Having a Flare up - Any tips to manage it? :(

[stacieloup]

Hello All

i am new to this forum, and having a flare up at the moment which is totally wiping me out - usually my flare ups consist of D and Blood - this time its different it is almost always C followed by D because im strugging to get anything out followed by blood (sorry to be crude:ywow

i gave birth to my son in March 2006, and was hospitalised in Sept 2006 in hosp for 6 weeks and finally diagnosed with UC - then in remission on pred steds, came back with evengance in April 2008 and was hosp again only to find it was actually Crohns i had not UC! so does that mean i have both? never understood that.....anyway in 2008 they couldnt get flare under control so after weeks put me on Infliximab every 8 weeks by drip, worked kept me in remission for 1.5 years then i built an antibody against it and become allergic to it, breathing problems etc etc...had to come of this...

i have always been on Aziathoprine since 2006 and Mesalazine granules, and i am still taking these, but only 8 stone in weight so can only tolerate 75mg of Aza - had another flare in hospital in February 2011 and my Specialist was on holiday so they sent me home with steroids - just found out partner of 10 yrs cheated on me, had a really bad break up (back together now) which caused soooo much stress and now my Crohns is absolute agony, i am bleeding like 10 times a day, fever, struggling to pass food, feels like coming back up my throat (never had that symptom before) - i have Pred steds in my cupboard ta home i am sooooo tempted to take them as i feel so unwell and feels like i am in labour with the pains everyday, crying for my mumwhen i am on the toilet, it is unbearable.

cant be seen in the clinic with my specialist - apparently no appts available???? theyv booked me in for camera down my throat but again not untill 1st Agust as out patient.....upped my Aza to 100mg as advised by GP yesterday - but this will wipe me out totlly which is why im always on 75mg

feel like i have no help anywhere, gp wanted to send me to GP assessment ward in hospital yesterday, but thye said it still wont mean i get to go in my secialist ward and iv done that before i end up in a ward for 5 days without being seen, i have a 5 yr old son an its just a no no...

anyways - i really want to help myself, so does anyone have any ideas how i can?? the DR's dont seem to want to know - what could i eat if i chose a liquitd diet??? wuld Compln drinks be enough? or can u buy liquid food?

many thanks for reading (sorry for long post) xx

 

[xJillx]

Hi Stacie and welcome! I am sorry about your current flare and that you can't get in to see a doctor sooner. It's good your doctor upped your Aziathoprine, but the increased dose could take weeks to take effect. Did you doctor suggest steroids? They are essential in getting inflammation under control quickly.

Also, to answer your questions about CD and UC, you can't have both. They are similar in that they cause inflammation in the GI tract. However, UC only causes inflammation in the colon, and the inflammation usually is continuous (it usually starts at the rectum and works its way up through the colon). Crohn's disease can cause inflammation anywhere in the GI tract (mouth to anus), and the inflammation can be patchy (some here, some there). Many people are at first incorrectly diagnosed with UC, then later receive the Crohn's diagnosis.

 

[tiloah]

This is ridiculous! You need to be seen. Perhaps your GI's office doesn't understand just how poor off you are? Sometimes those schedulers think we are on par with someone scheduling a routine colonoscopy. I'd say demand something sooner (like, today) or find a different specialist who can get you in sooner. If you have a fever, can't pass food, and are bleeding, you NEED to be seen. At the very least you can talk to your doc on the phone. They should start something for the acute flare like Prednisone.

Welcome to the forum by the way. I hope they get you sorted out and you start feeling better soon.

 

[Jennifer]

Yes you do need to be seen. You're losing a lot of blood and if you don't get that taken care of then who's gonna help care for your little one? You can take your child with you to the ER or find a friend or relative who will be able to watch them. You cannot let this go on. As stated upping the dose will take time to take effect if it does anything in the first place. ER visits always get you into seeing your specialist sooner and if it doesn't, then your specialist isn't worth seeing and you should seek a second opinion.

I do not suggest trying to treat this yourself with a diet change or taking pills from your cupboard. This is not a time to be playing doctor you need proper treatment.

I'm sorry you're going through this and I really hope you get seen soon (Emergency care at a hospital would be best at this point). Welcome to the forum.

 

[allieinwonder]

I agree with diesanduhr, you should be seen soon! I'm so sorry they are treating you that way! If you have a fever and they can't get you in I would consider going to the ER if you are feeling bad enough.

