Think my Crohn's has taken a turn for the worse

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NiceCupOfTea
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Date Joined Jan 2010
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   Posted 9/12/2017 7:28 AM (GMT -6)   
Fever last night, fever today (38C or 100.5C). Not horrendously high, but still enough to make me feel like sh!t. Stomach has been killing me. The visit to the eye casualty this morning was horrible: I could barely sit still waiting for my meds, I was in so much pain :-/

Anyway, I got a better doctor than last time, who did more tests and got an opinion from the consultant. They were considering oral steroids, but I overheard the consultant say that eye drops were safer. Apparently my eye pressure is okay. The ridiculous glare I get from lights at nightime and the sun is apparently caused by the inflammatory cells in my eye, not a cataract (as I was beginning to fear). My Crohn's apparently makes the uveitis more stubborn and harder to treat than in somebody who doesn't have any other issues. I will also probably get a cataract sooner than if I didn't have Crohn's/uveitis, i.e. say 65 instead of 85. Great sad

So I've been given yet more freaking steroid eye drops, but have to take them for double the length of time, e.g. 6 drops a day for 2 weeks, 5 drops a day for 2 weeks, etc.

I dunno what to do about the Crohn's. In a sort of way I was hoping I'd be prescribed oral steroids, total bandaid though that is. If this doesn't get better in the next couple of days, I will need to make an appointment - can't go on like this.

BETTY SUE
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Date Joined Nov 2015
Total Posts : 210
   Posted 9/12/2017 7:53 AM (GMT -6)   
I am so sorry to hear this NCOT. You seem to have so many Crohn's related health issues. I wish I had the right words to say or even better knew the right medications for this debilitating disease. I am still relatively new to it all of this but I know that it can be an endless array of symptoms. I hope you can figure this out and have some better days ahead. You have helped me cope with my son's Crohn's symptoms on so many occasions and I am grateful for your support. Sending healing thoughts your way 🌈

NiceCupOfTea
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Date Joined Jan 2010
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   Posted 9/12/2017 7:57 AM (GMT -6)   
Thank you Betty Sue! I hope your son is doing okay.

Stomach is still hurting - it's just about tolerable when I'm lying down on the sofa. Trying to hold off on painkillers until the evening. Gonna just drink fluids for today I think and not eat anything solid.
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

BETTY SUE
Regular Member


Date Joined Nov 2015
Total Posts : 210
   Posted 9/12/2017 8:06 AM (GMT -6)   
That sounds like a good plan. Resting as well as you can despite pain. I imagine it is a constant trial and error to see what works best. My son is currently doing amazingly well (deep remission with minimal symptoms) but I know that can and will change. I try to hang on to the positives when the come! Rest well NCOT!

Bulmanboi123
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Date Joined Aug 2017
Total Posts : 48
   Posted 9/12/2017 8:33 AM (GMT -6)   
Hey NCOT ,

Know we have been in a few threads together , sorry to hear your suffering at the moment !

Your plan does sound good , the worst flare I had I fasted for 3 days and I think it gave my guts time to mend slightly. Well done on pushing through!

Stay strong 👌

NiceCupOfTea
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Date Joined Jan 2010
Total Posts : 9766
   Posted 9/12/2017 9:58 AM (GMT -6)   
I had to give in and take paracetamol and codeine. The pain spiked up to about an 8 - almost unbearable - and I had vicious chills. Turned on the radiator and just sat with my arms on top of it for a while. Dear god, if these fevers continue, my heating bills are gonna be horrendous this winter.

Phoned my mum once I felt better. She gave me a recipe for a home-made bread and butter pudding >_>. (Without the raisins, obviously.) It's just white bread, couple of eggs, bit of sugar and milk, so think I'll give it a go. But that will be the only thing I will eat today. If that causes me serious issues, then I will have to get in touch with my hospital 'cos that's about as bland as it can get.

@Betty Sue - Thanks! Glad your son is in a stable remission. Some people with Crohn's can stay in remission for many years, so hopefully your son will be one of them.

