update after first GI appointment

[Deleted]

Just woke up from a 4.5 hour nap because of emotional exhaustion. I feel okay but I'm a little bummed/nervous. 

My doctor said the Chron's dx is official. I had 45 cm of my jejunum removed. There was at least one gross perforation (one page of the report says there were two) and one 2.3 cm abscess in my jejunum. There was fecal matter and air in my abdomen from the perforation. They also think there may be colon involvement. They found fecalization of my small bowel contents.

She was struggling to talk to me about my case - she kept making this weird face and said things were "tricky" - I finally looked her in the eye and asked, "The prognosis is poor, isn't it?" She confirmed. (I was expecting this, as a source online said that the 1-3% of Chron's patients with gross perforations have the poorest prognosis. It still sucked to have that confirmed.)


We're going to treat it aggressively - a combination of Remicade injections and another immunosuppressant in oral form that I will take daily (Imuran?). Per preliminary labs, my expected response to treatment is "intermediate" - she seemed happy with that. Remicade seems to help a lot of people with IBD - I am just worried that I will be one of the unlucky few who find no relief. I know I can't let me brain go there, but it is. Given my age and how involved this one case was already, my doctor is worried about repeat flare ups and what that would mean for me. I just want to keep my intestines and poop in a toilet, not a bag. 

She said my hair falling out is normal - my body has been through a lot. I am also more anemic than ever but she wants to wait at least a month to talk iron IV infusions again. My colonoscopy is scheduled April 4 and we will start the medication after that. 

As those of you on immunosuppressants know, there is an increased risk of getting sick because your immune system is suppressed (lol). This concerns me because I chose (and love!) a career where my option is to work in a school with tons of sick kids or a hospital with tons of sick people. The doctor said you don't live your life any differently though - just monitor yourself and if you're not getting better to seek medical attention so you can get tested for some of the more harmful bugs. Increased risk of heart/liver failure, lymphoma, skin cancer, and MS make me nervous but it seems better than the alternative. 

I want to be excited because I wanted Remicade. I know it's changed the lives of so many people. But I'm not excited yet. I just want to be normal again. The day before surgery SO and I tried on rings and put down a deposit to hold a diamond. I went out with friends for beer and wings. We were planning a trip to an AI for December. My biggest concern in life was my next Aphasia exam. It's a little crazy to think how drastically things have changed in such a short time. And it's a little sad. I'll be okay and I won't be this blue forever (refuse to waste my life feeling sorry for myself!) but I'm definitely a little blue today.

My biggest concern is what this means for my partner. He didn't sign up for this. I feel sorry for him. Things are okay now, but what if they get worse? He's too young to have to take care of a sick girlfriend all the time. I want to get better for me, but I also want to get better for him.

Sorry for vomiting my feelings onto a message board, but I figure you guys understand more than people in real life, and it feels safer to share it here. I don't want my loved ones to feel burdened with this any more than they already do. 

rikki I am tagging you because I know we've briefly talked about Remicade before and yay - I got it! 

[rikki]

Hugs! I am thinking of you and sending lots of good thoughts your way. I remember being exactly where you are, scared and confused. I am so sorry that you're going through this. Grateful that you'll start Remicade and I hope that it brings you some relief.

Which doctor are you seeing? Do you like her other than her making weird faces? PM me.

If you want to talk, call me. I'm here for you! xxoo

[Deleted]

I PMed you Rikki. Thank you.

[audry80]

A big ole hug to you. I saw this post linked from your post on MM and wanted to respond.





I am very immunocompromized and on 3 immunosuppressants and just accepted a job working in a hospital. Yes, our risk of infection is higher but my Doctors have assured me that I cannot live my life in fear of getting sick. They tell me I will get get sick but they are there to make me better. I practice OCD hand washing and haven't been sick once in the last year.


I know this is a huge new life changing event but I have faith you will overcome this. To spoil yourself with a spa day... You so deserve it!

[hannamaren]

I am a pharmacist and used to take Remicade (now I am on Humira - same difference) and I take immunosuppressants for my transplant.
I am surrounded by sick people. I am not even that diligent about hand washing. This winter has been particularly bad (I took one sick day) but over the last 8-9yrs, I have been fine. Usually healthier than my "healthy" husband.

I do find I have to be more diligent about getting enough rest, but I have always been like that. I think I just like to sleep.

[hannamaren]

Oh, and .I am definitely more prone to cold sores. Ugh.

[hannamaren]

Sorry, one more thing.

I work in a Remicade pharmacy. I have seen miraculous results. Truly. With both IBD and Arthritis.