Liquid diet is pretty much liquids, lol. When I do liquid diet (purely to help my pain since I am undiagnosed), I have done ensure, gatoraide, and pudding. You can also do plain yogurt if you can do dairy. I have a really hard time with the liquid diet because I seem to get hungry, which is crazy because if I don't do the liquid diet and just eliminate fiber and fresh foods I don't get hungry at all. >.< The pudding helps but it doesn't irritate the intestines (as long as you can take dairy).

Liquid diet:http://ibdcrohns.about.com/od/dietandnutrition/p/full-liquid-diet.htm

Low residue diet: http://www.healthcastle.com/low-residue-fiber-diet.shtml

I hope you feel better soon and that they sort you out!

 

[Terriernut]

Stacie, welcome to the forum! Sounds like you are flaring very badly indeed. I understand you have a 5 year old to take care of, but if you dont take care of YOU, well. You could end up in hospital for weeks from having surgery, and then be flat on your back for several more weeks after that.

So...Since you GI's department gargoyle gaurdians, oh, excuse me, receptionists wont let you have an appt, you probably need to make a personal appearance either at the Dr's or at the ER. A weekend in hospital is not your biggest worry with a major flare. Dont ask me how I know this. Now get yourself seen please!??

Wishing you well!!!

 

[adkplunk4]

You do need to be seen like everyone above has said. I do hope you get in soon so you can start feeling better. Keep us posted.
Aplunk

 

[SdN]

Welcome to the forums Stacie and like all the kind people on here have already said I'm sorry for the pain you're going through! You are the best judge of how bad you are feeling right now so if you are even remotely considering going to the ER then I would recommend you go. However, be careful what those doctors try to do to you. I had one ER Doc prescribe me Magnesium Citrate while I was experiencing a flare and it made the flare much much worse.

 

[Jer's Girl]

I have been dealing with C followed by D lately too. No fun.

If you don’t go to the ER and you can’t see your Dr, you could try to go on a temporary liquid diet. I hate it, but that is what I do when I feel a flair coming on. Be sure to drink supplement shakes to get enough calories and vitamins while you do it. Boast, Special K, and Ensure are all good choices. It isn’t a cure, but it might get you through until you can get seen. That is what I am hoping for for myself anyway.

I hope you are feeling better soon!

 

[stacieloup]

awww thankyou for all your help and advice, im still bleeding but since shifting to a low residue diet low fibre the symptoms are easing slightly, but still feel pretty bad - not really burning up anymore, painkillers seem to have helped with that, really debating whether to take prednisolone which i have a stock full of in the cupboard - but had them in 2006 and for 2 months in Feb 2011 and GI said dont ever take them again! i mean its ok for him to say that but when he isnt willing to see me, then that just takes the p**s - after many phone calls and no returned messages from the specialist and his side kicks i went to see my gp and she was disgusted and phoned them, and they said exactly the same to her! that they are fully booked in his clinic, my gp said she is in a flare so needs to be pushed forwards and the receptionist said sorry only thing you can do is refer me to a gp assessment ward and see where i end up?.... they have an extremely bad bad reputation at my hospital - my GP nurse has crohns and after 17 yrs she changed hospitals and has never been better so i recon i am going to do this, only stayed with him as was told he was the best in the country - only thing is NHS patients arent his priority - he was sacked for a year 2 years ago for fraud (taking money of rich people to treat them privately and getting them beds in the ward which i should be on now) so as you can imagine, i am ratty and tired and 'professionals' i should have faith in i havent - just feel like crap - might just go emergency doctors and ask them if i am ok with prednisolone, has anyone been on it for years?? like i say only been on it twice for a few months so i am hoping that getting the inflammation down in the main priority xx

 

[Astra]

Hiya Stacie
and welcome

Ok, get in the car, drive to Whiston Hospital here near me, and walk into the A&E, tell them you've got Crohn's, and suspect you're blocked.
They will see you immediately.
And it's time you changed your hospital and gastro, yours sound like arseholes, I wouldn't waste any more breath on them.
Your GP needs to make a referral to a new hospital, it's your right to choose.
Choose mine, Whiston Hospital, maybe 30 minutes away from Stockport!
Hope you get something sorted soon Stacie, don't suffer in silence
lotsa luv
Joan xxx

 

