Part 2 of my intro - CD without diarrhea?

[cheeky]

hey all!

i'm new here, i did a long intro in the introductory forum giving some background on myself http://www.crohnsforum.com/showthread.php?t=4941, but i'm posting part 2 here, because there are a few more details to my story that came about recently, which lead me to a question:

is there anyone else here diagnosed with severe Crohn's but without diarrhea? i'm told that my symptoms are unusual, yet i've seen in online searches that some people with CD experience constipation instead of diarrhea... i don't get much constipation either (maybe one or two days i'll be backed up during a flare up...) but i usually have pretty regular bowel movements, 1-2 times a day, quite solid... though i have days where i'll have quite a bit of bright red blood in my stools. i rarely get diarrhea... not sure why.



anyway, as of December 2008, i found out that the ongoing abdominal cramping after meals, the nausea, the fatigue/lethargy, the crazy blood work, the joint pain, the gum swelling/inflammation, the skin changes (i.e. occasional red lump on chins, rashes), the blood in my stools, the anal skin tags, the general discomfort in my chest and stomach, even the weight loss (that i had thought was intentional - it's now a total of 40 pounds!)).... ALL OF IT - i finally have an answer = CROHN'S DISEASE!

however, it took my having a really bad episode of cramping to lead me to the hospital on December 16th.... my coworkers and i had a retirement party for my boss, so we took him to a restaurant.... i had some chinese food.... specifically my first bite was sweet and sour pork and immediately it set my stomach off!

i felt extremely nauseous, felt my stomach turning and cramping, i felt very gassy/bloated and like i wanted to throw up.... i was extremely uncomfortable and in much pain but the cramping would come and go, so i hung in there... continued to celebrate with my coworkers... i told them i must have a sensitivity to chinese food since a couple months prior to this i had a similar incident after eating chow mein - i had cramping for 2 days and vomited... i thought it was food poisoning... so i told them all 'hey i guess no more chinese food for me!'

but throughout the night, the cramping got worse.... i became scared.... wondered if maybe it was my ovaries or something else unrelated to food...

i went to emerg in the hospital... i was expecting them to hook me up to IV or do anything to releive me of the pain.... but instead i had to remain laying down in triage... got blood work done and they went through the routine questions...

i begged for something for the pain, but they wouldn't give me anything until my blood work returned.... so i suffered for HOURS, began wondering why i was even there lol...

when my blood work returned, they finally allowed me to have some percocet/oxycodone (sp?)... so that was helpful a bit, i could sleep at least...

my blood work results were waaaay off! i had a history of WBC and platelets being elevated, but never this bad:

WBC - 24
Platetet count - 1015!!!!! (normal range should be somewhere between 150-400)
RBC - 105 (eventually it became 95) quite low, so i'm anemic

Therefore, they told me i should stay overnight so i could get an ultrasound the next morning... i felt ok on the pain killers and there was a winter storm out... i decided since they'd make me sleep in triage anyway, i'd ask to go home and return the next day for the ultrasound...they said it was ok.

i had an ok night, some discomfort in the abdomen but the pain killers let me sleep... i returned the next day, very hard to walk straight, lift my legs to get in and out of bed or in and out of the car, very painful....


got the ultrasound, results determined thickness in the looping of my bowel... in the large and small instestines.... inflammation that they said looked to be due to autoimmune such as Crohn's disease.

i saw my family doctor 2 days later, shared my results and she was in shock when she saw my platelet count was so high... she was very concerned, said she'd NEVER seen a patient with a platelet count that high... .and my overall bloodwork concerned her and she was surprised the hospital didn't do more about it.

when she realized Crohn's was likely the culprit, she had a lightbulb go off in her head... now it all made sense.... all this time she was puzzled about my symptoms, though now she realized how obvious it was.... and she felt bad.... she also believed it was Crohn's and she hadn't put the clues together.

she promptly requested i see the Gastro specialist... marking my file ASAP....
however, with my luck, it being mid-december, the specialist was going on holidays....

so alllll through the holidays, i suffered... i could barely eat, i tried not to have painkillers unless i REALLY needed them because i wanted to avoid furhter constipation, but it seemed they weren't that helpful anyway.... it was just agony because i had no clue what i really should be doing to feel better... i was just scared to eat and you all know how it is right? no need to explain.

