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Prednisone not enough?

Is it really feasible for me to be on 60mg for a week, and then 40mg for a week and I'm still having pain (abdominal and joint) and constipation I can't control with stool softeners? I mean, my first go around with just 40mg made me feel like I was on top of the world. I had tons of side effects like vertigo and stuff that I don't have now but I felt great crohn's-wise.


ele mental leprechaun
Colt how did the 60mg make you feel??

If the 60mg worked then it may be a case of a slower decrease for you. You know yourself if you are on it longer than a couple of weeks you will need a slow decrease anyway.

Am just thinking out loud here but the joint pains can be a side effect of pred and also of reduction too.... depends if the joint pain was there before you started the pred and if you feel there is any difference in the "type" of joint pain if that makes sense. As in can you work out if its the pred side effect or the original pain? Hope that makes sense to you? Could also be the drop from 60-40mg was too big too soon and its aggravated the joints and abdo inflammatory wise.

If you had lots of side effects in the past and arent having any now it could either be your body is too far down the line for it to impact OR your body needs a higher dose to cope.

On the thought of constipation are you drinking enough to compensate for the fluid retention from the pred? If things are improving for you with the pred then the abdo pain could be from the constipation and dehydration and the joint pain a side effect.....

As I said pondering out loud here..

Hope you pick up soon.
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I've been bouncing all over the place with my prednisone dosing. My doctor was taper happy and I had to call him and have it tossed back up a few times so I've been yo-yoing on the prednisone.

It's a long story and I don't have time right now, but I am doing better. Other than this possible fistula I've been pretty clean on the ulceration at 20mg and above.

The joint pain is a combination of my normal joint pain which isn't nearly as bad as pre-prednisone and things like blood pooling in my legs really bad and exacerbating the issue. It's not edema as I still have good elasticity on my feet but if I stand for long periods they feel terribly swollen and painful and when I've got that irritating my already achy joints I really have a problem. It took me while to figure out that's what was happening and that it wasn't just the inflammation.

The constipation just keeps making me think stricture over and over. I am getting some out every day or two and sometimes I even go frequently but it's like rabbit pellets if you know what I mean. Little dark hard balls.


ele mental leprechaun
Colt you really are having a rough time arent you. Really feel for you at the minute.

Would you think it reasonable to ask your doc to up the pred to a decent level then reduce more slowly as a starting point?

The fact that you are finding your feet swelling when standing for long periods can be a sign of early oedema. I agree with you that the swelling on top of the joint pains is a horrible feeling and you certainly need relief.

Its possible you have a stricture as you say with the type of stool you are passing but it could also be a sign of dehydration and impaction...

From what I know of you Colt you are on the move a fair bit with your youngster around so you will be working your abdo muscles with that so its not as if sitting about is contributing to the constipation either. Thinking out loud here bear with me....

You know yourself there are 2 different types of fibre i.e. soluble and insoluble and am just wondering if there is anything you are eating that could be impacting on that score that is contributing to your constipation too..

Its hard to know without physically being there with you Colt so am just throwing out ideas from experience hoping something might trigger an idea for you.

You certainly sound like you are doing all the right things!

Keep posting and keep this thread up to date if you can. Will help in any way I can ok?
Thank you for the ideas and advice. It really is helpful. It's also kind of nice to be on the receiving end of the advice sometimes.

The pre-edema is just prednisone I'm sure and I just tapered back down to 20mg again this morning and I'm already noticing a big difference so it shouldn't be much of an issue. Even after just 1 day at 20mg I'm noticing a visible difference in my moon face. I spent half the day peeing too. Unfortunately I haven't lost as much weight as I thought I would with the fluid release. I'm at 170lbs currently, which is where I got with prednisone last time. I'm really steady with it too. In the past I've usually bounced around between 150 and 160. Pretty good for as much prednisone as I've been on.

I'm quite active. At home and at work. At work I'm running up and down a 7 story hospital all day long or I'm pacing around the clinic and bending over a phlebotomy seat. At home I'm always running some errand or dancing/crawling with my son.

I don't think I'm really eating anything unusual. I keep my fiber very well balanced. Largely it's trying to keep it down. I like the taste of whole grains and such which I have to restrain myself on. I've even changed my diet around within this constipated period with seemingly no change in the constipation.

For a while my diet was rich in proteins and fat (veggie meats and dairy), for a while spicy food like coconut milk and rice and such, and lately sandwiches and soups. I've recently started drinking V8 vegetable juice and V8 smoothies too which should give me lots of soluble fiber. I'm just at a loss. It's not been a sudden onset either.

I've just been getting progressively more and more constipated and my stools are getting more and more like pellet-like. It's not getting any better as I taper either. I'm holding at 20mg until my GI appointment on the 4th. I'd say it was the prednisone but I've been seeing a steady progression toward this kind of stool since long before the prednisone. It's just suddenly gotten to be really problematic instead of being a nuisance.

The pain I'm having is disturbing too. I'm not really having ulceration issues but my left side sure has been hurting. Pre-pred the extremely sharp pain I got all the time was on my right side, I'm assuming around the ileum. Pooping is like giving birth, at this point I have to actively push it out like it's a big object I'm trying to push through a tiny hole and I can feel stretching in there, yet the pellets coming out are about the size of a quarter (Shilling) or less. (Yeah, wow, this is a gross topic)

At least today I managed to get a decent amount out even if I did have to go 4 times and it was difficult. I'll take 3 more stool softeners tonight but unfortunately it doesn't seem to be making a difference at all. Not like in the past when 1 was enough to clear me out.


ele mental leprechaun
I agree sometimes it is good to be on the receiving end of anothers thoughts even though we have a knowledge base. Helps just to pick over things as a sounding board doesnt it in case there is something obvious overlooked because we are too close to the problem.

