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What precautionary measures do you take when you feel a flare up is approaching?

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Crohn's Disease
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Posted 11/1/2011 1:02 PM (GMT 0)
I'm in the middle of a new flare up. Yesterday, I kept vomiting despite taking Zofran, had explosive D and abdominal pain. It seems that my stomach got jealous of my colon-lol.I posted inquiring whether it was a flare up within a flare up and Nanners answered thankfully that I was just plain flaring. So, I could manage to see my doc. He prescribed Zofran inj/12 hrs for 3 days and then a daily inj for other 3 days. (I have GERD, gastritis and duodenitis). Also, again he recommended an antibacterial after I failed 3 courses now (Why is he convinced that the cause of my flare up is a bacterial overgrowth, I don't know). And for pain, I have to take Voltaren suppositories (something new as I got used to all painkillers and they lost their effect).

My problem is that I felt that and even posted asking. I reminded my doc that I called him 2 days earlier and asked him for help. All he did was insisting on my continuing Tavanic and Orindazole for 10 days, take a Zofran inj and an anti-spasmodic inj.

I don't want to be repetitive in my postings but one can tell that she/he will become sick, right?

A day before the symptoms exacerbate (bye the way, I haven't reached remission yet but there are days where symptoms settle), I am very fatigued, sleep a lot and have general malaise.

Also, for me I have three types of flare ups: the proctitis one where I have severe rectal pain, pressure over rectum and tenesmus. I think that the next time I get such a flare up, I'll have to take steroid enemas until I see my doc.
The second type is when I have explosive D (15 times in 2 hrs or less). In such a case, I call my doc and he tells me to increase my pred dose and asks me to see him.
The last kind I get is where I wake up with high fever (39.5), vomiting and D w/o blood. Usually, my family calls my doc, he recommends an antibiotic inj and that I should see him the next day.

The problem is that these flare ups are recurrent and I have been off work a lot lately. I really feel guilty. Other times, my doc is away and I can't handle it without him.

So, are there any precautionary measures that one can take when one feels that there is a flare up in the horizon? I feel that I am doc-dependent and whenever I ask him about guidelines to follow when I'm sick, he tells me that this is not feasible as every time the flare up is different than the other!!!

Really appreciate your replies as I have learnt a lot from this forum and owe it a lot at a time when I felt that I was desperate and no body I knew could identify with my symptoms.
Thank you.
Posted 11/1/2011 1:33 PM (GMT 0)
When I feel a flare coming on I immediately go on my own essential foods diet. I eat only those foods that I know for sure are safe for me, like cabbage, apple sauce, chicken broth, etc.

I increase probiotics. I normally take a packet of VSL3DS each day. I will increase that to 2-3 packets and also include other probiotics that I have found helpful for me such as Culturelle and S. Boulardii. I find that the diversity helps.

I make sure to take my powdered psyllium seed. Don't use it every day because it tastes terrible but it sure does work for me. Mix it with apple sauce, blueberries, and VSL3.

I am allergic to mesalamines so I have not tried mesalamine enemas. But I have heard so many stories about their effectiveness that I must recommend them.
Posted 11/1/2011 2:04 PM (GMT 0)
I like Babe modify my diet to something soft and very bland. I also try to stop the diarrhea with something like Immodium after 3 or 4 diarrhea bouts. I learned in my last flare that this really helps me not to feel as bad. I don't get as dehydrated that way. I try to really keep my fluids intake up too. If you have to just try sipping it every 5 minutes to keep fluids in you. Probiotics are a definite too. They really help me too. Hugs!
Posted 11/1/2011 4:00 PM (GMT 0)
I make the sign of the cross , turn in a circle three times and then spit . Does that help ? Heck no , but it makes me feel better about what i can do about an oncoming flare . My diet is pretty much the same all the time , just trying to keep the bad times at bay and meds , well taking those is a given . So if hanging garlic , smoke and mirrors or a silver bullet works for anyone , let me know .
Posted 11/1/2011 4:14 PM (GMT 0)
I have not been in a major flare for quote some time, but I know when a bad day is coming is pretty much here. I drop to potatoes, G2 and Ensure - my safest items if it looks to get rough...take that intestines!
Not as dramatic and artistic as Sniper's move, but I also tend to say please, please please calm down under my breath a lot.....I think it is an adult version of thumb sucking in its calming effect!
Posted 11/1/2011 4:57 PM (GMT 0)

