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Crohn's Disease Forum » Treatment » Prednisone/Entocort » Prednisone not enough?


 
11-19-2008, 03:35 PM   #61
Colt
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Yeah, I've certainly noticed a different type of pain while on higher doses of prednisone than without the prednisone. I'm not sure yet if that's a matter of stricture pain or IBS pain though. Everything's just waiting on that pill cam. BTW, I might get a hold of the images from my pill cam and post them if they're interesting. It would cost me about $20 though.
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Meds: Prednisone, Pentasa, Vitamin D & Calcium, Atenalol, Darvocet

Current Issues: Crohn's inflammation primarily of the upper GI (duodenum and up), Tachycardia, Osteoporosis

Current Stage of Grief: Anger
11-19-2008, 04:56 PM   #62
soupdragon69
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Time will tell on the results front as to which avenue or even perhaps both needing to be taken...

Keep us posted and keep trying to describe the pain in depth. Recently after many months thinking the only way I could describe the bone pain I have was to say to my GP that it felt as though someone was sinking their fingers into my forearm and leaving deep imprints there that took hours to go away. Like when you have pitting oedema and leave finger marks? Its a horrible sensation. The other feeling I get bone pain wise is like when you knock your ankle accidentally against metal and you feel sick.

See what I mean? These describe my depth of bone pain well for me.

Have a think about your GI pain at different times in relation to your calendar etc and see what you come up with. You know as well as I do the more specific and descriptive you can be the better they get a handle on things and actually listen!
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Brittle asthma 1996, Hypothyroidism 1998, Severe Crohns ileitis 2006 , Severe IBS 2007, Inflammatory/Rheumatoid Arthritis 2008, Sebhorreic Eczema and Folliculitis 1992, Roseca, steroid induced acne and Hidradenitis Suppurativa 2008, Multiple allergies and food intolerances diagnosed from 2003. Newly diagnosed fibromyalgia Dec 2009. Newly diagnosed calcific tendonitis Jan 2010. Chronic Pain diagnosed Dec 2010.
11-19-2008, 05:35 PM   #63
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hi colt,

have been reading all your threads and posts, i hope you get some answers soon and hope you feel better soon,

sheila
11-20-2008, 08:22 PM   #64
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Thanks. Pill cam tomorrow. I'm physically wrecked at this point. Not really from the crohn's, just the extreme physical exhaustion of running up and down 7 floors worth of stairs for 8 hours straight with no food or water. Then I have to get up with 6 hours of sleep and do it again tomorrow with the pill cam belt on me adding some more weight.
11-24-2008, 04:41 PM   #65
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No sign of pill cam yet. Hopefully I just passed and didn't notice it. I'll have to wait a while for the results since someone has to go through a few thousand pictures. I'll poke in on medical records on Wednesday and see if they're in (probably not). If not I'll have to wait and try again next Monday.
11-24-2008, 05:08 PM   #66
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hi colt,

how are you feeling? you must be so tired, especially with such a demanding job, i know the triedness is a real problem , iv seen my mum and sister for years trying to cope with this side of the condition, my mum was lucky as she never had to work, but I have seen my sister struggle with her jobs through the years, but she now is a medical secretary and is loving it, as for myself for the last few months since the symptoms started showing i have noticed my energy levels really dropping, I have worked for the last six years in dell as a production supervisor, 3x12hrs weekends and i notice lately that i am not able to do anything for about 2 days after as i am so tired, it is a demanding job aswell, looking after a team and on my feet all day, but anyway i really do hope you get some rest and that everything goes well for you with your latest test

sheila
11-24-2008, 07:27 PM   #67
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Well, my crohn's is doing pretty well. I'm having some issues like bad gas and some pain and discomfort but nothing near as bad as how I was this time last year. As for work..

Well, I filled in for half a shift on Sunday because my coworker called in for that shift. Then today I worked myself to exhaustion again. No breaks, just constant non-stop work. It looks like my remaining coworker for the floors (same one who called in for Sunday called in for Monday) is using up her sick leave before she quits. The night people who were left over did their people then decided to go on break (just before the end of their shift), come up, do 3 people for me, and then leave. I never got a break all day. Including the 30 minute unpaid break I'm supposedly entitled to. They had most of the night to goof off and relax.

