Is this a flare or something else? :(

[ravensfan88]

I've been on TPN nutrition and Remicade treatments (along with other medication, Lialda) for my Crohn's. This has helped me feel better recently and I have only had to use the bathroom 2-3 times a day as opposed to the 6-10 times prior to this.

However, this past Sunday (the 15th) I decided since I was feeling better to get some pasta from Outback. I ordered the Parmesan Pasta with chicken. I am sure this pasta was covered in a heavy sauce, lots of butter and it had little bits of spices in it as well.

I noticed the next day during a bowel movement (which is all diarrhea unfortunately) that I could see all of the "spices" from the pasta. Ever since Sunday, I have had an increase in my symptoms and have been going 6-8 times a day with less control over my bowels.

I have been on such a good track with my medication and BM's that I hope this is just a flare that will go away soon. I don't want to find out the Remicade is no longer working... or something worse.


Just looking for advice, suggestions or comments from anyone who has experience with this as I was just diagnosed this March and worry about everything.

Thank you in advance.

 

[Manzyb]

Hi raven! It honestly might just be the pasta that you ate. I've eaten something before and then seen spices and things in the bowl after bowel movements as well. Hopefully in the next couple of days it will start to clear up better for you. What you ate very well might have just aggrevated your stomach. It it doesn't get better soon, i would call the doc and see what they say.

 

[ravensfan88]

Hi raven! It honestly might just be the pasta that you ate. I've eaten something before and then seen spices and things in the bowl after bowel movements as well. Hopefully in the next couple of days it will start to clear up better for you. What you ate very well might have just aggrevated your stomach. It it doesn't get better soon, i would call the doc and see what they say.

Thanks for the quick response. I've started to eat less and more bland these past few days (rice, toast, dry cereal, banana) but I talked to my nutritionist and she said I may just be able to go on a clear liquids for a few days since I am getting everything my body needs from my infusions at night.

 

[moogie]

When I eat mushrooms I can see them clearly almost in one piece in my BM. Seems these things happens to us all.

I agree that after a few days it should get better. seems you should maybe skip those pasta for a while

Good luck.

 

[felicity1981]

Hi isn't it awful giving up food you love :-(.. good luck to you! My guilty pleasure is popcorn ..after all can't watch a movie without popcorn .. always feel terrible afterwards .. telling myself off..and yet keep doing it..

 

[ravensfan88]

Hi isn't it awful giving up food you love :-(.. good luck to you! My guilty pleasure is popcorn ..after all can't watch a movie without popcorn .. always feel terrible afterwards .. telling myself off..and yet keep doing it..

You're telling me.

I LOVE food. Never noticed how much until I was diagnosed with Crohn's.

Now it's an obsession!

 

[Manzyb]

You're telling me.

I LOVE food. Never noticed how much until I was diagnosed with Crohn's.

Now it's an obsession!

It's completely an obsession!! A definite love hate relationship!

 

[Z_Ghost]

Hi isn't it awful giving up food you love :-(.. good luck to you! My guilty pleasure is popcorn ..after all can't watch a movie without popcorn .. always feel terrible afterwards .. telling myself off..and yet keep doing it..

It's been 4 years with no eating popcorn, I miss it so much. :frown:

 

[felicity1981]

Yeah, there are soooo many on my list! Corn on the Cob, crunchy stir fried veg like Broccoli, and snowpeas... seems anything that's completely cooked to a complete mush is just fine... I should even remove the little bit of onion on a burger takeaway... unless I want to be swollen like a balloon! ah well... If my craving gets out of hand, I will let myself have a little bit... you only live once afterall... and I'll pay for it later...

 

[Tummyache]

When you have a "mini-flare" like this do any of you ever try going on a liquid diet for a day or two to let your intestines calm down? This seems to work quite well for me, yet I have not seen it mentioned much. I keep things in stock like chicken broth, tolerated juices, soothing teas, etc, for just such times.

