Dipping my toes in.

[CrybabyCrohns]

Hi, new here. Please don't consider my name disrespectful to anyone in the group, it's what I called myself while I was dealing with medical professionals who weren't very sympathetic or really paying attention.

I was diagnosed with Crohns in Feb 2014 after a two year journey through the medical system. I say diagnosed with because I still don't think it was Crohns, and that is why I'm here. It's one thing to have doctors throw labels on things but I'm a lot more interested in exchanging information with people who've experienced the disease. My heart goes out to you, I understand the suffering. There are no words.

My story is very long. I'm 50 now, and I like to start way back when I was about 21. Fortunately, there's a large gap of about 27 years where nothing changed but the last two years, quite a lot happened and some of it is my fault, and some of it isn't.

When I was 21, I started to get the dreaded diarrhea, pretty much every day. I was never sick, or tired, or truly uncomfortable except for the whole must get to a toilet very fast for immediate relief, though it was darned inconvenient a lot of the time. No weight loss, no fever, no blood and nothing I ate seemed to make it better or worse. No other symptoms at all. So off I went to the doctor after a few months (remember, I wasn't "sick" and I'd always been healthy so I waited to see if it would either clear up or other symptoms would come along), and went through the stool tests, which showed nothing.

So at that point, you get tagged with IBD. The medical community can't explain it, or cure it so you learn to live with it. In my case, it meant often planning when I would eat if I had to go out later. What I ate made no difference at all, and I tried everything.

At about age 31, I started getting migraine headaches, which only Advil (an NSAID) would stop. Before that, I'd only ever taken the occasional Tylenol. These headaches escalated over the next 16 years or so, to at least once a week if not more.

One evening in Feb 2012, I started feeling poorly, nausea. In my life, this was unheard of. I think the last time I'd felt like that was during the first 2 months or so of my second pregnancy, morning sickness (only lasted an hour or so then). Unlike morning sickness, I did not feel better after barfing. Nausea and vomiting for a couple of hours, the feeling went away. I assumed maybe food poisoning, and didn't worry about it. Then it happened again about a week later, same event. It wasn't until the 3rd time that it twigged for me that I was having attacks, probably gallbladder. At around the same time, the diarrhea started getting worse, more liquid and more urgent. And more burning. I assumed the two were connected, it seemed reasonable.

Like almost everyone these days, I went to Google and discovered that a poorly functioning gallbladder can cause what is sort known as Habba Syndrome. It's not widely accepted (by doctors) but it sure sounded like what had been going on with me for years.

So off to my family doctor, and I got booked for an ultrasound which showed some small gallstones. So yes, my problem very likely was that. I was referred to a surgeon as part of the process towards getting it removed.

Around about March 2012, I met with the surgeon to go over my medical history (blank, except for the (now worsening) diarrhea. He was (quite rightly) concerned about that and when I said I felt it could be linked to my failing gallbladder, he said that it was absolutely not, and he wanted a colonoscopy before the surgery to make sure there was no colon cancer. Fair enough. In spite of the attacks, and bonus diarrhea, I felt just fine. No fever, no weight loss (insert sad face), no blood, nothing.

Things trudged along until July 2012, when the attacks started coming more frequently. One of them was bad enough and lasted long enough that I broke after 6 hours, and my husband took me to the hospital where I was horrified to be given morphine for the first time ever. It worked. I believe it was in August 2012 when I had the colonoscopy. I was getting a bit worn out by then but kept telling myself I could do it, I could hang in there. The colonoscopy came back clean. I was relieved but not terribly surprised. I assumed if there was something seriously wrong, I'd feel sick, weak or tired in some way, or lose my appetite. None of this happened.

So then it was waiting for the surgery to get the gallbladder out. It was booked for early Dec 2012. Around about late Sept, the attacks started coming every evening, but didn't last that long, half hour or so. Then about Oct 2012, they started coming during the day and evening, lasting only minutes. Now I know that doesn't sound too bad, but it wears you out. You're afraid to eat, you can't go anywhere (people, family or strangers, get alarmed when you randomly drop to your knees and beg for a speedy death).

I did call and tell them that at this point, I was suffering, there wasn't another word for it. They recommended Tylenol or Advil for the pain. Which would have been great if I'd been able to keep anything down reliably.

Through willpower (and that they would not move my surgery date forward because I had no other health conditions like diabetes or heart trouble, and would therefore not die) I made it to my surgical date. I remember them being all nice while I was on the table in the OR, explaining things. I remember telling them they could operate with a chainsaw for all I cared at that point. They laughed. Whatever.

Recovery was uneventful. It was laprocopic surgery, and I had no surgical pain. Even that ache you get in your shoulders afterwards from the air they blow in so they can see was next to nothing. I didn't need painkillers. What I needed was a tuna sandwich, something I'd been dreaming about eating, without paying a painandvomiting penalty, for weeks. Food!

I was great for about 3 days. The surgery had been on a Tuesday, and then Friday evening, sitting hemming some pants, I had what felt like a gallbladder attack. And so begins the next stage of health journey.

