# My Crohn's Story (no diarrhea...anyone else?)



## suschex

I have been around the board for a little bit now but haven't done this intro yet so here goes...

Suzanne, 38 yrs. 

I was diagnosed with Crohn's Disease (complete colon involvement) 18 days ago.  Not sure if I have other involvement...only a colonoscopy so far.

I was actually almost diagnosed 9 years ago but a second opinion said no way, just IBS and stress.  So for 9 years I have had all the CD issues but no treatment.  

I rarely have the type/frequency of diarrhea that is typical of CD.  My CD symptoms are - cramping, pain, huge bloating, urge to go constant and strong even when no BM needed, nausea, fatugue, and feel as if every cell in my body is infected.    

I can remember having tummy issues my entire life.  The CD issues really began in preteens/early teen years.  I just never realized that what I was feeling/dealing with wasn't normal.  

I have known for the past year (that is when this flare started) there was something wrong with me...they tested for every illness and infectioius disease, hormones, thyroid, everything possible...I knew I didn't feel the way I should but they just couldn't sort it out.  21 days ago the diarrhea started and 18 days ago I began bleeding, a lot...that is what finally led to a colonoscopy.  The doctor said it was super easy to tell and the biopsises confirmed CD.  Guess that is the one good thing about finally having the CD type diarrhea and bleeding for once...gave them a clue to look in my colon!

I am now on day 18 of Prednisone (40mg) and will be starting Humira and/or 6MP after all my labs come back.  Although the diarrhea and bleeding have stopped (and I am thankful for that) I do not feel any better at all yet.  I am trying to keep my chin up and remember that now there is an answer and that means there is a treament!  I am just anxious to get moving on to feeling better again!!!

Thanks for listenening...hope to get to know some of you guys!  :sign0144:


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## Astra

Hiya Suzanne
and welcome

So glad you finally got a diagnosis and once the Pred kicks in you'll hopefully start feeling much better. I was on Pred for nearly a year last year and it took a while to work it's magic, so hang on in there!
Good luck with your new meds, either Humira or 6MP, we have a Humira Club on here, lots of info for you
Lotsa Luv
Joan xxx


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## stupidbody!

Yes! I've been constipated as long as I can remember. In jr. high I would only go once a week! Didn't ever think it wasn't normal at the time. Eventually got to were I was going every day or two. In college had small amounts of blood every now and then. When my daughter was a few months old had a HUGE flare - blood, hard and watery stool in same bm, the whole nine yards. Personally pred. didn't help until I was upped to 50mg. Humira is wonderful for me!! Hope it helps you! It has petered out a little over the months. I'm just a little more tired but still doing well comparatively. Yeah, constipation does not seem as common with crohn's but some people still are on that end of the spectrum.


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## xJillx

Hi and welcome!  I don't really experience D either.  I have loose/thin BM's, but never watery D like many others.  However, like you, I often get the feeling like I have to go, but I don't.  Do you have an issue with mucus?  I have found that this causing me the got-to-go feeling.  

I am glad the D and blood has stopped, but I hope you feel better soon.  You said you may start Humira and/or 6MP - what do you think you will most likely start with?  If I were you, I'd maybe start with 6MP only.  If it doesn't work on its own, then I'd consider adding in or switching to Humira.  However, 6MP can take up to 3 months to fully kick in, so you may not want to wait that long for results.  So, regardless of what treatment route you decide to go, I wish you luck!


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## suschex

Jill - I don't have any mucus.  My husband and I are going to meet with the doc next thurs to discuss the two medications.  It is so hard to think that all the meds are going to take possibly 2+ months to help.  I just want to feel better now...I know everyone must feel that same way!  

I'm sorry you had your diagnosis retracted...I hope it is sorted out for you soon!!!


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## xJillx

You're right, it really stinks that these meds take so long to kick in.  Many people take pred while starting a new treatment, so the pred can address the inflammation and symptoms immediately and allow the other med the time to kick in.  I can't believe that 40mg of pred isn't reducing the pain for you.  I know some people go as high as 60mg, but I'd do that with caution.  I sure hope you get relief soon!