I can't get my coworkers to take some of my load so that I don't wear myself out to the point that I go even slower and get even more overwhelmed as the day progresses. They just get their stuff done and then try to go on breaks. When I call and ask for help they usually give me the whole 'I need a break. I might come up when I'm done' line. What, I don't need one? Besides, by the time they finish their break it'll be time to start the next run so they'll just go do their run and leave me hanging.

Then they left without telling me and I was the only floor phlebotomist for the entire hospital; and it's a big hospital. No one came in to help until after 9 and then there was still only 2 of us. It takes a minimum of 3 people to get the work done as fast as it comes in and we are supposed to have 4.

Anyway, again, no time to get food and water. Just constantly running all over the place drawing one patient after the other and running up and down 7 floors worth of stairs with a heavy phlebotomy tray in hand and a heavy polyester lab coat on to make sure I get over-heated and sweat like a pig when I'm not too dehydrated to sweat. I can barely keep my tray stocked because I have no chance to go back to the clinic to get the supplies.

It's killing me and I can only see it getting worse as more and more people quit. We're into that snowball quitting effect. Every time someone quits everyone else has to work harder and someone else meets their threshold and quits and it gets harder and then someone else meets their threshold and quits, and so on. Add to that the idea that when their buddies quit they get bitter about it and decide that it's not worth working if their friend isn't there.

I'd explain to my supervisor that I'm beyond my physical capabilities and I'm eventually going to collapse and go tumbling down the stair well but frankly there's nothing more she can do than what she's already doing to get more people so I'll just keep my mouth shut and maintain my dignity.

The whole university is under a 'hiring freeze' and she's already managed to fight for an exception so that we can at least replace people as they quit. Of course the publicly announced hiring freeze is going to drastically cut the number of people who inquire about the positions in the first place. That, and it takes this hospital about a month to make it through the hiring process because of the thousand levels of middle management.

Last edited by Colt; 11-24-2008 at 07:37 PM.
11-25-2008, 12:19 AM   #68
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Just out of curiosity... how fast was you tapering schedule? I've been taking 40mg/day for a while now (plus a little screw-up by my gp where they said to continue taking entocort when they first put me on the prednisone) and i've just started to taper by 5mg/week. After three days at 35mg the pain came back just like before and I spent the better part of the weekend on the toilet (mostly solid with only a little D). It seems to have stabilized and now I have to drop by another 5mg and I'm a littel nervous. Does this sound like I'm dropping too fast? I'm still pretty new to all this as I just got diagnosed a couple months ago so any advice would be greatly appreciated.
11-25-2008, 09:42 AM   #69
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Colt that is awful what you have to put up with, I know excatly were you are coming from and i can only talk about my experiences, I have to look after about 40people, and Ican honestly tell you I would not let them run themselves into the ground like you are. I too have been running tight on headcount and it has been very hard on some of my people but I would never ever run them into the ground, because at the end of the day they are the backbone of my lines and if I dont look after them, I am only wasting my time, You should not be doing the work of 2 or 3 people especially with your condition, no wonder there is such a high turnover of staff. I would never ever stop my lads taking there break that they are entitled to, if the company do not see fit to give me the headcount then I will not double up on the workload on people, it is not fair, Now dont get me wrong i would ask an odd time if we were in a bad way for some of the guys to stay back or put in an extra bit of effort, BUT they would be compensated for this. Even though I worked with Dell for two and half years I was moved to a contractor for the company and I am still in Dell, but the pressure from being on a customer site is huge, especially in the climate we are in at the moment but one thing I wont comprimise on is my guys health, it is just not worth it, they have wifes,husbands, and children and I would never put them at risk. sorry for going on but this kind of thing you described just drives me mad. you should have a word with your supervisor and tell her/him how you feel, and if they are worth there salt they should make things easier for you. And PLEASE TAKE YOUR BREAKS, you are entitled to them and they are there for a reason, do you think if you end up in hospital, things will stop in work, they wont and what will you do then,

take it easy colt, and tell that boss some hometruths,

sheila
11-25-2008, 04:15 PM   #70
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There's nothing she can do about it. She's a good supervisor, she just has nothing left she can do to reduce the work load. The only way the work load would ever be reduced would be if people stopped getting sick and/or the doctors stopped ordering tests.