I do it at work too sometimes.

Glad you are off loading the fluid and it was a retention aspect in some ways. Watch yourself with the big drops in pred. It might increase your muscle pain down the line and leave you feeling almost flu like ok?

I knew you were busy workwise and at home so knew there wasnt a mobility issue impacting on the constipation. You know yourself walking of any kind works your abdominal muscles that help move things around GI wise. Hence folk end up running to the loo when out shopping etc - oh the joys eh lol

Its great you are able to tolerate such foods including the V8 Colt, as you say it should help on the soluble fibre front..

Just wondering if the stool softener you are using your body is becoming more used to it?? You say it takes more of it to work and also that the problem has been coming on for a long time. Have you tried anything else?

You know that different meds in that department work different ways. Some work from the top down (do you need a different composition), others in suppository form (is it low enough to use something like this), some as softeners (maybe you dont need a softener or, again perhaps need a different composition ingredients wise on this aspect), others provide bulk (still may need some bulk but difficult with the crohns aspect and would need very tight supervision I think) etc.

Maybe a chat with colleagues or pharmacy or GI might come up with another option that could be worth changing to Colt? I talked to my pharmacist last time I was going for barium follow through as the previous time it was done I ended up in agony with constipation from chalk! She said its best to try and use something more natural with crohns and actually recommended apple juice to me! I find it works really well too if I run into any problems.

Another thing - watch your fluid balance as you offload. You may need to drink a bit more to balance yourself out still and bring the rest of the fluid into your circulation to offload further (could be a reason why you arent dropping as much weight as you thought you might as your body is still hanging on to some excess still). Just another ponder on my part lol Its a game I play regularly at work in balancing folk out.

Just throwing out ideas as I say..

Keep me posted on your thoughts if it helps. As I said will help any way I can ok?
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I've been feeling worse down on 20mg but so far it's manageable. I'm mostly rid of the pre-edema in my legs and I've traded it in for some more inflammatory style joint pain to make sure I stay at the same discomfort level.

I've noticed some muscle pain too. Little spikes here and there, most drastically in my old shoulder injury. It's been forcing me to stretch and massage a lot which helps. I took a darvocet for it today too. I've noticed some small muscle spasms too.

I should be monitoring my blood pressure each time I taper to screen for Addison's but it's extremely annoying to take your own blood pressure and I can never convince my wife to take the time to do it either. The times I have had my BP taken it's been actually slightly higher than pre-prednisone and with the 20mg still coming from the pill I don't think there's any serious threat of lacking steroids even if my adrenal gland is sitting on it's ass being lazy. I'll worry about it more when/if I get down to 5mg or so. Any crapiness I feel now should be harmless.

I should also be checking my blood sugar since a lot of pred can make it high and not enough can make it low. That actually is a threat. My wife used the last of her test strips though so I'll have to wait until we get to the store again so I can get some more and use some for myself. I hate using capillary blood too. I'd rather draw my own veins any day.

At this point I'm in the mood of toughing it out and getting as low as I can. My GP's left me at 20mg until my GI appointment where I can discuss where to go with him. I think I'm ready to try Methotrexate if I can get rid of the steroids for a while. 6-MP and Remicade seem to be too risky side-effect wise unless tests come back with something really serious.

I'm not really a prednisone hater, I just think I need a break after yo-yoing all over the place with it for over 2 months with at least a month of tapering ahead of me. It feels like I'm in a place right now where if I don't get off this stuff now I'm going to be on it forever. I'm tired of it.

I'm till trying to figure out how well I'm tolerating the V8 and such. Maybe it's contributing a little bit to the constipation. I've only been drinking it for about a week. In large part it was intended as a supplement to partially replace my multivitamins which I've stopped in hopes of reducing the constipation.

I've been taking Docusate which is an actual softener. My stools are really hard and dry too. They're even cracked like dried dog poop on a sidewalk (weird image but it's the best analogy I could come up with) so I would think a stool softener was the right way to go. Since it's not absorbed it shouldn't really be something my body can develop a resistance to and the same mechanism should still be in place so if it was working before it should work now, but with the way my body's been acting recently there's not much left that can surprise me. Maybe my body has adapted in some way.

Since you mentioned it I think I'll try a lubricant like Miralax instead and see if that does any good. Attack it from a different angle. Again, next time I go to the store. Sadly going to the store for me is a major problem because it has to be the 1 errand of the day.

I've been trying to drinking plenty of water and such. I have a cup at work that I keep water in and drink from any time I've got a break. I've actually been especially thirsty during the last couple of days.

My abdomen's looking a little bit 'lumpy' and uneven tonight and I've been having some really bad abdominal tenderness but I did get a significant amount out early this morning so I know I'm not going to wake up tonight with a ruptured intestine or anything. Regardless I'd starting to seriously think about a liquid diet. I have a couple sores in my mouth right now (one on the roof of my mouth that my wife says looks like a laceration though I don't remember it happening, and another on my right cheek which may have started out as an ulcer but since then I've bitten it a few times and it's looking pretty nasty) which are making it really painful to eat anyway so I resorted to mashed potatoes and soup for lunch today. I think I'll keep up with that kind of soft food and maybe it'll help on both fronts.