tsitodawg said...
Your fever is a big indication that something else is going on and I can understand why your doc wants to give you an antibiotic injection.

Fevers can be a part of Crohn's and in my case are. Back in 2005/6 time, I had what I'm pretty sure now was just a major Crohn's flare-up, but at the time I was thrown by the fact I had high fevers regularly. However, I had other signs of a flare up which I (and nor my doctors I might add) didn't recognise as being part of a flare-up, eg increased platelets. (I was even referred to a haematologist 'cos of my blood test results, who found nothing wrong.)

I'm just singling this out 'cos my most recent flare up was like minnietoty's 3rd type, with vomiting, diarrhoea (w/o blood but I rarely have blood) and high fevers pushing 40C - while on Remicade. I was admitted into hospital a few weeks ago, where I must have been tested for every infectious disease going, but nothing was found. Nor was my white blood cell count particularly elevated, a classic sign of infection. Even so my consultant still diagnosed gastroenteritis initially, although I don't think it was that at all.

Anyhow, jumping forwards, a CT scan eventually revealed a stricture. That was probably responsible for the nausea and vomiting, so TC (topic creator), you should rule out the possibility of a stricture unless you know for definite you don't have one. It took a couple of weeks, but my flare-up was knocked on the head with antibiotics, IV steroids and Remicade (my 3rd dose - I'm new to it still). I was admitted into hospital the first time via A&E. (ER, if you are not from the UK.) Was discharged after a few days, became iller than ever, and got an emergency appointment with my GP, who booked me an ambulance to hospital straight away.

In my case, I went to A&E because I felt scared of having such a high fever while on a heavy-duty immunesuppressant. Also, I just felt extremely unwell within myself. I'm glad I went because I wasn't showing any sign of getting better. Maybe you could do the same, TC? It seems like your doctor isn't dealing with your flare-ups adequately. Also, as a hospital patient it's easier to get tests and speak to other doctors.

Other than that, I doan't got any other suggestions really. I usually can't tell beforehand I'm going to become sick, because it's a gradual process with me: I go from being sick to sicker over a period of time. I'm not one of those who have periods of remission, then a dramatic flare-up overnight.
Posted 11/1/2011 7:44 PM (GMT 0)
Dear all, thank you very much. I really appreciate it.

The Zofran im injections/ 12 hrs have improved the vomiting and nausea and still have 5 days ahead until I finish this Zofran course. The real problem is with the antiamoebic or antiprotozoal (although i have been never tested positive for either of these and have always had the same symptoms), it makes me sleep a lot.

As you all mentioned, I usually eat chicken, mashed or baked potato, white rice, bread, cheese, Ensure and no veggies or fruits. So, I did not change my diet. The only thing I think might have caused this flare up is red meat. My doc insisted that I should eat meat and increase the intake as I don't have proper food.

As Nanners mentioned, I learnt too to take Lomotil after the 3rd or 4th bowel movement but sometimes the burst is so aggressive that I become easily dehydrated and have to take 3 tablets of Lomotil to keep things under control.
I cannot tolerate probiotics, so it is not an option for me. I read at this forum that I should take probiotics after an antibiotic course, so I'll try to negotiate this with my doc after I finish the current antibiotic course and may be he suggests a new kind.

