Changes are Bothering me

[Regular Joe]

I'm whining today.

Shadycat talked about excruciating back pain at work yesterday. Today it's me. The pain is getting to me, I can't sit and I can't stand, and I just can't lay down in my office either. Today started off with two rise and shine rounds of "fluid drive" poop. There I said it! POOP! Poop POOP Poop. I'm bothered today with POOP! (and excruciating back pain). I need to be lying down. Somebody please call a waaaaaaambulance, or buy me a waaaaaaaamburger.

When the onset of this disease hit me last year, it was "episodic". Some might say I was having something like "mini-flares" because I would have a 2-3 weeks reprieve between severe flaring episodes.

I've noticed a change that is concerning me. This current "episode" is hanging on beyond being an episode. I've been having at least 2 "fluid drive" movements a day, with some days more. This has been becoming constant since I estimate April 23, which is about 5 weeks. Also, lower abd cramps have been everyday. These two "constants" get worse on some days, but they haven't gone away on any day since then. I'm calling this a "low-grade" pain because I can function with it ongoing, but it's probably more than "low-grade" because it's wearing me out, and I fatigue and end up missing a day or two of work without pay.

In addition to that I've been getting pronounced right-side "flank" pain sometimes starting, peaking, and fading 2-3 days at a time. Sometimes it only lasts one day. Today everything in my abdomen from top to bottom is gurgling, chugging, and hurting with almost a "burning" type of sharp pain. Also today is that excruciating pain at the base of my back. My joints have also started to swell and ache today. Left elbow, right shoulder, left palm, today while left knee has been out of the ballpark pretty constantly since the whole "episode" began last month (no surprise).

I'm beginning to get concerned because the symptoms are getting progressively worse. It doesn't matter what I eat, it's FIFO ("first in first out") in a steady stream. Sometimes I just drink protein mix which slows down the process because eating is torture. I can pig-out which I did once or twice during the month, but I'm still about to loose another belt size which means about 10 pounds. Today, just the smell of food is grossing me out. In fact it seems like I can smell every little thing like damp clothes smells when I wash my hands and water gets on my sleeve

When this was "episodic", I could pick up 2-3 pounds between bouts, and dropping sizes would take a couple month's worth of episodes.

I haven't changed anything in the diet except eliminate more "trigger foods" which has made no difference. Yesterday I was just p'd-off and ate a damn piece of chicken kiev saturated in butter for lunch because it doesn't matter what I eat it sucks to eat. I guess I don't want to admit knowing that I'm feeling a change for the worse in bowel and digestion habits over the past month. I've been on the Endocort for a week today, but there is no improvement - the Endocort hasn't made things worse either. Other than the mental side-effects which I can deal with fair.

Does this sound like what I don't want to know is happening? I do have a call in to the GI for the pathology reports. I'll also discuss these changes with him.

 

[dreamintwilight]

Yeah...it sounds like close to obstruction going on. Or a really bad flare. When was the last time you had blood work or a scan done?

Sorry you are feeling so awful. It must be excruciating. I know it was awful for me when I only had a partial obstruction, and I only allowed myself to suffer a weekend feeling like that.

Hope you get it figured out soon. Are you on any other meds? I was on Humira when I had my obstruction. Sounds like the Entocort may not be enough. Keep us updated n what your docs say!

 

[Astra]

Hi Joe

think I'd go to A&E, cos one of my symptoms during my major flare was excrutiating lower back pain and pain in LRQ for about 2 days and I couldn't walk, sit or move, then I started projectile vomiting and uncontrollable D, like my sphincter muscle had collapsed!
I spent a week in hospital cos I was blocked and I didn't know!
give someone a ring, go to A&E but don't ignore it.
hope you feel better soon and get something sorted
xxx

 

[Regular Joe]

I'm still waiting for a call from the GI. No word yet.

