Diagnosis: Crohn's (thought it was UC) - not taking it well at all.

[pacealot]

Hi, my name is Paul. I've posted a couple times in the "Humira Club" thread, but this is my first "real" introduction to the Crohn's community.

Well, in anticipation of having a total colectomy to "cure" what I and my doctors thought was UC, the doctors (GI and surgeon) had me redo the Prometheus blood tests, and the unexpected result was that, this time (as opposed to the previous results which were all "inconclusive"), the results pointed squarely at Crohn's.

I was not expecting this. I have "presented" as classic UC all along - except for one clue, which was my second hospitalisation for a perforated diverticular abscess. At the time, the prevailing medical opinion was that it was caused by the diverticulitis, combined with the weakening of the tissue presumably due to the Prednisone I was on at the time to stop the flare that landed me in hospital the first time a month prior. But now, it seems that that really was the big clue that I had Crohn's and not UC all along.

I'm extremely depressed now. I know that so many of you continue to fight the good fight against this disease, but I feel that this new diagnosis has stripped away the last vestiges of my hope and energy (ha! what energy? that's a laugh! :mad2 towards "getting better." I am hovering somewhere around halfway between "remission" and "non-remission" on weekly Humira and 100mg mercaptopurine daily, and I feel like living death every day - I can barely get out of bed. Now I know that I can never be free of these immunosuppressants and/or biologics, and that surgery can't help me, but can only cause more complications and problems, both foreseeable and otherwise. I know that there was always the possibility that my presumed UC could likely switch gears and change into another autoimmune condition after its favourite target, the colon, was removed, but that's a moot point now.

I don't feel that I have the right to complain - especially here - but I do feel like I've lost the last hope I had of ever feeling better, and I only see it as a short trip now from here to the grave. The Humira won't "work" (assuming it is "working" - I suppose it is keeping me out of a worse flare) for very long - it never does for anyone, it seems; and I can't afford it anyway, nor Remicade or any of the other "options." So I see this as the beginning of the end for me. And I have no will left to fight it. So Death, come quickly and mercifully, please.

I'm sorry to be a downer. I'm just terrified and extremely depressed. I've never been a positive person - in fact, I'm the single most negative person I've ever known - so I know I'm not equipped to go through this. I have a wonderful wife and a beautiful 11-year-old daughter to try to live for, but I can only see myself dragging them both down and ruining their lives as well.

I guess I just needed to write this for people who would possibly understand somewhat. I hope that my loss of hope will not compromise anyone else's in their journey to live through and beyond this disease. I just know that I personally am not strong enough to withstand it.

 

[SalliDelaine]

Pacealot,

I think this could be a great place to get the support that I think everyone needs when facing something like this. I can imagine that you mind is all over the place, but there is a light at the end of the tunnel. Hopefully they can get your meds straightened out and it will become more bearable. Hang in there and I wish you the best.

 

[Honey]

Hi there, PACEALOT,
We are all individuals in our response to treatment but once the correct meds are found, it does get easier. I spent three years trying different meds until I went on Remicade infusions. I even had spoken to the Surgeon and like you, was scared stiff! Yes, I too cried because I really needed to vent my feelings whilst everyone was telling me how well I looked. So I did, but I was up half the night in the loo! Do not plan ahead and think what might happen, just deal with today. It is enough to deal with when you are sick. It is difficult for people to understand because they are not in your shoes.
This forum is great for sharing your feelings, what I call ' The FEARS AND TEARS ' of living with a difficult illness!!!
I was on Remicade last year, then reacted to it and had to come off. I am currently doing very well, on a low doze of steroids for another problem.
So you see, it unexpectedly turned around for me and I am well!!!
So it is not a foregone conclusion that you will be on high powered meds for life!!! You are in my thoughts and prayers.
:getwell:

 

[Tuff]

I'm sorry you're having such a hard time. Please talk to a doctor about your depression. You've just been diagnosed with an incurable illness, it's going to take time to adjust to it. It does get better. Four years ago, after five months in hospital, I couldn't take it anymore, and tried to slit my wrists. Thankfully I couldn't find anything sharp enough to do a good job. I think we need way more support than what we're getting, in coping with this illness. I've now been in remission for over a year, and got my life back. Talk to someone, let them know how you're feeling.
:ghug:

 

[ncman]

I think we can all relate to hitting that wall with this disease, feeling as if there is no future.

But as this is Crohn's, it should respond to diet i.e. by changing your diet, you can reduce your inflammation. It's explained in more detail here: http://www.crohns.org.uk/crohns_disease/nutritional_therapy/the-dietary-treatment-of-crohns-disease. It's another option to try if your current setup isn't giving you results.

Sending support your way :hug:.

 

[pacealot]

Thanks to all for your replies. Tuff, I do have psychiatric care in place as well (have struggled with depression & severe anxiety for a lot longer than Crohn's, and that's a long time, as I most likely had my disease for many years without medical benefits and misunderstood what the flares were - I'd been diagnosed with a bleeding internal haemorrhoid in my early 20's and I assumed that's what it was). I have a therapist whom I trust implicitly, and a network of Kaiser psychiatrists (not so much trust in them, unfortunately - they keep misdiagnosing me and putting me on meds that make everything worse, psychologically that is). I recognise that I have a very good network of support around me; it's just that I don't believe that I am capable of doing the work and fighting the fight to get "better" any more, since I see no logical scenario where I can get "better." I obviously (and very foolishly) put way too much hope into the possibility of the colectomy and J-pouch, and now I know that the latter is certainly never going to happen, and, regardless of how much or little of my colon they end up removing at this point, it won't stop anything, but will just begin my path towards the endless surgeries that so many "Crohnies" end up having to endure. I just don't have the heart to fight any more. I'm sorry. :redface:

 

[Honey]

Hi there
keep up the spirits, there will be better times ahead. Let me know how you are doing.:thumright:

 

[Crohns08]

Hi pacealot!
I know you're going through a hard time; God knows I had a hard time with this when I was diagnosed shortly before my 16th Birthday. You can't give up though. I know things seem dark right now and I have knocked on death's door a few times in my almost seven years of diagnosis but it DOES get better. A lot of what you are feeling is adjusting to having a disease but some of it could be from the malnourishment that comes with this disease. I highly recommend a vitamin D3 supplement to help you out and to get bloodwork done to see what else you could be deficient in. I won't lie, it's HARD. It's the hardest thing I have ever dealt with in my short life, but I do it for my family, I do it for my husband whom I love dearly, and I do it for the baby I am presently carrying and only intensifies my pain that much more pressing on all my organs which are probably very inflamed if I had a guess. But you can do this, you just have to find what works for you. You won't find it in a day but you WILL get there. We've got your back.

 

[Noonie]

Hi Pacealot- I will only say that I truly understand what you are going through, I have suffered for years myself and have wanted to give up many, many times.Please try and stay strong as you can and know we are here with you..in spirit and in thought and prayers.