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


 
11-06-2008, 08:55 PM   #31
Colt
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Well, I'm not passing out but I've had to stop drinking the colyte. I've been having more and more nausea and pain and practically nothing has come out 2 hours after starting. I've getting spikes of 10 pain. It just keeps getting worse.
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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
11-06-2008, 09:58 PM   #32
Colt
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That was terrifying. I was sitting there thinking about just how stubborn I wanted to be and just how much I wanted to suffer through before I went to the ER. The finally two solid pieces that were quite painful to pass made it out and then came that reassuring rush of water. I'm so relieved that I can stop worrying about my intestines rupturing.
11-07-2008, 12:55 AM   #33
Colt
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I drank the whole gallon and everything and I presume I'm toward the end of the diarrhea. I seem to just be putting out flakes of mucus/tissue and dried blood at the moment, but what really seems strange to me is that it is intensely yellow fluid coming out. I realize it's bile but I remember with my last colonoscopy, and objectively I'm sure I should have washed out most of the bile by now. It should be clear but it's not. It looks like someone dumped a full bottle of yellow food dye in the toilet every time.
11-07-2008, 02:51 AM   #34
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Sounds like you had a plug there Colt doesnt it with how you passed the stool then had the rush of fluid after it?

Its possible with everything you have been through recently you will have "bits and pieces" being flushed through due to the rough ride your bowel has had. Does that make sense?

Not everyone will go clear every single time with the clearing out. Also perhaps your soda made an impact that you didnt realise it would on the bile/colouring front..

Really hope all goes well and you get some answers. NEVER be afraid of thinking you "might" have obstruction issues with this disease even if you dont!! The whole point of them doing these tests is to work out exactly what it is so you can have the right treatment.

My gastro cons was scratching his head because he cant understand why the remicade isnt helping me. I know by the time the scope comes round there will be practically no point doing it now. Why? Because I am on my elemental drinks which allow inflammation to die down, I am doing at least a week of pred because of my asthma, rheums have a plan to keep upping my methotrexate and I also think the reason the remicade wasnt helping because it wasnt at the right dose of 5mg/kg because my weight has rocketed with being on IM steroids via rheumatology for 12wks and gastro thinks I am carrying alot of fluid! So I dont think there will be any proof by the time we get there yet he KNOWS and accepts I am blatantly unwell.

To be honest I think we will stay on the same regime and the remicade will help as I drop the weight back or if he increases it...

My GP is great and worth his weight in gold Colt. If it wasnt for him I just dont think I would still be around.. The girls on reception if I have asthma problems and ring say "do you need to come now?" "do you need this morning or afternoon?" and "you now to come down straight away if you get worse or think you need to be seen immediately". One of them said yesterday on the phone "I am just going to juggle the appointment books so you can come and have your IM vit D injection in the morning". Another GP in the practice phoned dermatology when she saw the state of my skin and got me an urgent appointment within 2hrs. There is her and another male GP I will go to if my usual GP isnt there and all 3 of them listen to me and will put me off work the minute they think I need it as I hate being off and they know I only go to them when I have tried everything else and am not coping with whatever the problem is. Hence my GP has said I wont be back at work til after my scope on 2nd Dec. They are all so very good to me and I have no intentions of leaving ever!!! Funny that!
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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.

Last edited by soupdragon69; 11-07-2008 at 02:56 AM.
11-07-2008, 05:43 AM   #35
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Well I am just back from GP yet again. He has given me the IM injection of Vitamin D.

Had another asthma attack this morning (quite bad) in relation to the shower. Just seem to be hypersensitive with everything at the minute. GP has increased my pred from 40mg to 60mg for next few days. I am to go into hospital over the weekend if I get worse and he made me promise I would! So if I go quiet guys you know where I am!! I know I know unusual for the ele mental leprechaun to be quiet - I hear ya!!

Has also given me Augmentin/Co-amoxiclave antibiotics at max strength of 2 tabs 3 times a day. As thinks I am infected but not sure if its guts or chest so is covering both. High temp and clammy too so guess that says it all eh?

Am shaking from head to toe and totally wiped out at the minute so going back to my pjs and bed me finks. Cant really stand well either with shaking and feeling so weak.