Apologies for the length of this, and I'm stopping for now. I'll try to get to the next installment shortly. I think I need to tell this story to people who will understand.

 

[CrybabyCrohns]

It being a Friday evening, I couldn't take the surgeon (let's call him Dr. T.) up on his offer to contact him if I had any problems. Rough weekend, I couldn't eat anything without dropping to my knees after a couple hours, so I basically didn't eat. Starving. I waited until Monday, and called in right away in the morning. His receptionist offered a surgical followup in the second week of Jan 2013 - I'm frankly not sure she understood that I was completely unable to eat without pain and vomiting later. It's like they don't hear. Anyway, I refused that and repeated that I was in big trouble, and she managed to get me in the following week. Again, outside of the laughable attempts to nourish myself, I felt just fine, so I hung in there, again.

The surgeon was very nice, and I told him what was going on. He asked about diarrhea (very common in those who have their gallbladder removed) and of course, I was having that (used to it, and expected it anyway). He prescribed a bile acid sequestrant (that I still refer to as orange sand flavoured grit), which nailed the diarrhea to the wall (take THAT!) but did nothing to ease the pain, nausea and vomiting that followed a couple hours after I tried to eat. I wanted to give it a chance, and make sure things were healing up, so I waited another couple of weeks. He also booked an ultrasound, which showed that there were no troubles with the surgery.

The nausea, vomiting and pain took over life in our house. At that point, my family was beginning to get quite concerned. It's rough watching someone suffer. So I made an appointment with my family doctor, to see what she thought about things. Her take on it was that abdominal surgeries can take up to 6 months to heal up and I should give it some time.

I made up my mind to man up, so to speak, and give it time. That lasted two weeks, at which point I decided that there was something really wrong, and I needed help. I called my family doctor again, and made another appointment. In the meantime, I was going to Google to find out what can cause a person to be able to eat, then regret it 2-3 hours later, with the signature being hours of pain and vomiting. Google said maybe an ulcer, so I insisted on being tested for the bacteria that causes ulcers.

This would have been late Feb 2012, and I made a discovery on my own about this time. I had had a light headache, so I took some Advil, and that night, no pain, no nausea, no vomiting. It also occurred to me that since the gallbladder came out, I hadn't had a migraine (and to date, almost 2 years out from the removal, I still haven't had a migraine). The nausea and vomiting were from pain, not from, like, being sick! So I started taking Advil every day, and a good dose of it, too. I tried Tylenol (I'm not stupid, I know Advil can rot your stomach and I wasn't looking for MORE problems) but Tylenol didn't work.

I was also trying to see if it was something to do with diet. I know people might have to adjust what they eat after a gallbladder removal, and there can be a period of time where they learn what works and what doesn't. In my case, everything seemed to set me off but I did try low-fat, no-fat, vegetarian, soft-cooked mild veggies pureed, no dairy, no gluten, alone and in combination and it made no difference whatsoever. If I ate anything bigger than the mass of an Oreo cookie, I regretted it about 2-3 hours later and for up to 6 hours at a stretch.

The test results for the bacteria that makes ulcers take a week to come back. It was an eternity. And they came back negative. I cried. I was prescribed proton pump inhibitors - drugs that reduce the amount of acid you produce. The only result from that was I felt even worse, so I stopped taking them. I got booked for an oral scope (that thing they stick down to your stomach). That was with the original surgeon, Dr. T. I told him what was going on again, and that I'd discovered Advil helped a lot. He told me it could cause an ulcer and I should not take it. I told him that stopping was unacceptable in my current state, unless he could offer an alternative, which he couldn't or wouldn't. The oral scope showed some irritation of the stomach (probably from the Advil) but no ulcer.

He prescribed the antibiotics given for an ulcer anyway. For the first week on the antibiotics (during which I also took Advil, being afraid of vomiting for 6 hours a day into the week hours of the morning, every day, I'm such a coward), I felt a bit better. I also got thrush and my first yeast infection in over 30 years. Yay! I started feeling bad again in the second week, and soon, it was to where I was back to post surgical condition. I did not give up the Advil, I increased the dosage as my symptoms got worse.

Dr. T. didn't want to see me any more. He did book me into a CT scan, scheduled for Aug 2013 - 7 months after the surgery. I just had to hang in there, again. Every night was hell-night. I took to sleeping on the couch because laying down flat seemed to make things worse, and my husband needed sleep so he could go to work the next day. I lived on the couch, sleeping in 1-2 hour snatches. I was either in distress or I'd wake up hungry. That was my life.

A week before the CT scan was scheduled, it was bad and getting worse and I didn't think I could make another week. I found out/remembered that I could go across the river into Quebec and pay for a CT scan and get it done immediately. A chorus of angels sang, and I immediately called my family doctor for the requisition. She was on holiday. So I called Dr. T. and he was on holiday. Then I cried. I suppose I could have bullied another doctor into getting a requisition for a pain CT scan but then had no doctor to act on the results, if any. I tried the urgent care clinic to see if I could get some help with the pain, but the doctor there was no help. I was concerned about the amount of Advil I had to take to exist, and he told me that the proton-pump inhibitors would reduce the stomach damage Advil might do.