 

[ravensfan88]

It's day 6 and I'm still feeling like crap.

I had to make 12 trips to the bathroom yesterday and I barely ate anything! The odd thing is these are all small episodes meaning that when I go, I'm not going a lot and don't really feel "finished". The BM's are watery with a lot of mucous and I'm just worried that this isn't a flare and somehow my medication just stopped working all of a sudden (though everything does coincide with the Outback meal, maybe it was just coincidence?).

I just wanna know how long I'm looking to deal with this horribleness if it really is a flare... I don't know how I'll handle it if the Remicade suddenly stopped working...

 

[Z_Ghost]

It's day 6 and I'm still feeling like crap.

I had to make 12 trips to the bathroom yesterday and I barely ate anything! The odd thing is these are all small episodes meaning that when I go, I'm not going a lot and don't really feel "finished". The BM's are watery with a lot of mucous and I'm just worried that this isn't a flare and somehow my medication just stopped working all of a sudden (though everything does coincide with the Outback meal, maybe it was just coincidence?).

I just wanna know how long I'm looking to deal with this horribleness if it really is a flare... I don't know how I'll handle it if the Remicade suddenly stopped working...

My friends take me out to eat every now and then and sometimes I over do it and have that happen to me. Doing the liquid diet really does help but it can take 3 or 4 days to work depending on how MAD my gut is at me.
Your gut can be vindictive some times.

 

[Stacey]

What are peoples flare upS that really stop them eating the food they love??? I still eat the foods i like, i get stomach pain most days but i can handle it.. dont know what foods do it same food i can be fine then another not, but i looove popcorn too specially cinema popcorn!!

 

[ravensfan88]

What are peoples flare upS that really stop them eating the food they love??? I still eat the foods i like, i get stomach pain most days but i can handle it.. dont know what foods do it same food i can be fine then another not, but i looove popcorn too specially cinema popcorn!!

Well, this flare up has caused me to have increased trips to the bathroom (with diarrhea). I was going 2-3 times a day and now I have been going 8-12 times during this "Flare"(if that is what it really is). I have no pain and never have, just the D. I also have increased gut activity and it's uncomfortable feeling.

 

[Stacey]

Ok thanks, guess i get them too then, i go toilet 3 times a day sometimes... not often and dont have pains.. im prob get more constipated that not.

 

[Thermo]

If you are passing mucous it's probably a flare, I have gotten a flare while on a biologic which required me to go onto steroids, after a month on that I was able to taper off and continue the Humira with no symptoms. Don't get too worried just because you might have a flare, see your doctor. Is the TPN something that your gastro wants to keep you on long term?

 

[hainman]

i've been on a flare for about 3-4 weeks now,and it started round about the time they started messing with my meds.im on mercaptopurine and was on 50mg one day 100mg next day,my bloods started going wonky so went down to straight 50mg.then had to come of them then back on then back off then back on and its causing major D.more so at night time when i go to bed,i can be up every hour which is resulting in very little sleep and being very run down and misserable.i had tests done which came back saying no inflamation yet im going to the loo at least 15-20 times so im due to meet the quacks soon to see if i have something else making me feel like ****.im due on holiday in 2weeks and its going to be torture if i have to be on loo watch...

 

[ravensfan88]

If you are passing mucous it's probably a flare, I have gotten a flare while on a biologic which required me to go onto steroids, after a month on that I was able to taper off and continue the Humira with no symptoms. Don't get too worried just because you might have a flare, see your doctor. Is the TPN something that your gastro wants to keep you on long term?

My GI wanted to keep me on TPN until I reached around 130lbs (I was 140ish months ago and went down to 100lbs which is why I started TPN). I'm around 126lbs but losing a bit now because I'm not eating much during this flare.

I'm just really depressed because of this since I was only going 2-3 times a day, doing really well and feeling so much better and now these past two days I have been in the bathroom 12-13 times. Though I do notice that these trips, I don't go very much. Just a little bit... like it's the 2-3 times being stretched out because of the inflammation or something.