If nothing else everything should kick in in the next 48hrs (usually does) and I know I just have to rest - body wont let me do much else. Another plus I guess is my guts will settle with all the meds I am now on lol Flipping typical aint it!

Hope you got on ok Colt. Have been thinking of you.

Last edited by soupdragon69; 11-07-2008 at 05:45 AM.
11-07-2008, 06:19 AM   #36
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Good luck with all the meds. It sounds like you're pretty bad off at the moment.

I'm leaving for the scope in about 30 minutes.
11-07-2008, 06:34 AM   #37
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Good luck Colt, we'll be thinking of you while you're in.
11-07-2008, 11:15 AM   #38
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It went fine. Too fine. They found nothing. Just put me out of my misery now.
11-07-2008, 11:32 AM   #39
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Colt dont feel bad about this!!

Have they done biopsies? You could have something macroscopic going on like they think with me!

Dont forget you have also been on pred and it decreases inflammation too!

I know you were thinking of a stricture but it may not be as easy as that. You know how elusive crohns can be. Hang in there...

Dont let this beat you into a corner Colt!

I am feeling a bit better this evening. Slept for a few hours and Duncan is going to have me at his for the weekend so at least I wont be looking at 4 walls here (I live in one room with shared facilities in hospital staff accomodation).

Think my GP has caught things in time but the weekend will tell the story. Just need to behave and rest lots!

Still thinking of you Colt. You will get sorted yet dont worry about this!
11-07-2008, 01:05 PM   #40
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After 8 years there still should have been scarring even if I was perfectly healthy now. No scars says there's been nothing wrong all along. There were biopsies but chances are pretty good they'll be negative too.

We're going to do a pill cam to check the small intestine. In the past I've always thought it was more small intestine than large. Maybe we'll confirm that. Probably not. Somehow I have all these very physical problems and yet they're not physically detectable. Sounds impossible.
11-07-2008, 09:45 PM   #41
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I'm pretty well settled that I've got crohn's disease. Nothing else accounts for the symptoms and disease pattern and I've certainly proven inflamed intestines in the past. This just really frightens me because it means I could lose credibility with my brand new GI who doesn't know me and hasn't seen my symptoms over the years.
11-07-2008, 10:26 PM   #42
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I can understand why you feel as you do Colt.

My thoughts in relation to your new GI are if he is worth his weight in salt he will explore all avenues so dont let the fear set in. Work out what other options you may have exploration wise and go back with the perspective of "right what else can we do to sort me out cause I aint continuing to live like this!"

Have you ever had a bile salts test or gastric emptying or hydrogen breath test? Perhaps options to be looked at in conjunction with the pill cam.

It was the bile salts test that flagged things up to my GI cons that I had crohns and he went looking for it in detail then.

Am just thinking off the top of my head as usual here Colt to try and throw some more ideas your way. Think you know what I am like by now.

As you can see its gone 3am. I have been up since midnight with the joys of insomnia and pred. It usually kicks in around 48-72 hours. Asthma is still really sensitive but better than it was. Stomach is really sore and only tolerating small amounts of things. Even tea hurts at the minute.

Cant cope with elemental right now as I need to get more calcium on board after having my Vit D injection yesterday. I go for methotrexate blood tests this monday and hoping by then to be well on the upturn. If 60mg pred doesnt sort me out I know the chances are high I will end up admitted to hospital as this is what happened when I was diagnosed originally. I was on 60mg pred for my asthma and was running to the loo 12-14 times a day. Its slowed down alot because I am barely eating in the last week and am on painkillers that slow down gut function too.

Will get sorted in the end. Its just such a pain in proverbial that my crohns triggers everything else off. The gastro, rheums, asthma and derms consultants all say along with my GP I have a constant cycle of inflammation once it starts and they need to figure out a way to dampen it down and control things better.

I dont know what the outcome will or what direction it will take but time will tell eh?


One of the things I find Colt is it can be like peeling the layers of an onion when you are dealing with ongoing long term chronic health problems. It wears you down to the core and yet you have to find the energy and emotional stamina to pick yourself mentally up off the floor each time and start the long climb again. The reason I am telling you more about my health situation is so you know a bit more about me and why I understand the feelings you are going through.

Hang in there my friend you will get there. Keep posting. Stay in touch ok?

