Concerned Sister

[Bex4332]

Hi there,
I am posting as a concerned sister of a newly diagnosed Crohns 21yo male, looking for advice from persons, like yourselves, who have gone through the process of diagnosis, treatment, adjustments, etc.

My brothers dx of Crohns was confirmed about 5wks ago from a colonoscopy but his episodes having been occuring intermittently for probably 5-6 yrs. The most recent episode led to this diagnosis due to me and my moms insistence he seek medical care. The episode probably started about 8-12 weeks ago and he was seen by his PCP, referred to a gastro but while waiting to be seen at the GI he went into the ER and Urgent care for pain/spasms/etc. By this time, he had dropped from 175 to 150 at 6'3'' over the course of 2-3mos.

During the first GI visit, the Doc suspected an ulcer
(sent him for labs, hpylori, rx the ulcer diet) and scheduled an endoscopy. Over that weekend, he called the doc b/c of pain and inability to eat and doc rx a med to coat the esophogeal-stomach lining but no pain meds. Had the endoscopy-not an ulcer but he had moderate-severe epithelial inflammation. Scheduled for colonoscopy 10days later (seriously??)-during which Crohns was confirmed of ileocolitis type with two known abscesses and perianal complications. Doc prescribes prednisone BID, pentasa bid, cipro, flagyl, align probitoic and to continue low food map diet + gluten free+ lactose free. F/u scheduled for 4wks.
Fast fwd- he kind of feels better (intermittent good not intermittent bad). 4wk f/u was three days ago and the night before he went to urgent care again for pain/insomnia/anorexia/dizziness (given tramadol). At f/u Doc tells him that his current status of Crohs is a severity 7/10, he cant go to basic on April 1 (which is something I already knew was not going to occur b/c crohns is automatic exemption for entry into all armed forces, including during a draft) but might be able to go in 6mos if he can get it under control. (Complete bulls**T). Rx are now: Pentasa 2 capsulses q6h, Prednisone bid, Xifamin, Align for the next few weeks, new order is to limit food intake to soft foods only with Ensure three times a day to maintain current weight (again- 150 @ 6'4'').

After the initial dx, I looked into support groups, forums like this, nursing textbooks i still have around, etc. Both my mom and I think he needs to seek pyschologically counseling for adjustment to the diagnosis and how to re-organize his "life plan" (ie. he wont be joining the AirForce anymore). I have a list of the local chapters for CCFA and a recommendation for a nutritionist.

As persons who have been dx with/family members of person with:
1. Did you find counseling, pyschologically or nutritional, helpful?
2. What is the one suggestion you would make to someone like myself who is concerned with being a support person.

Lastly and most importantly-
Thoughts on seeking a 2nd opinion?
After doing lots of research (i have mental health, gyno, nursing background and work experience, biology (2nd) degree in process, and possible md/research pathway) I honestly think he is being undermanaged and that the Doc is prescribing conventional step up therapies but from the CDAI guidelines, scientific journal articles and reviews- he seems to meet the qualifications for a more top-down therapy module for mucosal healing to reduce risk of surgery and limit the already inexistence havoc to his entire bowel.

I know this may seem like I am an uptight nancy but my brother is an ostrich. He didnt even look up crohns after the initial dx and tends to project inward, isolating himself, during issues. I fully understand the potential ramifications of his disease and want to make sure that he has the best outcomes possible since he is younger and may not want to face the realities of the initial process of putting crohns into remission, not to mention the long term concerns at this time. I cant imagine being diagnosed at this point in his life and feeling like everything went to shiz. Until he can come to terms with it and show some understanding of his role in controlling the disease process and advocating for himself- I cant help but nudge....(or propel :blush
Thanks for any advice/suggestions. I really do appreciate your time and perspective.

 

[afidz]

Hello and welcome! I think its great that you are trying to find ways to support your brother, a lot of us on here wish we had more family support, so he is very lucky to have you and your mom in his life.
I amy be mistaken, so I am going to tag Jennifer here to correct me if I am wrong, but I believe that Pentesa is not a very effective drug for Crohn's because it only helps the lining of the intestinal wall. Pentesa is generally prescribed to Ulcerative Colitis for that reaason. Crohn's effects all of the layers of the intestinal wall. But, if he is feeling better, then it may be working, but him feeling better can also be because of the Prednisone. I am concerned that once he begins to taper off of the Prednisone that his symptoms would come back because Pentesa is not meant to treat Crohn's.
Also, you mentioned that he is to drink Ensure, is that the Ensure Clear or the powder? There is an ingredient in most supplemental drinks (and tons of other things we consume) called carrageenan, it is a preservative derived from boiled down seaweed. To the normal person this preservative is not harmful, but there is studies that suggest that it can aid in disease progression. Here is an article on the forum wiki, http://www.crohnsforum.com/wiki/Carrageenan
The best thing that you can do for your brother is be supportive. DX of Crohn's can be scary and everyone handles it differently, try not to push anything on him. A lot of people do seek counseling after DX but its has to be their choice. Tell him about this forum (again don't push it) this forum has helped me (and a lot of other people) through some really touch situations and I am greatful everyday that I found it.
I hope that he finds a treatment plan that works, again I might be incorrect on the Pentesa thing, if I am, someone will be around to correct me. I think second opinions are always a good idea. One thing that may be beneficial is to get copies of the DX records so if you are going to get a second opinion you don't have to redo the tests.