[Deleted]

you guys are great - thank you.

[aimeedyan]

I took Remicade for 2.5 years - immediately after my diagnosis. It was, truly, a miracle drug for me during that time. At the time I started it, I had not eaten solid food in 3 months, had dropped 70 pounds, didn't have the energy to walk across the room, barely left the house, and the constant pain was almost unbearable.

Within 48 hours, it was all gone. Literally. I responded that well to it. And I was 100% symptom free for 2.5 years! I was a walking billboard for the stuff. My iron went back to normal, my hemaglobin went back to normal, I regained color in my skin, I ate normal foods, I gained the 70 pounds and then some LOL, never had bathroom issues, etc.

Course, I hadn't had a resection yet which you have already so you probably will have some lingering issues just due to that. My digestive system changed greatly after my resection so I have a new normal.

I work as a minister so I'm in and out of hospitals and nursing homes, shaking hands with random people, helping homeless, and working with lots of children and have the entire time I've had Crohns. My immune system may be shot technically but I've never had issues with it. My GI was the same as yours, you can't live in a bubble. You wash your hands (like we all should anyways), you use common sense, and you'll be fine. Just be smart about it.

It's the norm to take Imuran with Remicade; it helps prevent you building antibodies to the Remicade and helps it work better. I never had side effects from either, really.

When I was first diagnosed, I went through a sorta depression/denial/anger thing - I grieved the loss of my health. I had been married less than 2 years, so I was angry on his behalf. But reality is that at least for the first 12 years of this damn disease, our lives haven't changed that much. We still do all the things we enjoyed doing, at times I just may be a bit more tired, or have issues eating, or excuse myself to spend time with my new BFF the toilet, but I'm not homebound, or unable to care for myself, or anything like that. People don't know I have Crohns unless I tell them.

I hope you felt comfortable with your GI! Having a good relationship with your GI is a huge part of living with this disease. When we recently moved across the country, I think I was more sad to leave my GI than my family. Kidding. Sorta.

[aimeedyan]

Mar 5, 2013 21:47:23 GMT -5 Catlawdy said:

Mar 5, 2013 21:40:41 GMT -5 aimeedyan said:

, I think I was more sad to leave my GI than my family. Kidding. Sorta.

I totally cried when my surgeon retired. Got the letter and cried.

I had a last visit with him right before we moved and I ugly cried in the office saying goodbye. Not one of my finest moments... Glad I'm not the only one to get attached to a doctor

[Deleted]

aimeedyan thanks so much for sharing your story! I totally get feeling angry on your husband's behalf. It's nice to know I'm not alone there (even if it's a boyfriend instead).

It is great to hear that even though the Remicade stopped working you still feel like you live a normal life. I have so much hope in this drug that I'm afraid of what will happen if it doesn't work. That helps a lot.

[Deleted]

Ugh, I'm sorry to hear this. I don't know much about it but I hope the treatment goes well.

Regarding your s/o, think about if it were the other way around. Would you kick him to the curb if he became ill? I doubt it. Remember, you didn't sign up for this either. No one would. Let him be there for you. He seems like a good guy from what I've seen you post.

[Deleted]

((( tacom )))
I am so sorry that you're dealing with this. I know how you feel regarding your BF. I have been sick since before H and I met so he knew what he was getting into, but I go through phases (usually when I have a flair up) where I feel really guilty and feel awful that he got stuck marrying me. Honestly, what helps me the most is telling him how I'm feeling, because that gives him the opportunity to reassure me that he loves me no matter what, and he doesn't feel stuck or have any regrets because of my illness.

[sassystace]

So sorry you are in this dark place right now. Your post reminds me of the time when I was first diagnosed w/Crohn's and felt like I'd never be "normal" again. It makes me almost cry just thinking about it too. I know it doesn't feel like it now but things will get better, really! It sounds like you are in good hands and have a plan that should get your feeling better soon. Hang in there and *try* to think positive.

[bcv513]

tacom, I know exactly how you feel. I got angry and depressed when I was first diagnosed, and again when I had to start on the steroids. And this has all been since December. I'm angry that I took my health and eating for granted, I'm angry over how much my life has changed, I'm anxious over what the future will bring. I'm also angry on behalf of my FI and the changes this has brought to his life. In a particularly low moment, I told him he could still get out and find someone healthy to marry. Luckily, he ignored me.

I so hope that this treatment will work for you. I've been thinking about you (in a non-creepy way).

[Deleted]

I just want you all to know I read and appreciate every word.