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I figure I'll use this thread to vent and babble about myself endlessly and about things that have/do/will happen to me. Like a blog but mildly less self-aggrandizing, although just as inconsistently updated.
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I'll start with my diagnostic/treatment history that I posted elsewhere:

I had numerous appendicitis scares all through my childhood which they determined was gas. A couple doctors also went with a 7 year long sinus infection that was draining mucus into my stomach and causing it to be upset (not that bad of a guess, drainage does apparently exacerbate my crohn's).

Then at 15 my at that time current doctor pretty much left his practice and his nurse practitioner took over for a while. She went with IBS, which she had, and that was the first time someone actually identified that it was my intestines that were the problem and not just my stomach.

It kept getting worse and so I then began my around the medical community tour. I must have seen a dozen doctors, all of them doing one exam and maybe ordering 1 or 2 tests and then sending me to another doctor. I had just about every test you could think of. Barium from all angles, CT scans, etc. The only thing I didn't get was a colonoscopy or a visit to a GI.

So, then a new doctor takes over my old doctor's practice. He's fresh out of medical school. I start going to him. He looks over everything, pulls out his medical books with me, we start running over all of the possible causes, their symptoms, etc. We eliminate most all of them and end up with crohn's as the only reasonable source of my symptoms. He set an appointment with a GI and my doctor and I ran down all the various ways of treating crohn's from the least dangerous to the most. Once a month weekly runs of steroids and high dose antibiotics seemed to do well for me and after a few months I started going into remission.

I was doing really well by the time my GI appointment showed up 6 months later. My GI was convinced that I had a defective ileum that was simply too small. He scheduled a colonoscopy and right afterward at the debrief before sending me home he seemed rather disappointed and said that my ileum was of normal size (apparently he was hoping to write a paper about this or something as excited as he was about it) and that it was too inflamed for him to really see anything else.

Later when I went back to him for the official results he said the whole colonoscopy was negative and there were no signs of inflammation. When I mentioned to him what he said 15 minutes after the colonoscopy he just scowled and said "Why do you even want crohn's? I'm not going to diagnose you with that. If I did no insurance company would take you and you couldn't pay me."

So then I went back to my GP and continued with him. A few months later my Medicaid ran out when I turned 18 and my treatment ended. My GP loaded me up on painkillers that I rationed out for a little over 2 years and I learned what OTC medications to take and when. That's it.


Good idea to having a running blog. Thanks for sharing! Maybe we should all consider starting our own running blog?
That wouldn't be a bad idea. Probably useful later for tracking flares and stuff too.

Anyway, currently I'm working for two different companies that focus on the developmentally disabled.

In one place I'm working with 1 to 3 other people at any given time taking care of a group home with 7 guys in it. Males aren't allowed to work anywhere near a female (we're all incapable of retraining our manly urges to rape females supposedly). Females can work with anyone despite the fact that all the sexual trouble this company has had has been between male clients and female staff. This results in the creation of all-male houses so that male staff have at least one place we're allowed to work. Of course females get preference when competing for job openings in the male group homes too.

Most of the guys are non-ambulatory meaning they can't walk, and all but 1 are incapable of speech, and he's blind. Most of the work is lifting people between wheelchairs and beds, giving showers, and cleaning up crap since all but 1 wear depends and that guy really should be but the other staff have proven their inability to change him on time because of his constant combativeness (he's most likely experiencing some depression and dementia).

For the other agency I take care of a teenage male who has muscular dystrophy. That means his muscles do not work (because they're so weak) below his neck other than his fingers. This guy lives with his family who take care of him the majority of the time. Well, more his mother does everything.

I get to go to prom tonight by the way. I'm working extra because his mother thought it best she not be the one who goes. It's totally uncool to go to prom with your mother. :) I'm 23 and I never even went to my own prom (I was kicked out of school my junior year because my crohn's disease was ruining their attendance statistics and they were afraid of 'no child left behind'.) so I expect this to feel extremely awkward.

For the teenager I do everything. Every single day to day movement of his body I do for him. When he rolls over at night it's my muscles doing the pushing. When he scratches his head it's my muscles that lift his arm. Oh, and he's 210 pounds. Being unable to move your muscles has a tendency to reduce the amount of exercise you get and he eats like a normal person.

Considering I'm in a flare up you can imagine what this work is doing to my body. Even for someone who is healthy this is completely draining and bruising work. I've been working with him for about a month now and I've been in a rapid decline the whole time. On top of that his mother is very observant and knows I'm not holding up to it very well. This causes some major problems in that not only do I have to hear her sympathy and concern all the time which embarrasses me because I usually think I'm succeeding in my efforts to hide my illness, but I know she's got to be thinking all the time about how I'm not fit to take care of her son. That's always my major worry. That I won't be able to hold a job because I'm not capable of doing the work properly, which is legal to deny me a job for.