so FINALLY, after i returned to work Jan 5th, by Jan 6th i received an urgent call from the Gastro specialist, and was scheduled for a colonoscopy for Jan 8th

guess what? the Gastro - Doctor R, begins asking me questions and says the usual question i always get 'how often do you have bowel movements? diarrhea?' i tell him 'actually, i don't have any diarrhea, i have a BM once a day, but since being inflamed, maybe once every other day?" he says 'really no diarrhea? your stool is firm? only once a day that's it?" he told me that i was "unusual" my symptoms were not typical....

then, as he begins the colonoscopy, i begin to have A LOT of pain... he ends up stopping the procedure about 5 minutes in.

he informs me that my inflammation is VERY severe, especially in the right side that i complained was still sore, he said due to the inflammation, my intestinal walls had become too narrow to perform the procedure.... he was very surprised at the severity and felt this must have been something i've had for years.

he precribed me prednisone (2 weeks full dose, then gradually ween off, i'll be finished the prescription on march 11th), he said i need a CT Scan and then he'd like to try again for a colonoscopy once the medication has brought down the inflammation, but if he attempts to do it again and finds the same kind of problem then we'll have to consider an operation.



i can't believe that because i didnt have the 'typical' diarrhea, all these years i've been responsible about my health as far as going to the doctor when i have symptoms, doing research, communicating my concerns... i told my doctor EVERYTHING, i had a lot of OTHER symptoms related to CD, yet because i didn't have diarrhea, and because as the nurse explained 'you look young and otherwise healthy, and your symptoms were unusual so i guess it was hard to diagnose the Crohns'.... this has become this severe.

i am scared to have surgery... but after having a good cry... and letting it out...and reading the CD pamphlet and other online info.... i'm feeling better and realize i have to do what's best to me.


so that's my looooong novel of a story... i'm sure i left out a lot lol but still, that's the main story.... can anyone else relate to this "unusual symptom" thing?

 

[danman]

I have read other peoples stories on here, that have no D. It's not that uncommon. Granted, the majority of people on this forum suffer from D, There have been quite a few that don't.

Like I said on the other thread, we're all different.

 

[cheeky]

also, i've read a lil bit here and there about prednisone... just wondering who here has experienced taking prednisone for a SHORT period of time? did you still get the side effects of swelling/water retention, weight gain and/or moon face? i know it's vain but i REALLY don't want to get weight gain or moon face, feels like the only good thing lately is that i've lost weight and my skin/face has been looking much better... go figure.... and it would suck to have my outside appearance match how i'm feeling on the inside - i.e. unwell and inflamed...

i just wanna get through this, i know there will be hard times and discomforts, but i don't want to draw any more attention to myself, you know? i want to try to go to work and get through the day.... i don't want to look 'ill' as i'm used to my coworkers noticing whenever i'm not feeling well... i can't wait to get to the point where i can feel somewhat normal again, and have more energy.

anyone here get B12 shots? i heard that's helpful too. i could definitely use the energy boost. how do you get the shots? your doctor?

 

[cheeky]

I have read other peoples stories on here, that have no D. It's not that uncommon. Granted, the majority of people on this forum suffer from D, There have been quite a few that don't.

Like I said on the other thread, we're all different.

thanks danman... it helps to know that others also don't get it... you'd think the Gastro specialist wouldn't have been so surprised by it *rolling my eyes*... these doctors need to stop ONLY focusing specifically on the main symptoms of 'diarrhea, blood and pain' of course those are major factors, but there are soooo many more symptoms and the blood work that can show big red flags.

i wonder why it is some people get the big D while others don't....

for those of you who do get the big D, i empathize, that must be REALLY hard to deal with... i can't imagine having to run to the toilet 20 times a day on top of feeling all this other pain. my heart goes out to you.

 

[My Butt Hurts]

also, i've read a lil bit here and there about prednisone... just wondering who here has experienced taking prednisone for a SHORT period of time? did you still get the side effects of swelling/water retention, weight gain and/or moon face?

Hi cheeky - I don't think I welcomed you on your other thread, so welcome to the forum! I know that I have read on here about people who have more C then D so you are not alone. Just like everyone's symptoms are different, everyone seems to react to the meds differently too. I have not had any problems while taking prednisone. No moon face, no swelling, no sleep problems. I did have increased appetite, but you will just need to work hard to control it. The increased energy was a bonus too. There is no way to tell what it will do to you/for you unless you try it. For me it was magical every time I was on it.
Good luck and I hope you feel better soon.