Bearing in mind, through all this, no diarrhea, no constipation, no fever, no appetite loss (I'd have killed for that one). Fair bit of weight loss, but that was from eating as little as possible, once a day or once every two days if I could manage to hold out that long. Jenny Craig, eat your heart out.

Finally got the CT scan, and a few days after that, Dr. T's office called for an appointment to review the results. Dr. T looked pretty happy about it. I was there with my husband (driving was beyond me at this point, there was no way I was healthy enough to drive), and the results showed inflammation in the last 8 inches or so of my small intestine. He suggested it could be Crohns and I needed to follow up with my family doctor and a gastro guy. I was pretty happy about this, something WAS wrong and it was something that could be treated/managed somehow. My family doctor, her husband has Crohns, so I made an appointment with her right away,no need to wait for the specialist gastro.

She prescribed I think Pentasa and something for pain. My memory gets a bit dim at this time as I was existing mostly moment to moment but I think it was at this time that I mentioned that I was feeling a heavy pulse in my upper abdomen. I was told that was normal - but it new to me and I wondered if it was a new symptom. Meanwhile, I was getting worse and couldn't manage my own drugs. My husband took that over. It finally got to where I couldn't deal with the distress every damn day any more, just could not do it, and on that evening, we made our first visit to the hospital emergency. We brought all the drugs with us, so the attending doctor could see what I had been taking. They gave me intervenous morphine again (second time!), which helped a lot, and that doctor gave me a prescription for morphine, which we filled at a drugstore on the way home. That doctor, Dr. O, heard the intestinal inflammation and it was like a light came on her face, and she said Crohns. And that my family doctor or gastro might want to put me on a course of Prednisone to see if that helped. She also said that if the pain was that bad, the amount of morphine I'd been given shouldn't have helped. I guess she wasn't listening to the part where I'd been in more or less a state of distress a long time and that made that distress distressful.

CryBabyCrohns was born that night.

So, I went to see my family doctor the next day and told her about my hospital visit. She did say at that time that it didn't sound like crohns. She did prescribe prednisone, and so I felt that what could be done for my "crohns" was being done and I should start feeling a bit better soon. That lasted two days, when I ended up in the hospital again, but I got lucky this time. I got an ER doctor with a sense of curiosity. Dr. Shaw. He was an intern, not yet a doctor but that man saved a life.

When we went in, I was fully into the wave of pain, nausea, vomiting so he got to see that first hand. I got a shot of dilaudid, which got me out of the spiral and we were able to tell him my history, the surgery, the CT results. He asked some questions, and then went off to see the CT scan results himself (it's all computerized here, so he can access my records, neato). He came back in the room with this funny look on his face, and asked me if I was aware that my IUD was no longer in my uterus.

[Background: I'd made shift to have that IUD out years before, but it didn't show up in the ultrasound they did to find it, so they assumed it had fallen out. I didn't pursue that, didn't see the need. They do check for it in case it may have migrated into the lower abdomen, and they didn't find it there, either, because....]

We (my husband and I) were totally shocked to be told that the IUD had migrated up under my left rib cage. It showed on the CT scan. We knew that that somehow had to be my problem, or a good part of my problem. Dr. T. had NOT mentioned that at all during the consult on the CT scan results.

Dr. Shaw kept me for the night in ER. His superior was sure it was just crohns (shiny, shiny intestinal inflammation), but Dr. Shaw wasn't so sure about that, and also didn't have the seniority to pursue the IUD further. After the first shot of dilaudid wore off, I went back into the downward spiral, vomiting, pain and got another shot. Whew. In the morning, I was offered more pain meds, which I declined. I wouldn't need them until the evening, and then only if I lost my head and tried to eat something. I told them I might see them that night, depending on my willpower. So hungry.

Then, I called my family doctor again. She hadn't gotten a copy of the CT report, so I went to see her right away and she had it faxed over from Dr. T's office. I read it myself. They're easy to read, pure text, in my case, a bit more than one page long and the IUD was mentioned twice in that report. Why Dr. T. didn't see fit to mention it to me, or at least forward that report to my doctor for further followup, I do not know. She was getting to where she didn't think it was crohns either, and at this point, I was finally prescribed narcotics in the form of dilaudid and fentanyl patches.

So now I was in line to see a gastro, and a surgeon who could remove that IUD. You'd think things would swing into high gear at this point, but you would be wrong. Very, very wrong. So wrong.

I had difficulty with the narcotics. I was getting worse daily, and I would only take them when I needed them, and at that point, keeping them down long enough to activate was maybe 50/50. So I was back at emergency almost every night, to get a shot for pain (you can't throw those up!) and telling various doctors my story, after which they all predictably diagnosed crohns and told me that the IUD couldn't be causing my problem. The only bright spot in there was if I remembered, I'd make my husband sing Soft Kitty to me while we waited for the shot to take effect. To his credit, he has a nice voice and he always did it.