I'm getting a little bit desperate so I'm up to trying just about anything. At least I'm not having intense pain and bleeding all the time though. Regardless of my problems now they're not as bad as before I was getting treatment. I even think to myself that I'm being kind of whiny and picky to want to be ALL better. Clearly I should have to trade something for each improvement. It doesn't seem fair. :)
Oh, I forgot to mention that my face is looking a lot less moon-like. I can see the difference now so I apparently am losing water, it's just a steady process. You really don't realize just how much water you're holding when you're retaining water. All that water coming out (I think I've peed at least once an hour all day long for 2 days now) and it's nowhere near as much extra as I'm still holding.

It's pretty amazing. I took care of a guy that was dying of prostate cancer. He went over a week without any significant water before he died and was still urinating until the last couple of days. We were baffled and people were questioning if someone was sneaking him fluids and not admitting it. What I realized was happening was that he had pretty bad edema in his feet and he was draining that edema like a camel's hump. The poor guy had to suffer for a lot longer because of that and he was a really cool guy. My favorite non-mentally-retarded person I've ever taken care of by far.
Well, it looks like I tapered too fast and got Addison's. It started Monday when I dropped to 20mg and then got steadily worse until it got overwhelming today. I woke up with my lip bleeding. I've gotten so dehydrated despite gulping endless fluids (and peeing every 15 minutes on average) that my lips and mouth got dry enough to crack. My lip started bleeding again toward the end of the day. I've had muscle aches and pains, I've been incredibly fatigued and weak, I've had terrible headaches, I've felt hot and sweaty, my hands were trembling, and at the end I was vomiting.

I've since taken another 20mg of Prednisone and I think I'm doing better now. Earlier I called my doctor's office. He wasn't end and the nurses panicked because the issue was WAY over their heads. When a nurse (practitioner I assume) finally took me off hold 30 minutes or more after I initially called she couldn't grasp what was happening and wouldn't dare to give me any useful advice just saying that she'd have my doctor call me tomorrow morning.

Her best guess was that all my urination had left me with an electrolyte imbalance. Well duh, but that's a symptom and not the cause. I was just calling to try and be polite and coordinate with my treatment team instead of going gung-ho and giving myself whatever dose I felt like without asking the people giving me the stuff in the first place. She just seemed dumbfounded and annoyed by being bothered with such a difficult issue.

Adrenal insufficiency is a serious issue. Granted I'm still on enough prednisone that I'm not going to die, but I could still end up spending a day or so in the hospital. She should have had me go to urgent care or at the very least get a set of vitals on me somehow and run a couple blood tests if she knew what she was dealing with. If she hadn't been a random NPC that my call was forwarded to she'd have known something about me (she had no clue who I was or anything about me) and realized I was sitting in a blood draw lab in a hospital while talking to her and all these tests would have just been an issue of calling in or faxing me an order so that the lab could run the test. She'd also have known that if I was calling and saying that I've tapered too fast I know what I'm talking about.

The problem here is that I'm using a student health center as my primary care provider and they are not set up for anything serious. The people working there have no experience or knowledge of anything other than your typical college issues (STDs and flu), and they have no system to handle patients without an appointment. If I were using a normal doctor's office I could talk to my doctor at 3AM if necessary (It's done all the time for pointless things like someone rolled out of bed. Worst part of being a doctor) and definitely get an on-call doctor any time I wanted.

I've gotten pretty frustrated with this whole thing of not being able to get medical care unless my doctor's in the office at the time. I'll have to transfer over to another GP in the next couple of months. I want to get this whole GI thing worked out before I do anything else though.
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ele mental leprechaun
Hey Colt,

Sorry I wasnt around yesterday. Have read back on your posts and you certainly seem to be suffering with the pred wind back.

Guess you can see now what I meant about fluid retention with pred eh? Its the kind of thing you dont realise you have until you start to off load it all via peeing.

You also partly dont realise you are fluid overloaded because of everything else going on and only notice it as you start to wind back and the body begins to try and balance itself out again.

Are you having any palpitations with the aspects of electrolyte depletion? If so can you drink orange juice? Its high in potassium as are bananas. So is DECAF coffee if you can tolerate a small amount of it.

Think about trying the apple juice from the getting things moving perspective too Colt as it is more natural and can still have an effect but much more gently as I mentioned before..

I am not surprised to be honest you are having problems with muscle and joint pain etc and exibiting flu like symptoms with exhaustion etc due to decreasing the pred so fast. Its a BIG ask Colt dropping in 20mg chunks. I really do totally understand your feelings on the pred and although you dont hate it and it has its uses I know in depth why you feel its make or break.You also know however that the adrenals need a chance to wake up and register they need to kick in.

Because of my rheumatoid I have been on IM steroids. My asthma I have had oral steroids for years and of course for my crohns too. In total last year I had the equivelent of 5mths steroids.

As hard as it is to do Colt you have been sensible going back up. Allow your body some time to readjust and level out then come down slower my friend. Its a tough journey but a heck of alot easier for your body and adrenals to cope with you know that.

If I can help on the Methotrexate front just yell. I took my 5th dose last monday and seem to be doing ok with minimal side effects.

On the aspect of docusate not being absorbed and your body not really having anything to get used to it is possible for the gut to work in such a way that the docusate may not be enough. As an example some specific patients I look after need co-danthramer as well as docusate. So you could need a combo of meds as aperients rather than just one. Does that make sense? Again its worth going to talk to your GI or pharmacist. Preferably not the team you are currently under by the sounds of it as you dont have much back up at the minute.