Last edited by soupdragon69; 11-07-2008 at 10:30 PM.
11-07-2008, 10:38 PM   #43
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Yeah. I know I shouldn't, but honestly I feel kind of jealous. You've got your stuff set in stone. There's no doubt that you're going to get treatment and you know what you're dealing with even if it is horrible. The unknown and the could be is driving me mad. I'm down to my last chance with the pill cam. Well, maybe it should be called my 2nd to last. They're going to have me take a 'barium pill' to check me for small intestinal strictures first so I don't end up with a pill cam stuck in me. That seemed like a real risk 24 hours ago.

Anyway, how likely is it that I wouldn't be scarred to hell after 8 years, 6 without significant treatment? Crohn's of just the small intestine is relatively rare. It seems highly unlikely that I could have a perfectly clean large intestine and ileum and still have crohn's disease. Theoretically it's possible, but even then I should have malnutrition and weight loss problems which I don't.

Prednisone and my own observations of very little ulceration could account for no ulcers so that's not heart breaking, but no scars?

Last edited by Colt; 11-07-2008 at 11:45 PM.
11-07-2008, 11:51 PM   #44
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I wouldnt rule out the small bowel crohns or anywhere else Colt because you dont have scars.

When I had a scope last summer (July 07) in hospital it was done by registrar on a different team because my own GI was on hols. It was agony and he was very rough and I was in alot of pain afterwards too. He told me later he took something like over 20 biopsies and they all came back negative and if he hadnt seen my original pics from Dec 5th 06 he would have told me I had IBS and definately NOT crohns. Yet I was still in hospital with a flare on antibiotics and steroids and elemental and wiped out! So explain THAT one!

My last scope in August was clear again. And I now think the one on Dec 2nd will be clear too because I am on 60mg pred, high dose Augmentin and some elemental. So I cant win because yet again there will be no proof of this supposed macroscopic inflammation I have in my gut!!! Its ruddy frustating!!

Its also taken me from my teens especially to finally get diagnosis of my health problems in the last 10yrs most of which has come in the last 2.5yrs. Its taken alot of despair and frustration Colt and I soooooooo know why you feel as you do on this one.

So on the scaring front dont take it as read. My original scope showed severe ulceration yet it had disappeared totally in 6mths flat with remicade, imuran and elemental at different stages.

There are thoughts now though that I am having stomach and throat problems because my food and tablets get stuck at least once a day and its like I have swallowed hard then it eases again. I am getting small mouth and gum ulcers too in recent months so time will tell again.

So yes I have some things set in stone but others are still a way to go and its exasperating to think "here we go again". But now after all these years have found a marvelous GP and know how lucky I am to have him.

Hang in there Colt, you will get answers!

Thinking of you.
11-08-2008, 12:13 AM   #45
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I'm starting to feel a lot better after hearing you and doing some of my own research on the likelihood of that colonoscopy being negative.

http://www.patient.co.uk/showdoc/23068969/

That site says 3 in 10 cases are small-bowel only compared to only 2 in that 10 that are large bowel only. I was under the impression it was more like 1 and 4. I knew about half have it in both.

Combine that with the study I found that took patients who had been confirmed to have crohn's disease previously and did a colonoscopy and pill cam and the colonoscopy only found crohn's in 25% of them. The pill cam got 62%. Those are the same patients too.

I already knew I was doing pretty well in ulcer land and my concern now that my prednisone is doing its job is strictures which are far more likely to occur in the small intestine anyway. I'm not as confident as I was last night but at least I think I can go to bed now.

Thank you.
11-08-2008, 12:16 AM   #46
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No probs Colt. Glad to help in any way I can as I have said.

Keep posting and hunting for answers. You know where I am and the others too!
11-08-2008, 06:28 AM   #47
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Hi Colt,

I read this last night, but was too tired to answer then. I found it real interesting because I have had similar probs to you with the blockages. I even ended up having a laparatomy because I got such bad pain last year, but at the time they only found endometriosis and thought that was it.

After I finally got a colonoscopy where they could see my bowels from the inside, they found out that my colon is much longer than usual (not a bad thing for someone with crohn's to have in many ways I guess). Together with it being in bad condition with poor muscle tone, it sometimes twists on itself and causes blockages. So I can take all the laxatives I like and nothing happens except I feel sicker and more bloated. Then finally it untwists and whooosh!