The group home has it's own set of problems in that I've got other employees around all the time watching me and constantly complaining to my supervisor if I show the slightest amount of weakness. To them, if I'm not the one doing all the work they have to pitch in, and that's just not right. This drives me to work exceptionally hard there too.

In all I've pretty much reached my limit. I called in sick last night and of course the staffing coordinator had to grill me on exactly what was wrong with me. I'm weak, miserable, and not exactly in a good mood to toss into the gossip factory at work that I've got diarrhea and I'm spewing blood out my ass.

Possible relief is in sight though. I've already put my notice in at both places. I'm moving at the end of this month (April) so that my wife can finish her degree. The bad part here is that I don't know where I'll be working when I get there. It could be better or worse. Regardless it's still completely up to me to support my family for the next 2-3 years.

I looked into free clinics in the area and found 2. I haven't seen a doctor in about 6 years though and my medical records are all long gone so while I could finally get some treatment I'm terrified of being run through all the tests all over again. Even then, how much is the free clinic going to pay for when it comes to testing. It's one thing to give someone a free doctor visit, but colonoscopies and maybe even surgeries?
My overall condition is improving greatly compared to last week. I had an anal fissure that started with a good amount of bleeding on the 29th and a lot of pain since then too, but then I had spurts of a few days of pain all through last month. Since the 29th I've been spotting on my tissue as the anal fissure refused to stop bleeding. It got so bad on Friday that I had to give in and call in sick for work.

But, on Saturday everything seemed to magically change. My pain has been very low (2s and 3s), with just some soreness since then. It's Tuesday night now. My fissure has been healing too. The bleeding has been in a steady decline until today I just had 1 tiny spec one of the 4 times I went. I'm actually constipated but I'm basically dropping pebbles every few hours. Over all though, I'm doing very well. I'm trying not to get my hopes up though, because I've been bouncing up and down the pain scale for about 2 months now. Besides, my ass still itches like hell so I know that fissure isn't done with me yet. Luckily though, I discovered some old antibiotics that I can fall back on if the damn thing won't give up without a fight.

I've been extremely gassy too. Since Saturday when things got better I'm having pretty much non-stop flatus all day long. I usually have it but it's even worse now. It's obnoxious and is starting to annoy my wife to the point that she's saying something, and she's already used to me having gas all the time. I also have to go to work and I work most of the time in someone's home in close proximity to them. I do everything I can to not be audible but sometimes it does slip and I'm paranoid they're talking about me behind my back.
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Senior Member
Be very cautious in your use of old anti-biotics. It may be a terrible gamble... As for the gas... gas level changes are common whether one is improving or failing..

Personally (AND this is totally my own superstition - based on how it worked out in my particular case)... I've always speculated that a deteriorating condition inside is signaled by a drastic/noticeable change for the worst in the odour of flatulence... not so much the flatulence itself. I have absolutely ZERO scientific evidence to support this cockeyed theory of mine. Take it for what its NOT worth... In your case, it could be just a side effect of the new meds, or of the whole healing process (did I just actually say that? No pun intended, OK?)
I'm not taking any new meds. It doesn't look like I'm going to need the antibiotics to help heal the fissure. It's clearing up on it's own. I'm down to a speck or two of blood on my tissue now. I'm a medication aide and such so I'm rather well versed in medication dosages, uses, etc. The big downside for me is that antibiotics have historically made my crohn's a lot worse while I was taking them (antibiotics alone can cause a pseudo-colitis in high doses) and better afterward. My system back then was that we'd wait for a a time when I could just be out of commission for a week or so like spring or Christmas break and I'd get a run of high-dose antibiotics and steroids. Then I'd be relatively good for about a month.

Originally my doctor and I were working with the bacterial crohn's cause in that treatment (back then it was by far the best theory going and we were running through every treatment we could think of to see which one worked best) but now I'm thinking it's more a matter of helping to deal with the infection associated with ulcers and such that was making such a big difference.
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On April 12th 2008 my son Ingram was born. All I can say is I was fatigued before all this and now I'm just plain exhausted. 2-3 hours of sleep per day is going to kill me. Luckily I had a 4 day stretch off from work for the labor, the hospital stay, and 1 day afterward were I just went in for 1 hour to cover someone at a meeting. Frankly I'm even too tired to talk about how this relates to my crohn's.

My appetite has disappeared and during the labor I couldn't get any food other than spicy trail mix which was 90% nuts. Food is really not my friend right now and I've lost some weight. Hopefully things will get more stable over the course of the next few days.


