Son in agony- Is this now his normal?

I am new to this forum- first one I ever found that looks like people are actually reading and posting.

My son was diagnosed with Crohn's his sopohmore year of college, April 2005. At first it was difficult to get him to take his meds-Colazol 9 pills a day is I think what he was on back then. As far as I know his last 3 years of school he did pretty well. He seemed to be living a normal life and rarely complained of any discomfort. At some point they added azathioprine to his meds. Since he was 300 miles away at school and his gastroenterologist was here in our home town he did not have regular visits with the DR but usually would go in in the summer for a check up. We liked and trusted this doctor. He was always available for phone calls or responded to e-mails if my son contacted him that way.

After graduation my son accepted a teaching position and remained living away from home. At that point he got health insurance through work and since he was still 5 hours away and in another state it was time for him to find a new gastroenterologist. Year one went well. I encouraged him to get a GP and a GI doctor so if and when he did have a flare up he would have established a relationship with a Dr. but he did not get to that. I am sure he thought things were under control and hoped they would stay that way. Since he had always been inconsistent about taking his meds he had stock piled enough that he had plenty without getting new prescriptions.

Year two has ended up being miserable. Last August right before going back to school he had an intense flare up. Girl friend has just broken up with him, nerves about going back to work, I am not sure what triggered it. Even though his insurance did not require him to have a referral to see a GI Dr the practice that was closest to him refused to see him without him first seeing a GP. I begged the Dr to see him and said we could get orginal GI Dr to call and send records but they would not budge. So, he picked a PCP and went for a visit. The PCP put him on antibiotics and predizone and set up an appointment with the GI doctor. SIX WEEKS until he could be seen! I was livid. Thankfully the meds worked and things seemed to settle down. So much so that by the time the GI doctor did a colonoscopy at the end of October it was totally clean. He questioned if my son even had Crohn's. I was at that appointment and asked if he had read the notes from the previous GI and he didn't have them. Turns out when I had said we could have the records sent they thought I would follow through on that. In my mind when they turned down my request to see him without a referral we assumed that they would follow normal procedures and have my son sign a release and they would request them. ( I know- meddling Mom ended up causing a hassle but I was trying to help) So they said they would see him again in 3 months-end of January. My son missed the appointment because they didn't make a reminder call and he was feeling pretty well so it slipped his mind.

Mid-February they had record snows and he was off from school for 3 weeks. Started flaring up again and went back to the GP. Tried the antibiotics and predizone again and got no relief. Back to the GI Dr and they found he had a rare GI infection. 6 weeks go by. Lots of bloody diarrhea and they were concerned about his red blood count. He came home for Easter and had lost 30 pounds and looked grey. Had a friend do blood work and found out his hemoglobin was 6.9. So off to the emergency room where they admitted him and gave him 2 units of blood. They wanted him to stay for another colonoscopy but he said he needed to get back to work the next day. They released him with the understanding he would follow up with his DR when he got home.


After this episode both my husband and I tried to get in touch with the new GI doctor and he would not return our calls. He has started seeing my son more frequently and seemed to be monitoring things better. Late June- they have been weening him off the prednizone and symptoms start to recur shortly after a mid June visit to the GI Dr. Next appointment July 26. But we can't wait that long. This weekend my son was visiting friends about an hour from my home. He called last night in tears. Horrible pain. Got to meet another ER staff. All they did was said to increase the prednizone back to 60Mg and see if that helps. They did an X-ray checking for some bizarre stomach condition. NO BLOOD WORK!

I am so frustrated. He is only 25 and this is no way for him to live. I have noticed that the flares seem to start when he is not working and probably out partying. We have asked every GI Dr if he should stay away from alcohol and they all have said that should not be a factor.

Today I was looking at the Remicaid sight. The risks of cancer really worry me but maybe if it makes him feel better it is worth the risk. One other thing- his original GI Dr the day he was diagnosed said- Crohns- no cure, you will have this for life. I think that has set the tone for the past 5 years. My son thinks he will never feel normal again. Even on what he says are good days I hear his stomach gurgling from across the room. I think that is my question- should I continue to tell him that if we find the right treatment he can lead a normal life or is pain, discomfort, bloody stools, diarrhea, embarrassing scenes in public bathrooms, etc now his normal?

His symptoms will vary up and down. He will only live a "normal" life if the disease goes into remission. Otherwise, he should be able to live a mostly normal life at times with treatment.

I suggest he try a strong multi-probiotic, digestive enzymes, and a natural God-made diet for a while, in addition to medicine. It will help alleviate some of his suffering and could even vastly improve his symptoms.