At one point, they called down for a consult from gynecology and three doctors came down to tell me how that IUD just couldn't be my problem. And too look at me like Crybaby Crohns. Sigh. Meanwhile I was getting worse, and within a week of being on the prednisone, I started having attacks when I hadn't eaten anything at all. Frightening. The worst one ever was the night before my "baseline" (and second - the first was about a year before, and clear) colonoscopy for the gastro, prior to our first consultation. I darn near cleared the ER out that night, I don't remember what I was screaming but you could hear doors closing. Then the shot kicked in. Whew. The ER doctor looked at me like Crybaby Crohns.

The second colonoscopy, I don't remember much. I remember the gastro (we'll call him Dr. S.) trying to tell me how to taper off the prednisone, and I remember turning my head away and telling him I couldn't track what he was saying. He got with my husband and they sorted it out. That colonoscopy showed inflammation, and Dr. S. told me to stop the Advil immediately, which I did. I had the narcotics now, and frankly, I was looking forward to dying quite eagerly by that time.

That was Sept 2013, first week or so. Another interesting (I was past alarming) symptom developed. When the pain started, I started to bloat, and I mean fast. I looked 5-6 months pregnant within about 20 seconds. We took videos, it was so stunning. No doctor wanted to view that, though, sigh. A couple weeks after that, I had the consult with the department that would remove the migrated IUD. We went in there, very hopeful because we were so such that it would resolve my issues like all the treatments for Crohns hadn't. Went into the consult room (my husband with me, had to have him as I wasn't really tracking much by then, and wasn't much for memory either in terms of meds and events). Told the nice lady doctor my whole recent history and tried to impress on her the suffering. It seemed to go very well, except for the part where I mentioned that Dr. T. hadn't told me about the IUD during the CT scan consult. Apparently they work with him, and I was told in a very frosty cold way that he's a very good surgeon. Might be so, but he sucks at giving results from a text report. I didn't say that, I got the point. I told her we were waiting for results on the most recent colonoscopy regarding crohns, and she sort of smiled and said yes, I had crohns. Oh well. So I asked how long until the IUD could come out and she smiled again and said about a month.

I lost my mind. My vision went to TV fuzz, I lost vision. I lost hearing. I broke so hard. I guess that's what a hysterial fit is like. I remember hitting the wall and yelling and not too much else for a while. I remember holding on to my husband and crying, wailing really, asking why they wanted to hurt me so bad, why did they nod and smile but not listen! I was angry. I gave up. I wanted to die.

Turns out, I should have had a hysterical fit a long while before I did. That got action. The surgeon came in and once I got calmed down, he said I could have the IUD out within 24 hours on standby but it meant waiting in the hospital without eating. Not eating? Really? They hadn't heard a word I said. By that time, I could go 3 days without eating. Bring. It. On.

And so, that's what we did. When I woke up after the surgery, one of the students doctors checked in on me and told me that they got the IUD out, along with the big abscess around it and 1/4 of my omentum. I went home the same day, and again, no surgical pain but the shoulder pain from the air, wow. That was 3 days of OMG aching. Yay narcotics!

And food. I hadn't eaten in almost 3 days. Even by my willpower standards, I was at the end, I had to eat something, I was so hungry, so hungry. So I had some toast (dry) and a fried egg (dry fried). No pain. No vomiting. That was the most I'd eaten in months, and it stayed down. I slept for 6 solid hours IN A BED! I hadn't done that in almost a year.

A week after that surgery, I had my first consult with the gastro. Again, my husband was there. He was a great guy. I told him I'd already been told that I had crohns. He was a little upset, since he's the specialist and he hadn't diagnosed crohns at this point. He also mentioned that after he saw me for the colonoscopy, he'd asked the surgical unit to move on getting that IUD out. I asked him about the years of diarrhea, which worsened with the attacks and he thought that it was due to years of a bad gallbladder. Take THAT, Dr. T. Anyway, he felt that the intestinal inflammation I'd experienced was a result of my intensive use of Advil, so if I had no further problems, things should be fine but I shouldn't take Advil again. No sweat. But I had to have a followup CT scan, just to check on things. Fine.

I went in for the surgical followup, 6 weeks later. That's almost 42 days of eating _every_ day. And no vomiting, no pain. From the previous reaction when I dared question about Dr. T. not telling me (or my family doctor) about that migrated IUD, I now knew that there's a pecking order in medicine and I am a piece of corn. When I asked this surgeon how big that abscess was, he downplayed it, and called it a little irritation. I don't think they take out 1/4 of any organ for "a little irritation". He further said that he didn't think that IUD had caused any of my problems. Really. I thanked him and left. What other choice was there?

Meanwhile, things started going downhill again, and after being good for a while. The inflammation came back. I hung in there until I had another colonoscopy in Feb 2014, and the gastro put me back on a course of prednisone. Unlike the first time, where I felt worse and worse, within 22 hours, I was 100% better. It was magical, I can't express it enough but a miracle. He also put me on Imurine? Not sure of the spelling. I don't know if it's doing anything but it kicked the ass of my psoriasis, something that no medication has ever really helped much. Bonus. And I've had no further trouble since.