I just hope I get back to where I was soon...

 

[ravensfan88]

I started eating barely anything. 2 cups of Jello yesterday and was doing okay, not great. Then at like 7pm I mixed a Boost Glucose Control (4g of sugar) with a little bit of Lactaid milk. This went right through me, almost minutes after drinking. I had to make around 5-6 emergency trips to the bathroom within the hour. While sleeping, things had calmed down. I still had to awake to go to the bathroom 3-4 times but I was more in control and felt a bit better about it.

I am going to try only Jello today (maybe some broth) and see how it goes... then maybe in a day or so introduce Bananas, Rice, etc... then wait a few days before I go back to eating Fish and bread.

Anyone have any feedback or suggestions on what I should do?

It's been over a week now since I am on this flare, and I was actually a bit withholding in my original post as I didn't only eat Outback pasta on Sunday but throughout the week cheated several times. Tuesday I had Red Lobster Pasta (which was a lot more plain and I think I can tolerate this if I eat it sparingly), Wednesday I had 4 slices of Chicken Alfredo pizza from Dominos (too much...), Thursday I had a small Steak Filet (which may be tolerable in moderation), Friday I had half of a meatball marinara sub from Subway (I know this is a bad idea...) then on Saturday I ate normally (fish, rice) but on Sunday came the Outback pasta... then came these bouts of excessive diarrhea.

Sorry for the ramble but I just want to feel better again. I was only going 2-3 times and it was so much better. I am now very depressed because of this set back and hope it's not my medication failing to work.

I am at a loss and feel terrible emotionally and physically.

 

[ravensfan88]

Last night, tuesday, I ate a small cup of jello around Noon to take my meds then had some chicken broth around 7pm to take my second round of meds.

Throughout the day, I had reduced diarrhea - only going 3 times before bedtime (11pm). Throughout the night, I had to get up and go 5 more times. Every time I go there is mucus present (though this seems to be less present, maybe due to the fact I am not eating) and undigested fiber. This has to be residual effects from previous foods I ate as Jello has no fiber in it and Chicken broth had very low fiber (it was strained from a chicken and veg noodle soup, the fiber was probably in the veggies).

Though I still went 8 times, it is an improvement over the past few days... the only issue is that I am not eating anything. I hope it will continue to improve and my gut will heal so I can progress onto more solid foods and eventually get back to eating like I was before this "flare".

I told my GI about the increased bouts of diarrhea and he wanted to do a colonoscopy this week but I'm hoping it was just the food I ate and this will all go away soon. It's been about 8 days since I started feeling increased symptoms (diarrhea and gut activity, ie i can feel my intestinal gas and movement... almost like a baby kicking me all the time) and I only started the "bowel rest" the other day.

I know I keep posting, but I just feel so depressed and hopeless. I was doing so well and I was able to get around... go to the store... I even went to a Casino for a few hours to celebrate my Birthday (since I was too sick to do it back in June) and now I'm just... back to counting the minutes of the day, hoping each day will be better...

At the very least it makes me feel a bit better to just vent all of this on the forum...

Anyway, thanks for the responses to the thread and for any future responses.

- Nick D.

 

[JDTM]

Nick, my heart goes out to you bud. Hang in there. I can relate to the feelings of depression, especially when things get worse when they seemed to be going so well beforehand. The up-and-down nature of this disease can be cruel.

That said, even though we all know that colonoscopies aren't fun (the prep part in particular, for sure), it's probably a good thing to get it checked out. This sounds a little too hardcore for something that's just "something you ate," and while I understand why you would hope that it's something that will pass, ultimately you and your GI are really going to want to know what the hell is going on in there, and then figure out how to combat the problem. In the meantime, I'd be willing to bet that the bowel rest/enteral nutrition is probably going to help some.

Be well and keep us updated.