I work for a hospital. It's a consistent rule in health care that taking care of your employees is meaningless. The patients are the only thing that matters because they are more important and at greater risk. It doesn't matter if I collapse from exhaustion if what I was doing to become exhausted was treat all the other people who collapsed from exhaustion AND broke their legs in the process. If I take a break and someone doesn't get a test result in time to go into surgery and they end up dieing I'm the one who's going to be considered at fault.

Anyway, today was much better. We had 3 people for the floors this time instead of 2 and there was an unusually low number of tests. It's probably a lot of surgeries being postponed until after thanksgiving.

Now as for the prednisone taper that depends on in what way it would be too fast. If you're talking about too fast in regards to causing adrenal insufficiency then 5mg per week seems okay that dosage. If you're talking about control of symptoms then it's not a matter of too fast. Either 35mg is working to control your symptoms or it's not and you need to call your doctor's office and let them know that you've gotten worse since lowering the dose so that they can rethink where they want to go with your dosage.
11-26-2008, 04:27 PM   #71
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!&*Y)*&!#T&^#!^&#%^&(!&@$$#*!*)&#@&~!!!!!!



My pill cam came back negative. It's definitely IBS that's causing my problems right now. I never imagined I would ever be so royally pissed off to hear that my crohn's was in remission.
11-26-2008, 06:01 PM   #72
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Sorry Colt am really chuckling here...

Its just so ruddy typical isnt it! Murphys Law rides again - Smack!

There is a good website in the UK called the Gut Trust. Have a look at it. Helped me alot and also in relation to tying it in with my crohns aspects too.

Hang in there my friend things will come right.. ((hugs))
11-26-2008, 06:53 PM   #73
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I spent most of this afternoon blowing the heads (and some other body parts here and there) off of raiders and talon company mercs in fallout 3. That was quite therapeutic.

Anyway, I feel totally screwed. It does make sense in hindsight. I never really have had a full remission and this is probably why. Every time my crohn's goes into remission the IBS is still there making me think the crohn's isn't fully in remission. It also explains why the prednisone has made a massive difference but hasn't completely fixed me and caused my symptoms to settle into a different pattern. The obstruction issue probably was an impaction caused by the lack of peristalsis due to IBS and the fact that I got relief for a while once it was flushed out confirms it. It goes on.

But, as I was saying, I feel completely screwed like a cancer patient being told his cancer has spread. It's going to be an absolute nightmare treating these two together. We'll never know for sure which one is causing which problems when and so adjusting medications is just a complete gamble.

If we taper my prednisone because we think the crohn's is in remission and I get worse is it because my crohn's has come out of prednisone-remission or is my IBS just acting up more? Do you give up on the taper or do you increase the antispasmodics? I can't get a colonoscopy and a pill cam every time we want to adjust my medication.
11-26-2008, 06:58 PM   #74
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What about treatment for the IBS side? What have they done with you, SD? How have they worked out medications and dosages other than going by 'gut feelings?'
11-26-2008, 07:40 PM   #75
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Yep its a real tough nut to crack I gotta say - tryin to figure out which is which Colt....

Ummm lets see... I am on mebevrine 135mg, 20mins before meals, 3 times a day as an antispasmodic. The nurses also recommended peppermint tea as a natural anti spasmodic and it did help when things were really bad at times! Cant have it now from a salicylate (aspirin sensitive) perspective and my asthma (great aint it? rob peter to pay paul!) LOL

Ermmm what else.... Oh yeah I started an anti emetic - metoclopramide as it helps balance out transit time and aids absorption. Hows that??