Keep in touch. Will post when I can. Am using my fiances laptop at the mo so its getting it off him to begin with!! ;-) If its any easier feel free to PM me Colt ok? Hope you are picking up a little by the time you read this.
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I was right about the prednisone being too fast. It was my doctor's idea to taper that fast. He's just terrified of the stuff and wants me off of it ASAP. Like I've said, he's taper happy and I think he's getting to know that now. I really didn't need to call. I got word through my doctor's nurse to move back up to 30mg until my GI appointment. I had already started doing that and took 30mg that morning. Since going up to 30mg I've been fine with the prednisone. No adrenal insufficiency and not much in the way of prednisone side effects. If I remember correctly 30mg seemed about right last time I was up high too.

The nurse practitioner was wrong. I didn't have an electrolyte imbalance. In fact I was overcompensating (in part due to her advice) and I drove my blood pressure to 180/80 by the end of the night.

Friday morning I suddenly had a strong need to go and went to the bathroom. A single piece half the size of my large intestine came out and then enough for the rest of my large intestine. The rest of the day I kept going. That's terrifying. I must have been packed full clear back into the small intestine.

How I got to that was on Monday moving up to miralax and starting a mostly liquid diet (solid but low-fiber meals just before and after bed; and then ensure, mashed potatoes, and soup for the rest of the day. I'll probably continue that for a little bit longer to see if things are getting better.


ele mental leprechaun
Whoever had the idea to taper in such huge jumps I am glad you are levelling out on that front Colt.

I think you will find I mentioned impaction a couple of posts back as it was something I was concerned you had. Guess you found out once things finally started moving.

Sounds like your change in diet is helping to sort out too.

As I said before its hard when I cant clap eyes on you.

What did you mean by overcompensating and pushing your bp to 180/80? It is possible for your bp to increase with the sliding up and down so fast on the pred and for it to be increased whilst on pred (as you know just not that high). What sort of advice did the nurse give you then? Am curious..

Also that what you have been through in recent days has certainly put you under alot of pressure too whilst still trying to get on with life in general!

Am very glad Colt that you have finally got some relief. Was very concerned about you!

Keep posting.
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I don't know if it was exactly a matter of dried fecal matter or something to do with a stricture. When I finally did let loose none of it was dry or hard. I'd have expected the first part to be but it wasn't. Maybe the stricture just managed to be wedged open enough with the miralax and heavy hydration that the back pressure just shot it out like an air cannon. I dropped a 2 foot long solid piece in about 1 second. That's crazy. Either way it's pretty scary knowing how far I had backed up. If it had been blocked at the jejunum I'd have had fecal vomiting and time in the hospital. As it was I did vomit but it was just stomach acid and a little barely digested food.

As for what the nurse suggested: Salt. She thought it was an electrolyte imbalance so I went ahead and took in a ton of salt. I'm pretty sure that's how I got up to 180/80.

We'll see if this plays out again. I'm going to eat solid food for now and keep an eye out for another obstruction. GI appointment on Tuesday so if it happens all over again that'll give him some good info. I had a meal a couple hours ago and I'm hurting on the left side again. Nothing too bad. 4 or 5 maybe but the specific location is the important part.


ele mental leprechaun
I would think if you had a stricture colt you would not have been able to pass such a long amount of stool - just pondering out loud..

Salt?? What stupid mare told you THAT?? You have GOT to get away from that place you are using and get to a sensible clinic Colt.

No wonder your BP was so high!

I would agree it could certainly have contributed to it. Thing is if she had contributed to sorting out your constipation problems she should have recognised sorting it would have rebalanced your electrolytes.

It also was a dangerous thing advice wise because being severly constipated as you were can automatically knock off your electrolytes and you were a problem compounded with off loading fluid originally due to the pred problems. Does that make sense what I said?

It was really a case of sorting out one problem to balance the other. Then all you would have had to do Colt was "top up" fluids or potassium etc for instance as you felt you needed it yourself as I mentioned before.

The speed you dropped the stool must have really floored you (no pun intended). I agree with your thoughts about the jejunum and faecal vomiting. But it does show the strain you were under by vomiting normally too doesnt it. You must be shattered you poor critter.

Would like to know what your GI thinks about the whole thing Colt.

Glad you finally got some relief but as you say you really dont need it again. Looking forward to any other thoughts you have.
Well the electrolyte thing was my tapering. I was peeing up a storm. I figured I needed to make sure I was getting a decent amount of salt myself. It wasn't really a bad idea. It could have been a secondary issue. Having my BP spike to 180/80 for an hour or so didn't hurt much. I didn't see the harm so I humored her. I just had some really salty Chinese food and licked a dash of salt out of my hand. It wasn't really harmful, just kind of silly. I knew the prednisone was going to fix it all when I got home anyway.

The vomiting could also have been related to the insufficient prednisone. That whole episode was just a day and a half before the constipation gave way.

As for constipation, I'm doing okay now. My stools are brown and are in surprisingly large pieces, especially girth-wise. That's highly unusual for me. I went 4 times today. I get the feeling it's not going to last though. I'm still having pain in the descending colon when I've got food passing through there. It also seems to be progressing toward less stool amount each time which is the pattern I was seeing leading up to this before. I guess it'll slowly build up again and we'll do this all over.

I'm getting mouth ulcers again. Last week I had one on the roof of my mouth. That one finally faded and now I've got one at the right side base of my tongue. I can't see it because of the location but it sure is annoying. At least crohn's ensures that I've always got something to complain about. Keeps me interesting.


ele mental leprechaun
I can understand the logic behind the replacing salt/sodium but didnt she give you any other advice about other electrolytes Colt?