Now that's the background that takes us to my doubt on my Crohns diagnosis. First of all, a migrated IUD (especially how far mine went) is so rare. A bad gallbladder, less rare but still not exactly an everyday thing. And the overuse of Advil, again, not completely rare but all of these things in combination, at the exact same time? I can't help but doubt.

My doubts are further elevated having done a pile of research, and I don't mean on sites that promise to remove wrinkles in 30 days. I mean hard medical research. I ran across at least two papers that suggest that the intestinal damage of NSAIDs (which is only recently becoming more known and studied) doesn't stop when you stop taking them. It can go for up to 16 months after you stop. Research also suggests that proton-pump inhibitors actually worsen the effects of NSAIDs on the intestines. Take that, random doctor from the urgent care clinic. So maybe the ongoing inflammation was NSAID related.

The last chapter in my saga was going through withdrawal from the narcotics. I was on them long enough to become dependent. I did some research on withdrawal, so I'd know what I was in for, and what works and what doesn't. I did not ask my doctor for help. Help seemed to involve yet more drugs, and I wanted less drugs, not more! So I tapered off on them, and then stopped. Withdrawal sucks. The only thing that kept me going was telling myself I'd never, ever do it again, no way would I allow such a thing. I'm clean now. I'm healthy. I eat well. I sleep well.

I lost two years of my life and it's up to the reader to decide if that was Crohns or a migrated IUD. Or a combination.

I learned a lot, though. Now I ask to see test results. And I'm aware of how much doctors don't know that might hurt you.

I think I found out what happened with that IUD, too. If you look up superior mesenteric artery syndrome on Wiki, the only thing missing is my picture.

 

[worriedboy]

Hi.
You are a real hero. I wish you a healthy life and should you never ever know such pain again. I read your whole post, 1 breath. No stops. You are a brave woman with an amazing willpower.

IMHO the combination was causing your issues, and may it much more difficult to treat and track down, since usually our mind assumes a single problem that has to be "tracked down".

It's very good to hear that the imuran is controlling your Crohns and your Psoriasis as well ! Looks like your gastro is know what he is doing.

Out of curiousity :

- Are you going to be treated for your Crohns at the same gastro clinic ?
- Were you able to taper off the prednisone ?

Thanks for sharing your story. All the best to you.

 

[CrybabyCrohns]

I have a gastro doctor, I'm not aware of any gastro clinics here and I haven't been referred to one. The only prescription med I take is the Imuran.

Round#1 of the prednisone didn't help at all, it made my symptoms worse. My theory is that since it depresses the immune system, it made the abdominal abscess worse - noting that use of prednisone is absolutely contradicted if there is an abdominal abscess. That makes sense. I was tapered off of that by my husband, I was in such a poor state that I couldn't track medications at that time. It was fine.

Round#2 of prednisone worked great, and so fast. The abscess was out then, and I recovered my whole life back within 24 hours, like magic. I was able to comprehend and handle my own meds after the first day, and the taper was fine.

The side effect I got from prednisone both times was insomnia. I didn't get the moon face or any of the other things that can happen.

Bear in mind that although I have been diagnosed with Crohns, I have a lot of doubt about it, given the cascade of things that went on. I read the personal accounts here, and it only increases my doubt about that diagnosis. Of all the Crohns jolly-bag of misery (and I can relate!), the only symptom I've ever had was that inflammation. Nothing else at all. And NSAIDs cause the same inflammation, and I was a heavey user for a few months.

I can eat what I want these days (ever since Round#2 of prednisone), and nothing bothers me at all. The only diarrhea I've experienced was during and after the narcotics withdrawal, which is quite normal. It went away.

I have an appointment with the gastro to followup in December, and I think he might want to do a CT scan or colonoscopy to check stuff, which is fine, but I can tell that there's nothing to see, I'd know. I feel just fine.

I do want to stay on the Imuran, for the psoriasis. It's not a drug that is used for psoriasis, though. But, they went to a lot of trouble to finally diagnose Crohns, and they hate being wrong (or questioned!), so they're much more stuck with that diagnosis than I am, so I assume I can keep on the Imuran. It's the only thing that's worked for my psoriasis. Silver lining? Perhaps.

 

[my little penguin]

Sorry for your issues but it sounds like crohn's on top of the iud gallbladder stuff .
The pred may not have been able compete with the other two things going on.

Did you have a pill cam?
Fecal caloprotectin study ?
Most of us don't want it to be crohn's .
DS had no bloody D just lots of nausea vomiting and abdominal pain.
Three Gi 's at two separate hospitals and two separate pathologist declared crohn's.
His biopsies showed epitheloid non caesating granulomas so the dx list was very short.

Pred plus Imuran can get crohn's under control so not seeing anything on a ct scan or scope would indicate that not the other way around.

Sounds like your in Canada can you get a second opinion?

 

[CrybabyCrohns]

No pill cam. Darn, it took 7 months of ongoing daily trauma just to get a CT scan. I'm not sure what symptom I'd have had to demonstrate to get a pill cam, but it would have had to involve a lovely lot of blood, methinks.