Senior Member
Trail mix that's 90% nuts???? Maybe I'm 100% nuts, but those timebombs I avoid like the plague. I hope you survive their digesting... way too risky for this fellow!
I was in agony trying to pass my BM the next morning but I don't think there was any lasting damage.


Senior Member
Well, my understanding behind the recommendations to avoid nuts, pits, seeds N stones is that these can abrade (sp?) the lining.. resulting in MORE bleeding, but far more importantly possibly giving the 'bad bugs' more or newer access to the whole bloodstream... possibly allowing or increasing the spread/progression of the disease. I mean, sure it will 'hurt' to pass these, but they can do as much harm as the bite of a mosquito carrying typhoid.


Senior Member
Hey, who am I to judge? Like, I smoke tobacco... and it's a well known 'killer'. I've also occasionally 'broken' my diet... eaten a steak, drank a beer. We are all too human... we all screw up from time to time. I think if doing things that we 'know' are risky, even bad for us becomes habitual, then there are other things to think about. With a deteriorating GI tract, we have to step back N look at the long term picture. I don't want to end up in diapers, being tube fed before I'm too senile to know what's going on. That helps keep my on my diet.
no you're not bad colt. any more than the rest of us who do/eat things that are bad for us, or for that matter dont do things that are good for us.

its unfair that we are the group that has to be so analysing of what goes into our mouths.. people out there dont think twice about having a handful of nuts or trailmix, or a few beers on a night out. but we learn the consequences.. and choose not to, mostly.

and yeah kev, i smoke too. i feel an idiot for admitting it.. with all the health risks, and with all the problems i already have. i keep trying to stop, and then demon just takes over and i give in..
This morning my wife sat in bed and shook me awake and with a big pout on her face said "We miss you." and then sulked away to the next room. Talk about heart breaking. It was after 11AM and I still couldn't get out of bed. I've been so exhausted lately. I'd sleep most of the day if I wasn't being pulled out of bed every morning. When I get up at 11Am and have to be at work at 3PM (getting back after midnight) I don't get to see my family very much. It's just so hard to wake up though. At night I can't really wake up to change diapers and such either. I try to lift my self up but I always collapse and fall back asleep before I can hit the bed.

In addition to that, today I got up and felt a little bit of nausea. All day it's been getting steadily worse. At this point it feels like motion sickness from hell. I'm only on the computer and off the floor now because it's eased up some. I couldn't support myself in any way and the best I could do was lay perfectly flat so that there was nowhere to fall. I had to call in for work today because there's no way I could make it to my car let alone drive.

I scarfed down a bunch of ginger and mint and the nausea has eased enough for me to sit up in a chair but now I've got a headache and my intestines are starting to slowly hurt more and more. Life sucks.

I was reading up and was interested in experimenting with a couple things for my crohn's (http://www.krysalis.net/crohn.htm) but I really can't. I'm not getting medical treatment at this point (can't afford it) but I'm moving this weekend and the place I'm going has a couple free clinics I'm going to try to get into. I figure they're going to turn me away because of the severity of my illness like the discount clinic here did but I'll try. That, and one of them accepts on-staff volunteers and I'm a Certified Nurse Aide/Certified Medication Aide so I may be able to bribe them with my labor.

Anyway, I don't want to do anything that might improve my situation because I want to make sure that I test positive for crohn's in as many ways as possible. My old doctor's office has spent 5+ months telling me that they'll find my medical records and haven't done so. So, I have no proof of my diagnosis and I'm terrified of being run through all of the tests again.

Furthermore, if I do anything that makes me better it would mean that I would come up negative on tests and the clinic would decide that I'm a faking it like I was always accused of before my first diagnosis.

I've also got all the stresses of moving a significant distance away and not having a job lined up or anything. I just want to crawl into a hole somewhere and hide until things settle down.


Senior Member
Colt, I don't think there is anything one 'CAN' do that will make the markers for this disease, or the scars from it, disappear. From my limited understanding of it, all of the meds typically used to combat this just alleviate symptoms.. Bloodwork should show the inflammatory markers.. despite whatever therapy you are on.

And, I went 10 years totally 'symptom' free... but during a scope exam, the GI found the old scars from my short first outbreak (only lasted 45 days all told). I mean, if I was having 'some' problems, 'any' problems in between.. that would be different. But I had absolutely zero (0) problems.. no symptoms whatsoever
YET the scars were still there. And it wasn't like he had some fore knowledge. My first bout went undiagnosed... and those records were with my old GP in a different part of the country. So, it wasn't like he took a look at my records and decided to show off... I wasn't having any GI tract problems at the time, I was being scoped as a precautionary step cause my pancreatitis had been falsely diagnosed as pancreatic cancer. Anyway, I'm straying off topic. Your plans are all about tomorrow, or someday. Problem is, this disease is doing its damage to you in the here N now. And not just to you, but to your family, even putting your work in jeopardy. If there are things you can do today to makes it better, maybe you need to start thinking about today; let tomorrow take care of itself.