What I am concerned about is taking in ANY volume of salt as you did could have put you into further fluid RETENTION. It could also have had an impact on your heart rythm (due to knocking off your potassium and calcium levels with a higher intake of the third electrolyte used) and your kidneys too.

This is why rehydration preparations are made up for folk with excessive diahorrea and vomiting when they have a gastric bug so the "balance" is correct and "in tune" with each other element involved.

The fact that your BP did spike shows the impact your actions had no matter how little the period of time it happened over Colt. Please be careful!!

And yes you are interesting!! LOL Keep me occupied thinking things through thats for sure ;-) Keeps me sharp whilst I am off work at the mo too... hmm busmans holiday do you think?? LOL

Anyway, keep posting. Would be interested to hear how things are going for you and what you think the general trends are.
Well, she suggested sports drinks but I didn't have any with me and I was going home where I'd take my prednisone in an hour or two. I just took what I could. Odd though, my GIs today noticed a murmur I didn't know existed. I asked if it could be related to the prednisone and the attending just shook his head. My BP was fine BTW. 132/72.

I had my GI appointment. I saw a resident first and then his attending came in for a little bit. We went over all my various issues and what's been done in the past. They're rushing me in for a colonoscopy on Friday morning. (It's Tuesday.) They had an opening for me tomorrow but there would be no time for prep.

Even as is I don't have the time to get the iron supplements out of my system. The resident was talking about running a whole battery of tests to get a complete picture of the situation but all I ended up with slips for were ESR, HPD, and a Celiac Panel. He mentioned electrolytes and everything and I even asked about a CRP and he said he'd be ordering one. Weird, but oh well. I'll have plenty of opportunities to get them done later. As he said, "We'll be seeing a lot of you over the next two weeks." Followup appointment on the 17th.


ele mental leprechaun
Thats great news Colt!

I am so pleased you are getting some decent care now!!

Glad your BP has settled too. The pred may not impact on your heart but any malabsorption issue in relation to your electrolytes could as an example. Have a look at the methotrexate thread I update this evening. I am low in Vit D I discovered today!

Its good they are doing a coeliac panel too isnt it amongst other things. Sounds like its way overdue on the overview for you Colt and they are recognising that by seeing you in the coming weeks.

Keep posting. Would like to know the outcome and hope you get more permanent relief soon.
At this point I'm just getting kind of frightened. I have new worries to deal with. Both the discomfort of the prep and test and the fear of the devastating negative test that makes everyone think you're whining and exaggerating.


ele mental leprechaun
No Crohns patient ever whines and exaggerates Colt! Dont ever be intimidated by those thoughts. You ever have the feeling where because you are in the health field you should be able to manage better and start questioning yourself that you are imaging the things you have told them are going on? That you find it hard to absorb they are really happening to YOU - yet if it was you looking at someone else you would soon tell them they need sorted out?? If you do and are then know you arent along on that front. Takes time to absorb things and get your head around them doesnt it? Its also about a certain amount of acceptance that you really arent well (not that you need convincing of it) but because you spend your day helping others its hard to see the wood for the trees sometimes and not until you start to get relief you realise how much you were coping with!

I know you are concerned about the possible results and its having to face the exhaustion of the prep etc too.

Things will settle in time. You just need some decent support and care. Sounds like they are listening to you finally and you really need that my friend.

I have to have another colonoscopy too (last one was in the summer). My gastro cons is unsure whether its my crohns or something else going off. He cant understand why the remicade isnt helping me to the extent it helps his other patients.

I have been helped alot by being on here because I know there are others the remicade hasnt helped after a while. Also the one of the gastro nurses told me that they know patients who never really settle down and have constant niggling problems tend to have more prolonged illness on the Crohns front.

Both those thoughts have helped me to cope with feeling I am making a mountain out of a molehill and should be just "getting on" with things!

Hang in there Colt - you need answers and relief!! Hope what I have said makes sense??

Thinking of you.
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You're finally getting treatment Colt and that makes me happy. I've been subjected to taper happy Pred treatment before and so I really feel for what you went through.

As far as being scared about negative results. I've had neg results on plenty of things. I've not fit the mold of a normal Crohn's patient and for a while I thought I was making it all up in my head. But then I got angry and I fought and fought and fought until I got a proper diagnosis and treatment and even getting the treatment done quickly required me yelling and I am not kidding, yelling and cussing out my GP.

So what I'm trying to say is, don't give in, you know your body better then any doctor, test or scan does. Keep fighting for yourself, your son and your wife until you get the treatment you need and deserve so you can get some relief.
drew_wymore said:
don't give in, you know your body better then any doctor, test or scan does. Keep fighting for yourself, your son and your wife until you get the treatment you need and deserve so you can get some relief.

Here's to keeping up the fight!!!!!
Working at the hospital has it's perks. I got my medical records from the visit. I guess it wouldn't hurt to let people have a look and gain some insight into the doctor's perspective as well as my case.

The patient is a 24-year-old white male who presents to the GI clinic today for evaluation regarding his Crohn's disease. This is a request for consultation by Dr. * for this patient's Crohn's disease. Per discussion with the patient, he was diagnosed in 2001 by a physician in *. He is unsure of the extent of his bowel involvement. His last colonoscopy was in 2001. He had been on a variety of medications at that time, between Asacol, Flagyl, and some prednisone on-and-off for several months and had modest control. He states then shortly thereafter due to insurance issues, he has not had any significant treatment for his Crohn's disease since probably as far back as 2002. He recently obtained some health insurance and established care with a primary care physician and since September, he has been placed on 30 of prednisone daily. He has not noticed any significant blood in his stool lately since being on prednisone but had seen some before. He has had intermittent oral ulcerations and also had some anal fissures which he states he has had in the past from this. He had lost some significant weight intermittently throughout the years but now has regained approximately 20 pounds of that since September being on the prednisone. He has 3 to 5 bowel movements a day which has improved. He is intermittently having some problems with constipation and was worried about being obstructed at one point because he developed significant abdominal distension, no bowel movement output. He put himself on a clear liquid diet and then had large stool output with resolution of his symptoms. Intermittently having some nausea and vomiting and has noticed decreased caliber in his stools. he states he has got no fever or chills, no fistula tract diseases. No new skin rashes or lesions as well.

