Newly Diagnosed-What will the future bring?

Hi Everyone! My name is Jill and I was diagnosed with CD in July 2010 at age 26. I never experienced any symptoms in my life until this past spring. I feel like my CD diagnosis came out of left field. I am still in slight denial. Anyways, here’s a quick rundown of the past few months:

April 2010-July 2010 – I had been passing mucus once or twice a week, but I dismissed it because I was eating a very high fiber diet. I assumed I was just getting too much fiber.

Mid July 2010 – I had a 48 hour period of being in and out of the bathroom with several bowel movements (no D) with mucus and blood and flu-like symptoms. I finally told my husband about the weekly mucus and we decided to see a GI.

Late July 2010 – A colonoscopy was performed (my 3 year wedding anniversary was the night before and we celebrated with my husband mixing my prep with apple juice and him feeding it to me after I had violently thrown up the first 3 cups – it was truly one to remember - LOL) which showed several small ulcers, mostly in my ileum. Biopsies did not come back “chronic” for CD and blood tests and CAT scan were normal, but my doctor was pretty sure that was what I had, though I had no other symptoms. Being that the case, I didn’t start any medication.

August 2010-October 2010 – More symptoms started to develop such as more visits to the bathroom (about 3 trips a day), urgency, abdominal pain, and swollen tongue, so I began taking 2 pills of Lialda once a day.

November 2010 – I wasn’t feeling much better and the mucus wasn’t improving (my most prominent symptom), so I went to a teaching hospital in Philly to see a specialist. I was given Canasa to take before bed, which seemed to help the mucus after a few weeks.

December 2010-Present – I have been having some good days and bad. I did have two straight weeks in December that I felt no symptoms at all, which was glorious. However, during that time, I started feeling tightness/pressure in my chest that would come on mostly at night. But doctors don’t think it is Crohn’s related. And, most recently, I have been experiencing some constant mild-moderate abdominal pain. My doctor did just up my Lialda to 4 pills a day, so I am hoping that will help.

It hasn’t been an easy few months, but it certainly hasn’t been as bad as other stories I have read on here (I’ve been reading for awhile). But, I often worry this is only the beginning for me and I am afraid of what the future will bring. I have a few questions and would appreciate anyone willing to answer. Thanks for reading, and I apologize for it being so lengthy!

1. I have had only the one colonoscopy, but I fear the next because immediately after the procedure I felt a nagging pressure/pain in my upper left side (basically in the ribs)for weeks – has anyone else experienced this?

2. Since starting Lialda, I have noticed the toilets are stained a brownish/purplish color. My doctor seems stumped, but I am convinced it is the meds. Has anyone else noticed this and is it a concern?

3. Has anyone else’s tongue become swollen (no sores, though)? Doctor stumped on this one, too…

4. Has anyone else experienced chest pressure/pain?

5. Does CD always progress? Is it at all possible that what I am experiencing now is it, or does CD inevitably get worse?

Hi Jill! Welcome to the forums!

1. You may have pulled a muscle from vomiting the prep. My boyfriend had a similar pain after a bout of food poisoning.

2. Some other members have had purple pee from meds, so it is definately a possibility.

3. Not experienced this before.

4. Or this.

5. CD doesn't always progress, no. I think something like 10% of patients only get one or two flareups and that's it. Others manage their disease effectively with a mild med like Lialda.

Any other questions, feel free to ask!

Thanks for your reply, Rebecca. I never thought that the pain could have been caused by a pulled a muscle. That certainly makes sense. And thank you for giving me a little hope that I may not spiral downward. That is my biggest fear. I have been reading the forum for awhile and so many people suffer much worse than me. I keep wondering when I'll need to be rushed to the ER or need surgery. I need to think positive and that it may never happen, but it is difficult.

Hi Jill
and welcome

keep reading the boards! You'll see lots of success stories too! In time you'll be able to manage symptoms and not control them as such, but manage. Ask your doc to investigate the chest pain further, and panic attacks or anxiety can make this worse too, especially if you're fretting about what the future holds?
I wish you luck!
lotsa luv
Joan xxx

Hi, Joan! Yes, I did read some success stories on the forum. It certainly helps. Everyone I know seems to know someone with Crohn's and they all share such horrors stories. It was bringing me down. I know life will be more challenging, and I expect to have good days and bad days. But I am just praying the good will outweigh the bad! And I think you are right, the worrying is most likely causing me stress & the chest pain. I know I need to relax, because the stress doesn't help anything.

That's the spirit Jill!
You're half way there now hun!
Keep it all in the day! And say 'This too will pass'
You're doing just great!
xxx

Hi Jill, welcome to the forums.

You have a very optimistic outlook, which is good, and you should try your best to keep your optimism, as positive thinking is half of the battle in some cases.

I was in denial for the first few weeks of my diagnosis too, but it is much more beneficial to our health and to our minds, to be honest with ourselves and accept what we have, even if it is difficult.

It's hard to say what the future will bring, as Crohns is such a relative disease and no two cases are the same.

You seem to be handling it very well, and I wish you the best of luck for the future.


Liam

Thank you for all of the encourgement. I try to stay optimistic, but it much more difficult on bad days. On bad days I can really go off the deepend, which doesn't help things. My mother always tells me to "stay away from the dark side". I am really tying. And I must say, on good days, it is amazing how quickly I can bounce back and not dwell on my disease. And I am certainly hoping for more good days during my lifetime with Crohn's. Thanks again everyone for the warm welcome!

hi Jill, welcome to the forum

i agree with all that's been said already, and especially so on the stress/relaxation thing.. Crohn's Disease can definitely be affected and exacerbated by us being stressed out, anxious, or even panicky.. it's really worth practicing some relaxation methods, whether it's deep breathing, relaxing your body consciously, or taking up yoga... anything to bring the calm back to your mind will help..

i also wanted to say that possibly the pain after your colonoscopy could be gas trapped, from the air they pump into you during the procedure... it's amazing where that gas can actually cause pain later on, i've had it high up under my ribs, and on the tips of my shoulders!

dingbat said:

hi Jill, welcome to the forum

it's really worth practicing some relaxation methods, whether it's deep breathing, relaxing your body consciously, or taking up yoga...

i also wanted to say that possibly the pain after your colonoscopy could be gas trapped, from the air they pump into you during the procedure...

Click to expand...

I was thinking about taking up yoga actually. I used to work out regularly (mostly cardio), but have stopped because I don't want to lose any weight. I am struggling to stay around 120lbs (I am 5 foot 6 inches) as it is.

Also, I really thought it could be gas pains, as well. But it persisted for a little over 2 weeks. Could gas pains linger for that long.

2 weeks.. hmm i'm not sure, i think mine hung around for a few days.. i guess if it's really trapped in a little kink area it could last that long..?