I had a partial obstruction in the small intestine about 7 years ago which seemed to resolve itself over a period of months. The symptoms were more on the vomit/severe upper GI pain side - REAL severe. So severe I decided to go to the ER, probably 9 on a 10 scale.

The pain and symptoms I'm having now seem to be more like the episodic flares being "amplified", with the lower back back which happens in the episodes going from "very painfu"l to "excruciating". I picked up the new symptom of right-side flank pain which isn't daily or constant, but when it hits, it REALLY hits severe.

Yesterday it was more of a 7 on a 10 scale overall with the back pain at 8. The "fluid-drive" poop machine was giving me a burned you-know-what which is still sore today. Had a total of 4 BM's with one in the middle being "porridge". I did some pasta and a protein drink last night combined with several 1-hour naps.

Today, the flank pain is gone, the lower back pain is less severe, less severe cramping, but still overall lingering pain all over the abdominal area: give it 5-6 on a 10- scale. Today, also, however the appetite switch is completely off. I had a banana and a soft pretzel, with the banana giving me cramps for a while. The familiar joint pain is alive and well in between shoulders with a numbing sort of achiness across my shoulders. I'm at work again cuz I can't afford not to be.

After re-reading the colonoscopy report, I was more concerned - maybe I don't need to be just yet. Anyways, I originally thought the problems were ulcerations confined to the ileum. I noticed two scope shots that had me concerned.

The report reads that the GI found a "nodule" at 17cm after the scope was inserted. The anus and sigmoid were normal, so this nodule is in the descending colin (LARGE bowel), and not the terminal ileum. It's not a polyp, and it said some medical-sounding jargon about how it "morphed" while they were watching. It looks pretty big (about 1/4 the circumference of colon) and oval-shaped with a patch of red in the center. The report read that the all other "mucosa" in the large bowel appears normal. I don't know what that means and what the heck it is, but it obviously looks like a big sore that shoudn't be there.

I don't like Crohn's disease. I just don't like it. I feel like a hypochondriac anymore.

Anyway the last blood work was done mid-April and it showed inflammation with CRP high and out of range. The last CT was done in January, and it didn't show anything other than a very small kidney stone. I've had 2 large kidney stones busted up with lithotripsy, and I know what kidney stone pain feels like. What I'm feeling like now isn't kidney stone pain (thank God!).

Last night I got something added to the stress cauldron. My dad, who lives 1100 miles away, died 3:00 AM today of advanced kidney cancer. I found out he was sick a week ago, and he wanted me to visit him. We thought he would last another 2 months.

I've been upset lately, and the Endocort doesn't do much to calm my emotions.

Any thoughts about the "nodule"? The obvious thought for me is, duh, Crohn's Disease? The other thoughts have been slightly more upsetting. I'll be OK, I suppose, with CD moving to the colon, it does that kind of thing.

 

[MapleLeafGirl]

Unfortunately, I don't know anything about "nodules".

So sorry to hear about your dad. My thoughts are with you.

 

[dreamintwilight]

Yeah, I am not familiar with nodules either. Sorry I can't be more help

I'm really sorry to hear about your father as well. That added stress, I am sure, is not helping your situation. IF you haven't called the GI yet, maybe you should give yhem a ring and let them know your condition. Sometimes they just need a little reminding.

 

[ataloss]

Oh Joe that's terrible. I am hoping that you hear back from the GI soon and that you are able to get some relief.

 

[PeninsulaLil]

Why does everything always seem to hit at once?!?! So sorry for the loss of your dad, Joe. I hope you hear back from your GI soon, otherwise I agree with Astra, you should think about going to the ER. Any pain that is 'excruciating' should be attended to right away. Hang in there, it really will get better eventually.

Lilly

 

[Regular Joe]

Hello again,

Thank all of you for your condolences, your thoughts are appreciated.

