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chocholic
Veteran Member


Date Joined Apr 2006
Total Posts : 634
   Posted 6/22/2010 6:30 AM (GMT -7)   
So i saw my GI two weeks ago. I started on humira almost 3 months ago and it stopped working after 7 weeks. I missed huge chunks of uni and my exams, again. I pretty much stopped eating and dropped a bucket load of weight, got so weak i couldnt stand to shower or even walk. I've tried everything medication wise and am now back on the pred. joyous!
He pretty much sat and told me that i simply needed better coping stratagies and i should muddle through. 'People cope with worse than what you have'. Which i feel isnt the point. So he has agreed to send me for an MRI to check whats going on. If the damage is the same or better he will refuse surgery and leave me like this. I get the feeling that he will refuse to put me forward for surgery unless the damage is significantly worse. Only time will tell.
He has agreed for me to have iron infusions, so thats a bonus i guess.
I think i'm finally, after 5 years, starting to submit to the disease. Maybe i'm just not meant to get my degree. I've just wasted my whole year, i havent passed any of the year. not one single thing. i've decided to suspend the course for awhile. try to regroup for awhile. maybe life will change and my health will improve, on the other hand thats is looking unlikely so maybe the degree will end up down the loo (!!). I guess i'm just really starting to understand that even though i want my degree ect doesnt mean i can have it. despite all the work i have put in and the hundreds of days i've dragged myself in when i probably shouldnt have.

This is a really bitter pill to swallow for me, i;ve kind of had tunnel vision and no matter how bad it got i WAS going to finish. My stamina/determination seems to have finally run out.
Dx - Crohn's - 2006, Depression = 2010
Currently - Humira fornightly, iron tablets, B12 3 monthly, prenatal vits+minerals
Tried - aza, pentasa, questran, infliximab
No crohns' surgeries to date, Episcleritis for 3 weeks,
Allergic to Infliximab
Doing BSc (Hons) degree Equine Science - some support from uni. This year has had to be split in to two.


missnuts
Regular Member


Date Joined Apr 2010
Total Posts : 76
   Posted 6/22/2010 6:50 AM (GMT -7)   
Wow what a great doctor he sounds ! So what if 'people cope with worse that you' he isn't having to cope with it is he. Hopefully the MRI will give a clear picture, mine did, it seems I was worse that the GI thought. Not good for me but it did push treatment along a bit. Try not to be too disheartened about your degree, focus on what you have achieved and start to plan small steps towards your goal. Once you have the right treatment (which I agree can take time to find) you will start to feel that you have more energy to get what you want. In the meantime don't take s**t from the GI, you are the one suffering (and paying his wages), if you are not happy change or at least get second opinion,. Sometimes it helps to take someone with you to appointments they don't intimidate so much if you have back up (have to say my GI is brilliant).
Hope you feel more positive soon.

PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 6/22/2010 7:36 AM (GMT -7)   
I think you need a new GI. My husband's GI always asks him about his quality of life. He says that if he is not able to live a relatively normal life, his job isn't done. Just because someone else is worse off than you, doesn't mean that you need to suffer through things.

Have you tried Cimzia? Perhaps it will work better than Humira. What about adding another immuno-suppresant to the mix along with Humira, like methotrexate or 6-mp or Imuran? Or I hate to say it, a course of steroids (maybe Entocort to keep steroid side effects down) to knock this flare back? I think you should get your MRI and discuss these treatment options with your doctor. It could be that you can avoid surgery by trying one of these routes.

I hope the MRI gives you some answers about the extent of disease, and you can discuss treatment options with your GI. If your GI is unreceptive or unhelpful, I think you should find another GI. It's been my experience that a good GI makes an amazing difference in the quality of life of the patient. I love my husband's GI for treating my husband so that we can have a decent quality of life, and for being available when things go bad to treat things at the offset, to prevent him sliding down.

Hope you feel better soon.

PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Crohn's in Remission since June 2008
C-diff recurrence Sep 2009
Reactive Arthritis Nov 2009
Currently c-diff free
Osteopenia of spine (Mar 2010)
Canasa (1gm), Lialda (4.8 gms), Remicade (8 weeks)
Currently In Remission


Sniper
Veteran Member


Date Joined Feb 2004
Total Posts : 6518
   Posted 6/22/2010 8:24 AM (GMT -7)   
Time for a new doctor. Hope you find one with a little compassion. Hang in there and dont give up on getting your degree. Get better first and then you will reach your goal...
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 6/22/2010 8:35 AM (GMT -7)   
I agree I think its time for a new doctor too. Everyone deals with things in their own way, and don't think he should be comparing you to others. And as mentioned above, maybe if he was experiencing feeling the way you are feeling, he might think different.

I do hope this MRI will provide some answers to help you get the treatment you need. As for school don't rule it out, just take a break until you get feeling better, because I think within time you will find the right treatment. And when you do you can finish school. Big hugs!
Gail*Nanners* Co-Moderator for Crohns Disease 
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Homeboy
Veteran Member


Date Joined Dec 2005
Total Posts : 637
   Posted 6/22/2010 1:27 PM (GMT -7)   
Try not to feel too bad, prednisone is all that really works for me too.
 