@Bulmanboi123 - Fasting can definitely help with symptoms. In fact that was the only thing which helped me, even slightly: the less I ate the fewer symptoms I had. Unfortunately the disease was still doing its thing underneath, which is why I had to have surgery in the end.

But yeah. Hope I don't regret this bread and butter pudding :-/

EruditePaul
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Date Joined Jan 2006
Total Posts : 296
   Posted 9/12/2017 10:20 AM (GMT -6)   
NCOT: I am a married man, but I always called my mom when I felt the worst. How about bland soup, or flavored congee (porridge) for a change in diet that might help?

Labradorite
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Date Joined Sep 2009
Total Posts : 951
   Posted 9/12/2017 10:30 AM (GMT -6)   
NCOT, I hope you get some relief fast! Definitely get some help if those fever don't go down:/ It sounds rather hospital worthy to me as well

Post Edited (Labradorite) : 9/12/2017 2:35:03 PM (GMT-6)


gumby44
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Date Joined Nov 2007
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   Posted 9/12/2017 1:33 PM (GMT -6)   
Hey NCOT,
I'm so sorry you are back in a miserable flare. I'm wondering if you need to be in hospital? I don't like hearing that your pain is an 8! Stay on low residue and liquids until you can figure out what's up. I hate that this is happening to you!
58 yr. old female, diagnosed with Crohn's in terminal ileum Sept-Oct. 2007. Dx. with c.difficile 1/12, 10/14, 11/15, 1/16. Fecal transplant on 2/24/16, and so far, no more c.diff!

5/20/14: Ileo-colic resection surgery after stricturing and partial bowel obstruction.
Not currently on any Crohn's meds and in remission, but struggling with bad IBS.

scifigal2k
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Date Joined May 2012
Total Posts : 3223
   Posted 9/12/2017 2:23 PM (GMT -6)   
I'm so sorry. sad I agree that you may need to head to the hospital.
"For this thing I besought the Lord thrice that it depart from me. He said, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities; I take pleasure in infirmities, reproaches, necessities, persecutions, distresses, for when I am weak, then am I strong" 2 Cor

NiceCupOfTea
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Date Joined Jan 2010
Total Posts : 9766
   Posted 9/12/2017 2:35 PM (GMT -6)   
Hi guys. Still got a fever, still got chills (despite having the heating on high), still feeing like I'm on the road to death's door :-/

I made the bread and butter pudding. Forgotten what a faff it was and bitterly regretted not just going into M&S and buying their ready-made version, as it's better than the one I made. (Forgot that you shouldn't use fresh bread and it was all I had.) Anyway, I ate about half of it. Should drink something now as I've had very little to drink all day.

The pain is about a 5 now, so unpleasant but bearable.

I forgot to buy Ready Brek when I was in the supermarket >_<. That's basically smooth porridge.

Have an important meeting tomorrow with my support worker, which I don't want to miss so I'll take codeine to get through it if I have to. But I'll see how I am tomorrow. If I'm no better I'll certainly email my IBD nurse. And if the pain does become intolerable I'll have to think about going to A&E... :-/ That's even more of a nightmare prospect now, 'cos I live further away from my Crohn's hospital than I used to and I don't want to go to my local hospital - it's not much cop.

Edit: Okay guys, unless I have a miraculous turn around tomorrow morning I think I'm gonna have to go to A&E. Took paracetamol and 30mg codeine about 45 minutes ago and it's not done a lot - pain is still about a 7. I will never be able to fall sleep through this.

Holy crap: temp is 38.8C now.

Post Edited (NiceCupOfTea) : 9/12/2017 5:08:48 PM (GMT-6)


clo2014
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Date Joined Feb 2015
Total Posts : 634
   Posted 9/12/2017 5:48 PM (GMT -6)   
NCOT.....

How are you? Where are you? Please be mindful of a fever and Crohns....

Be careful and please let us know how you are!!!

You are appreciated so very much and we just want you to be safe!