What usually works for me worked again, and I'm really glad this "spur" of the flare didn't hang on too long. I avoided eating anything other than crackers, pretzels, and like someone mentioned a turkey sandwich on white bread. Very light for about 3 days. Of course I missed a day of work again, but I'll navigate through this. The back and flank pain have subsided, the "everywhere" abdominal pain has faded, too. Of course with nothing in, eventually nothing comes out either, so the fluid poop machine is off for now.

I'm back to manageable cramps and mild back pain, the daily "grind" of "subnormal" normal for Crohnnies. Sometimes the thought of "normal" body feeling, without any pain, something like "remission" - it seems pretty distant. I guess I feel sad that a man or woman with Crohn's disease has to "settle" for a "normal" that really is below true "normal". "Settling for less" is apparently something all of us must do at times during the course of this disease. I'll try not hold onto to that thought for too long.

OK, the GI called. With an opening statement like "You already know your colonoscopy came back abnormal, don't you?" Uhh Yeah I was there?

That didn't sound like a great start to the conversation regarding pathology. "Of course we know you have "mild" Crohn's Disease" - so pathology confirmed that. He said he also believes I have IBS along with Crohn's which aggravates the bowel symptoms, also a common thing for us. He went on to say I have active inflammation going on in the small intestine, which also is no surprise - so this is a flare I'm experiencing. I told him about the pain and these recent symptoms. "We may need to go to a more powerful steroid: prednisone.

No thanks, the rheumatologist voted against that one. The GI agreed after I explained. I told him about the neurologist's idea that would curb steroid side effects. The GI thought it might help with the pain also, before the diagnosis. I reminded him. The GI said lets try that, then. Continue with the Endocort, because its only been a week, and increase the Lyrica to twice a day instead of once. He said if that doesn't stop this, we may need to consider moving ahead to prednisone. Nothing out of the ordinary anyone with early diagnosis hasn't heard.

OK so now we're beyond the easy and obvious problem. My next thought is what about this "nodule". Before the words came out of my mouth, he's talking.

"Do you remember me mentioning that there was something abnormal in your large bowel that I wanted to keep an eye on?"

The "nodule"?

"Yes the nodule. Well I'm sorry to say this, but the lab work shows it's pre-cancerous, so you'll need another colonoscopy so we can remove it."

When?

"Well these things turn into cancer, and it didn't show up in your first colonscopy. Sometimes it can take up to a year, but it will become cancer so we want to remove it. I'll be off for a couple months, but let's say in three months before you see me again."

I told him about my dad. I said, if it can be removed sooner, I'd prefer that. He agreed and went on to say he will ask a colleague of his who has experience at removing these through a partial colonscopy. He said its "low down" and it wouldn't be hard to get or move the scope around. He said it was "pretty large" between moderately large and big. Somehow when an expert GI like this makes a comment like, "I have seen them bigger", I didn't feel greatly encouraged. In fact, I'm seeing this as pretty darn worrisome. He assured me that it should be able to be removed through colonscopy which would be easier than surgery.

So how's that for an initial diagnosis? It's like he was saying the good news is I have Crohn's disease. It was easy for him, as a doctor, to break the news of a Crohn's diagnosis. But he was much more reserved with the nodule. Sometimes you know inside, there's something wrong. When I looked at that picture of the thing, and I saw the size and red center, I knew it was cancerous. I guess I wasn't being a hypochondriac after all.

So I'll get it done in 2-3 weeks.

In a few hours I leave for Florida, he saw no medical reason I couldn't travel 1100 miles to my dad's funeral. Just bring Immodium, and whatever else I need to travel (with Crohn's disease).

It's been a difficult week, and I'm feeling pretty much alone right now.

 

[Christy]

((((((Joe)))))) What an awful time!! I am so sorry, I know that alone-ness ... I'll keep you in my thoughts and prayers.