VITAL SIGNS: Blood pressure 132/78, pulse 104, respirations 14, temperature 36.9(98.4).
GASTROINTESTINAL: Obese, soft, diffusely tender. No rebound or guarding, no hepatosplenomegaly, decreased bowel sounds.

IMPRESSION: Crohn's disease per record.

1. I had a lengthy discussion with the patient today and several things need to be done. We will do some routine laboratory testing including a CBC, CMP, and a sed rate today.
2. He also needs to get a colonoscopy as soon as possible to define the extent of his disease, is there any stricturing disease. This is to include small bowel involvement as well as obtain biopsies.
3. We will have him continue on prednisone but increased to 40 mg p.o. daily to see if we can get some better control over his disease at this time.
4. Following these tests, we will have him come back to clinic in about 2 weeks' time to discuss the results of this and consider other treatment options as well.

The patient was seen and plan of care discussed with Dr. ** (Attending)

We appreciated the opportunity to be involved in this patient's care.
Test results (he apparently forgot to write an order for a CMP):

TEST - Result - Range
WBC - 11.7 - 4.5-11 (High)
RBC - 5.02 - 4.6-6.2
HGB - 14.6 - 13.5-18
HCT - 42.7% - 40-54
MCV - 85 - 80-96
MCH - 29.1 - 27.31
MCHC - 34.2 - 32-36
RDW - 13.5% - 11.5-14.5
PLT - 278 - 150-400
MPV - 8.6 - 7-10.4
GRANS - 78.7% - 44-80
ABS GRANS - 9.2 - 1.8-9.3
LYMPHS - 13.6% - 13-43
ABS LYMPHS - 1.6 - 1-4.8
MONOS - 7.4% - 0-10
ABS MONOS - 0.9 - 0-0.8 (High)
EOS - 0.1% - 0-8
ABS EOS - 0 - 0-0.45
BASOS - 0.2% - 0-2
ABS BASOS - 0 - 0-0.2
ESR - 7 - 0-15
Celiac Panel (Not back yet. It has to go to one of 3 testing centers in the country.)
CRP - 0.6 - 0-0.9
The abdominal exam and blood tests both point to me being right. It's reassuring, and yet at the same time kind of depressing because it kind of cements the idea of my crohn's disease being anything but mild-moderate considering what my results are when I'm on prednisone.

Decreased bowel sounds indicate constipation. Especially the blood tests though. I'm on 30mg of prednisone. My CRP and ESR should be really low and they're really not. I mean, holy crap my ESR was at 10 with no treatment at all and prednisone only brought it down 3 points? The high white cell count points to inflammation and the high monocytes with low-end lymphocyte count points to chronic inflammation and is a major indicator of IBD. The high (the normal standard high limit is 75%. I'm not sure why this lab uses 80%) granulocytes point to acute inflammation as well meaning ulcers, abscesses, fistulas, etc. Moral of the story: I'm DEFINITELY experiencing serious inflammation. All of these white cell type levels are also things that should certainly not be happening on prednisone.

I'm starting my prep tomorrow morning. Really I'm starting it tonight because I don't feel like eating anything before bed, but at least going through this prep knowing what my results were I now have some confidence that it's not going to be a waste of time and misery. I've got some strong determination behind my efforts now. I'm not going to wimp out and eat jello and stuff all day. I plan to make this colonoscopy picture perfect. It's water for me. Maybe some lemon juice in it or clear soda like sprite if I need the blood sugar boost. Maybe I'll lose a few pounds in the process and get closer to having that damn 'obese' left off my exam notes. (I'm not obese BTW, I just look bloated from the prednisone. My body fat is surprisingly low for my weight and even on weight grounds I'm technically pre-obese. Regardless I wanna be the sexy skinny guy I was in my teenage years. Grumble grumble.)

This colonoscopy should get me somewhere. Unfortunately it doesn't look like 5-ASA is where it's going to take me, which always seemed like a reasonable drug situation to be in and was always my hope. Right now I see this colonoscopy resulting in either Methotrexate, if the results are relatively good, or Remicaid if they hit a stricture or find a fistula or something.

Then I'm headed for the home stretch because it's only a matter of time until the new drug replaces my prednisone. That's what I'm going to focus on mentally. I'm not going to acknowledge the S word. I'll just do a bunch of blank staring and crying if that sucker punch comes during my follow up appointment.
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good luck with the scope and the prep! especially the prep...

my fingers are crossed for you that you can get some new drugs that will help!


ele mental leprechaun
Hey Colt,

Very interesting reading that report as you say..

Your ESR (shows 7 on the results you have posted) and CRP (shows 0.6) are both within what are termed as normal ranges over there from what I can see and not sky high...Might be on the high side of normal or high for you as an individual but they are within the set the ranges.

Did you know your WBC shows 11.7 and the upper limit is 11 from what you have posted (white cell count) can be increased when on pred??? Its one I didnt know til gastro told me here. With yours being just outside normal parameters it could just be due to the pred. Its what I have been told in the past so be ready for that comment! Another thing my gastro team told me is crohns patients have a habit of showing virtually normal blood tests and can be really ill!!