Diet wise they say go for whatever you can tolerate fibre wise between the two needs... aim for soluble more...

Keep up high fluid intake - which I know you dont mister being the job yer in!! Slap slap!

Omit veggies like corn, peas etc for obvious reasons on the crohns front but also because they are indigestable and create more work..

One of the things that does irritate me is fried foods and especially FRIED EGGS. Can tolerate poached and occasionally scrambled but Fried? No way and it will set my IBS off every single stupid time..

I tried stopping my meds and boy did I notice the difference. Watch the gulping air when you eat or drink in a rush too (think work again is all I have to say!) - can have a massive impact.

I do find if I eat bread my stools are more normally formed and easier to pass but it has to be white and only a couple of slices a day. Whereas normally they would advocate brown for the fibre if you see what I mean. I think we just dont need the same "volume" of bulk.. Does that make sense?

I also find the pains I get are in different areas as I said before in a post and I can generally work out the time span and what I have eaten, where the pain is and what gas etc I have - with IBS I have HUGE rumbling gas that seems to roll around forever inside and especially down my left side. It sort of POPS as it rolls around - sounds daft I know lol

Any of this make sense or sound familiar?

On the pred front it might be a case of winding right back and relearning to listen to your body Colt. Could be a rough ride and will drive you crackers but worth it in the long run now you have the reassurance its not the Crohns.

The other thing I would say is yes I was told I had severe IBS last summer on top of my crohns to the extent the reg said if it hadnt been for my first pics and scope he said he would have told me I didnt have crohns!

HOWEVER, in recent weeks it has been discovered my Vit D levels are extremely low - now interesting point here....

Through research I discovered that there is a huge link between ongoing inflammation and poor quality of life with low Vit D levels with crohns patients. Yet supposedly my gut is healed according to the last TWO scopes I had. Comprende?

I got it confirmed via my gastro nurse in the last week and they are topping me up with IM injections now. And there is talk now of checking my other fat soluble vits (am probably going to be admitted to gastro ward tomorrow) amongst other things.

So is it any wonder our guts play havoc when everyone else says "oh I have looked and poked and biopsied and everything is fine and dandy" yet yer tum is yelling it aint happy?

Just thought I would throw that into the ring...

Will try and post when I am in hospital but wont be able to take my comp and the internet will be several floors down from me so depends if I get to escape occasionally! lol

If I think of anything else will post ok?

Last edited by soupdragon69; 11-27-2008 at 12:56 AM.
11-26-2008, 09:17 PM   #76
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Yeah, thank you very much. It does sound extremely familiar. How well do the anti-spamodics work for you? I know it makes it better, but how close to all better? One of the things that upsets me with the IBS diagnosis is that crohn's can be put into remission. I always had a chance however small of being a perfectly healthy person sometimes. With IBS I don't think I'll ever be fully healthy for the rest of my life.

I've been eating and drinking well the last couple of days as they were a lot better than Friday and Monday which were absolute hell. At work I had a tuna salad wrap for breakfast, and then breaded fish with rice and mashed potatoes for lunch. I drank probably 40 ounces too.

We've been suspecting mild-moderate IBS for my wife for a while now too and that egg comment really hit the spot for her. It was kind of confounding us that she reacts to eggs like she dose lactose (she's intolerant of that) but unlike with lactose it's not a problem as an ingredient in something, it's just if she eats a fried egg or an omelet, or something along those lines.

Our hospital has a wireless connection for our patients. Those that have laptops have it pretty nice. We use the wireless to do our jobs too. We carry around these obnoxious PDAs and stuff to do all our work on. Hopefully they let you go down to the computers sometimes. I don't know what I'd do without my fix while in the hospital. Probably try to dictate forum posts to the nurse. Good luck in there.
11-27-2008, 12:28 AM   #77
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The anti spasmodics work very well for me and as long as I take them and remember to take them before meals I find my digestion on that front works pretty well I have to say.. as I said really do notice the difference when I dont! But it must be in tandem with diet too to prevent further trigger if that makes sense? Bit of a tightrope to walk for a while til you get it sorted but trust me it works well on both fronts so dont let it get you down - it is much more managable than you think Colt!

