This is never going to end, is it?

[Regular Joe]

For the most part, I'm a "cock-eyed optimist". I love life for sure, and I usually get through it's many struggles. I guess I need to vent for the sake of grieving. It's pretty weird grieving about the "loss" of regularity in bowel movements, but it's a big loss for me. I still remember the days of "normal" bowel movements, no pain in my gut anywhere, and no worries about what I should or shouldn't eat.

I'm new to this "change", and sometimes I'm just astonished, totally surprised, that I have this same disease I watched my girlfriend suffer with. Each day I wake up, and imagine this whole ordeal was a bad dream - something that will go away once I'm awake. I'm still in this "surreal" state of wondering - maybe even trying to bargain with some unknown "banker", and I have the ability to push the "deal" or "no deal" button, then walk away with my prize

That happens every day. I wake up, and somehow the past five or six months haven't seemed to register in my foggy brain in the morning. Then every single gosh-darn day, my bowels grab me and shake me out of the fog with that familiar pain in the same spot. I realize that it didn't just magically "go away" in the night. I mean this is not logical - every day I wake up thinking this "bad dream" is going to end, that somehow what started five months ago is just going to stop, and life will revert back to a calmer time when this "thing" was actually in remission and I had no symptoms. I question myself - is this all in my head?

This is never going to end, is it? Even if it gets into remission, I have the feeling that if I don't diligently watch over my eating and drinking like a hawk, Crohn's Disease will jump back out it's cage and clobber me any time of any day.

Reality has a way of making things clear to me even when I'm struggling with self-doubt or denial. My primary care physician, the internal medicine doctor who's treated every ailment I've had over the past 20 years - the same doctor who chews me out a new butthole if I'm late to my appointments - He's certain enough about my "disorder" to tell me he thinks it's Inflammatory Bowel Disease. I have to stop and say out loud, no Cleveland Clinic doctor would carelessly throw out IBD unless he was certain, based on my symptoms and clinical records.

Here's what really rattles my cage. Every darn day I go to a bathroom either at home or at work, and what happens when I sit down is usually painful enough to make me flinch and grit my teeth. Every time I sit down on that porcelain throne, I have no idea what's going to happen next. Sometimes I'm just plain afraid - other times I get angry as hell. Just going to the pot knowing it's time to take a poop is stressful as hell anymore. I don't know if I'm going to get excruciating pain that will knock me off my feet into bedrest. I don't know when or where I'll see little swirls of blood. I don't know if it's going to be watery, explosive, or almost normal. Is it going to be orange? Maybe a deep forest green? How about a watery yellow?

Or it could be like today - I go to the bathroom down the hall from my office. I know I have to go, I feel the urge, I get there and sit down. Then nothing happens! Nothing is there in my rectum awaiting to evacuate. No POOP! I have all the feelings, all the nerve sensations that tell me NO DOUBT that I have to take a crap! I get there and where's the damn poop? No, I'm not constipated, that's the last thing in the world that would happen. So I writhe and squeeze and push, almost grunt. And maybe a little half-turd rises from it's slumber, and moves through my bowel - I mean it has to make a journey, it wasn't sitting at the end waiting to jump. That half-turd was doing this just to placate me - letting me know that at least I'm not wasting my time looking stupid with my pants down and nothing is there.

What kind of crazy disease is this? I look down there at the little bitty crumbling, squished out, long-distance traveler "poop that could" (think about "I think I can - I think I can"), and my gut is telling me I still have to take a crap and there truly isn't anything south of sigmoid needing to move anywhere. Does that happen to anyone else? There are other times when it just starts moving out with no warning - it just pokes it's head out before the nerves and sensations register that I need to have a bowel movement.

I hate the uncertainty that follows me every stinking moment of the day - that I have to take my stomach with me wherever I go, as though it's a completely separate person with a mind of it's own, like a little toddler who might throw a temper tantrum for God knows what reason? Dammit, I can't even go to a restaraunt without getting anxious about the crapper. I know there's redeeming value in all things, but for today, Crohn's Disease sucks!

If any of you are in remission, how are you feeling? Is it like the symptoms are no longer there, and you can be slightly confident that you can eat like a normal person? Or is it like you have to babysit the "toddler", hoping he doesn't wake up and start crying at the top of his lungs?

I just don't know what to expect anymore. Will someone please share some "pictures" of your life in remission? I'm a little short on hope these days.

Thanks for letting me share.

 

[shazamataz]

Hi Joe, Bad day huh?

You write so well you know?

I wonder too about this whole 'remission' thing'. My doc on monday told me I was in remission at the moment as I have no real symptoms apart from some 'tightness' and the occasional feeling of having stitch in my lower abdomen, pooping like clockwork every morning, no fevers or temperature which I had really bad on diagnosis. I am tapering Pred though and so am very conscious that things may flare up when that stops.