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## suschex

xJillx said:


> You're right, it really stinks that these meds take so long to kick in.  Many people take pred while starting a new treatment, so the pred can address the inflammation and symptoms immediately and allow the other med the time to kick in.  I can't believe that 40mg of pred isn't reducing the pain for you.  I know some people go as high as 60mg, but I'd do that with caution.  I sure hope you get relief soon!


I really don't want to go up on prednisone.  I have not really had bad side effects at all....touch of insomnia and a bit of the jitters at times but no other signs of the stuff in my body.  I wondered if the IV steroids were different or if steroids just won't help me...guess I will have to just wait and find out...

Thanks for your posts...helps to not feel so very alone!


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## stupidbody!

I was at 40mg of prednisone for awhile and it didn't seem like it helped much at all. It was amazing to me how much 50-60 mg helped. I hate prednisone too. It sucks getting off of it. If you're already on that rotten drug upping your dose might make all the difference. I don't know anything about 6mp. I do know for me I had more energy with humira the next day and my main symptoms faded away within a week or two. Humira also helped me get off of prednisone. I tried twice before humira and failed miserably. It wasn't that bad weaning off prednisone on humira. I'm just bummed it's not working as well after 7 months - I really like this drug. Anyway, that's my 2 cents if you want to feel better soon. 

Come to think of it it took me awhile to even get my hands on humira between insurance, a specialty pharmacy, etc. Good luck with your dr. appt. Hope you and your dr. can figure something out that will help soon. It's no fun being sick!


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## Denise

Welcome and sorry that you just been diagnosed with CD.

Your story sounds like mine.  I was also told I had IBS about 10 years ago.  I have ignored my symptoms until recently when the pain was so bad and I had blood.  But I also didn't get those big D symptoms thus my doc is only saying "most likely" CD based on bx from my colonscopy.  

Good luck and I hope you get relief soon.


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## suschex

Denise said:


> Welcome and sorry that you just been diagnosed with CD.
> 
> Your story sounds like mine.  I was also told I had IBS about 10 years ago.  I have ignored my symptoms until recently when the pain was so bad and I had blood.  But I also didn't get those big D symptoms thus my doc is only saying "most likely" CD based on bx from my colonscopy.
> 
> Good luck and I hope you get relief soon.


Our stories do sound similar!  When will you hear back about the biopsies?  Have you thought about getting a second opinion?  I know if I had 9 years ago this could have all gone very differently for me.  

I am so sorry you too are struggling for a diagnosis!  Does your doctor have you taking anything to help with the issues and pain?  I hope they are able to sort it out for you and get going toward health soon! 

Oh, I also have two little ones (not as young as yours anymore) 5yrs and 6yrs...I know how much that can add to all of this stuff as well!

Hang in there!!!:hug:


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## Denise

The biopsy showed granulomas which usually indicates CD (or infection).  I also have joint pain that comes and goes.  But right now, I don't have any meds (which is frustrating).  The only thing I have is Lax-a-day (which from the sound of it could be miralax??).  I use it when I get so bloated and feel like I have glass pushing against my stomach.  Then I have to go to the bathroom tons (like my whole intestine was full of poop) but it is never hard.  It's soft, probably a 5 or 6 on that stool scale.

I am thinking about a second opinion but I am waiting to go for my SBFT.  Hopefully he will see something that points him in the right direction.

I don't remember if you are on anything for pain.  What do you take??

Your little ones are still little too!!   Busy busy - are they in kindergarten and grade one?  They are so close in age and that must be a lot of work.  

Thanks for the kind words.


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## suschex

Denise said:


> The biopsy showed granulomas which usually indicates CD (or infection).  I also have joint pain that comes and goes.  But right now, I don't have any meds (which is frustrating).  The only thing I have is Lax-a-day (which from the sound of it could be miralax??).  I use it when I get so bloated and feel like I have glass pushing against my stomach.  Then I have to go to the bathroom tons (like my whole intestine was full of poop) but it is never hard.  It's soft, probably a 5 or 6 on that stool scale.
> 
> I am thinking about a second opinion but I am waiting to go for my SBFT.  Hopefully he will see something that points him in the right direction.
> 
> I don't remember if you are on anything for pain.  What do you take??
> 
> Your little ones are still little too!!   Busy busy - are they in kindergarten and grade one?  They are so close in age and that must be a lot of work.
> 
> Thanks for the kind words.