Tsitodawg, I do take Pentasa tablets 2g/day, enema cort, Methotrexate im inj 25mg/week (hasn't kicked in yet - only 8 so far), Pred (7.5 mg - can't go lower) and will in 2 weeks time be switched to Entocort. I feel that my problem stems from the fact that I'm not fully covered. What I mean is my pred dose is very minimal and MTX hasn't kicked in yet. I remember when I was on 40 mg, 30 and 20 mg of pred, I had no symptoms, could eat whatever I wanted and was very well. I once tried reaching 2.5 mg of pred and had to be hospitalized. So, my doc recommended my keeping this maintenance dose (7.5mg) until either MTX or Entocort kick in.

NiceCupOfTea, I don't have any strictures. My problem is that I have symptoms without any naked eye manifestations. My doc keeps telling me that once he can see an ulcer on the scope, he will switch me to Remicade but before then he can't. My disease is called indeterminate colitis with an inclination towards Crohn's.

The big question is: Would treatment differ had I had clear cut ulcers? I already take all the lines of treatment intended for IBD: steroids pills and enemas, 5-ASAs, antibiotics, immunosuppressants MTX ( have a bad experience with both azathioprine and Imuran). The only thing I haven't tried are biologics.

Take care!
Posted 11/1/2011 8:45 PM (GMT 0)
Huh? Since I read on here all the time about doctors who blithely tell their patients they don't have Crohn's because there's no sign of it on the scope, your reply made me do quite the about turn, minnie. Hope you don't mind me asking, but how do your doctors decide you have a flare-up? Blood tests and biopsies? I had always assumed it was the ulcers, strictures, etc., which caused the symptoms of Crohn's. Now I'm wondering if Crohn's can cause symptoms, regardless of the state of a person's intestines. It's so confusing, this disease. I don't feel like I understand it at all.

Anyway, next question, which no doubt will be prove to be utterly useless. A high temperature could be indicative of an abscess, so have you been checked out for that? I don't think an abscess would explain the vomiting though.

From what you say about your treatment protocol: no, apart from the biologics. Sounds like you've been through all the standard IBD drugs apart from them.
Posted 11/1/2011 11:04 PM (GMT 0)
I found out later that my original G.I. was getting huge kickbacks for doing the original trials for remicade and was not looking out for my best interest.

Can this be the basis for a lawsuit?

BTW I like your posts because you always have good information to share. However, (maybe because I am only semi-literate), your posts would be much easier to read if you split them into shorter paragraphs with an empty line between each paragraph. This would make it less likely for me to miss any of the points you are trying to make.
Posted 11/2/2011 12:27 AM (GMT 0)
@tsitso - Far as I know, I've never had an abscess. Certainly not on my butt cheeks >_>. But not an internal one either. If there were no signs of infection, the only thing I can conclude is that my fevers were caused directly by my Crohn's flaring up.

Also, I know about extra-intestinal manifestations and how they can flare up independently of what's going on in the intestines. The TC was describing severe GI symptoms, though, which was what puzzled me. Not that I disbelieve the TC, I hasten to add - I do believe every word of it. Just don't understand it, that's all. How can Crohn's cause diarrhoea if there's no visible damage in the intestines? Seems to me like either a damaged part of the bowel has been missed or there is another cause of the symptoms.
Posted 11/2/2011 3:21 AM (GMT 0)
Tsito (why do I always want to add another 's'? >_>), getting a clean scope this Thursday is what I'm a bit afraid of. It's hard enough getting doctors to take your symptoms seriously as it is; almost impossible if according to blood tests and scopes you are 'normal'. I'm a bit scared, too, of living permanently with a stricture, but I'm jumping ahead of myself now. Suffice to say, I think IBS and bacterial overgrowth would probably come underneath the 'other causes' that I mentioned, but it is a grey area - both those things might have derived from the Crohn's or be independent from it. So I guess I'm being a little bit pedantic, really.