 

[AIjen]

Cheeky -- I was just diagnosed in November. I don't have diarrhea either. I never knew anything was wrong with me. I just had a routine, 5 year colonoscopy (I just wrote this on someone else's thread.....) and was told I have Crohn's. Talk about a surprise. I kind of border on the constipation side, but I would go in cycles -- a few weeks with constipation, then a few weeks where I'd go every day. I had abdominal pain, but figured it was normal. Never really said much about it.

I went to the emergency room 5ish years ago for severe abdominal pain. They did a CT scan and determined that I possibly had appendicitis and had a 7cm cyst on my right ovary. Elevated white count and a bunch of other labs that were way off. The sent me up to my "regular" hospital by ambulance and I had surgery to remove my ovary and then they took my appendix too even though it was OK. I have to wonder now if it was something else, but with the CT, I suppose they would have seen if it was something else. Maybe.

So that's me. A very atypical Crohn's patient. I still can't believe it. When I say I have Crohn's Disease, it's like I'm getting the diagnosis new all over again. Very hard to believe for me, but probably only because I have practically none of the typical symptoms. I don't even get to lose weight -- Instead, I gain it. Rapidly! I've been on Pred since mid-November and have just gotten down to 20mg (started at 40, got down to 30, and was bumped back up to 40). I have acquired the "moon face" in the past week or so. My mother noticed it earlier this week and said, "Wow Jen! Has your face ever gotten fat!". Um, gee. Thanks mom. Sounds like you're getting weaned off of it faster than I am. I'll probably end around the same time you do. I just hope I can lose some of this weight. Not that those of you that have had weight loss see it as a plus -- I know you don't and I know it isn't. I don't want the symptoms that come with the weight loss(pain diarrhea etc) I just want to lose........say..........40 pounds?

Don't know if that helps at all Cheeky, but that's part of my story.

 

[dayng1016]

Hi Cheeky!
Your symptoms sound exactly like mine. I'm sorry to hear that you've had a tough time with this. I was diagnosed in June/July 07. I have never had diarrhea or blood in the stool. I have always had constipation problem, bloated and sometimes gassy. I would have never guessed myself that I had Crohn's because all the reading I had done was saying diarrhea, bleeding etc. When my first GI did the first colonoscopy, found out that I had a stricture and he wanted to do surgery. Informed me that no meds would help until I did that. I didn't feel that I was "that bad" to need surgery right away and went for another opinion to try all my options.

Now I'm with my third GI, who is wonderful, and would not recommend surgery unless it was absolutely necessary. In the beginning I was put on a high dose of pred, and pentasa, tried imuran and now just on Humira. My rheumy gave me pred to take 5-10mg a day for my joint stiffness, but other than that nothing else. Not doing horrible, but not great because the constipation has gotten worse the past couple of weeks.

I can relate to the issue with the colonoscopy b/c my last one in Nov. they could not finish because the doc could not get any tubes through the stricture. So, I know sometime in the near future they will repeat it. And chinese food for me is the one food that kills me instantly after I eat, so no more chinese for me. I hope you get some relief soon.

 

[Guest]

hi Cheeky & welcome to the forum

sorry to post a brief response, but it's 1.30am here and i'm falling asleep over my keyboard lol.

i too didn't have diarrhea, even when my Crohns was at it's very worst - i had constipation, which i presume was actually blockages as my colon turned out to be more badly effected than the doctors thought, pre surgery.

and i have vit B12 shots every 3 months.. i get mine done by the nurse at my GP surgery - they order the prescription in for me, and keep the vials there. it might be a different process where you are - i've read on here of people administering their own B12 injections. they do give me a kind of boost, but only seem to put back what i increasingly lose in energy as the 3 months ticks towards my due date.

 

[cheeky]

Hi cheeky - I don't think I welcomed you on your other thread, so welcome to the forum! I know that I have read on here about people who have more C then D so you are not alone. Just like everyone's symptoms are different, everyone seems to react to the meds differently too. I have not had any problems while taking prednisone. No moon face, no swelling, no sleep problems. I did have increased appetite, but you will just need to work hard to control it. The increased energy was a bonus too. There is no way to tell what it will do to you/for you unless you try it. For me it was magical every time I was on it.
Good luck and I hope you feel better soon.

hellooo my butt hurts (lol @ your name, love it!) ... thanks for the welcome.

so i've had the prednisone for 3 days so far, so i'm guessing it must be in my system... so far so good... only thing that's changed is my gut feels much better and my appetite has increased... only thing i still suffer from is gas and slight discomfort after certain foods, but nothing major (i just pop a gas pill and it eventually calms down)... also, i've noticed a bit of dry skin on my arms, but nothing severe.

my weight has been ok, i have actually lost 2 pounds. i try to have a good amount of water... and i'm going to start exercising again today (just light cardio for 20-30 minutes, it's been so long since i've felt well enough to work out)...so i figure that should help my body stay on track, not get too bloated.