Clo
06/12-07/14 symptoms start, no diagnosis.12/14 diagnosed UC & diverticulitis. 01/15 hosp- fistulas, DX changed to Crohns, 02/15 developed new skin rashes, eye problems and painful joints 06/15 Hosp.2x again.. new specialist.Said was worse case he's seen. 7/16 hosp 5mm Stricture stricturplasty to 15 mm.09/16 colostomy. Meds: Remicade, methtrexate, prednison,folic acid, vit D, calcium, pro biotic,

gumby44
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Date Joined Nov 2007
Total Posts : 4301
   Posted 9/12/2017 6:28 PM (GMT -6)   
You better be at A&E! We'll be worrying so let us know how you are. I wish I lived nearby instead of across the ocean!!
58 yr. old female, diagnosed with Crohn's in terminal ileum Sept-Oct. 2007. Dx. with c.difficile 1/12, 10/14, 11/15, 1/16. Fecal transplant on 2/24/16, and so far, no more c.diff!

5/20/14: Ileo-colic resection surgery after stricturing and partial bowel obstruction.
Not currently on any Crohn's meds and in remission, but struggling with bad IBS.

73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1723
   Posted 9/12/2017 7:20 PM (GMT -6)   
Miranda,

So sorry you're going through such a rough spell. Really hope you get things under control. Is there any chance this could be gastritis or something viral?

Keep us posted, keep the fluids up, try low residue and supplement with Ensure for a few days. Hope you're feeling better soon.

Labradorite
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Date Joined Sep 2009
Total Posts : 951
   Posted 9/12/2017 8:34 PM (GMT -6)   
Worried about you! How is the fever?

clo2014
Veteran Member


Date Joined Feb 2015
Total Posts : 634
   Posted 9/12/2017 11:10 PM (GMT -6)   
Just checking in on you.....

Well, can not sleep for worrying about you. Gosh I wish I too lived closer.

Won't type too much. My infusion apparently knocked out all my brain cells...read another post elsewhere and went what?

Will check back in the morning. Hope you are feeling better.

Clo
06/12-07/14 symptoms start, no diagnosis.12/14 diagnosed UC & diverticulitis. 01/15 hosp- fistulas, DX changed to Crohns, 02/15 developed new skin rashes, eye problems and painful joints 06/15 Hosp.2x again.. new specialist.Said was worse case he's seen. 7/16 hosp 5mm Stricture stricturplasty to 15 mm.09/16 colostomy. Meds: Remicade, methtrexate, prednison,folic acid, vit D, calcium, pro biotic,

NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 9766
   Posted 9/13/2017 4:50 AM (GMT -6)   
Morning folks. Dear god, the night felt like it would never end. Took a 2nd codeine, which did kick in and I had 2-3 hours of blessed relaxation and blissfully calm guts. But when I tried to fall asleep, I couldn't fall asleep for love or money. The pain and nausea crept back. Started to feel starved and wolfed down 4 slices of ham at 3am like a ravenous wildebeest. Went back to bed. Still couldn't sleep. If I scraped 2 hours of extremely poor-quality sleep over 9 hours I did well.

The fever broke some time during the night. It's 37.2C right now (bit higher than normal, especially as my temp usually runs slightly low). The pain is mild at the moment, although I had some quite bad upper left abdominal pain earlier which made me wonder if it was pancreatitis :/

So yeah, I feel shockingly bad from lack of sleep and the general gruellingness of a severe Crohn's flare-up/whatever, but the pain and fever seems to have settled down. And yet, I still don't feel right. I'm making two boiled eggs for lunch; I'll see how I get on with those. If my symptoms get worse again, rest assured I'll be off to A&E.

Thank you muchly everyone for your concern. I'm genuinely touched by it :p

gumby44
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Date Joined Nov 2007
Total Posts : 4301
   Posted 9/13/2017 7:18 AM (GMT -6)   
Can you call your IBD nurse this morning and let her know what's going on? Maybe by some miracle the GI doc has a cancellation and can see you. I'm glad your fever broke but your symptoms still sound worrisome.
58 yr. old female, diagnosed with Crohn's in terminal ileum Sept-Oct. 2007. Dx. with c.difficile 1/12, 10/14, 11/15, 1/16. Fecal transplant on 2/24/16, and so far, no more c.diff!