Just a thought... As for what others think... that perhaps you are faking this.. welll, folks are going to think what they're going to think. You can't control that. And you CAN waste a lot of your life worrying about what others think.. when all that is important is how you see yourself, and how the people you care about see you. And maybe they see you 'not' fighting this disease.. wondering why... thinking perhaps that 'this' is as good as it gets, and that its only gonna get worse. Folks can reach a point where they lose all hope. You don't want that... OK, enuff preaching. It's your call, and you have been burned in the past. I just hope that burn hasn't put your personal pendulum way off centre.
Well, the treatment I was thinking of experimenting with supposedly reduces the inflammation mechanism and reduces TNF. It really scares me that I go in for my one big shot to finally get real treatment and my red and white cell counts are fine and my TNF is fine and they have to do a scope which I can't afford before they believe me. Even then, my first scope came back officially negative. It worries me that could happen again and that my visible issues are in the small intestine where scopes can't go. There's no chance whatsoever that I would ever get a camera pill. It's of the utmost importance that nothing messes with those tests because the one and only doctor I might get to see about this must believe me or I'm back to nothing.

The way I see it a little more damage in exchange for a re diagnosis and a lifetime of treatment is better than failure to be re diagnosed and receiving no professional treatment for the rest of my life.

It's not like I'm not doing anything either. I do follow a vegetarian less-fiber diet and treat myself with pain killers and over the counter medications.
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I'm doing better today. I had an episode of pain of level 6 pain this morning and I had an urgent BM that was just a little constipated one, but oddly urgent none the less. My sphincter felt all bruised like I'd just had an exam too. I don't know what was up with that, it doesn't happen very often. Regardless, not nearly as bad as the last few days.

This is where I try to get my hopes up before I have to load a moving van and drive 8 hours on Sunday.
I decided to tack on a little more to this post 6 months later (holy crap, I can't believe I've been here that long) so I can avoid rambling on too much about myself on the other boards. Plus if anyone wants to just plain ask me a question. That, and to have a centralized source on information about me to send people so I don't have to keep explaining things. Oh, and it's a mildly arrogant self-monument building exercise.

Anyway, to update a little bit that move was terrible. I remember I was sick all that day and had to move insane amounts of extremely heavy stuff on very little sleep and then unload a bunch of it that night.

I love living in Columbia. It's a great city to live in for me. In large part I'm just happy to get the hell out of SW Missouri.

I got a job as a CNA at a nursing home working night shift and suffered really bad until school started in the fall. I got a primary general practitioning doctor (GP) and got on prednisone which made me feel wonderful for a while if you ignore the terrible side-effects I got for the first week at 40mg. Anyway, my goodness tapered with my prednisone and at 5mg all hell broke loose and I'm back to how I felt before.

I finally got in at a clinic I thought could set me up with a sliding-scale charge GI but they couldn't. They did offer to go ahead and start with Pentasa which they could probably arrange to get me for free and gave me plenty of darvocet so that I could stop rationing them though.

I just before going into the clinic I got hired as a venipuncturist drawing blood at a hospital. I found out they offer amazing insurance as long as you stay within their system. The thing is that it's the University of Missouri Hospital and at least 75% of the doctors in the city work for them, and some of the best (if not THE best) doctors in the state are included in that coverage. In a shock to me they don't exclude pre-existing conditions so I should be completely covered.

The clinic gave me a referral to a GI and I have an appointment with my GP in the morning to work out an interim solution while I wait for the GI. Considering I won't be signed up for the insurance until October 7th and my GP is cautious I'm not sure if we'll go back up and use prednisone for another month or so while we wait for me to hear back about the GI appointment. I still can't afford the more fancy drugs for a while.
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So back to 10mg for 2 weeks and 5mg for 2 weeks. Then I have to get back with him or I'll run out and go into adrenal insufficiency. The bulk of my problems started when I dropped from 10mg to 5mg so we'll try it again. Hopefully I'll have my GI appointment and insurance before it comes time to up it again.
I had my first day at my new job and I loved it. The work environment is great. It's relatively relaxed and people are good natured and actually have fun. The work isn't physically intensive and give me good mental challenges to keep my mind active. Drawing blood doesn't bother me a bit and so far I'm still finding it quite entertaining and fun. Really so far my impression of this job is awesome. It's a great fit for my strengths and weaknesses.