Yeah eggs definately in omelette and fried format stuff me.

Some recommend barley as it soothes the gut and also if you suffer from wind and bloating that increasing your Oat intake will help too. You need to think about how you manage/balance both of those on the crohns front and whether they affect you in that way Colt but I can tolerate a small amount of oats like porridge maybe 3 times a week and my stools are good then too.

Ummmm.... the ususal ones of no processed or believe it or not RE-COOKED foods can impact because they apparently work up what is known as resistent starch that is tough for the gut to deal with...

Stuff like fizzy drinks, sorbitol, caffeine - the usual culprits - see the similarites between the two conditions food wise now?

I also know the Gut Trust here in the UK recommend THREE portions of fruit a day NOT five.

And the usual drink a couple of litres of water a day spiel.

Its really a case of working out what works for you and as I said relearning to listen to your body Colt. Tying in what you know your body can tolerate on the fibre side for crohns with what you need for IBS.

The other big one that has a massive impact on me is TOMATOES! I can manage something like baked beans occasionally but dont ask me to eat fresh in salad or tinned or as part of a casserole and worse if it is combined with cheese on the fat side! DRASTIC CONSEQUENCES THERE TRUST ME LOL Yet I can tolerate say a grilled tomato as part of a meal. Salad in general with cucumber or fresh peppers will knock my gut off too. Yet I can tolerate lettuce and some grated carrot. With salad I just bloat and fill with wind in nothing flat and feel really rough. Yet others can tolerate it.

Dont miss meals or leave long gaps between eating either as it leaves huge opportunity to build up gas and encourages cramping!

Massage is something that alot of places recommend too to help the tum relax and be less tense and overall helps you unwind. Excercise can help but you need to feel up to it and work gently so you dont tense up etc.

So dont dispair Colt ok? It is managable and it will bring you relief too. The above are what I have found impacts and works for me for different reasons as you will have seen. Hope my ramblings help in some way to getting your head round things and having an idea where to start...

Get onto the antispasmodic - keep in mind it can take a while to help AND might take you a little time to find one that works for you! Try sipping the peppermint tea when you feel things building - its surprising.

Have a look and see if there are any other foods that you think have an impact as I suggested above. Something might well leap out at you and you could be surprised..

Things will improve Colt and YOU can have a massive impact on that remember that! Hope your wife feels better too.

And yeah I have had about 4hrs sleep and up again between pred and pain etc - roll on later in the day and they start to sort me out. Will miss everyone here but it has to be done as I have too many irons in the fire and am drained.

Will be around when I can.

Thinking of you both ((hugs))

Last edited by soupdragon69; 11-27-2008 at 12:37 AM.
11-27-2008, 12:39 AM   #78
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Argh... drat! I wrote a reply but it got lost in cyber space. Think Soup said most of what I was gonna say anyway thanks to her hyper-pred-posting mode LOL!

As I said before, the docs are pretty sure that part of my symptoms are down to IBS as well. I am on Colese which I looked up and it's the same as what Jan is on, and Motilum which is an anti-sick pill that 'pushes' food through your system. My guts are very slow to empty which is why I am having so much fun with trying to get the damn barium contrast to pass thru atm.

I think the meds do help with that rumbling, bubbling sort of pain that travels up and down my stomach like a demented snake - your description didn't sound daft at all Jan! I'm still trying to figure out what pain is caused by what condition though. I think the Crohn's pain is more in one place and constant, although it gets to me more at times than others.

I understand what you mean about the IBS diagnoses, but dont despair Colt. IBS can be manageable once you work out your triggers. It certainly helped me even though I still had symptoms from the undiagnosed Crohns. It is hard that some docs dont take IBS as seriously when it can cause just as many problems though.

Trigger wise, I am much the same as you Jan. Fried, fatty foods are OUT. Eggs are a problem for me too... I can eat egg whites, but find the yolks harder. If I make an omlette I make it with 1 yolk and 3 whites. Not much nutrition in them, but at least it is something I can eat. I can't eat bread or dairy as I am intolerant.