 

[Bex4332]

Hi afidz,

Thank you for your reply. My siblings and I have been through a lot together, especially my brother and I. At 5 years older, and the eldest, I am the insitigator/teaser/protector all rolled up in one. At this juncture, I am more concerned with being prepared for whatever he needs and hopefully, if he asks, assist with the transition. I know its very common for family/friends to dismiss other peoples pain/problems/medical diagnosis, I feel empathy for those with no support. The usual responses can be dismissive and sometimes act as if you choose it to happen- I work in MH right now and even people I work with have stigmas against MH issues/substance abuse issues even though its proven that while one person could take opiates, another will become addicted after one dose. Judge and jury isnt helpful when dealing with someones pain- whether physical, mental, or pyschological.

I will definitely mention the forum and the local support groups- I can be superportive (its a word) 24/7 but talking with/seeing others with Crohns manage and overcome is a whole different pyschosocial aide.

As far as pentasa, I saw more heavily UC based use in some of my research. I also noticied ensure isnt frequently mentioned as a supplement for crohns- On the UCSF health website "Nutrition Tips for IBD" listed peptamen, peptamen 1.5, modulen IBD, EnLive!, Lipisorb, Subdue, Vivonex, and Optimental as options due to proteins or fats being partially broken down, contains MCT oil for ease of absoprtion since they are trying to put the less amount of work/stress on the digestive function of the GI tract.

As far as feeling better, I had to pick up drugs at my parents house and take them to him at work b/c he was in such pain/discomfort. My other concern is that he is going veryyyy quickly through the limited opiates/pain meds he has been prescribed (during ER/Urgent care visits)...either they arent working or the Crohns meds arent working.
Why is it so unusual for docs to rx sublinigual,buccal, dermal patch options for pain so that the GI tract isnt even more irritated/stressed by such hard chemicals?

 

[Clash]

I agree with afidz, it does not sound to me that they have him on a maintenance treatment that is going to be able to control the level of disease he seems to have. I would seek out a second opinion.

Many Gis use the bottom up approach and many use the top down approach,
my son's dx'ing GI was a bottom up approach GI
but after seeing my son's TI he stated
my son needed to go straight to a biologic like remicade.

Since the dx'ing GI was an adult GI we sought out a Ped GI as our son was 15.
The Ped GI was a top down approach doc so we started
with Remicade and have since added MTX

My son's inflammation was just at his TI
at the time there was narrowing due to inflammation in a small area of TI
his colon and perianal area were good

My son attended a Military Prep School(which of course was JROTC)
and had plans to attend college through ROTC
this of course was no longer an option after the CD dx
and it took some time for him to adjust to the dx and it's repercussions
He had been in Military College Prep School since 6th grade and had the ROTC plan
since enrolling.

He is adjusting well now and starting to make other plans
post HS graduation regarding college, majors and career.

I hope your brother finds remission soon and is feeling better quickly.

 

[afidz]

The reason.GI's don't prescribe pain meds is because it slows down the digestive tract and can make you constipated possibly causing an obstruction. some will on a temporary basis if the pain is unbearable, but most do not. He can try something like bentyl, its anti spasmodic so it might help with the cramps, have him talk to his doctor

 

[Jennifer]

I'll research afidz information tomorrow on the medication. It sounds correct but I'd like to share a source.

One thing I can suggest to you is suggest going with him to his doctor appointments if he's ok with that. Together you can make a list of the things you'd like to go over with the doctor and make sure all your questions and concerns are answered. Having a buddy there with you helps you stay on topic and not get too flustered and feel rushed to get out of there. Its best to let the patient answer all the questions and only interject if they left something out. Other than that you sit back and stay quiet so your brother feels like he's doing it himself.

Counseling can help but since he's 21 he has to make these decisions for himself. At some point he will realize the magnitude of his condition and seek help/treatment but will need to learn to do this on his own. You can be a shoulder to cry on and be there for him if he has any questions but we can't force people to seek treatment (unless its an emergency).

My sister also has Crohn's and it drives me nuts that she still doesn't have a GI and hasn't been scoped since she was a teenager (she's 32 now). Her knowledge on her own condition and treatment options is also extremely lacking (she was diagnosed the same year I was when she was 11). In time she will make her health a priority. Some people just have to learn the hard way unfortunately.