 

[ravensfan88]

Nick, my heart goes out to you bud. Hang in there. I can relate to the feelings of depression, especially when things get worse when they seemed to be going so well beforehand. The up-and-down nature of this disease can be cruel.

That said, even though we all know that colonoscopies aren't fun (the prep part in particular, for sure), it's probably a good thing to get it checked out. This sounds a little too hardcore for something that's just "something you ate," and while I understand why you would hope that it's something that will pass, ultimately you and your GI are really going to want to know what the hell is going on in there, and then figure out how to combat the problem. In the meantime, I'd be willing to bet that the bowel rest/enteral nutrition is probably going to help some.

Be well and keep us updated.

Thank you for the response.

Yesterday I only ate 1 small cup of Jello and had 4 bathroom trips throughout the day, then woke up 3 times during the night to go (though I always wake up in the night a few times to urinate because of the TPN I am receiving, so I just had to do both... heh). So, not eating has reduced the symptoms but I am still noticing undigested fiber even though I haven't eaten anything with fiber in quite a few days!

I really hope this dies down soon. I have an appointment with my GI tomorrow (Friday) and another GI on Monday, so I'll be able to find out what is going on and hopefully get the right answer. I just hope the Remicade has not ceased to be working...

 

[ravensfan88]

I ate a banana and a small bowl of rice yesterday and had to use the bathroom 7 times throughout the day, then woke up during the night and had to go twice more (though at night it feels way more controlled for some reason).

So today, I plan on eating nothing... maybe a little bit of jello but that's it. I see my GI @ 1pm and hope to get some answers and a little relief.

 

[JDTM]

Damn dude, you need to be getting some nutrition in you. Have you thought about or tried enteral nutrition? Boost, Ensure, or something like that?

I really REALLY hope you start feeling better soon.

 

[ravensfan88]

Damn dude, you need to be getting some nutrition in you. Have you thought about or tried enteral nutrition? Boost, Ensure, or something like that?

I really REALLY hope you start feeling better soon.

I am on what is called Total Parenteral Nutrition (started this in the hospital on 6/7/12) because I was down to 100 lbs and couldn't absorb anything from food. The TPN has brought me up to 126 lbs and I was flying high. I was only going 2-3 times a time and much more controlled, eating well and gaining weight. Then, I cheated for several days in a row (heh, what I listed above) and then these symptoms started to come back (still not as bad as it was 2 months ago).

So basically I get all the nutrition I need through a picc line in my arm (12 hours a night, infusion) and it's okay if I can't eat.

As far as the Boost goes, I won't be touching that ever again. It seems to go right through me as I tried it the other day and lost control of my bowels minutes after drinking and had 5-6 emergency trips to the bathroom afterwards. Not sure why exactly I can't handle it as I chose the version with only 4g of sugar (the other ones have over 20g of sugar).

Anyway, like I said, I don't -need- to eat because of my treatment but I definitely want to be able to start eating again and get back on the right track.

Thanks for the support.

 

[JDTM]

Okay, understandable. Yeah, right after you said that I remembered... when I responded, I had completely forgotten that you were on TPN. It's good that you're getting some nutrition, but yeah. I'm sure you're looking forward to seeing your GI very soon, and if you're up to it, let us know how you make out!

As an aside, I see you are a Ravens fan. As a New Englander, I guess that makes us mortal enemies. HOWEVER, even if you're not a fan of the Pats, did you see that Matt Light admitted to having Crohn's disease after announcing his retirement this year? Pretty amazing stuff.

 

[ravensfan88]

Okay, understandable. Yeah, right after you said that I remembered... when I responded, I had completely forgotten that you were on TPN. It's good that you're getting some nutrition, but yeah. I'm sure you're looking forward to seeing your GI very soon, and if you're up to it, let us know how you make out!

As an aside, I see you are a Ravens fan. As a New Englander, I guess that makes us mortal enemies. HOWEVER, even if you're not a fan of the Pats, did you see that Matt Light admitted to having Crohn's disease after announcing his retirement this year? Pretty amazing stuff.