I have this happen about 6-8 times a year, although I've had two episodes so far in the past month. Thankfully they have all come good and my bowel has untwisted on its own so far.

I am wondering if this might be happening with you?

It sounds like you've had a really rough time. I had a huge battle to get anyone to listen to me too and I still get worried about not being taken seriously. After the laparotomy last year, I was still in a lot of pain and the docs just ended up saying I didn't cope well with pain because of my history of mental health probs. I got out of hospital, only to collapse a week later with a abscess on my liver! Nice one, eh?

Its not that I want to be sick, but I do want to know what is wrong and know how to treat it. It is so hard when you know something is wrong and no-one seems to listen to you.

I've been told that Crohn's of the small bowel is the hardest to diagnose, especially in cases like mine where the docs can't see much because of the extra length and twists and turns etc.

I don't know if this helps, but I wanted to reply and say I hope things get better for you soon.

Cookie
11-08-2008, 10:58 AM   #48
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I've had 2 colonoscopies so far so it's unlikely that would have gone unnoticed. The first one was with the objective of measuring the size of my ileum and other potential birth defects so the GI was looking out for things like that. I've got pretty high hopes for the pill cam at this point.
11-12-2008, 08:13 AM   #49
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At this point things are pretty consistant. Roughly 30 minutes after I eat I get a stab of pain on the left side of my gut and if I eat a large meal I have visible and feelable distension. It seems to have gotten more consistant since that colonoscopy prep. Before it was dragged out more and never really went away. Now it hits really hard, I have to take a darvocet, and then after a while depending on the size of my meal it goes away. Then the next time I eat the same story over and over.

Last edited by Colt; 11-12-2008 at 08:15 AM.
11-12-2008, 08:18 AM   #50
soupdragon69
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So what are you thinking is going on Colt??

Do you think its possible you have severe IBS with gut spasm on top of your crohns?

I was up the walls last summer with both when in hospital and it took some considerable time to work out what was what.

Keep us posted.
11-12-2008, 04:28 PM   #51
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It seems really obvious to me that it's a small intestinal stricture. The food hits the stricture, distends the area above the stricture causing the visible swelling and the pain and then flows through like a full funnel deflating the distended area as it empties.

The prep did something though. I'm not getting the dry rabbit pellets anymore. I don't think I'm obstructed with dried out old food now. Maybe the prep got me cleared out so that I can start fresh and I'll get back to rabbit pellets when the stemmed flow has slowed it enough that it starts getting hard again, and/or it gave me a good stretch and so now the stricture is more accommodating to the food matter much like stretching it with a balloon instead of always forcing the food into the size of the stricture.

Maybe it's not obvious though and I'm just getting hypochondriac with the stricture thing and reading too much into it.
11-12-2008, 04:48 PM   #52
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Time will tell as you work your way through the enevitable tests.

Hang in there!
11-16-2008, 05:04 PM   #53
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Same story. I get sick every time I eat. My stools look decent now but I get pain, distension, nausea, and reflux every time I eat a significant meal. My patency study (barium pill) is tomorrow at 7. I'll be working that morning so hopefully I can get through my work fast enough to be there on time.
11-17-2008, 07:06 PM   #54
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I took my barium pill. They make it to be identical to the pill cam in size and shape. It's pretty neat. Anyway, it's a big pill and takes some effort to swallow but it did go down. It hurt really bad as it moved through but I think it's through the bad parts and I'm safe. It's not completely out yet though so I will have to wait for the x-ray tomorrow morning to make sure.
11-18-2008, 04:24 PM   #55
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I had my GI appointment. The GI thinks that if the pill cam comes back okay that I've probably got irritable bowel on top of the crohn's.
11-18-2008, 04:28 PM   #56
soupdragon69
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Ooooh anyone hear an echo around here from a couple of posts back??? lol

Welcome to the club if you do Colt! ;-)

Very very hard to work out what is what some days and yes it does drive me crackers so will probably you too!

Keep us posted on the pill cam results....
11-18-2008, 06:30 PM   #57
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Congrats, you're as smart as a GI. Maybe you can use this when you apply for a promotion.