It's true that I had stuff going on, that's part of the reason I'm doubtful. This stuff coming one, or two at a time, well maybe. But all of it at the exact same time? And none of it is exactly common, and the one thing (far-migrated IUD) profoundly rare? My inner skeptic is raging.

The second round of prednisone took out the inflammation quickly and I've had no issues at all since then. I was put on the Imuran at the same time as that, but I was started at a very low non-therapeutic dose because my bloodwork showed that I don't metabolize it in the way they wanted to see it (something about genetics) so they went slow. I didn't get up to a therapeutic dose until 3+ months after the second round of prednisone.

I did have one fecal study but I guess it didn't show anything. That was before the CT scan. Dr. Shaw, the intern who filled me in on the migrated IUD, did bloodwork while I was in the full attack, and he said it didn't show the inflammatory markers of Crohns. I wasn't entirely tracking at the time but I'm fairly sure he said that.

I got lots of opinions from various doctors at the hospital, all the times I ended up at emergency. They were all Crohns, Crohns, Crohns and if I'd listened to them, I'd be dead now. And not from Crohns

My history of diarrhea, I'm sure raises some eyebrows. But like I said, it just was. I was never sick with it, or sore (in the lower right hand area, or any other area, like I was with the inflammation) and nothing I ate or drank (and believe me, I had 25 years to test that out) made an iota of difference, good or bad. It just was. I'd looked into Crohns as a possible cause but it just never seemed to fit. IBS was a better fit, but now they are discovering that gallbladder is a common cause of that.

So yeah, I'm feeling ok with having some doubts. But if it is Crohns, I seem to be in full remission. There is nothing I eat or drink (and I don't restrict at all, because I like to test) causes me any trouble whatsoever.

 

[UnXmas]

Sorry to hear you've had problems for so long!

No pill cam. Darn, it took 7 months of ongoing daily trauma just to get a CT scan. I'm not sure what symptom I'd have had to demonstrate to get a pill cam, but it would have had to involve a lovely lot of blood, methinks.

I think what tests you get depends more on the individual doctor. You'll probably hate me for this, but I've canceled a pill cam my doctors want me to have (I'm too afraid the camera will block my stoma). But it was ordered despite the fact that I'm not presenting any symptoms that would make a pill cam useful, it's just that I happen at the moment to have a very thorough doctor who wants to rule everything out. I'm already diagnosed, but from my most recent endoscopy and an MRI, not enough inflammation was found to account for the amount of weight I've lost and my inability to regain it. For some doctors apparently that's enough to justify a pill cam, but I've had the weight issue a long time and other doctors never suggested that test. For what it's worth, my doctor doesn't expect it to show anything that wasn't already found on the endoscopy and MRI, so if you can't get a pill cam, it's probable that doesn't mean your doctors are missing something major if you've had quite a few other tests.

'd looked into Crohns as a possible cause but it just never seemed to fit. IBS was a better fit, but now they are discovering that gallbladder is a common cause of that.

It's very interesting to read this, as so many people on this forum hate the IBS diagnosis. Many (including me) feel it's not a real diagnosis - it's what doctors call digestive symptoms when they haven't found the actual cause, and dismiss it as not serious. And many people then go on to find out later that they actually have Crohn's or something else. IBS often seems a good "fit" though as it encompasses so many different symptoms, many of them vague or general, which could be caused by any number of other things.

I get what you're saying though about Crohn's seeming unlikely, though there are atypical presentations. Ultimately a Crohn's diagnosis should be made based on objective test results and not on symptoms. But if your doctors have not produced conclusive results, it's quite possible that you have a much better idea of the possible things wrong with you than they do.

I know how frustrating it is - I have multiple medical problems, and spent a long time finding diagnoses for them. One thing I would say - take a break from seeking diagnoses and explanations if you need to. Dealing with difficult doctors and endless tests is stressful, and you've been doing it a long time. Perhaps see if you can find a doctor who will concentrate on managing your symptoms regardless of the diagnosis, or take a break from doctors all together - assuming your symptoms do not change. Ironically it was after I'd given up on the idea of a diagnosis, after years of not knowing, and accepted I would never have an answer, that my main medical problem was finally diagnosed. And it was a bit of an anti-climax - I was still ill; I still have problems with doctors thinking I'm sicker than I am or that I'm not as sick as I am; I still go through endless tests and hospital admissions.

Ultimately you want to be able to live as well as possible despite your health troubles, and have as much of a life outside illness as you can. Sometimes (often a lot of the time) the sheer severity of physical symptoms will dominate what you can do, but you may find you can make it less dominant in your thoughts. If a doctor gives you an opinion you know is wrong or is insulting to you, don't dwell on it. Don't spend too much time thinking about what tests you need or trying to figure out what's wrong with you. Researching illnesses, tests and treatments is good - as long as you can compartmentalise and not think about it when you are doing other things. But perhaps you're doing this already - I realise that your posts here are probably not representative of your thoughts overall.

