Trying to understand what to expect

Hi Everyone,

I an unfortunately a new member to this site for posting but I have been reading people's stories here for the last number of months. I am looking for some advice/experience from anyone who might want to shed there own knowldege. I have a son who was diagnosed with CD last Nov (started probably about May07) and we are trying to understand both the near and long term effects this will have on him.

I apologize for the length of this post but I will plead being a "noob" that really needs some important information for a tough decision ahead.

The big reason right now is that we need to make a decision whether we are comfortable with him going out of town to university (2 hours away) or whether it would be best to keep him in town at the local one. The better university is the 2 hour away one.

The most troubling thing right now is the unknown. Can I expect things to get worst or are the signs/symptoms he is exhibiting right now (and the time frame since diagnosis) an indication that maybe the situation is somewhat under control or not too severe - or is it much too early to tell.

Here is his situation:

- diarreha started May 07 @ 4-5X/day

- bloody diarreha started Aug 07

- colonoscopy Nov 07 confirming Crohns (possible inflammation of illeum and also inflammation of colon @ one site)

- prednisone 40 mg tapered by 5mg every 2 wks

- normal stool after one month, no diarreha but still blood

- started Imuran 50mg Feb08

- started SCD with fish oil and L-Glutamine + vitamins Feb 23/08

- bleeding stopped Feb 28/08

- Wisdom teeth removed March 17/08 and given antibiotic for potential of infection (because of Imuran)

- some blood in stool two weeks after antibiotic (persisting now for two weeks - introduced probiotic to replenish good bacteria - no change in bloosy stool yet after 10 days of probiotic)

- BM since ealy Feb08 have been normal @ 1-2X/day

- never any abdominal pain at any time

My question is whether someone with CD that presented itself about one year ago, with the progression as I have outlined, can expect that things are not too bad or are they totally unpredictable. In other words, have newly diagnosed CD individuals normally progressed faster and mre severe or it this "normal".

Sorry for the length again but we are really struggling mentally with the potential of having a very sick son 2 hours away from us and on his own. Any experience/advice would be really welcomed. Thanks.

 

Welcome Jim83!! It's really awesome that you so supportive of your son. Have you looked into transferable credits? That way if you guys agreed, maybe he could do his freshman year at home and see how it was on him. If he decided that he felt well enough to tackle it, he could transfer his credits over to the better college. I know here we have that, would definitely be something to look into. Hope all goes well :)

 

Hi Jim,

I can relate. I am 29 and was diagnosed with crohns when I was 14. I had an absolutely miserable 2 years that was full of flares, abcesses, and fistulas.  Immuran worked very well for me and I managed to finish high school and go to college which was about 1.5 hours away from home.  For finanical reasons, I commuted to school which I found to be very nice.  The rides gave me time to think and I always had access to my GI and my support structures.  I don't know if commuting to school is an option in this case, but think about it. Perhaps starting off with a few credit hours 2x per week and commuting may allow you to figure out how college and the disease will mix. If things improve, he could always transfer fully at the start of the next semester. 

I have also had the opposite experience as well, and it wasn't pretty. When I finished college I went to graduate school 5 states away. In my second year, I became sick again. Violently sick. All the cramps, fevers, everything.  I tried to work with my Dr over the phone and adjusted doses of prednisone and immuran in an effort to gain control. It didn't work. One weekend, I crashed. I stayed home treating yet another flare which no amount of prednisone seemed to calm. by tuesday of the next week, I was dehydrated, hadn't eaten in a week, and way too weak.  I was fortunate enough to have good friends who checked up on me and helped me off my couch and got me to the ER.  I had no choice to but to take my chances with the local GI who turned out to be awesome. It was small bowel obstruction which he cleared with megadoses of prednisone and started me on Remicade which did a fantastic job of getting me through 3 additional years of grad school and a couple years of my post-doc. The remicade just recently stopped working and so I had surgery to remove the diseased bowel. I am slowly recovering. 

As for advice, this disease is just unpredictable.  But, you can't be afraid to live your life and turn down the opportunities that you earn and are available to you.  As you read above, I have both good and bad experiences.  The one thing I regret about grad school was that I never made a plan in case I got sick so I found myself out on a limb when it got really bad. I was lucky, I was given a good doctor.  See what kind of plan you could put togther assuming he is 2 hours away.  Is there a good Dr he could go to, how would he get there (freshman don't usually get parking on campus), where are the pharmacies for getting meds, pick a hospital in case an ER is necessary, what kind of dorm/living situation can he get.  Most importantly, how could he get home.  