You'll get there Colt. I know it's hard not to have an easy answer, but at least you aren't facing surgery etc.

Jan, I hope you can make it down to the computers... I'm gonna miss your posts! Remember that we are all thinking of you OK? Main thing is to rest up and get better.

Which is what I'm gonna do right now .... (says Cookie, yawning!).
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12-01-2008, 12:10 AM   #79
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Hey Colt,

Hows things going now for you and your wife??

If you have seen my post on the never rains but pours thread you will know I was told it was IBS by a gastro cons who has never met me before last friday! Talk about frustrated!! I dont know who was worse him or me at the end of the conversation LOL

Anyway, I have my scope on Tues and do my prep for it today - oh joy. So will see my gastro cons tues and my GP later in the week I think when I have more info.

Funny how if it was IBS my gut responded to all the pred and antibiotics isnt it?? Flipping doctors lol

Anyway, was thinking of you whilst in and wondering how you were doing.
12-02-2008, 10:38 AM   #80
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Relationship-wise things have improved greatly. My wife's frustrations have more appropriately moved to her mother. She still won't stand up to her but at least now when when I'm at work and my mother-in-law gives my son a french-fry right after being told not to my wife isn't angry at me for it.

Yeah, hopefully my GIs won't start ignoring the crohn's completely, though at this point I'm really looking forward to replacing some of my prednisone with an anti-spasmodic.

Health-wise I'm not too bad. Pain and a trip to the bathroom after any sizable meal and plenty of gas but not much else. My extra-intestinal things like my joint pain are doing great. Especially considering the physical exertion I put in during my 10 hour days sprinting up and down stairs and such.

So does everyone have terrible pain during the prep or is it just the taste and annoyance of the watery diarrhea?
12-02-2008, 10:42 AM   #81
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Sounds a little better Colt.
Gald you and your wife are doing better especially!
12-02-2008, 06:51 PM   #82
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Am really pleased things are on the upturn for you both as it just compounds the gut problems doesnt it for you both too?

Sounds like your gut it gradually sorting itself out and it could be something you could use as a "guide" in that you notice your joints etc improving so might be like me in that I only get specific pains in specific places if its my crohns. Does that make sense?

As for the pain and prep yeah I have pain during it and think its to do with the gut spasm and the IBS aspect.... because the lining of the gut is hypersensitive and find if I am in that mode then the scope can be painful too because of the air they introduce to see the gut well.

I suffered really badly today post scope with colic wind pains trapped up under my ribs and they were travelling up to my shoulders at times. Finally started to shift after about 3hrs and feeling much better this evening albeit "tender" tum wise and of course my poor wee bum is burnt off me despite using protector cream.. cest la vie eh?

Keep us posted. Thinking of you both..
12-02-2008, 09:46 PM   #83
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Sorry to hear that it was so uncomfortable. Were you able to take simethicone or anything for the gas?

I use an anesthetic cream for my bum. It does wonders. I carry it with me everywhere I go in my backpack with all my other drugs and survival gear. It has lidocaine in it I think. I'm not 100% sure but it is a caine drug which I usually don't respond strongly to but it still works pretty well. I'd check but it's in the car and it's rather cold outside right now. Regardless, it was over the counter here which means it almost certainly is in the UK.
12-03-2008, 02:28 AM   #84
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Good thought Colt - if I had a brain I would be dangerous some days! LOL

Am going to start doing that. My poor bum didnt know what hit it this time..

I have suffered from really bad colic since I was 11yrs old so have my routine down pat for it. All I want to do is curl up with the pain but that only traps it until I end up vomiting as it moves the other way so I make myself move around and stay upright and was also told to drink water with some sugar in it believe it or not by a doc years ago that I find really helps - similar action to gripe water for babies I believe.

Still have some residual pain this morning but better overall...