The only problem is that for the next month or so I'm working 8AM-5PM and I can't even call my doctor since the office is only open from 8AM-5PM. I really need to get permission to raise my dosage too. 10mg isn't doing it at all. I have a bunch of extra prednisone and I could just go ahead and do it, but I do need to get a hold of him this month because I don't have enough to taper so it's kind of a life and death thing. I must say, I really hate normal day shift and I can't imagine how people function considering most vital office hours.

My Butt Hurts

Glad your first day went well!
The one thing that sucks about working "normal" hours is that it's hard to see the doc who also works normal hours.
Let us know how the new hours go with your relationship.
Cute kid by the way.
Well I found out my new supervisor is really lenient. Not only is she going to let me leave an hour and a half early on Monday to go to the doctor but she told me I can use sick pay for it. All I have to do is put my doctor appointments on a calender in advance and fill out a sick leave paper when I get back.

Relayed through the nurse I called and complained about my situation and got the go-ahead to go to 20mg for a week. Why it's always a week or two weeks is beyond me. Clearly as soon as I taper back down to 10mg I'll be in trouble again. I'll call back up, we'll go back to 20mg, and then again next week and so on. I may just have to talk to him about that. His squeamishness about prednisone is starting to be a problem.

It's like pain killers, yes there are serious issues, but if it's needed it's just needed and that's all there is to it. I can't keep bouncing up and down like this and being sick to the point that I'm bordering on disability 2/3 of the time. One of my co-workers just has knee surgery and you wouldn't be able to tell which one of us it was that had the surgery by looking at us hobbling down the hallway together.

I had to take 3 darvocet one day (spaced out 1 and then another to maintain the effect), and 2 the other. Today I managed to hold off probably just because of the prednisone increase but I'm still having trouble. If we're going to pass on prednisone and just go for scheduled doses of pain killers to get me through the day we need to decide that too. Something's going to have to get me to my GI appointment on November 4th without all this goofing around that still leaves me borderline disabled the majority of the time.
Yeah. And I get set up with a GI. My GP doesn't want to start actual crohn's treatments like Pentasa himself because he feels like he'd be dealing with things that go over his head. So.. prednisone and painkillers are our only options until November 4th.
I hope you like smilies. I'm still trying to figure out how to respond to this. Humor seems a good first try.

I went to the appointment with my GP. I've been better than I was on 10mg but the 20mg didn't bring me to a comfortable level of health. I sat in the exam room alone for 45 minutes. That's partly my fault though as I showed up about 30 minutes early. Well, sort of. They told me to come 15 minutes 'early' when they didn't really need to since I'm well documented on and it's an ongoing problem and such.

Anyway, while waiting I was having some pain and gas. This eventually led to a wet fart (turned out I didn't soil my boxers though, :dog: ) and I had to go scrambling to the nurses desk to have the bathroom pointed out to me. Ironically they put me in the room right next to the bathroom so it was one of those 'duh, right behind you' moments.

Anyway, the doctor finally comes in and starts asking me questions. My main complaint is really that my joint pain is out of hand. No ulcer/bleeding issues though so woohoo there. I'm having pain, some diarrhea and constipation, clearly some mild diarrhea at the moment. So he feels and pokes at my joints and such I think trying to determine injury or osteoarthritis from autoimmune. They're swollen and sore, but it's not a sharp pain or anything.

This is where it gets interesting. When I mention and describe my pain he asks me to lay down on the exam table. :eek:utahere: I knew what was coming and couldn't hold back an 'oh crap.' I then grumbled about it being embarrassing as I climbed up on the table.

He asked why and just as I started to explain he pushed down on my abdomen and immediately stopped my attempt to speak and turned it into squeal of pain. He looked surprised and asked 'because it's painful?' Yet again, I open my mouth to say 'yes' and this time the pain completely paralysis me and I can't get my lungs to push the air so that I can actually make a sound. This continued with me trying to answer his simple questions and me making a whimpering fool out of myself. It's so humiliating. I try never to show my pain and weakness and here I am wiping my eyes when he's done.

We did figure out that in the lower quadrants I was very sore and I was feeling pain just from normal digestion, but with pressure applied the upper left and right were giving me sharp stabbing pains. We also figure out that the majority of the pain seems to be rather deep down. Over all this points toward small intestine for that pain when pushed and ileum/rectum for the passive pain. Interesting really. I don't know where to go with it though. It's kind of a jumbled mess. Different types of pain in different locations likely means different types of problems. Something like my rectum and ileum having ulceration issues and my small intestine having stricture issues. I don't know anymore though. I need some damn tests. Next month I guess.