I'm grateful not to have had any abscesses, trust me! Grateful to have not had a lot of things, actually... :-/

Apparently my white blood cell wasn't much elevated when I went into hospital - a bit, but not enough to account for such high temps. Once infectious disease had been ruled out, the docs seemed to shrug their shoulders and put it down to part of the Crohn's. Yeah, a stricture was found. I also had massively high inflammation. CPR was 350-ish, down to under 30 when I left hospital. Only thing left to find out now is whether the stricture was caused by temporary swelling or permanent scar tissue.

I couldn't agree more about Crohn's disease being broken up further. In fact I think it will happen. Probably not with UC, 'cos the presentation of that seems much more uniform than with Crohn's. But Crohn's almost seems like a different disease according to who you speak to.
Posted 11/2/2011 9:33 AM (GMT 0)
Firstly, you don't have to have an infection or an abscess to have a fever with inflammatory diseases. Our immune systems can over work at any time and give us fevers. No one knows why exactly so it doesn't pay to wonder or worry about it. Some of the time this will happen with a flare but it doesn't have to. People with IBS will NOT have this happen unless they are just sick with something else as they do not have an auto-immune disease. People with RA, Lupus, and the myriad of other auto-immune diseases have to deal with fevers on and off. I can run a fever for one day and the next be fine and my blood is checked almost monthly and I don't have an elevated white count. As I stated on here many times, if your fever gets above 101F go to the ER. Just them hooking you up to a nice cool IV of saline will make you feel so much better.. I know.

The next thing that I want to mention is that Voltaren is a total no no as it is a form of aspirin. I can't imagine any GI knowledgeable with the ins and outs of Crohn's prescribing it as a suppository to someone with active symptoms. My b/f had to use the gel externally for a problem and I read through the insert. Please read your insert from the package, not only what the pharmacy gives you with your receipt. Pentasa is also related to aspirin as it is a 5-ASA but aspirin (ASA) affects us in very detrimental ways creating even MORE inflammation. Unfortunately, I have to take a low dose aspirin now maybe for the rest of my life as I had a stent put in my brain and they are worried about me throwing off clots from it. AND I also have to take fiorinals when I get Migraines (can't take anything else - already on gabapentin) which have an aspirin in them but thankfully I haven't needed to take those too often lately. I can't take tylenol.

The way you have been describing all the problems you have had for a while I personally think you should be in the hospital on IV Cipro and Flagyl and of course IV saline fluids. I don't know why your doctor hasn't insisted on this. If you choose to stay at home you must get adequate fluids, electrolytes, protein, and carbs so you can sustain yourself. I personally would be on a total liquid diet and/or low residue diet to give your intestines a chance to rest a bit.

I can't read through this entire thread again to see what everyone else has told you to eat or do, (my GI told me to stay away from specifically cabbage, broccoli and anything else "scrappy") but if I were in your situation I would only eat farina with a little honey, tea, clear juices like a filtered apple juice or white grape, white bread, limiting all fats except a little extra virgin olive oil, no fruit no veggies.. not even mushy ones.. maybe just white potatoes cooked plainly and no skins, nuts, seeds, of any sort. If you can tolerate plain chicken breast or organic tofu that might be ok but I think you should try bowel rest first to calm all the D you have. Depending on how you feel, drinking the water used to make white rice before it has all soaked in can help sometimes. If you can tolerate a really good organic yogurt PLAIN with several live strains of probiotics I would try that as well. Ultimately, if there is no food in there to move along, sometimes that bowels will stop contracting which is causing you to go.

You are also on sooo much medicine. I say that because I am as well (most of mine is for other stuff tho) aside from the Pentasa most of mine are late at night. I think I already mentioned to you that 4gm is the standard dose for Pentasa.. and correct me if I am wrong but you are on half that?? I think that if you went to 4 and started on the Entocort you would feel better. Why do you have to wait to start that??

Also I think it would help if you had a signature where you could list all the meds you are taking and other info.. just a suggestion
NY VEGGIE
Posted 11/4/2011 12:18 PM (GMT 0)
NCOT, Tsito and NY Veggie, thank you for your replies and pieces of advice.