Yea, I heard about that. I wonder what symptoms he had? I assume he just had a lot of pain and when those guys (professional athletes) are in pain they just get shot up full of all this different stuff and then they don't feel it anymore. I hope it didn't do tons of damage to him though.

Also, David Garrard has Crohn's and is a huge supporter of it. I think he started his own foundation or is in support of an already existing one. He almost had to quit football because of his CD since he lost over 20 lbs during a bad flare quite a few years back. That makes his return to football over the past few years pretty amazing as well.

 

[JDTM]

The crazy thing is he didn't take ANYTHING for it, I think. He had a resection surgery, but didn't take Crohn's meds after that during his football career, and I think he's looking into medication now that he's no longer playing. Crazy.

Yeah, I was wondering about whether David Garrard was going to start for the Dolphins this year. Never thought I'd actually cheer for Miami.

 

[ravensfan88]

Just got back from my seeing my primary GI. He thinks I had underlying inflammation (since I was pretty bad off before things started getting "under control" and the food I ate exacerbated the symptoms, which makes sense of course. He said food usually only makes you flare up for a few days but in my case, because of how severe it was, it may take longer.

I have a colonoscopy scheduled for 8/14 though I feel that is too far away and hope to call and see if he can fit me in sooner.

He wanted to wait on prescribing anything else or changing any treatments until I see the GI I'm seeing on Monday for a second opinion on everything.

I was, however, prescribed Flagyl once again (I was on Flagyl an Cipro for 10-15 days prior to this flare up) to see if it will clear any existing infection and possibly help with the diarrhea. I did not have increased diarrhea while on the antibiotics, so that's good.

Anyway, hopefully this flare calms down soon so I can eat again. I think it is calming down with the bowel rest as I noticed the control and the urgency reducing last night and this morning. Let's have this continue!

 

[ravensfan88]

Okay, here it is. It has been about 2 weeks now since I started having increased D.

I'm only eating 1 cup of Jello a day right now to give my bowel some rest. I am still making 6-8 trips to the bathroom (they are small trips, but I still have to go or at least have the lingering feeling plus can feel bowel activity i.e. gas moving, etc.). It feels as if it is improving even though I still have to make too many trips, but maybe that's just me trying to convince myself that.

I see a Dr. Mary Harris on Monday and she is supposed to be a very good GI and even better in dealing with patients who have D. I hope she can provide me with some answers and possibly a way to get some relief.

Anyway, as I've been saying, I hope this calms down soon. I was doing so well and now I feel to have sunken back into the hole I was in 2 months ago.

 

[Patricia56]

Avoiding milk products and grains will probably be very helpful to you. Since you're on TPN you don't need to worry about getting the protein, etc from those foods.

When it's inflamed the gut is more sensitive to those foods because they contain large molecules that are hard for the gut to digest.

My layMom's opinion is you shouldn't have eaten the pasta - between the cheese, butter and grains your gut was just not ready for all that at once. The good thing about that is, if true, you are likely to get better after gut rest. Just don't know how long it will take.

Hang in there. Try to find something to do that makes you feel better, especially if it involves helping someone else. I know you're not up to much but maybe you know some older folks (grandparents, aunts, uncles, etc) who would really love to have someone give them a call to chat? Or write them a letter? It's always exciting to get mail don't you think?

 

[ravensfan88]

I saw a second GI today (recommended by my primary GI) to get a second opinion.

She decided that I should increase my dose of Remicade from 5mg/kg to 10mg/kg and to get the dosing every 6 weeks instead of 8. She also told me I could take 6 doses of Lomotil as opposed to the 3 I am taking now (because 3 doesn't seem to do anything).

Basically she is the Head Coach calling the plays for my GI (The QB) to put into action... and I'm the football. So now I just have to wait for my GI to call me and let me know what he thinks! Hopefully my Remicade infusion will be pushed up from September into August and I can get on track to remission!