I am still on Huimra, but I don't think it's doing much.  I get it for free from Abott, so I keep on doing the shots every week.
It worked a couple of months for me too, then stopped.  I feel cheated.
 
I have a hard, and impossible time with college myself, but that doesn't stop me from trying.
 
Take Care

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 6/22/2010 7:39 PM (GMT -7)   
What?!!!! That is so wrong, in so many different ways.

I'm too rushed to write more now, but please don't feel that you're doing something wrong there. As CrohnieToo sometimes says, there has to be someone at the bottom of every class, and your gastro doctor may well have been at the bottom of theirs. It sounds like yours might have been...
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


ryan_jordan
Regular Member


Date Joined Jan 2009
Total Posts : 45
   Posted 6/22/2010 8:38 PM (GMT -7)   
chocholic: I really encourage you to work on a dietary approach to managing your symptoms. I have had incredible success using a very restricted diet. the restricted diet sucks and has a big impact on my life, but I have been symptom free of crohn's for 10 months and it has been an amazing experience. When I was diagnosed I had been really sick for three years. the doctor diagnosed me as having severe crohn's and prescribed humira and prednisone. after reading about the side effects profile I decided to look for other options and found the SCD. In the end SCD didn't work and I actually eat a much more restricted diet than SCD, but the results are amazing. I have never used anti-inflammatories, steroids, immunosuppressants or biologics and I went from having pain, terrible gas, passing blood and having diarrhea 5-10 times a day to having 1 normal bm a day, normal gas, no pain and no blood. It took a year of experimenting, but the result is a normal feeling of health with some significant lifestyle changes to accommodate the diet. It's totally worth it to be able to be active, enjoy sports, work, etc. I suggest looking at one of several diets (LOFFLEX, SCD, FODMAPS) and then to keep a food/symptom log and figure it out. Many people successfully control their symptoms with diet, despite the fact that most GI doctors won't support the idea. If the drugs aren't working for you then you have everything to gain and nothing to lose.

Post Edited (ryan_jordan) : 6/22/2010 9:41:11 PM (GMT-6)


grumpygi
Regular Member


Date Joined May 2010
Total Posts : 266
   Posted 6/22/2010 8:45 PM (GMT -7)   
M siding with Ivy on this one and another thought . . .the last person in a graduating class of physicians is still called . . . ." doctor".
newby


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 6/23/2010 1:26 AM (GMT -7)   
As far as coping goes, I think that doctors often fail to take into account:

a. the fact that everybody is different, and that age, income, life history, level of psychosocial support etc can all play a role in how well someone "copes" with an illness
b. "coping" is a rather judgemental term anyway. Who's to say that his definition of coping is the same as yours?
c. sometimes a patient gets TIRED and WORN OUT. What someone can cope with in the first three months of their illness can be dramatically different to what they can cope with after three years, especially if they've had uninterrupted pain and uninterrupted symptoms the whole time.
d. sometimes pain and malnutrition can cause depression, and this can lower our ability to "cope"
e. the fatigue that comes with Crohn's - even when in remission - is not sufficiently recognised by doctors, but can have a devastating impact on some patients' quality of life.

Does the fact that you are having a hard time just now mean that it is necessary or appropriate to criticise you for not "coping"? Wouldn't it be better to talk with you, in more detail, to determine what you're struggling with and put strategies in place to help you?

Maybe we can help you here. How about you tell us, in more detail, what is making uni and life so hard for you just now? We have a lot of great people. Maybe, between us all, we might be able to help you find some way (or resource) that will make things easier for you.

Keep hanging in there. You didn't need to be spoken to like this. I think it was very wrong of him. Rest assured that we think the world of you.

Ivy.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


chocholic
Veteran Member


Date Joined Apr 2006
Total Posts : 634
   Posted 6/23/2010 1:28 AM (GMT -7)   
hey guys, thanks for all your replies. I'm feeling abit more positive about everything today. I'll finish my degree eventually it just might be in a couple of years and it might be part time or even long distance. There are ways and means of doing it, and i shall. I havent spent the last 6 years of my life on this degree only to give up now when i have 140 module credits left to get.

I live on a low residue diet and it seems to work normally. In my 'normal' times, i might go 3/4 times a day, with some urgency but not liquid. just loose. No vomiting and barely any pain (not that i take pain killers anyway!). Even now on the pred just starting my third week and although my BM's has dropped from 8+ to 1, i'm getting pain. I have been so good, i have eaten a fresh salad. Not a big one, but still!! raw food! and i didnt die!!!

I think i will stick with my GI at least till i get my MRI done. Then see what he has to say. Its tricky though as i'm in the UK and have always been with him. Plus he is clinical lead at my favourite hospital! so if i switched, i'd still see him plus have most of the same medical team.

Still, i've just gotten my letter through about my iron infusion, which is booked for tuesday. Never had an iron infusion before, but if it helps the tiredness then i'm all for it!! I'm pretty tired of being tired!
Dx - Crohn's - 2006, Depression = 2010
Currently - Humira fornightly, iron tablets, B12 3 monthly, prenatal vits+minerals
Tried - aza, pentasa, questran, infliximab
No crohns' surgeries to date, Episcleritis for 3 weeks,
Allergic to Infliximab
Doing BSc (Hons) degree Equine Science - some support from uni. This year has had to be split in to two.

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