I dream of managing to keep remission for years without any 'hard drugs' but am aware this is unlikely. Yesterday was the first day since diagnosis in July that I almost forgot I had Crohns (despite the dozens of pills I take every day) and it was a great feeling. For three months I have been waking in the night and having that moment like you describe of thinking it's all just a bad dream and then realising that it is REAL and the fear sets in.

I haven't had the symptoms as bad as many describe here and thankfully had Constipation as opposed to D and hope like heck that is the way my disease chooses to manifest for a long time - the accident stories are terrifying to me!

So, while I am okay now (apart from very tired), I carry a constant fear of what MAY come and what the future may hold. Will I be able to support myself financially? Will I ever find a partner and have a family? Will I be in and out of hospital getting bits taken out? I don;t obviously know this and it is scary!

I also wonder about remission because people here who say they are in remission still seem to have a hell of a lot of abnormal bowel symptoms and that doesn;t sound like remission to me at all.

I hope you manage to keep your spirits up Joe. How far along are you towards diagnosis and treatment? From what i remember you have no meds or anything but I could be wrong.

Take care
Shaz :Flower:

 

[kjhngisd]

I think it's interesting that you relate this to grief, and I think you're right. But you're not grieving for you bowels, you're grieving for your health.

not that that makes it better, really, but maybe it helps understand it a bit.

 

[nogutsnoglory]

Joe I completely understand your frustration, I ask myself will this ever or end, or is there anything i cant do wrong? it seems ever turn i make, every choice i make leads to another negative consequence.

I do believe that once you figure out how to best get yourself into remission, if you are diligent about following that dietary pattern and med dosage u will be fine, and if u experience a light flare later in life you will know how to deal with it and avoid problems.

 

[Regular Joe]

Hi and thanks for listening to me rant!

I guess you can say that I have a "partial diagnosis". I'm changing GI's, and hope the new doctor will explain things more clearly. The GI did an upper and lower "scope". He found "shallow ulcers" and "erosions" in the terminal ileium. On the lab report, the findings read "Mild Crohn's???"

Unfortunately, this GI doesn't speak to me directly...he uses his CNP (Nurse Practitioner). After I spoke with her after the scopings, I was totally confused, so I asked her to send me a copy of the lab report. I called again, and she seemed to think I was "seeking narcotics" for the pain I have. They did not prescribe anything and have a "wait and see" attitude - see him in 3 months to see if "it" heals.

Well I got fed up and scheduled an appointment with my girlfriend's GI who is an expert at the Cleveland Clinic - he is the head of the GI department. I went with her on her visit, and the GI spoke with me and said he'd be glad to have me as a patient, and to make arrangements with the scheduler to visit. I felt a connection with that GI, so I'm taking my "business" to him on October 7.

In the meantime, I get "episodic" flares that cause me to double over, have multiple diarrhea attacks, different joints get aches and swell up, and I go into this fatigue that makes it so the only thing I can do is sleep for whole days and nights, or I get so tired that I want to sleep, but I can't sleep. That's when I called the GI Nurse, and she thought I was wanting "narcotics" for pain. That was the last I spoke to her, and that GI just isn't working for me. Period.

So I took my lab reports from the recent scopings, and I also got the findings from the last flare several years ago, and the journal I'm keeping - I took all of this to my primary care physician. He would not say it's Crohn's because he didn't feel he had the expertise to make that call. But he also said he thinks its some form of IBD. He specifically ruled out IBS because there is an "inflammation process" going on in my ileum, and it looked like the same thing that happened several years ago to him.

He said that my symptoms and records "are particularly unique to Crohn's Disease" (maybe he read the "Mild Crohn's??? statement too). He went on to say "Let's just say Crohn's Disease is within the range of clincal possibilities. You'd better get to Dr. XXXXX and he'll tell you what needs to be done."

Then he prescribed "Bentyl" after examining my lower abdomen and concluding "its going on everywhere down there". He was saying that my lower bowel was having spasms everywhere and the medicine won't deaden the pain, but it should calm the colon from spasms, and that should reduce the pain. He said the next GI might not want me to continue with Bentyl, but he hopes that it will reduce the acute flare-ups until I see the GI.

So yes, i'm taking medication, Bentyl, which is my primary care doctor's "first line" medication he uses to treat IBD and/or IBS. The GI I'll be visiting next should be able to help out more.

So I don't really know what kind of diagnosis I have. It "looks like Inflammatory Bowel Disease of some form" according to the primary care doctor. The first GI writes "Mild Crohn's ???" on the report. The other thing is the primary care doctor said it was extremely important that I bring the same reports and findings I shared with him to the new GI.

I suppose that's not too bad for 5 months into this "flare-up". I feel somewhat lucky and blessed to have good health care and doctors here in Cleveland. I also think that 5 months of symptoms and testing is pretty early in the course, but there does seem to be a clear focus and direction. The prgnosis seems to be "leaning heavily" toward Crohn's and IBD even at this early state, and there isn't a whole bunch of "it could be this" or "it could be that"; also "IBS" has been ruled out. So my guess is there's not a lot "out there" with these symptoms that this condition could be.