Whether you have Crohn's or not, people here share you experiences of managing chronic illness and dealing with doctors.

 

[CrybabyCrohns]

Thank you for such a well written and thoughtful reply.

I feel a little bad joining here, being that I'm not suffering like so many here do, and have for so long. I'm not even convinced I have Crohns (though I know better than to challenge the gastro on it - they really don't like it). I do know all about hanging in there, hoping things get better, though.

A pill cam would be a waste on me right now, as I'm not in a flare, and I'd be taking up space and bumping down someone else who might need it badly. Same thing with CT scan or yet another colonoscopy, although I'm pretty sure I'll end up with one of those in December, when I see the gastro again. It'll be more to settle his mind than mine - I can feel, I'm just fine.

I'm sure that the IBS diagnosis is just as frustrating for doctors as it is for patients. There's nothing to "fix", there are only management techniques that may help a bit. But...all those years, I kept searching for a cause for the diarrhea (with a complete absence of any other symptoms - you'd think something else would have come along to keep it company, but no) and I never saw gallbladder come up until I knew mine was ailing. It was the piece of puzzle I had been missing. My gallbladder surgeon was absolutely certain that the diarrhea history was nothing to do with the gallbladder (thus the first colonoscopy, which was clean and no inflammation), and my gastro said the diarrhea absolutely was from the ailing gallbladder. Very enlightening from a patient perspective. [BTW, gallbladder causing IBS is an easy test. Get your doctor to prescribe a bile acid sequestrant (very, very safe) and see if it helps. If it works, it'll be almost immediate.]

My understanding of Crohns is that there is no definitive test for it, it's diagnosed from a constellation of symptoms. No-one knows what causes it, either. My own diagnosis came along simply because the inflammation came back. Until then, the gastro was fairly confident that it was the NSAIDs. Since then, I've found two research documents (the pill cams really opened up research) that show that inflammation from excessive use of NSAIDs can take up to 16 months to resolve, after the NSAIDs are stopped. Room for doubt? I'd say so but only time will tell. Does my gastro know about that research? It might not matter because...

As for what doctors know and how they know it.... how they treated women for "hysteria" is good for laughs, but the history of ulcer treatment is more recent. 30-40 years ago, everyone knew, all the gastros and doctors knew for certain that ulcers were caused by spicy foods, smoking, stress, chewing gum. The Aussie researcher who discovered that the vast majority of ulcers are caused by bacteria had his research laughed out of the room when he presented it. It took decades to become mainstream, and for treatment with antibiotics to become the standard. It's like a bad movie plot.

I don't know if those pill cams will crack the Crohns mystery. I sincerely hope so because there are so many answers waiting to be found, and you have to keep looking with your eyes and mind wide open to find them.

 

[UnXmas]

I've heard the thing about ulcers before, I'm sure the same applies to so many things that the medical profession still holds true today. One day they will stop saying that IBS is caused by stress, or that IBS exists at all.

My understanding of Crohns is that there is no definitive test for it, it's diagnosed from a constellation of symptoms. No-one knows what causes it, either.

Crohn's isn't officially diagnosed based on symptoms. Some illnesses are, but Crohn's is usually based on signs (illnesses based on signs are more clear diagnoses than ones based on symptoms). But you're right there is no one definitive test for it, and the cause(s) aren't fully understood.

Sorry, I'm probably not going to explain this well, and may well have got a bit of it wrong, so I hope someone else will come along and correct me if I have!:
As understand it, "symptoms", in official doctor-language, refers to what the patient subjectively experiences, while "signs" are the more objective features of an illness, either observed by the doctor or apparent on test results. So some typical symptoms of Crohn's would be diarrhoea, stomach pain, bloody stool, etc. Signs would be inflammation observed during endoscopy or on biopsy, certain markers in blood tests, a high temperature, etc.

My own diagnosis came along simply because the inflammation came back. Until then, the gastro was fairly confident that it was the NSAIDs. Since then, I've found two research documents (the pill cams really opened up research) that show that inflammation from excessive use of NSAIDs can take up to 16 months to resolve, after the NSAIDs are stopped. Room for doubt? I'd say so but only time will tell.

My knowledge of the science here is even more dodgy, so bear with me and I'll see if I can find some links to proper information in a bit, but as far as I know, the pattern, location, and appearance of Crohn's as seen on endoscopies and in biopsies tends to have typical features. There are many causes of intestinal inflammation, but they can usually distinguish inflammation from Crohn's from inflammation that's resulted from other causes. I had an upper endoscopy recently, and my doctor could apparently tell that some of the inflammation they saw was the result of bile reflux, acid reflux, and from having an NG tube down my throat recently. On the other hand, I've read on this forum of people whose doctors have had difficultly distinguishing Crohn's inflammation from Ulcerative Colitis inflammation, or just end up being told they have inflammation with no cause given. Do you know if the inflammation from NSAIDs is easy to distinguish from Crohn's? I also wonder if it's possible that you may have both, since apparently I have inflammation from multiple causes.