I am glad they are following through with a scope though as you have obviously been fighting this for way too long without medical care and it makes me hopping mad that folks loose out on healthcare in a country that is supposed to be leading the world!!!!! I guess too because I am in the UK and have been brought up here its a difficult thing for me to get my head round that someone has to suffer until they get cover!

The other thing is my gastro team have said constantly about how important it is to listen to the patient and how "they" feel in themselves and it certainly seems they are doing that and I am so pleased they are for your sake as you obviously need some intervention and care there!

I agree with you on the decreased bowel sounds and truly hope your scope goes well and they get some answers for you.

Keep us posted.
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I realize the ESR and CRP are normal. It's simply that the prednisone should have brought them down more than that. As for WBC count I was under the impression that prednisone would somewhat decrease WBC and especially run lymphocyte levels higher.


ele mental leprechaun
Not from what my gastro team told me Colt and I have to say I keep an eye on my WBC now when on pred and it does seem to go slightly out of the range when on pred... its a curious thing.

I can see the logic behind the lymphocyte levels that you mention though and would think it possible on that score but it may not overall do much either way as a result.

I can also see what you meant about your ESR being 10 before the pred too but if you have something going on it may not be enough to bring it down more and thats why I am glad they are doing something to support you and figure out what the heck is going on.

By all accounts with "reasonable" numbers that you have and my gastro teams thoughts that crohns patients tend to have normal numbers but can be really sick could be you are showing classic signs like that.

As I said its really curious thing isnt it?

And as I said earlier I am very pleased you will get some answers and decent appropriate treatment rather than making do as you have been to date. It can be very waring trying to sort yourself out. The difference the support from someone who knows what they are on about and the treatment they provide can lift a huge burden from you.

I saw my GP this morning. He told me I wont be back at work until at least after my colonoscopy on 2nd Dec. He is sorting out the IM vitamin D and will give it to me rather than my having to trek to hospital for it. He also started me on pred as I had an asthma attack this morning in the shower (was comical when I looked back) but he is talking about trying to get all my consultants together to discuss how best they can help me as a whole now. Says I have a very complex case and they need to communicate more effectively! I am relieved I have to say and so thankful that he really listens and helps me make sense of the muddle as I get so tired trying to figure everything out. Can be really difficult seeing the wood for the trees sometimes cant it?

Anyway, keep posting as I want to know you are on the upturn!!
Your GP sounds great. Doctors never seem to communicate. I'm a bit jealous.

I'm probably wrong about the WBC. Anyway, the main thing is that I'm as sick as I am despite the prednisone. The prednisone was working here and there and I'm certainly better than I was but prednisone is a really strong drug and I should be doing great, not fighting off a bowel obstruction. I think everyone's expecting to find a stricture at this point. We'll see what happens. No one wants to have a stricture but it will be rather embarrassing if there isn't one considering my level of complaints about it.

It's 5:30PM. I start drinking my Colyte at 6PM. I've got a gallon of it and 2.5 hours to drink it in. I had to stop sipping soda at ~2PM so my blood sugar's getting low and I feel like crap. I already feel nauseated and queasy. I can't imagine how bad I'm going to feel puking my guts out in 30 minutes.
Colt, just to let you know, I passed out before my colonoscopy due to low blood sugar and no nutrients (much like an anorexic person would) and a neighbor rushed over and brought me some coffee with sugar in it... then I drank some mt dew. It was past my stop all liquids period but the amount I drank to keep myself coherent didn't affect my scope. I'd just keep that in mind if I were you if you are feeling bad or start passing out.
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.
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.
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.


ele mental leprechaun
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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ele mental leprechaun
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.
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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.


ele mental leprechaun
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!
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.
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.


ele mental leprechaun
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?
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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? :yfrown:
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ele mental leprechaun
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.
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.


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.


ele mental leprechaun
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!
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.

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.
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.
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ele mental leprechaun
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.
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.
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.
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.
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.


ele mental leprechaun
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....
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.
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ele mental leprechaun
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..
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.


ele mental leprechaun
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..
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.


ele mental leprechaun
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!

hi colt,

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

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.
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.

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:)

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.
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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.
bad management! bad!bad!bad!

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 :ymad: 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,

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.

:ybatty: :ymad: :mad2: :angry-banghead:

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.


ele mental leprechaun
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))
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.
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?'


ele mental leprechaun
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?
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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.


ele mental leprechaun
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))
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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!).


ele mental leprechaun
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.
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?


ele mental leprechaun
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..
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.


ele mental leprechaun
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!
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.
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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.


ele mental leprechaun
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.
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.


ele mental leprechaun
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..
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.
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Another update:

I'm down to 25mg of prednisone. Some D still (I'm going 4 or 5 times a day significantly and it's usually urgent), but at least I'm not having a bunch of mucus or blood for the time being.

The biggest problem right now, though, is the joint pain which began in earnest yesterday when I started my work week. Work is becomming agonizing. By the end of the work day, like now, my legs hurt so bad I feel like crying. It's not just my knees though. It's pretty much all of my joints and my fingers are extremely important to me. I have to have extremely good fine motor movement to work and having my hands stiff and wanting to curl up is not acceptable.