 

[cheeky]

Hi Cheeky!
Your symptoms sound exactly like mine. I'm sorry to hear that you've had a tough time with this. I was diagnosed in June/July 07. I have never had diarrhea or blood in the stool. I have always had constipation problem, bloated and sometimes gassy. I would have never guessed myself that I had Crohn's because all the reading I had done was saying diarrhea, bleeding etc. When my first GI did the first colonoscopy, found out that I had a stricture and he wanted to do surgery. Informed me that no meds would help until I did that. I didn't feel that I was "that bad" to need surgery right away and went for another opinion to try all my options.

Now I'm with my third GI, who is wonderful, and would not recommend surgery unless it was absolutely necessary. In the beginning I was put on a high dose of pred, and pentasa, tried imuran and now just on Humira. My rheumy gave me pred to take 5-10mg a day for my joint stiffness, but other than that nothing else. Not doing horrible, but not great because the constipation has gotten worse the past couple of weeks.

I can relate to the issue with the colonoscopy b/c my last one in Nov. they could not finish because the doc could not get any tubes through the stricture. So, I know sometime in the near future they will repeat it. And chinese food for me is the one food that kills me instantly after I eat, so no more chinese for me. I hope you get some relief soon.

thanks dayng, i'm glad you could relate to my situation. yes, i think i'm going to get a second or third opinion if the GI tells me to get surgery...apparently there's a place downtown toronto (St. Micheal's hospital) that's supposed to have an excellent GI team and is the best for crohn's (that's what i heard from one person, so we'll see).... this week, i'm also making an appointment to see a naturopathic doctor. i'd really like to go that route. i've heard of naturopaths doing wonders for people with crohn's (i.e. permanent remission). so i pray i am lucky enough to at least prevent this from getting worse.

anyone else see a naturopathic doctor? how did it go?

 

[cheeky]

p.s. - yes chinese food is the enemy, so glad i can live without that food. yuck! it MURDERS my intestines! lol

 

[cheeky]

Cheeky -- I was just diagnosed in November. I don't have diarrhea either. I never knew anything was wrong with me. I just had a routine, 5 year colonoscopy (I just wrote this on someone else's thread.....) and was told I have Crohn's. Talk about a surprise. I kind of border on the constipation side, but I would go in cycles -- a few weeks with constipation, then a few weeks where I'd go every day. I had abdominal pain, but figured it was normal. Never really said much about it.

I went to the emergency room 5ish years ago for severe abdominal pain. They did a CT scan and determined that I possibly had appendicitis and had a 7cm cyst on my right ovary. Elevated white count and a bunch of other labs that were way off. The sent me up to my "regular" hospital by ambulance and I had surgery to remove my ovary and then they took my appendix too even though it was OK. I have to wonder now if it was something else, but with the CT, I suppose they would have seen if it was something else. Maybe.

So that's me. A very atypical Crohn's patient. I still can't believe it. When I say I have Crohn's Disease, it's like I'm getting the diagnosis new all over again. Very hard to believe for me, but probably only because I have practically none of the typical symptoms. I don't even get to lose weight -- Instead, I gain it. Rapidly! I've been on Pred since mid-November and have just gotten down to 20mg (started at 40, got down to 30, and was bumped back up to 40). I have acquired the "moon face" in the past week or so. My mother noticed it earlier this week and said, "Wow Jen! Has your face ever gotten fat!". Um, gee. Thanks mom. Sounds like you're getting weaned off of it faster than I am. I'll probably end around the same time you do. I just hope I can lose some of this weight. Not that those of you that have had weight loss see it as a plus -- I know you don't and I know it isn't. I don't want the symptoms that come with the weight loss(pain diarrhea etc) I just want to lose........say..........40 pounds?