So... :eek2: goes my doctor. My normal extremely conservative, utterly calm, completely relaxed doctor panics. It's just one of those things.. if this guy's panicking it's time for me to completely :runaway: . He scrambles for his prescription pad and start scribbling and asking me what I want for pain control. I explained I had already gotten 60 darvocet from the clinic after I screamed like a little girl there. Then he starts grimly (clearly frightened himself) urging me to go straight to the ER if my condition worsens. If I start vomiting blood, etc, etc. I start to really worry that he felt an obstruction or something so I ask him; did he feel anything bad? His reply?

"Oh, well I can't say you need surgery right now or anything. I just can't get a good enough look at this. We need to get you through to the GI for some more invasive tests." :yfaint:

So then what does 'Dr. Prednisone-Is-The-Devil' say next? "I think Prednisone is definitely what you need to be on right now. You were on 10mg when you called and we moved you up to 20mg which was good but clearly wasn't sufficient. I want you to start on 60mg (the max approved dose BTW). Get this filled as soon as you leave here. You've already taken 20mg this morning, right? I want you to take the other 40mg as soon as you get home. Go ahead and keep all your old prednisone in store. You'll need to stock up for later."


My Butt Hurts

Well, at least he's not accusing you of trying to get pain pills like the old doc was (if I remember right.) Does the pred help with pain? I don't really get pain, so I'm not with ya'. Maybe it just helps with inflammation?
Anyways - at least you're getting somewhere (or are you. Not sure.)

Oh - I always ask where the bathroom is as soon as they stuff me in a room.
I'd hate to sh*t someone's floor.
Colt anyone who sets their avatar to reflect the love of life gets my respect. My boy is 22 months. Your a great dad, and it shows. A boy needs his father !!!!! Who else is going to teach him to be a man ? WITH LOVE !!
Well, actually my plans were to teach him to be a dancing bear and tour the country making a fortune but I guess we all have our own dreams. :wink:

Prednisone does just reduce inflammation, but inflammation and it's byproducts like ulcers and scar tissue formed into strictures are what cause the pain.
This is going to be short (for me) because I'm exhausted and it's late.

Anyway, I'm not doing as well as I should be. I'm on 60mg of prednisone. How on earth am I still feeling sick? I was on 40mg not long ago and felt like I was on top of the world. Now I'm on the maximum dose, levels people end up on that are surgery cases, and I'm still badly constipated and having attacks of pain and nausea. I'm doing very well in the ulcers and bleeding department I think. I'm just getting more and more concerned about strictures.

Of course it's not as bad as on 20mg, and that wasn't as bad as on 10mg, and that was not quite as bad as when I was on 5mg, and so forth. But.. I still feel pretty sick. Maybe I'm just really clogged up and as soon as the stool softeners get this thing out I'll be all better. We'll see. It's pretty depressing though to still be significantly sick on such a crazy high dose of prednisone.
Well I tapered down to 40mg today and I'm promptly peeing out about 5 pounds today which is good news. The bloating was really bothering me. Both my looks and water weight as well as the blood pooling in my legs after standing for any significant period of time. I am feeling better though. I'm getting a better balance of joint pain/blood pooling pain than I had before I had my dose raised.

As far as GI problems I've had no ulcers or especially bad pain or anything. I'm just terrible constipated.
I went 5 days without any significant bowel movement last week. Just some rabbit pellets here and there. Then of course diarrhea for half a day or a day while all that food finally makes its way out. It tends to be the cycle I get into. Store it up, and then flush it out. I still go 4-6 times a day when I'm constipated. Its just the damn little pellets which are just a waste of my time.

I tapered yesterday and unfortunately all that peeing didn't change my weight. Same as before. Maybe with a little more time. I did have much more inflammatory style joint pain today though. I got the idea to ice them while I was getting an ice pack for a co-worker who's had knee surgery. That worked quite well and brought the swelling down for a while. Unfortunately icing my joints all the time is rather humiliating and inconvenient.

It's not too long until my GI appointment. Election day in fact. Hopefully it'll turn out to be a good day all around. I'm extremely interested at this point to get a barium flow though or CT or something to check for strictures. It's just behaving so much like I have one (or maybe more, who knows). Maybe I'm crazy though.
People focus on that grief signature quite a bit. It seems a little odd to me. But, you've got a point. I've shifted away from the anger as of late. I'm much more into an anxious position where I'm always always thinking about how bad things are going to get and bargaining on which bad things I'll accept if other bad things will just not happen.

I realize CTs aren't worth much. I'm not a fan of them. A negative CT doesn't really mean anything for crohn's, but a positive one still does. The important part here is the lack of near endless vomiting and diarrhea needed for the barium flow through and that plus the camera stuck up my butt for a colonoscopy. What I'm really interested in right now is the possibility of a stricture anyway. I certainly already know I'm inflamed.