5/20/14: Ileo-colic resection surgery after stricturing and partial bowel obstruction.
Not currently on any Crohn's meds and in remission, but struggling with bad IBS.

NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 9766
   Posted 9/13/2017 4:38 PM (GMT -6)   
Hi gumby.

I think I'll wait on calling the IBD nurse, as the fever has gone now and the pain gone. (Well, not 100% gone but what's left is just my normal Crohn's rubbish.) I think I have to conclude that it was probably a virus after all :/ But that said, it was similar to what I went through 5 years ago on Remicade. Developed spiking fevers which got much worse at night and had a similar sort of abdominal pain. Only instead of going away after a couple of days the spiking fevers continued to get higher and finally I ended up in hospital. (Funnily enough, when I was first admitted they thought it was gastroenteritis and sent me home after a few days. I was back in again in no time 'cos it wasn't gastroenteritis.)

So yeah, I was worried I had toxic megacolon again. Or septic shock.

While I'm relieved to have avoided a hospital stay, which in my present state of mind I don't think I would have coped well with, I'm still pretty down about everything. Oh, and that upper left abdominal pain? I had a panicked thought it might be shingles again, since it was in the exact same spot the shingles occurred last time. Still feels sore in that spot but it's not hurting badly anymore. And there's no rash, at least not yet.
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4301
   Posted 9/13/2017 8:16 PM (GMT -6)   
You might have some residual neurological pain in the same spot where the shingles was. That's not at all uncommon. I hope you really had a virus. But going to A&E too soon is probably not useful; you are right about that. But if it comes back, then please go in!

I had a bad incident two weeks ago. My husband and I went to a new Mediterranean restaurant. We split two appetizers and one entree, so we both ate exactly the same food. The food tasted fantastic and we left saying it might be our new favorite restaurant. I might have eaten too much raw veggies like lettuce and beets, or I maybe it was that there was a bit more sprinkled cheese than I normally have. Whatever it was, I got violently ill at about 1:00 AM that night. Fever, nausea, massive D, chills, etc. I felt ridiculously ill all night. I would have suspected food poisoning, but my husband was perfectly fine. I did get better within 24 hours. I haven't been out to dinner since then because it really was traumatic. I still don't get why salad stuff would bother me if I'm in remission and have no stricture.....strange stuff.

Anyway, if you slowly get better then chuck it off to one of those mysterious Crohn's adventures, but if you are still sick, then please don't avoid getting help. Glad you are doing better though!!
58 yr. old female, diagnosed with Crohn's in terminal ileum Sept-Oct. 2007. Dx. with c.difficile 1/12, 10/14, 11/15, 1/16. Fecal transplant on 2/24/16, and so far, no more c.diff!

5/20/14: Ileo-colic resection surgery after stricturing and partial bowel obstruction.
Not currently on any Crohn's meds and in remission, but struggling with bad IBS.

NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 9766
   Posted 9/14/2017 5:55 AM (GMT -6)   
The upper left pain came back, but in a slightly higher spot than before so I dunno :/ Always seems to be at its worse in the mornings when I've been lying in bed for hours, then gradually improves after getting up. Still, think it was like that for the shingles pain too. I have no idea anymore.

I'm sorry about the Mediterranean meal. Does salad normally bother you if you eat it, or was it just this occasion? As much as I love mediterranean food, I do find it pretty indigestible. (Never used to, but I seem to find everything indigestible nowadays.) Also, I had a very similar experience with my mum a few years ago. We were at a restaurant in London. Shared a starter of oysters and had the same main of crab linguine. (I probably had some sort of dessert but don't remember.) Anyway, I was hideously ill later on and my mum was fine. Never knew if that was food poisoning or if the rich food and alcohol had triggered a Crohn's attack.