One of my big concerns for the appointment in a couple weeks is going to be if they don't want to consider the joint pain part of crohn's disease I need testing and/or a referral to a rheumatologist for RA or another auto-immune disorder because it is blatantly obvious thanks to the prednisone that I have serious inflammatory joint issues. 30mg of Prednisone and above = little or no joint pain. 25mg of Prednisone and below = joint pain bad enough to make an 80 year old blush. By the time I finished tapering off of the prednisone I'm going to be in a wheelchair.
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ele mental leprechaun
I totally agree with you Colt on the joint and muscle pain aspects and the need for referral EVEN if they do agree its linked to your crohns you still NEED the right treatment for it!! So dont you dare let that one go!

I had my remicade today and my favourite gastro nurse came to see me. We spent 40mins talking about the letter I gave my cons before my last scope at the beginning of December.

Ready for this???

She told me today that there is research coming out now that shows there are some crohns patients who always have a very very low level of inflammation that cant be seen typically in biopsies or scopes but is in a very thin layer of the gut wall that is NEVER controlled and these patients typically have constant pain!!! Talk about gobsmacked!!

She said she thinks I am one of those patients. She is going to talk to my consultant and get his secretary to request my notes immediately after the holiday and ask my consultant to go through my notes on ALL my clinic appointments in relation to asthma, crohns, IBS, dermatology and rheumatology and link it to the letter I have written and given to him. We both agreed he is very methodical.

She said she was concerned I would pin my hopes on finding something else as an underlying cause but I pointed out to her how much better I am overall and I was looking at this as "tweaking or fine tuning" in an attempt to try and maintain stability longer as every few months I crash and burn and yet again I have been off this time for 3mths.

We also discussed my last 3 scopes and clear results and pred and antibiotics each time beforehand. She agreed totally with me that they obviously help me get better each time hence the clear results otherwise why would they use them for patients? So she is going to reinforce this with my cons too.

She is going to organise an appointment for me to see my cons end Jan/beginning Feb so I will be off my pred a few weeks by then and should be able to work out whether the Vit D and Methotrexate are helping too.

Fingers crossed eh? Will keep you posted but feel so much better in myself after having talked to her today.
yikes. when do you next talk to your doctor? I wonder if they will
increase the prednisone for you since you just decreased it.
I'm kind of in the same boat. having pains and diarrhea again on 40mg.
I was supposed to decrease to 30 a few days ago but they told me not to
for now.
And I totally hear you on the joint pain. I only got it when I started the
Pred, and they ignore it as if I'm just making it up! Is your joint pain any better?
For me I'll probably have to continue down to no prednisone, have a nasty flare, convince them to bother with another set of scopes, and be positive for ulcers before they'll put me back on the prednisone. Good times ahead.
Well, the joint pain is kicking my ass. Due to the physical stress of work (mostly going up and down stairs and bending over in odd positions) it's getting worse and worse. Today after my last run it took me about 30 minutes to get back to the clinic because I just couldn't stand the pain of going down the steps. Every step was excruciating so I just couldn't make myself go any farther and had to sit down. After trying and being forced to sit 3 times I eventually made it down the rest of the steps by sliding down them on my butt. Once I got to the next accessible floor I waddled over to a patient transport elevator and went the rest of the way to the 1st floor.

The odd thing is that my intestines aren't really that bad right now. No more than could be explained by the IBS. Usually my intestinal symptoms correspond with my joint pain. My joints are bright red and clearly inflamed so I know I've got auto-immune inflammation occurring, just nowhere near as bad for my intestines.

I'm starting to look a bit at other autoimmune disorders. RA + IBS would be the obvious diagnosis and would explain the blood work that helped lead to a crohn's diagnosis but it doesn't explain my intestinal inflammation that I've had really badly in the past. As far as I know RA doesn't feature intestinal inflammation. Pretty much just heart/lung inflammation if goes beyond the joints.
Another update. I went to the GI today. I ended up with a fellow initially this time. Then my GI attending to approve things. The fellow actually listened to me and wanted to know what was up with the crohn's diagnosis considering they hadn't put anything in my notes that sounded anything like crohn's disease. I finally got a chance to explain what things were like pre-prednisone and that changed everything. As far as the fellow was concerned I probably did have crohn's but, as is my opinion on the matter, it's in prednisone-induced remission and the IBS is what's left over. So, my crohn's diagnosis is back with a 'questionable' tag and since it seems to either not be the case or be in remission we're just going to have me come back when it flares up again.

The IBS is doing pretty well. It's much better and we upped my elavil from 10mg to 25mg and hopefully that will knock it out completely.

As for my joints, I managed to get a rheumatology referral out of them which is in a couple weeks. We'll see how that goes but the joints are really my only serious problem now.
Another update: Inflammation in my ankle x-ray and I have a vitamin D deficiency. Eerie soup dragon connections continue. Is she the cause? Is it an international conspiracy?


ele mental leprechaun
HA ha ha ha ha ha ha ha

Me startin to get a complex cause yer becomin my shadow! LOL

Let us know how you get on. How is your wifes IBS? Please tell me thats all she has going on!

I don't even remember mentioning my wife having possible IBS. The mystery deepens. How did she know? Is my house bugged?

Her problems are relatively mild. No pain. Just has some diarrhea and constipation issues. A little blood from pushing out hard stools and such is as bad as it gets.

As for me I went into the rheumatologist fiasco in another thread and I'm still pissed off enough about it that I don't feel like repeating the story yet. As for the vitamin d deficiency, it's at 28 so you can expect the doctors to completely ignore it and any possible indication of autoimmune that it's presence has. As in your case, I already take a vitamin d supplement and get more than normal in my diet, and I'm ridiculously pale so my skin absorption of D should be highly efficient. I can only imagine how low it would be without those factors.
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