Thanks for the thoughts - as I said am gonna do that now!
12-09-2008, 06:31 PM   #85
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I had an appointment with my GIs today. Well, not really. I just saw the nurse practitioner. First time too so she didn't really know anything about my case. Anyway, apparently my GI and the NPC have decided I probably don't have crohn's at all and that they'll just get rid of the prednisone as soon as they can and treat me for IBS.

Of course it's silly but I'm going along with it because I want to get off the prednisone and let my crohn's act up again so that they can see it not in prednisone-induced remission and figure out what kind of maintainence therapy to do. I'll give it about a 90% chance that not far down my joint pain will nail me again. I'm not looking forward to getting sick but I am interested to see what the crohn's will be like without the IBS.

For IBS they gave me Elavil 10mg once daily and then Bentyl PRN for pain. I took the Bentyl tonight but I'm still hurting. Maybe not as much as I would be otherwise. We'll see over time. I'm supposed to drop 5mg of prednisone each week too. Oh, and I had a Complete Metabolic Panel and a Thyroid Panel drawn to see if there's another cause for the constipation.

I'm not really appreciating having all my past problems ignored. I probably don't have crohn's disease but I've got horrible joint pain, rash, numerous mouth ulcers, rectal bleeding, and pain in a different location when I'm not on the prednisone. Oh, well. Like I said, I need to get off the prednisone and have them take a look at it while it's active to be able to treat it anyway. No scar tissue means I've got the intestines to spare for it too. I just hope I can function at work if my joint pain gets as bad as it was.

Last edited by Colt; 12-09-2008 at 06:37 PM.
12-12-2008, 06:33 PM   #86
Colt
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I got some more of my medical records including my new blood test results. The Complete Metabolic Panel showed everything was normal except that my glucose was high (damn you prednisone!!!!), and my anion gap was low (WTF!?). Considering everything else was fine my choices are cancer or lab error. Probably a 0.03% chance lab error but I'd like to have it drawn again to make sure. Of course no one bothered to call me about either of the abnormal results. Knowing that I need to watch my diet because I'm borderline diabetic would have been nice. The GIs didn't even want to bother doing the CMP. I just talked the nurse practitioner into it and I'm glad I did.

As for the new set of clinic notes I got I was right. The moment my colonoscopy came back negative they decided that I did not have crohn's disease and that I had IBS instead. They ignored the obvious answer which is that I have prednisone induced crohn's remission AND active IBS. They even put in some BS comment about how I agreed that I might not really have crohn's disease. Again, confusing steroid-induced remission with not having the disease to begin with.
12-13-2008, 06:20 AM   #87
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Boy oh boy you and I are having de ja vue here Colt arent we? They just dont get the fact that they use steroids and antibiotics to treat the flare and make it better and connect that with normal scope results do they?

Is it really that difficult a connection to make or am I just being very irish here?

Thats why I did that letter for my GI and will be interested to hear what he has to say about it all in the new year. Will keep you posted.

As for the blood results its like with my Vit D levels being low - they knew in AUGUST but didnt tell me til OCTOBER in clinic! They also assumed that I wasnt on supplements and said I needed to take calcichew or adcal daily which is calcium with Vit D added to aid absorption and the registrars jaw hit the floor when I pointed out to her that I had been on the ruddy things since summer 2007! Funnily enough thats when I had the IM injection within a couple of days of being in clinic!

There are some days I would love them to experience what we go through on a bad day for 24hrs and ask them how they feel now! Grrrrr

Hang in there - and keep harrassing them! Thinking of you.
12-14-2008, 02:47 PM   #88
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I'm curious to see how it goes for you trying to talk sense into them so I can get an impression of how much I should bother trying to do so with my team.

I think they expect massive scar tissue to be present if you've ever had crohn's disease. I was quite pleased to know that they didn't see any strictures or scar tissue but at the same time my traditional problem has been considered terrible inflammation and not terrible ulceration and fistulas.

Hell, the first time I went through all this I was so inflammed my anus swelled to the point that it was visibly puckering out. My ESR and white counts were consistantly really high, etc (I think I remember it being at 17 when I was 16 or 17 years old). My was GI complained that he could barely see anything due to the inflammation in my colon during my colonoscopy and that was during a relatively good period. Biopsies came back negative for ulceration during all of that too.

