pinkish and looks like this:

https://www.walmart.com/grocer...GnirWrRoCDhMQAvD_BwE

It's 1000% that you can get it in Sweden.  Yes, I have had similar issues, it is usually from pouchitis and Bismuth Subsalicylate blows those symptoms away.

Last edited by CTBarrister

Brellis,

Just because there is no visible sign of pouchitis inflammation doesn't mean you cannot have the symptoms. You might also be dealing with a SIBO situation, and PB will help with that as well. That is more of a long term situation and if you do have SIBO you may need to address your diet as too much sugar and carbs are the usual suspects. It creates a bacterial feeding frenzy in your pouch. It's like putting gasoline into a fire.

The usual stool changes in color and pattern can vary with each person but for me my stools get watery with pouchitis. They thicken with PB or antibiotics. This is fairly common. PB may also discolor stools and give them a lighter color.

Last edited by CTBarrister

CTBarrister, okey.. I am often on the side of be constipated though I get that its not that common with a jpouch but since 3 weeks back its been mix, watery and a bit former... but its all very yellow/orange every day which makes me Google and find other problems that match my symptoms and gets me even More worried. The problem is also that all issues I got, I think Will be forever just because I already been through a hell lot (like all of you as well).

i think this went to fast from be able to eat almost anything or a regular diet anyways. To get stomach cramps and back pain and a gurgling stomach and nasea everyday...

It's an anti-diarrheal only in the sense that it kills all the bacteria that cause garden variety diarrhea.  You have to understand the mechanism of action.  It is not like imodium.  Pepto Bismol contains a metal (bismuth) that is toxic to all the bacteria in your gut.  It is not designed to thicken up stools like imodium.  That is simply the effect when the diarrhea stops.  Traveler's diarrhea is caused by different kinds of bacteria which are killed by the bismuth.  It is lethal.  What then happens is you have or should have normal stools.

Last edited by CTBarrister

Brellis,

I am merely suggesting you experiment with it.  All treatment of IBD is trial and error.

For me 2 capfuls would do the trick.  Read the instructions, you cannot take more than a certain amount per day as bismuth can be toxic to your liver as well. Try it for a day or two and see what happens.  The nausea, bloating, and gas should be addressed by the bismuth.  If you get constipated, stop it.  That should not happen.  As I said, the mechanism of action is to kill bacteria, not to thicken or slow you down like imodium.

The PB formulation allows a maximum of 240 ml per day (8 capfuls).  Therefore you can take 4 2 capful dosages or 8 1 capful dosages.  It is the best to take every half hour or hour up to the maximum daily amount and then you will have the bacteria causing the symptoms crushed.  I would not use it for a prolonged period.

Lastly, relief should be immediate.  Within 4 hours as that is the transit time to your Pouch.

Last edited by CTBarrister

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