In the end, though, I'm still anxious about the idea that all this prednisone I've been taking is going to give me negative tests. Even if it does though, I can at least be reassured there's no serious scar-tissue stricture or fistula at work that will result in a surgery that I'm now having to worry about for the first time in my long career in crohn's.

Surgery frightens the absolute crap out of me, I think in large part because I've always been in denial and considered my case relatively mild and not like the others. I've learned since coming here that maybe I'm not as mild as I thought and surgery might sneak up on me at any time.

In my mind it was always that people who were going to have surgery were the fistulizing crohnies and other drastic cases that hit hard from the beginning and resulted in constant hospitalizations and surgeries very early on. I just never thought that I could just slowly and progressively get worse and worse. I'm still in the process of coming to terms with my crohn's not just staying at the same level for my whole life. I get lost in thought about it a lot. I'm just not sure what to think about all of this and frankly me being unsure doesn't happen too much either. ;)
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My Butt Hurts

Has your new hours/job helped your relationship any? Are you getting more sleep? I bet you get better quality time with your little boy.
My relationship with my wife is doing better. I probably spend less time with my family but I spend a lot less time with things other than my family/work so there's not so much jealousy about me being awake while my son sleeps and me sleeping while my family is awake and my son needs caring for.

The biggest difference though is that my son has started crawling. He's not as hard to take care of now that he can easily entertain himself zipping around the house on his own finding things to play with. He just needs to be supervised and you can still play with him.

He'll even go out of his way to chase you down and try to tackle you and play with you. There's a lot more fun and a lot less stress now when taking care of him. That, and a lot less holding which opens up my opportunities to contribute as taking care of him while he's on the floor is no problem at all for me. That's lowered everyone's stress level by quite a bit.

The only real trouble left is that he's also starting to teethe so he's having issues sleeping through the night and feeding. But, those are things that are hard to blame on me so there's no conflict between me and the others in it yet (though I'm starting to hear 'make him go to sleep' demands so it may be solidly my fault soon).

Strike that last paragraph. While I was writing this post my wife was trying to put him to bed and he wasn't ready. He started crying when she tried to make him nurse to sleep. She then went off on me demanding that I make him sleep. When I explained that I can't just make him sleep but that I'd be happy to do anything she could think of to help promote that idea she just scoffed. Then she started crying and dumped him outside the door to try to force me to deal with him. I'm just trying to finish this post as my 1 personal thing of the day before I go to bed. He's in here playing at/with my feet now.

I'm getting more sleep, but much poorer quality. I go to bed at about 8 or 8:30PM now. I can't get home any earlier than 5PM so this means that my day consists of get up, work, run some desperately needed errand, play with my son a little bit to wear him out before bed, then go to sleep. There's no time for relaxing or recouping from the day.

I go to bed pretty early but I don't get much in the way of sleep benefits. My son hogs the bed (somehow a 6 month old takes up 2/3 of a queen size bed and leaves me hanging half-way off the edge all night) and wakes up repeatedly to nurse which wakes me up. I used to sleep for much shorter periods but I certainly got more rest then because I was sleeping alone in a calm quiet room. I'm pretty exhausted now. The only reason it's not overwhelming is that my job is so much less stressful physically and mentally.

Just did some more fighting over my son not being ready to sleep (he slept a lot today). I've already spent about 30 minutes trying to dance him to sleep and at this point my hip's given out and I'm limping from the pain. I'm having trouble keeping a hold of him too due to the stress of holding him and playing with him all evening and carrying around my heavy phlebotomy tray at work all day. Oh, and I'm sick and have a fever from the flu shot I got today too. My wife of course is crying and making demands that I fix it all, ignoring my pleas that I'm just not capable of doing it. She just gets mad every time I tell her that we need to take turns and share the work so that I don't get worn out and become useless like this.

I'm just sulking off for a few minutes to try and destress while his grandmother tries to console him for a little while. She's pissed because she's already spent all day taking care of him too while she was at school and I was at work and then while we were off running errands.

I guess things are still bad after all. She's in the bedroom crying and I'm starting to think about leaving if next month it turns out my health/life are in serious jeopardy.
I feel for you right now, I really do.
Pen is dead right. You need to get your boy into his own cot, for your sake and your relationship.
We decided early in the pregnancy, that the baby would not sleep with us at all. He always slept in his cradle, then at 3 months (adjusted, He was 11 weeks early), he went into his cot in our room. At 6 months (adjusted) we moved him into his own room.
As he never slept in our bed it was easier. Friends have made the same mistake. One couple have a 6 year old who has never slept in her own bed.

This helped us get him into a routine, and he has not looked back.