I think doctors can't get over variation in the severity of crohn's disease in large part. Even the GIs can't wrap their heads around the idea that one patient can have one fistula after another and need half their intestines removed, and then another patient can have inflammation and a lot of extra-intestinal issues like joint pain and mouth ulcers/anal fissures... yet it's the same disease.

Hell, if they're dismissing crohn's disease why am I not getting reccomended for rheumatoid arthritis screening? If it's not crohn's disease causing it it's clearly some other autoimmune issue because anything over 30mg of prednisone knocks the joint pain on it's ass and it's global. They just ignore it other than a tiny comment stating that I said that it was much better and that that I think that it's associated with the crohn's disease.

It's frustrating. I'm generally satisfied with what they're doing medication wise. I did want to get off the prednisone and I did want to start the tricyclic antidepresant and anti-spasmotic but what worries me most is the joint pain which has consistantly come back and near disabling below 30mg of prednisone. I'll endure some bleeding, mouth ulcers, tender anus, and the abdominal pain left over after the IBS is taken out of the mix if it eventually lleads to a positive scope and a solid diagnosis that gets me good treatment in the long run. But, if I can't pick my son up and hold him for more than a minute or carry my phlebotomy tray I'm going to be pissed.
12-14-2008, 03:59 PM   #89
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Dont worry will keep you posted. Not sure yet when I will be seeing him as dont have the appointment through but I will be chasing it this week and am planning for January at some point hopefully!

Can relate to the high ESR as its the game I played in summer 07 when in for that 2.5wks.

I am very fortunate that my GP has said for some time that he is convinced I have an ongoing underlying inflammation that keeps flaring and whether its the crohns or something else triggering the crohns remains to be seen. My gastro did say when I first met him I could have a metabolic syndrome of some description and he might refer me on to someone who specialises in that kind of thing once my crohns was sorted. Problem is my crohns wont settle so whether its this causing it I dont know.

My Occupational Health Consultant said to me a few weeks ago that "somewhere along the line they are going to put a name to this collection of symptoms and problems you have". Time will tell eh?

I am surprised they havent looked at other causes on the autoimmune front with you. Thing is though, for me, that my Rheumatoid Factor was negative both times tested 3yrs apart yet Rheums say I have erosion on MRI at the base of my toes and also display rheumatoid like features.

This has been the bane of my life - blood test results that is! When my thyroid crashed the tests were always normal or borderline but was constantly told it was all in my head. In the end at that time I lost my house, my car and my job and mentally and physically ground to a halt. What finally gave it away was my liver function deteriorated and the consultant looked at me and said THYROID!

So you would think by now since that happened 10yrs ago Colt I would have got the hang of this by now eh? I still get frustrated over it all, still fight an uphill battle each time I see new docs but have to say now that I finally have definate "labels" they do tend to listen more.

Why should we PUT UP with things when we KNOW there is relief Colt? That is what keeps me going when the going gets tough.

We will both get there in the end.. will keep you posted as I said..
12-23-2008, 06:37 PM   #90
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Well, I'm not sure what's going on. My pain on the upper left side after eating is decreasing but it was decreasing just before I started the elavil too. I'm getting pains in my lower right side sometimes now and my pain isn't always right after a meal anymore. I went down to 25mg of prednisone today.

The constipation has let up and now I'm having diarrhea. Not too bad but it is getting worse. I've got a lot of mucus leaking out and coming out as diarrhea. I soiled myself with a gob of mucus today which was extremely humiliating when you consider I've never had that happen in my adult life.

That's just not been the kind of problem I have. It's always been constipation that I've dealt with. It was mixed blood and mucus on the 12th. I had mucus problems once when I was flaring really bad back when I was a teenager but since then I've rarely had any mucus let alone the huge amounts I'm having now. I'm starting to get like some of you sprinting to the bathroom to avoid crapping myself a few times every day.

Last edited by Colt; 12-23-2008 at 06:39 PM.
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