 

[Astra]

Aw Joe
I'm a bit late with this thread, so sorry about your loss, especially a shock one like that, and I know how that feels too! I lost my Dad 12 years ago in an industrial accident, he went to work and didn't come back, so what an awful week you're having, I am too, funnily enough, but too early to comment on what's going on at the mo, really hope everything works out for you, the hospital, the op, the funeral, we'll all be thinking of you at this sad time.
Please take care
xxx

 

[dreamintwilight]

OH Joe...so sorry to hear all you are going through. At least you are on your way to getting things solved. I'm glad you were proactive on getting the nodule removed sooner and the docs cooperated with you. They'll keep a good eye on you, I am sure! IT;s okay to feel down in the dumps. It's a rollercoaster of emotions, this Crohn's business, and you've been so positive so far. I don't blame you for feeling alone. Sometimes I still feel like that. We are here for you Feel free to vent as much as you need!

 

[ataloss]

Oh Joe my heartfelt condolences, prayers, and thoughts go out to you. Why does it all have to happen at once?? Life can be so cruel sometimes. You are not alone. We are all here for you.

XOXOXOXOXOXOXOXO.

 

[Regular Joe]

Thanks again for your encouraging words.

What I learned a long time ago, I carry with me today. I need to keep it simple. I believe that "God" should wear a sign that says "NO answers to WHY questions." Why? Because 9 times out of 10, the answer to "why" doesn't matter, or bring about anything productive or positive that I can work with.

It was taught to me this way. If my house is on fire, and I'm inside - does it matter why my house is on fire? The point being I need to take a constructive action, and get my tail out of the burning house instead of stopping for analysis.

I'm not trying to be a smart@ss, although I never let my smart@ss license expire - I keep it up to date! (LOL). Life's "storms" hit everywhere and everybody. This patch of difficulty for me happens to other people all the time. There's usually never a good time to lose a parent or loved one, or to return positive pathology results.

I'm moving into action now, otherwise I'll get stuck.

Thanks for your kind words and support. I'm always grateful for prayers because they work. I probably won't be back online until next Wednesday or Thursday.

Talk soon.

 

[kenny]

I think I seem to cope with this stuff in the same manner. As long as it is moving forward at least we are making progress!

That thing is called Displasia is it not? I am sorry to hear that you have to deal with that but it is a very positive thing that they found it. From what I understand us Crohnies are as likely to develop that within 10 years of Crohns diagnosis as non-Crohnies are in their full lifetime.

And yes it does happen to all of us. I lost my dad last year as he was preparing to fly up here to be with my for my post surgery recovery. I went into surgery knowing he died worrying about how I was going to make out. It sucked large but it was not something I could begin to question. There was no why. Just make the best of it and keep moving forward. Thats what they raised us to do. I know its politically incorrect these days to say but that's what men are supposed to do. Stick out the chin and soldier on :thumright:

 

[Regular Joe]

Hello - back to life in Ohio.

The trip and teh funeral were difficult, and events happened that were totally unexpected. I've found that something like this can either bring out the best in people, or the worst in people. I felt a lot of the worst as though it were aimed at me.

But I found out something about my girlfriend that I wasn't sure about, but somewhat suspected. It doesn't matter what corner of the earth I might end up, if I'm in major trouble, she'll drop whatever she's doing and come to my side, and to help in ANY way she can. And I mean ANY way which includes her time and money. She couldn't come with me because she has a son who is active and a scholar in high school, and she has to be a mom and a driver, etc. But she was willing and ready to drive several hundred miles for me because she knew I was in trouble, and she didn't want me to be alone.

That caught me completely off guard, because I've had relationships, including marriage, that if I were in the same predicament, I'd have to dig out of it on my own. I wouldn't be able to fully rely on my partner in desperate or difficult situations. That's something I sort of "accepted", or maybe to say it better "settled for."

I was talking with my cousin yesterday, and she told me I have a "keeper". I'd say she's right. I don't think I can accurately put into words what I feel. This is the first time I can remember anyone, aside from my mother, that I could fully rely on. In fact in this go-around, even my mother could not help. The heart I saw my girlfriend give to me still hasn't fully registered. She is a beautiful soul, and she showed me just that.