If he is not doing well on his meds, then he should try another med, and keep trying untill all treatment options are exhausted.
That is what most of do.

emptynester2010: Hi, I' sorry that your son is struggling with Crohn's. Unfortunately I side with several others in the above discussion regarding assisting a 25 year old in obtaining medical care. He is an educated individual who is going to learn through experience what he can and can't eat, how bad life gets if one doesn't take meds, effectively develop coping skills etc. Pain and negative moments in all of our lives are supposed to teach us something and mom's jumping in to rescue kids only delay the learning process. The physician's office is perfectly capable of obtaining medical records from other doc's -they do this all the time, so again, not really your role.

It's hard for the good co-dependent mother (Me being the best) at learning to back off and let the learning commence. What ever the story is, it really doesn't matter -he needs to be responsible for his own health -own his own decisions and problem solve accordingly. My suggestion, change the subject when he discusses his health (unless its an emergency), go the gym more often to work off stress and travel -develop fun things to do outside of being "mother". Take care!

Ok-I see the general trend here is to assume I am a helicopter Mom-which I am.  However,  in this case I feel that it is warrented.   I think that he probably has gotten in with an incomptant gastroenterologist.   Believe me we have tried to give the man every benefit of the doubt.  My husband is a GP and we know how easy it is for patients to blame it all on the doctor.   This GI doc didn't even know what azathioprine was when my son had his first visit.  The GI infection my son had was campylobacter .  And no they have not done follow up tests to see if it is gone.   My son has now been on prednizone for the better part of a year and that is too long. I don't want to be the one looking into alternative solutions so I guess if the Dr does not come up with an altermative plan my son needs to find a new Dr. 

In general I have been trying to make him deal with this on his own.   My plate is full with a mother with Alzheimers and just moving to a farm that needs plenty of TLC.  However when your son shows up looking like death and you have access to getting a blood test and find out he is at a dangerouly low level you don't ignore it. 

Thanks for the link to the webinar.  I found it quite helpful.

Emtpynester 2010

Welcome to HW! You'll find alot of information here to help you and your son.

I really feel for what you are going through with your son.  I too am an emptynester 2 kids 23 and 19.  Children have mind of their own and unfortuantley sometimes they have to learn the hard way.

But, I have to agree with grumpygi...Your son (very unfortunatley) has an Auto-Immune Disease. There are no cures for this. As mean as it sounds with disease comes responsibility/education about the disease. Once you are educated you have the choice of being responsible or not. He is 25 years old and an adult. I have met young children with diabetes more responsible than young adults about their bodies.

Even me and my daughter...she had an eating disorder that I found out about at 17 years old...I had 10 days before she turned 18 to do anything about it. 10 days later the Dr.'s office mad it clear they could and would not discuss anything with me. Frustrating to me but, looking back I had to let go. I couldn't be their to remind her of ever visit and set her alarm clock.....she had to do it herself! I did make myself available for counseling but she herself had to come to terms with it.

In saying all of this...I'm sorry for you and your family. Crohns does rear it's ugly at the worst of times. Unfortunatley, for males when it comes on young seems to be the worst.  STRESS has so much to do with it and FATIGUE.

I will make a few suggestions that would just be good for you to know. Your son needs stay in one place and build a relationship with a GI, a regular MD and eventually more than likely a Rhuemy. It is just as frustrating to Dr.'s NOT to have a relationship with their patients then prescribing medicine they are not sure they're even taking!!  Drinking and not taking good care of himself will make it worse.  He should keep a diary of what he eats and effects that the food has on him. Every Crohnie has different food that works. Also, having a clean colonsocpy in the large intestines doesn't mean that his small intestines couldn't be infected. I know you mentioned he had med's that were old that he could take. I know I've kept some of my older prescriptions for that reason too because they are expensive. Well,  my GI told me that the medicine in it wouldn't not be active after a few months on a shelf... just so you know.

Best of Luck to you and your son...mention this website to him. When I was first diagnosed it took me a year of just reading this website before I actually wrote something. It was difficult to accept.

He'll come around!

I didn't read all of the above so I hope I am not duplicating anything. I am on Remicade and find this presentation very very excellent.

http://programs.rmei.com/CCFA139VL/start.html

I really feel what you are going through, although I am yet to experience it(son 17) and due to go to uni next September.

I keep telling myself that I am going to have to relinquish control but I think it it easier said than done.

I agree with what people have said about our (adult) children taken control themselves but in the same vein anyone that has become run-down with an illness  can almost see no way out and needs someone to step in and either speak out for them or give them a nudge in the right direction.

He obviously turned to you in his hour of need so I think that you are right to be his advocate. When he is feeling better about things I am sure that he will let you know.

The side affects of all these drugs are scary but I guess if they give someone the chance of a relatively normal life with minor symptoms with a slight risk of developing something more sinister this is preferable to having to constantly battle the pain and misery of this disease.

Either way it is not an easy choice, but with your help your son can make the right decision for him.

Thanks for all of the support and advice.  Today is a better day for all.  My son is back at his home and had to go into work which was a positive.  He has a group of friends there that are very supportive.  Probably got his mind off things.  