[tiloah]

really debating whether to take prednisolone which i have a stock full of in the cupboard - but had them in 2006 and for 2 months in Feb 2011 and GI said dont ever take them again! i mean its ok for him to say that but when he isnt willing to see me, then that just takes the p**s - after many phone calls and no returned messages from the specialist and his side kicks i went to see my gp and she was disgusted and phoned them, and they said exactly the same to her! that they are fully booked in his clinic, my gp said she is in a flare so needs to be pushed forwards and the receptionist said sorry only thing you can do is refer me to a gp assessment ward and see where i end up?.... they have an extremely bad bad reputation at my hospital

Don't self medicate. Especially if your doctor told you not to take it again (although it would help to know why he said that). If it's bad enough that you feel the need to self medicate, you need to be seen. Can your GP make a referral anywhere else? Surely this clinic is not the only GI in your area? Even just having someone prescribe something over the phone until they can get you in...

I can imagine why they have a bad reputation! Most clinics I know keep at least one appointment open per day for "emergency" visits.

 

[Jennifer]

You sure they didn't mean worst in the country? That's pretty bad. With all the blood you're losing you might even need a blood transfusion. I'm still in favor of you going to the emergency room. There they can try to treat your symptoms and maybe even do tests to find what's causing the bleeding (often times a barium swallow with x-ray can find the source). I'd find another GI for sure but I'd also get treated first and it seems like the emergency room is the only way at this point.

 

[tiloah]

You sure they didn't mean worst in the country? That's pretty bad. With all the blood you're losing you might even need a blood transfusion. I'm still in favor of you going to the emergency room. There they can try to treat your symptoms and maybe even do tests to find what's causing the bleeding (often times a barium swallow with x-ray can find the source). I'd find another GI for sure but I'd also get treated first and it seems like the emergency room is the only way at this point.

Yea. If you can't get treated elsewhere, go to the ER. You NEED TO BE SEEN.

 

[stacieloup]

hello again - big thanks to you ALL for all your help an advice - i went straight to A&E (er) and was kept in - just got out only yesterday, the A&E took an xray and said at the very top of my bowel i was absolutely compacted/ constipated, the mid section was full of gas / distention and they recon the bottom part is full of inflammation (no wonder iv been in so much pain)

anyways they give me a Kleen Prep in hospital 4 sachets in 4 litres of water got to be the worst thing i have ever had to drink in my life... it was horrendous, but got me on the toilet every 10 mins all day and night! lol im shattered!

then the specialist seen me, said i can go home and wait for an appt as an outpatient for colonsocopy to see whats going on etc - then came back on Friday and said my bloods were to low and i needed to stay in untill yesterday - anyway bloods arent showing mega inflammation but defo something going on...he said after camera test results he may put me on Adulmiab? i think its called that its an injection in ur belly every 2 weeks...

i have stuck to a very low fibre diet and peppermint teas seem to help, and painkillers, defo dont feel as bad as the other week, but still not myself, and no solid stools just blood and liquid - i am almost certain i have a narrowing though....

they said because i havent been sick altho felt it it wont be a blockage - thank god!!

thanks again for all your help - p.s im dreading my camera test on Thursday my hospital has been all over the news this week as there is a psycho doctor on the loose killing patients (he is injecting poison into patients saline drips) 3 people have died already - as you can imagine i was in there when it was fornt page news so was mortified, as soon as this flare is over and treated i am defo defo changing hospitals :ywow:

thanks again! hope everyone else is well!! x

 

[Terriernut]

Stacie, I'm very glad to know that you are getting the help you need, even if Kleen prep was involved!!

The camera test will certainly help them to help you more, dont be scared! Honey, its gotta be better than a colonoscopy!

As for your idea to change hospitals a bit ago, yeah, I'm thinking thats a bloody damn good idea!!!

Keep getting better every day!!

 

[xJillx]

Thanks for the update, Stacie. I am sorry you've been having such a tough time.

That is crazy about that doctor in your hospital! But try not to worry about the pill cam. It's the easiest test, once you get through the prep. Good luck!

 

[allieinwonder]

I have a pill cam coming up soon too! The prep is the worst part! Good luck!! I hope it shows whats going on!

 

[tiloah]

I'm so glad you went in! Thanks for updating us. I hope they find you an answer. Adalimumab is more commonly referred to as Humira. I was on that for a few years. I hope it works wonders for you.

 

[Jer's Girl]

I'm glad you got the help you needed.