You may find that after you go through trying to make a plan that maybe it isn't feasible to be 2 hours away or that it is suprisingly more acceptable. But try.  I firmly beleive that you can't let the disease define you.  I hope this helps a little and would be happy to talk with you guys.

ajz

Welcome, Jim83, but sorry you have to be here.

Only one thing is for sure with Crohn's. It affects everyone differently. If your son is to start school in the fall, at least you have a bit more time to get things under control. I pray that will happen for you.

That said, two hours away is not really too bad. I mean, if he does end up having some issues, coming home for an appointment one day would not be impossible, would it? Just a thought..... What does *he* want to do?

I was plagued with fears of the unknown for quite a while, so I can completely relate to what you're going through!

My son's case presented itself about a year ago now, too, though his colonoscopy to confirm diagnosis was June, 07. At that time, our GI put him on 60 mgs of prednisone, tapering and finishing in 8 weeks total. He was put on Asacol at the same time, and continues it today but would like to wean off of it. He feels it's no longer necessary. We will discuss this with his GI soon. So far we have been very fortunate to be able to get things under control. I attribute this to diet and probiotics.

Nevertheless, I am still a little concerned about college for my son (I have a little more time to play with, though, as he just turned 16. My daughter is your son's age, though, and heads off in the fall....). I just can't help myself! Like your son, he can stay local (it's very close--5 min. away) or go away. He follows his diet *extremely* carefully and I worry how easy this will be when he's away. I suppose we will have to MAKE it easy for him one way or another if he chooses to go away. We have considered an off-campus apartment, but can't afford a live-in cook!!! One thing for sure as far as we're concerned: we feel diet is crucial. Diet and probiotics to create the most hostile environment possible for the bad bacteria in the gut. I realize though, that this may not be what works for everyone.

Sorry. I know this doesn't answer your questions, but hopefully it does help to hear other's experiences. My hope for your son is that his transition to college is very easy and uncomplicated!

jim83 said...
Right now my son feels quite good (doing at number of sports at school -which makes we wonder about it aggravating the Crohn's from other posts I've seen) and outside of the blood in the stool you wouldn't know he has a problem, which is my dilema. Does history of this disease typically go this way, about a year now with no outward symptoms except for the bleeding (which does troubles me) and then it turns bad or does staying in this condition (with the expectation that the bleeding will cease) mirror anyone's experiences?

Unfortunately we also have to make a decision in 1 month from now so time with him in this condition is not on our side.

Thanks again.

I would think the fact that your son feels quite good--doing sports, etc.--means a lot. My son is a competitive swimmer and I believe he would say his CD does not affect his sport. It did, of course, when he was anemic from the bleeding, but thankfully he's not had a problem with his sport since he's no longer anemic.

As for your question about bleeding, my son's bleeding stopped while on prednisone, so I only have that experience to draw from. Does your son have any issues w/anemia?

Hopefully his bleeding will stop any day now! It sounds like he's doing very well!

I think the most important question is the maturity level of your son. Can you rely on him to monitor his situation and seek out your help or other medical help at the first sign of trouble. We all know what happens when we ignore the signs because we don't want to admit that things are starting up again. The disease starts to take hold and it takes longer to get it back under control. If he were living at home, you would be able to tell when/if things start to spiral out of control, but if he is two hours away and you are only seeing him once in a while, things could get bad quickly. If he is good about taking his meds and can be trusted to seek out help when needed, then let him pick the college he wants to go to. If not, then his health should be the top concern.

No real explanation for the success. I actually was able to go 9 years with out any hospitalization at all. I seem to have some symptoms at all times but the doctors don't see much active disease, except at the site of the anastamosis (sp). I did start on Xifaxan about 2 years ago. It is an off label use of an antibiotic that is used for travelers D. For me it has been great, it doesn't work for everyone.

You've hit on one of the hardest parts of CD, there isn't any rhyme or reason. Some things work, some things don't, and everyone is different. I am facing sending my younger daughter off to college this fall too. She doesn't have CD, but she has shown some signs. So I do worry about how far away she will be, and what to do if she gets sick. Obviously, it isn't quite the same level of concern that you have, but I can relate.

I wish you luck in you decision making. It sounds like you have a longer time frame to make your choice. We only have until May 1st, and she can't decide! Almost 2 hours away, or 40 minutes, I'm hoping for 40 minutes, but thats just so she can come home for dinner.