The thing is that IBS was ruled out way back because of the level of pain, the bleeding, the inflammation, etc. Once you take out the crohn's disease symptoms there's not much left to point to IBS. But now because my clearly crohn's disease symptoms seem to be all but gone like my joint pain and bleeding we're in a situation where I'm apparently in prednisone-induced remission and the only symptoms I have left fall within IBS.

I feel a lot more secure now knowing that regardless of how the pill cam comes out we'll be making huge progress. If I've got a mild stricture and/or active crohn's disease IBS is still not possible to diagnose but I'll get a dilation and/or more aggressive treatment for the crohn's. If 3 months of prednisone didn't do it we'll probably have to jump forward to remicade.

If it comes back negative it's not all lost on the crohn's front or the IBS front because we can try to replace the prednisone with something nicer like pentasa. While we're doing that we can try to figure something out for the IBS too. I don't know what decent options there would be. I'm already having constipation issues so muscle relaxants, SSRIs, and anti-spasmodics would all probably just make it worse. But, I'm sure we can figure something out.

Doing some research I'm founding out that IBS is a lot more common than I thought too so an overlap isn't as unlikely as I had previously believed. 20% of Americans have IBS.

Last edited by Colt; 11-18-2008 at 06:32 PM.
11-18-2008, 11:00 PM   #58
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LOL Colt...

Like I said about last summer it took them most of the 2.5wks I was in hospital to figure out I had both and it can be really hard to work out which is which!

So you definately are not on your own there.

Thats the whole point of chasing things through to the end isnt it? So you get the right treatment for the right diagnosis rather than mucking about and guessing. Its hugely frustrating when all you want and are asking for is relief I totally understand that one.

When I asked the dietitian about foods in relation to IBS she said they were virtually the same as for Crohns. But needed to watch the fibre aspects.

What is a GI term for remission and what your interpretation of remission is can be two totally different things also I discovered. Mine uses a really weired scoring system and if you are between so many hundreds of points in a range you are in remission no matter how you feel! Thankfully my GI listens lol

I am on mebevrine as an anti spasmodic and there have been times where I have stopped it thinking it just isnt doing anything for me then discovered how much it really is! So might well be worth looking into on that score. Might help the muscle contractions to be more effective and consistent in that area - sort of level things out a bit? Does that make sense?? Its 4am so am waffling a bit lol

Apparently IBS is VERY common in general but also the overlap is common too. One of my gastro nurses and my dietitian was telling me last year they are realising it can be an element of crohns that isnt recognised often enough and also how much it impacts on the pain front too.

Whatever the outcome of the cam Colt I am very very glad you are finally starting to get some answers at long last. You really have been through the mill.

Almost there, keep going my friend! Thinking of you..
11-19-2008, 08:18 AM   #59
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Really I have to wonder how much and how they're related considering the similarities and overlap. It would also explain why my crohn's has been especially pain heavy. Before the prednisone I added up my worst daily pain scores for an 8 month period. I was at a 7 or above about 1/4 of the time. Looking back at my calender now it's shocking how much of a difference there is. Sure it hurts after I eat but I had times when I was bleeding like mad for a week, had 6 ulcers going on at once in my mouth, or vomitting after eating soup (and I have pretty much 0 gag reflex and almost never vomit), my joints were so bad I couldn't hold a 6 pound baby for more than a few minutes, and I had whole weeks where I was at 9 and 10 pain.

I need to get that calender redone and bring it in to show my GIs. Unfortunately I kept refining my chartting rules so it looks like a mess if you try to skip around looking at the older stuff. I need to get ahold of a 2008 calender so I can copy it over in a readable fashion.
11-19-2008, 10:19 AM   #60
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It really is a case of scrutinising things isnt it and working out the "different" types of pain. Does that make sense to you or am I waffling again?

I know I get bad spasm in my colon that is related to IBS before and after going to the loo now.

I also know however that I get pain radiating from my lower right quadrant that travels the length of my colon in spasm that is related to my crohns and can now generally tell the difference.

Have found that some foods also have an impact on one or other pain.

IBS is very very real Colt and can be excruciating so dont ever underestimate its power to take your feet from under you! Might be a case of layering some meds like an antispasmodic and a painkiller for instance..

I also know that my mouth, throat and stomach are all involved in my Crohns now and the impact that has.

Hang in there. Keep poking them til you get your head round things and figure out what is what ok?

Am still here listening too along with everyone else..
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