Sorry, don't want to seem like a smug bugger, but our sleep is important too.
My son sleeping with us is NOT negotiable. You have to understand that he is not a normal baby and has never been for his entire life. I'm not saying this because he's specifically my son but because this is the opinion of anyone who spends any significant period of time with him. He falls into the category of a 'high needs baby.'

From the moment he popped out he would scream himself sick if he was not being held. We were dead set against him sleeping in our bed mostly for safety reasons. We didn't have a choice. He can't sleep for more than 15 minutes without being in contact with someone's body. If he even gets over to one side of the bed without one of us in contact with him he'll wake up and scream so much he won't be able to get back to sleep.

This extreme need for attachment and security is just something that happens for some babies. It's just something he's going to grow out of like diapers. Letting him 'cry it out' as has happened a few times by accident will do serious harm to him physically as well as emotionally. It's a well established childhood personality profile in child psychology. Neglecting a baby's desire for affection and comfort and letting those babies 'cry it out' has been well established since the 70s through scientific experimentation in psychology as causing serious long term damage. Doing it to a high needs baby magnifies that damage many times over and is nearly guaranteed to only escalate the situation. I have no doubt that if we took some people's advice and just got some ear plugs he'd end up in the hospital with a bleeding throat and we'd be charged with child neglect.

We don't like that we have an extremely difficult baby to care for, but that's the lot we drew. We can barely care for him with 3 people working at it but I'll happily take a personality type like this that he'll have grown out of after a year or two over something like autism or down's syndrome that would have made him an easy baby.

Anyway, I'm not in the mood to fight with the old ways of parenting and I don't have the energy left either.

It's very unlikely that my wife's PMSing. She hasn't had a period since she got pregnant. Another breast feeding benefit. That lack of ovulation and menstruation makes for good backup birth control too. Not that we have sex anymore.

I think all of this is making me grumpy again.

My Butt Hurts

Like they say about thumb suckers, they won't go to college sucking their thumb. Eventually he'll be out of your bed. My son slept with us because I was nursing, but it was quite hard getting him out of our bed. He could never soothe himself back to sleep without being rocked. Crying it out wasn't an option for us either, he would barf. With my daughter, she slept next to us at night in a co-sleeper, but in her crib for naps, and it was much easier. Soon, you might be able to persuade him to take a nap hugging favorite stuffed animal instead of a person. The older he gets, the easier it will be.

What I really want to say here though is DO NOT have unprotected sex unless you want another baby in 9 months. Your wife WILL ovulate eventually, and it will happen before her next period, so you won't know when she is fertile.
My Butt Hurts said:
Like they say about thumb suckers, they won't go to college sucking their thumb. Eventually he'll be out of your bed. My son slept with us because I was nursing, but it was quite hard getting him out of our bed. He could never soothe himself back to sleep without being rocked. Crying it out wasn't an option for us either, he would barf. With my daughter, she slept next to us at night in a co-sleeper, but in her crib for naps, and it was much easier. Soon, you might be able to persuade him to take a nap hugging favorite stuffed animal instead of a person. The older he gets, the easier it will be.

What I really want to say here though is DO NOT have unprotected sex unless you want another baby in 9 months. Your wife WILL ovulate eventually, and it will happen before her next period, so you won't know when she is fertile.
Thank you for the support. People with 'easy' babies really don't quite understand how infuriating it is when they start demanding and chastising those of us with more difficult to care for babies.

I don't think you have to worry about us having any kind of sex with her pissed off all the time, a baby in the room at all times, and no one willing to watch him while we run off and have sex.
Hi Colt,
I'm a little late but welcome to the Forum, if I haven't previously welcomed you.

I don't think you have a thing to worry about with the baby sleeping in the same bed as you and your wife. Especially since she is nursing!

Our youngest son, slept with us until he was talking and off the breast.
He is now 33 and I do not see any harm was done.

In fact he has two children of his own and the baby sleeps with them at night.

I think it's great for bonding and also easier to nurse without having to get up.

I'm sitting here smiling as I recall the days of having a wee one between my husband and I at night. :)

Hope you feel better real soon!
Healing hugs~Nancy
This is a very rough morning. Now I'm worried about what might be a perianal fistula, I haven't had a significant BM in 5 days, I'm in a ton of pain despite an ibuprofen and 2 darvocet, and I'm reading up and have just come to the realization of just how common fistulas are and that they're even more common when you add in the types of issues I've had. Until today I was under the impression that fistulas were there from the beginning or not. I didn't realize that they can be triggered by the high pressure behind strictures or that my anal fissures themselves can lead to fistulas. I feel like my head's going to explode. Well, right after my rectum which feels like it's gaining more and more pressure and causing me more and more pain.

Panic and worry about when to go to the ER time...