Not having any meds must be very frustrating!  I am on 40mg Prednisone as well as Tramadol and Zofran as needed for pain and nausea...some days I am fine and others I have to take them.  

What is an SBFT?  I have only had a colonoscooy and a CT with IV and Barium contrast.  

My kiddos are 21 months apart...one is turning 5 next week and the other is 6.  They are in pre-K (3 days a week) and 1st grade.  Yes, a lot of work but nothing compared to a few years ago!  Being sick and not knowing why all the years they were so young was just difficult....I think I thought of that when I thought of your situation and then saw your little ones ages...just tugged at my heart and memory.

I hope your SBFT sorts things out!!!!!


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## Denise

A SBFT is a small bowel follow through which you drink barium and then they take xrays as it travels to the end of your small bowel.  It can take at least 2 hours or up to 6 depending on the speed of your bowels.  I guess if you have CD in your ileum it's evident.  That is where my inflammation and granuloma was in my terminal ileum.

Hey my kids are 22 months part!    I can really relate to you too!  My youngest bday is first though (in may over july) so they will only be "a year apart" for 2 months.    I can see how my kids age would pull memories for you.  At least I can see if gets a little easier (right!!  )

The tests I have had are a colonscopy (inflammation and granuloma in TI), pill cam or VCE (inflammation in TI), and now this test on monday.  Wish me luck.

How is it taking prednisone?


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## suschex

The SBFT sounds like the CT I had last week.  My Crohn's only effects my colon, the entire colon but no other areas.  I think the big issue for me is the missed diagnosis 9 years ago so it has had time to really do a lot of damage and will take a while to repair.  Prednisone is OK.  I have had some jitters, insomnia, a bit irritable, knees ache.  It's hard to say how much is the Pred. and how much is the chronic pain, frustration and dealing with the diagnosis.  It's not fun but has been tolerable for sure.

Good luck with your test!

Oh, and yes, I does get easier!  I loved my kids at the younger ages as well but the little things they can do now (get food/drinks, take a bath, go to the bathroom, art projects, go to school, etc.) for themselves helps so much on the tough days!


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## Jessi

Hi Suzanne.  Welcome to the family. 

So sorry about your diagnosis. But I hope you're starting to feel more comfortable about it, knowing that there are so many friends here to help, and that it's not a death sentence. 

I hope your steroids start helping you real soon. I was put on 60mg in May. Worked quickly, but everyone's different. 

Hang in there, hun. :hug:


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## Stillindenial

I just found this forum...I've had terrible tummy aches, tiredness and bloatedness since I can remember...but only lately with fever, needing to go often (not D)..and some mental confusion..inability to concentrate etc. I had 5 or 6 colonscopies...always inconclusive, only inflammation...however Pentasa is helping reduce the flare ups. Bur I am still so confused. I'm a bit worried hearing that you all are on suppliments etc. My doctor is a surgeon and I'm afraid he does not know enough to help me with this.


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## stupidbody!

Stillindenial- have you tried seeing any other doctors? It seems like many of us with crohn's have seen more than one dr before we found one we liked, trusted, or actually helped us. I saw 3 before I got a proper diagnosis. There are doctors who can help you. It can be hard to find a good one sometimes. Please make sure someone helps you.


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## suschex

I totally agree with stupidbody!  It is always wise to get a second opinion...even if it just for peace of mind!  Is there a GI in your area you can see?  What is your diagnosis...Crohn's?  I'm glad the Pentasa has helped you!


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## Stillindenial

I must have been to 5 already! None could tell me what I had...or even bothered to ask the right questions it seems now! I live in Malta....very few doctors are actually available on the small island. But thanks for your replies. It is part of the process, it seems to be unsure of what you actually have for quiet some time! But it sure helps having a better idea!


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## outlier

I also never had Diarrhea with my crohn's. I was dx because i had other inflammatory issues and anemia. we are out there.  hope it goes away soon.
good luck!


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