I'm sorry if I missed this in your posts, but I'm not quite clear - you don't feel the Crohn's diagnosis is correct in your case? And you're not hoping for a Crohn's diagnosis? (I know that hoping for a diagnosis would sound odd to many people, but I'm sure you're very well aware of how in certain situations, it is very natural to start hoping for a diagnosis, whether a specific diagnosis or just any diagnosis.) Of the diagnoses and possible diagnoses doctors have given you, which do you feel apply, and are there any that you think apply but which no doctor has yet told you you could have?

I'm just trying to get an idea of where you are with finding out what's wrong with you, whether you're at a point where you want to push for more tests or whether you feel you've found out enough to feel you understand what's wrong, even if not all doctors agree with you.

I feel a little bad joining here, being that I'm not suffering like so many here do, and have for so long. I'm not even convinced I have Crohns (though I know better than to challenge the gastro on it - they really don't like it). I do know all about hanging in there, hoping things get better, though.

Don't feel bad. I think there's always a whole range of suffering going on with all the members of this forum, and you've certainly had to struggle for a long time. Many here are undiagnosed, check out this support group thread: http://www.crohnsforum.com/showthread.php?t=13113 . Dealing with doctors, tests, managing symptoms and treatments every day, living with the embarrassment of bowel problems, managing diet when you've digestive symptoms; there's more than enough reason to want support and information even if a diagnosis of Crohn's is at present only a possibility.

 

[UnXmas]

This is a good site:

http://emedicine.medscape.com/article/1986158-overview#aw2aab6b8

That link is to the bit about biopsy findings in Crohn's, check the menu on the left for other areas of diagnosis, etc.

It's for professionals so it's a bit sciency, Wikipedia is also always good!: http://en.wikipedia.org/wiki/Crohn's_disease#Diagnosis

 

[baistuff]

Let me add an doc's opinion here.

There are way too many variables here for even Dr. Crohn or Oppenheimer themselves to make heads or tails of this.

Once you are feeling well enough, It may be worth while to stop everything, get labs (including an ANCA, ASCA,) a repeat scope with biopsies, MRE.

Crohn's is an umbrella term to describe idiopathic inflammation anywhere in the intestinal tract, most commonly the terminal ileum and colon, but can be anywhere. NSAIDs certainly could have been the cause, same with infection. However, if after being off NSAID's for several weeks/months inflammation returned, that puts crohn's higher up on the differential.

Keep in mind a very high number of crohn's patients remain with mild disease for years and decades and others even with significant disease can have signifcant periods of remission/quiet. Quite often "sublclinical" disease (present disease without symptoms) can occur as well.

BTW, Crohn's increases risk of gallstones. Could be a chicken/egg scenario.


Good luck.

 

[movielover40]

Glad your feeling better...

Great story

 

[CrybabyCrohns]

Thanks for the responses, I really do appreciate the information and perspectives.

To UnXmas, back before I knew about the migrated IUD, I'd have sold my first born son to have Crohns, or something _anything_ they could treat, anything that would let me have a full bite of food without barfing for 6 hours, and being hungry at the same time. Weird but true. That I was so hungry (from being afraid to eat) strongly suggested to me that whatever was wrong wasn't too serious. Really sick people so often lose their appetites and I never did, not once. I'd have sold my second born son for losing my appetite

I was nothing but relieved coming out from seeing Dr. T after we got the CT scan results, thinking that at long last, there might be a ray of hope now that we had that inflammation to go with. Unfortunately, as in my story, the treatments for Crohns including the mighty prednisone made me feel immediately, measurably worse, not better. I think that was maybe from the abscess - not a good combo with prednisone. But I'm not a doctor and I'll never have an official answer to that.

I read the links and from my non-medically trained take on the information, it's pretty much saying what I said about there not being a definite test for Crohns.

I agree with Dr. Baistuff that Crohns can't be taken off the table, however the knowledge of the effects of NSAIDs on the small intestine is still relatively new and still being studied. My use of NSAIDs was extreme and in the presence (partly) of proton pump inhibitors, which is another area of study that is going on. I didn't read all those studies but got the impression that combining NSAIDs and proton-pump inhibitors is a really bad idea for your intestines. More study needed, of course.

The number of variables in my case do muddy the water. The original opinion of the gastro after bloodwork, colonoscopy (high, into the small bowel, with biopsy) was that it was more than likely caused by NSAIDs. His opinion only changed when the inflammation came back to probable Crohns.

I wouldn't even think of stopping the Imuran without consulting with the gastro. I have already asked enough questions to be annoying, and I don't want to get the non-compliant label. It was hard enough getting help when I needed it, I need that doctor on my side. We have a followup appointment in December, and I'm sure we'll have lots to talk about then.

I freely admit an attitude problem when it comes what is known and what is an opinion. I had so many doctors basically wait for me to stop talking so they could tell me that IUD wasn't any problem at all before I insisted it come out, I'm more than a little jaded. They had no way to know that and if they'd bothered to listen, they might have found the abscess before I was ready to kill myself. No-one wants to get to that state of mind. Quick someone, sing Soft Kitty!