Either the increased dose of prednizone is alleviating the pain or he just had a bad night on Saturday.  He had been out golfing in the heat of the day-90+ degrees that day.   Had done the same about 3 weeks ago and didn't feel great afterward.  So maybe he needs to add that to his list of things he should avoid.  Not golfing in general but maybe try to avoid it when it is so hot. 

Anyway,  the worst seems to have passed and he has an appointment next Monday.  He said he will bring up Remicaid again. Based on the response he gets we will decide if we want to encourage him to seek a second opionion.  The suggestion of checking with his first GI doc to see if he knows of anyone in that area is a good one and I will also suggest he check out the websites that you mentioned to see if there are other GI docs in his area that seem to have positive ratings.

 

I know that heat can stir up "D" symptoms in my Daughter and she is normally a more constipated IBDer. I agree that it is a good thing that your Son was feeling up to golfing. My Daughter tries not to let much stop her, but if conditions are not ideal, like heat, she ends up suffering a bit.

Same for when she goes out with friends planning on only a drink or two and ends up having a couple more. She pays dearly for that.

Would she do it differently? Sometimes maybe, most times not. She refuses to miss out on life.
Thinking this may change and she will be a little more careful maybe when she hits 30ish and settles down in life a bit more.

They are all lessons learned for IBDers. What their individual bodies can tolerate and not!!

I'll be honest, I agree with cleo.  I wish my mom wasn't a helicopter mom, now I feel like I'm 23 and I'm just now starting to learn how to "take care" of myself.  Remembering to take my pills without being told, remembering dr's appointments ect ect.  If he's old enough to move away from you, go through college, and then get a teaching job...then he's certainly old enough to take his meds and go to his appointments.

I'm also not trying to be harsh, but you are enabling him to continue his behavior.

I've had this disease since I was 19. I'm 48 now. No problemo at all. After two surgeries that produced squat I finally figured out what was good for me. Here is my toxic recipe which works great.

1 Mercapto purine per day
2 20 mg omiprazole tablets
a couple of spoons of metamucal per day
1 1/2 bottles of Merlot.

Believe it or not it works great ..... burp.

I guess I'm a cheap skate and refused to pay all the money for pills so I go to GenericDoctor.com . Cost of disease is about $25/month for the disease. Really, I finally feel good. I remember not being able to make it across my apartment because of stomach pain. This disease is controllable.

emptynester - I'm am fully grown, 42 with a daughter. I turn to my parents for support, and sometimes to bounce ideas off. Both parents are supportive, but it's my body and it's my decisions to make. You can be there for your son. No need for completely walking away, but if he doesn't take care of himself, he simply needs to learn to do that. I know, as a mother, it is very difficult to see your child deal with horrible medical issues. life can seem so unfair sometimes and these drugs can be scary. Maybe if you talk openly with your son, telling him you respect his right to take care of himself and that you'd like to be supportive for him, maybe that will be good for both of you... We all do the best we can in this life. You shouldn't feel judged for loving your son and wanting to help. It may be time for him to feel a wake-up call about reality, but much denial can go along with this disease also.

joe123abc - most of the time this disease can be controlled. Bold statements don't help. Sometimes it cannot be controlled with every possible effort in the world.

I AGREE! This thread totally swayed from the original question being asked in this post! It's got nothing to due with parenting skills at all. sr5599, your reply is wonderful and spot on!

Mom, I have to say that there is a good possibility that with the right meds, your Son can have longer spans of feeling well as long as he can tolerate the bigger gun meds available for IBD.

My Daughter had a good run of good health after she started Remicade. It's 7 years later and the good effects do run its course and not working as well so her health has been struggling even on Remicade for the past couple of years. Was Remicade 100% perfect in keeping symptoms at bay even in the early years of it, No, but quality of life was definitely better than where she had been the 4 years previous to Remicade.

We both have 20 something Adult IBDers who have not quite totally settled down into what us Parents would consider a true Adult Life. They still like to play, burn the candle at both ends, not always take their meds like they should unless they are feeling poorly. My Daughter has had IBD for 11 years. Is she in denial, No, but she likes to forget she has it sometimes. They want to feel invincible like their healthier friends.

Since my Daughter does not have a significant other to lean on at this particular time in her life, I, as her Parent, am her support system. I hate that I have to do it long distance, her choice to move out-of-state though. I hate that I am not there when she ends up in an ER or Urgent Care and has to depend on whatever friend is available to support her. I hate that part the most. Does it make me a hovering Mom when I have to scold her for not being diligent in taking her meds and not taking care of herself better sometimes? No, I don't think so. It is out of sheer love and concern we do this for our kids. Parents hate their kids having this disease as much their kid hates having it. Our Parenting skills are just fine until our kids find a loving, caring significant other that can take over for us!! And even then, we will be lurking in the shadows, but more quietly and silently.