Anyway, thanks Gumby. Hopefully in time you can bring yourself to give the mediterranean place another go!
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

EruditePaul
Regular Member


Date Joined Jan 2006
Total Posts : 296
   Posted 9/14/2017 7:05 AM (GMT -6)   
NCOT: are you a female? I did not know that.
Diagnosed of Crohn's Disease in 1994. Having been treated exclusively with Chinese herbs for 20 years. Currently not on any western medicine.

gumby44
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Date Joined Nov 2007
Total Posts : 4301
   Posted 9/14/2017 7:47 AM (GMT -6)   
I hope you are doing better today. At home I might eat a bit of salad or raw veggies, but at the restaurant I ate more than usual. I am also noticing that my once mild lactose intolerance has become much worse lately. I see my GI next week for a routine visit. Since taking the Vanco the D is much better (except for the restaurant night) so it did seem to help. He'll probably have nothing to say as usual. I do walk around with that chronic lurking fear that the Crohn's is back and I'm not really in remission, but I guess I'll know when it gets worse if that is the case!

I hope you can do something nice for yourself today!
58 yr. old female, diagnosed with Crohn's in terminal ileum Sept-Oct. 2007. Dx. with c.difficile 1/12, 10/14, 11/15, 1/16. Fecal transplant on 2/24/16, and so far, no more c.diff!

5/20/14: Ileo-colic resection surgery after stricturing and partial bowel obstruction.
Not currently on any Crohn's meds and in remission, but struggling with bad IBS.

U B Tough
Veteran Member


Date Joined Aug 2015
Total Posts : 829
   Posted 9/14/2017 8:03 AM (GMT -6)   
NCOT----I'm so sorry. This totally sucks. glad you managed to stay away from the hospital but on the other hand I don't want you getting to the point of crisis especially with a high fever.

I did a tad bit of research on uvetis (I'm sure you've done more) and found that remicade is sometimes prescribed. It sounds like that drug didn't agree with you though?

How are you today? Are you weak? Awesome you were able to make that bread pudding. Sometimes I feel so weak that I can't lift a finger but I also surprise myself with what I can do or have to do to survive. I get the analogy of the ravenous wildebeast but I'm sure you're much cuter than one of thosesmile You're just as tough though!

Sending much love and healing....thinking of you so very often.
female, Canada

IVIG (on hold)


UC/Crohns - tested positive for MAP antibodies & mycobacterium
PG- remission
chronic perianal abscess and fistulas. Failed setons...it was pure torture.
started Stelara May 24, 2017. 100mg imuran

Hoping to start Anti-MAP drugs soon
Had a 10 week reprieve, now flaring...again. 4 years of flaring is tiresome.

NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 9766
   Posted 9/14/2017 8:43 AM (GMT -6)   
EruditePaul said...
NCOT: are you a female? I did not know that.


Yeah. What gave the game away? >.>

@gumby - Yeah, I will eat a small amount of salad or a few veggies as well. Although a few days ago I had onion rings and breaded mushrooms, then liver, bacon and onions the day after. Became ill later that night. Every time I push the boat out, I seem to end up regretting it. I find it easier to avoid veggies at the dinner table altogether now, 'cos I have enough trouble digesting food as it is. But I got greedy with the onion rings and breaded mushrooms :-/

I also have a sinking feeling the shingles is coming back - the pain is so similar to last time (the pain that I was convinced was pancreatitis at first). There's no rash though, and I dunno if any doctor will prescribe me anti-shingle medication without a rash. I'm gonna phone up my GP surgery and see what they say, 'cos I don't wanna go through weeks of this again if it is shingles.

I'm glad the Vanco has helped at any rate. Hopefully your GI won't be completely useless.

@UB - Yeah, pretty much the same drugs are used to treat uveitis as any other autoimmune condition. Remicade didn't disagree with me: it just didn't work. The problem is, I've quite likely to have built up antibodies to it, having been on it and stopped it. Entyvio won't work as it only works on gut cells. Not sure about Stelara - must admit I don't know much about it. Gonna have to look it up and see how it actually works.

I feel slightly drained, but almost back to normal apart from the shingles(?) pain. Appetite has come back so I'm eating a late lunch of chocolate porridge. (Conclusion: needs more chocolate.)

How are you doing at the moment? I hope you're getting some respite after the recent abscess surgery.
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