Don't know if that helps at all Cheeky, but that's part of my story.

hi AIjen (hehe my name is actually jenn too )... yeah i know, it's weird to adjust to this whole crohn's thing, i've had my ups and downs physically and emotionally but i remind myself that i am fortunate that my symptoms aren't as severe as some other people's and also i am lucky that i know what's going on.

as for the weight thing, i hear ya! another reason i didn't think i had crohn's before is cuz my weight was always up and down. i had gained a lot of weight 2 times in my life (first time lost 60 pounds through diet and exercise) and then the recent couple of years i had gained weight back due to stress and lazyness and just overall poor eating habits... then since april of this year, i started eating better and exercising more, so i began losing weight so i didn't realize crohn's had anything to do with it until i stopped exercising (due to pain and busy schedule) and was still losing weight quite fast... so now since april i'm down 40 pounds.

i'm lucky i had some meat on me and could afford to lose the pounds, but it is super weird hearing from people 'oh you look great, your skin looks good too!' cuz i have been looking better on the outside yet i'm so messed up on the inside, i'm sick! so weird.

i'm sure you're going to have ups and downs, and eventually your body will level out. i guess we just have to remind ourselves of what matters most, and it's our health right? so as much as it's hard dealing with negative thoughts of our body image, we gotta focus on whatever the bright side is.

good luck to you! oh my pharmacist said the symptoms that you get from prednisone (e.g. moon face, water retention etc) subside when you stop the med. so if you're coming off of it soon, you'll notice those things disappear... so hang in there!

 

[cheeky]

hi Cheeky & welcome to the forum

sorry to post a brief response, but it's 1.30am here and i'm falling asleep over my keyboard lol.

i too didn't have diarrhea, even when my Crohns was at it's very worst - i had constipation, which i presume was actually blockages as my colon turned out to be more badly effected than the doctors thought, pre surgery.

and i have vit B12 shots every 3 months.. i get mine done by the nurse at my GP surgery - they order the prescription in for me, and keep the vials there. it might be a different process where you are - i've read on here of people administering their own B12 injections. they do give me a kind of boost, but only seem to put back what i increasingly lose in energy as the 3 months ticks towards my due date.

hi dingbat! YES!! you read my mind! i was juuuust about to make a thread asking about the B12 shots... i'm really interested in trying them as i could use the energy boost and such.


i started drinking Boost as of yesterday to get some much needed nutrients and a few calories... chocolate flavour tastes pretty good.... i'm going to try to have at least one a day... maybe 2. (sorry that was off topic lol)

but yes, i'll ask my doctor about the B12 shots, i'd prefer to administer them myself cuz it's a headache for me to travel to the doctors, since i don't drive... and i hate the long weights.... or maybe i'd be able to get the injections at my work since there's a health clinic for the students (i work at a college) perhaps a nurse there could do it. we'll see.



thanks again everyone for reading my thread and replying. i appreciate the info!

 

[cheeky]

oops. edit button doesn't seem to work on previous post... i meant to say 'and i hate the long waits' as in the waiting room @ the doctors haha!

 

[heartofwisdom]

Cheeky,
Amazing story. Thanks for posting. Just goes to show the wide range of symptoms. Keep us informed.
Robin

 

[cheeky]

thanks robin! i will.

 

[teeny5]

You have certainly been through a lot Cheeky. Must be so frustrating to know that if they could have seen it sooner maybe you wouldn't have gone through so much. I don't have all the "typical" Crohn's symptoms either. I do get diarrhea but the most was like 6 times a day. I never have blood in my stool either. For some reason it seems that the Dr's focus on those two things. Why I don't know...if you talked to a group of Crohn's patients you would find out there is a wide range of experiences. I have learned much more from this forum than any where else. For awhile I felt like a crazy person having all these health issues with no explanation. Finally I got a diagnosis. My GP was kinda surprised I was happy about it. I told him atleast now I know it's not in my head. My GI just told me that he was worried about me when I first saw him. That made me feel better too...he was so casual at our appointments it made me question if I was really that sick or overreacting. I guess he just didn't want to stress me out or make me worry by revealing his concerns.

Anyway, hope you find the support that I have found in this wonderful forum.

 

[cheeky]

thanks teeny... yes, this forum is great, it's been super helpful so far and i appreciate being able to read about other people's experiences here.

on a side note, it's day 4 of me on the prednisone, and i officially feel better.... no pain, the gas seems to have calmed down and my appetite is definitely back. i feel hungry right now as i type, but i'm being careful not to eat too much. i haven't had problems sleeping yet, this morning i think my face looked a little bit puffy, but it might be in my head... i know that even when i'm not on meds, my eyes get a lil puffy sometimes so i dunno.

anyway, i'm just glad that i'll be able to go back to work tomorrow, and get through the day without being overly worried.

 

[cheeky]

btw, i did exercise for a bit this morning, 30 minutes on the elliptical, which i felt fine , but i didn't sweat at all which is unusual for me...so maybe i am retaining water cuz of the pred? oh well.

 

[teeny5]

That's great that you are feeling better!