Sorry, I could not get to you earlier as the last couple of days were really hectic. I had a lot of work and family commitments.

Well, the first two scopes I had showed mild infectious ileo-colitis. The most important thing in the two times, I had a lot of neutrophils and not lymphocytes (I was told that to be diagnosed as an IBD patient I should have lymphocytes). I also had hyperplasia which indicated a type of inflammation. This was in the period from 2007-2011. Throughout these years, I had a lot of flare ups with high fever and was normally put on antibiotics. Pentasa 4g was another line of medication for 1 1/2 years. Then, I had a new flare and it was decided that I should stop Pentasa. I stayed free from Pentasa for 6 months but not free from disease and I was not feeling well. It was until September 2010, when I started severe diarrheal bouts that lasted for 2 weeks. It was only then that I started pred 40 mg and it put my symptoms under control. However, I had elevated WBC without a known reason. They kept being elevated for 6 months despite taking all types of antibiotics and undergoing a lot of tests. In March 2011, I started complaining from rectal pain and discharge, I saw a surgeon who performed a proctoscope and decided I had proctitis. Accordingly, I was put on Pentasa enema and metronidazole suppositories for 10 days and symptoms subsided.

In April 2011, I tapered pred to 2.5 mg, had a severe flare up, low blood pressure and had to be hospitalized. At hospital, they found that my neutrophils count ( the first soldier in the WBC army) is elevated 92%. They called my doc and he put me on IV antibiotic for two weeks which finally could bring my neutrophil count to its normal. Afterwards, I sought a second opinion and I was told I had UC since I have proctitis but I was not convinced. So, I returned to my original doc who suggested to stop Azathioprine and Imuran after 7 months in a failing attempt to withdraw pred. The new med was intended to be MTX. Many of my friends warned me against it so I was reluctant and sought a third opinion.

This time I was told to undergo an enteroscope to see if there was anything hiding in the intestines. I also had a proctosigmoidoscopy. The biopsies showed enteritis all over the jejunum, ileum and terminal ileum and no Crohn's but the rectum was red and inflammed and the biopsies revealed chronic proctitis. However, this proctitis was never diagnosed as either UC or CD. Unfortunately, the third doc told me that this was IBS (and that I should not be offended by this diagnosis - it simply means that my colon lost its normal functionality), gave me antispasmodics and probiotics and stressed that I should wean off steriods. I kept being fine for 2 weeks and then things deteriorated and I returned to my original doc and was put on MTX along with the other drugs.

As has been suggested, my doc kept all the time telling me that I have IBS, and we had many quarrels regarding this and then he changed his mind and told me that I have both. He keeps telling me that the disease should emerge and come to the surface within 10 years. The first manifestation was that of the chronic proctitis March 2011 although I lived all my life suffering from severe anal fissures and the surgeons only gave me soothing creams. We will wait and see.

But he is telling me now that I have inflammations which he did not disclose what type they are. Next week, I'll do a bunch of tests to see how things are going on.

Thank you again and it's highly appreciated.

Take care!
________________________
Current meds:
Pred (7.5 mg, can't go lower), Pentasa 2g, Enema cort (before bedtime), Methotrexate im inj 25mg/week, Nexium 80, (Cipro 750, Cipro 500, Metronidazole suppositories, Tavanic, Orindazole these all failed), antiprotozoal, Zofran im inj/12 hrs, anti-ulcers drug, folic acid,and multivitamins.
Imuran and Azathioprine failed
No veggies or fruits – can't tolerate except potato.
No probiotics - can't tolerate.
Posted 11/4/2011 12:24 PM (GMT 0)
BabeInTheWoods,
Sorry for not thanking you. Thank you for taking the effort to read the thread and post replies. I really appreciate it and I really like this forum very much.
Take care!
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