So dad's funeral became an ugly event beset with awkward and difficult circumstances. I was able to dig out of it on my own, probably with the help of a "guardian angel" and all the prayers I've been getting. I'm now home, and I pretty much want to move forward which shouldn't be hard.

Regarding the "nodule", Kenny is right. I believe this would be classified as "colon dysplasia" or some type of "adenoma". And like he said, people with IBD are more prone to develop these. The GI set the appointment for June 23, which is the earliest available. I also asked to be put on the "waiting list" for cancellations.

I appreciate the "political incorrectness" about "being a man", but either fortunately or unfortunately, the way I cope with things are governed by my "inner female". I don't stick out my chin and soldier forward and "be a man" about things. It doesn't work that way with me.

I feel the difficult emotions and feelings and let them "pass through" me in whatever way they do. I won't lie to myself anymore and pretend I'm not in emotional pain, because later I WILL pay the price. So I cry and weep for hours and days. I stay up nights and fret uncontrollably with anxiety. I think about what could I have done differently to stop this from happening, or more often ask myself "what did I do wrong?" I search the internet for a gazillion different variations in my disease when I can't sleep. I call my friends and relatives and talk. I go online and whine. I use this support group.

I can't help it, this is how I'm "hard-wired". Yet I'm still a heterosexual man. If you're a woman, I can be your "girlfriend" (just ask my cousin). If you're a man, you'd tell me I talk too much.

Even right now, I want to apologize! But I won't.

I guss it doesn't matter how a person feels, constructive action will let me move forward through difficult circumstances.

Thanks again to all of you for your kind thoughts, prayers and condolances. I appreciate you and this forum.

Joseph

 

[dreamintwilight]

Joe - I think it's important to vent your feelings in whatever way they come out It's better than keeping it all inside, which we all make our condition worse.

I am glad you have a wonderful supportive woman in your life to help you through the difficult times.

Take care of yourself, my friend!

 

[MapleLeafGirl]

I appreciate the "political incorrectness" about "being a man", but either fortunately or unfortunately, the way I cope with things are governed by my "inner female". I don't stick out my chin and soldier forward and "be a man" about things. It doesn't work that way with me.

My husband is the exact same way and it is what I love most about him! You have such a great attitude. I love what you said earlier about God wearing a sign that says "No WHY Questions". I am going to carry that with me.

All the best!

 

[kenny]

. . . . . . . .
I appreciate the "political incorrectness" about "being a man", but either fortunately or unfortunately, the way I cope with things are governed by my "inner female". I don't stick out my chin and soldier forward and "be a man" about things. It doesn't work that way with me.
. . . . . . . .

drat, now I ended up alienating 80% of the board and not even helping to cheer you up

But having a chance to think about this I will say having a really tough time with Crohns changed my life. And some of those changes have been for the better. As I move into a phase of remission the trick for me is to retain those positive adjustments and not to forget all the sacrifices my partner made for me as well. You can see the good in things you mention in your post and I hope you give plenty of time to researching those in your free time too

 

[Regular Joe]

Kenny,

Naw, I wasn't being grouchy - I can appreciate the attitude of dealing with pain "like a man". Nothing at all wrong with that, it's just not how I can work, literally. I couldn't be that way if I tried. It wouldn't be me, it would be me acting like someone else.

Now for you, being raised that way, it probably comes naturally. Believe it or not, my girlfriend is that way. She sticks out her chin and soldiers onward, while I cry and weep like Alfalfa in the little rascals when Butch whoops his butt! Sometimes she just tells me shut up and get over it. My response? "You're so insensitive!"

We laugh about it a lot because it comes up at times when we least expect it, but we realize somewhere our wires got crossed.

Dealing with remission is great news too. Congratulations.

Joseph