Needing some support after a hellacious 3 years

It's been awhile since I've been on here. A few times I've started to post but just got too overwhelmed with facing everything. I'm going to try to do a sum up of the last few years.

I was steroid dependent for a year and had a pesky stricture that the surgeons were willing to take out. My first bowel resection was in 2010. The plan was for laparoscopic surgery but when they got in there it was a hot mess.

My bowel had perforated, abscessed, and adhered to my back muscles and uriter. I woke up with a 6 inch midline incision and was rehospitalized several times for abscesses. I had finished my bachelors degree a week early for the surgery and was to start an advanced standing, intensive, 1 year masters program 2 weeks later. I was almost kicked out of the program because of my frequent hospital stays.

I developed a fistula where my jp drain had been and was pretty well blown off since (of course) it never drained while I was at the doctor. So while I was in graduate school, I was pooping out of my stomach with nothing but gauze to cover it. I had my fistula repair immediately after completing my masters degree and had my midline reopened. I then immediately started working at, arguably, one of the most intense jobs a social worker can have.

I was also started on humira after my bowel resection as "maintenance" care, which now I can see was ridiculous. I'd been on Cimzia and remicade before because of another fistula that's never closed.

I was wiped out all of the time but attributed it to pushing myself so hard over the past few years. I developed a lump on my neck that kept getting larger and lower abdominal pain that I feared was my Crohn's coming back. After a year of blow offs from my ENT surgeon at the VA, it was removed and found to be diffuse large B cell lymphoma. I started chemotherapy shortly after.

I had nearly every complication one can have from chemo. I got a blood transfusion, developed bilateral pulmonary emboli, had severe neuropathy, and also gained 80 pounds from the 150 mg of prednisone I was taking for the 5 days I was hospitalized every 3 weeks for chemo.

Near the end of chemo I caught my boyfriend of 3 years cheating on me with his ex-wife/mother of his children in my house (that I paid for) in the bed I bought for his children. He told me that he wasn't attracted to me anymore, said "it's not like we're married and I have to be there for the hard stuff", and lots of other hurtful things.

I don't live near family and while I know they would do anything for me, we all tend to be the independent stoic type. Their constant and well meaning "you're so strong, you'll kick butt no problem!" made me feel like I couldn't confide that I was horribly depressed, in tons of pain, and wanted to die every single day.

I made jokes and made it seem easy and so essentially isolated myself. My ex and his kids had been the only thing keeping me alive. I was also battling the VA on a constant basis to get my disability rating increased since I wasn't able to work. The "fast track" I was on took a year to get approved.

It's been a little over a year since my last treatment. Everything is looking good physically (well except the head to toe cavernous stretch marks that ruined my body). It's still been a battle physically and emotionally trying to heal from the effects of chemo, process everything that happened, and re establish some sort of identity. The fatigue still kicks my butt and I still have pretty severe memory issues (actually one of the most devastating effects) but I can tell I'm getting better.

But I still get hit with tidal waves of depression every once in awhile, have nightmares about my hair falling out or having more surgeries, get terrified every time I have a lymph node swell or have some abdominal pain, and have recently started getting flooded and have irrational and intense reactions to situations with family and friends.

When do I stop being so scared of my body? Will I get my memory/cognitive functioning back? What is my relapse rate if the lymphoma was caused by a TNF blocker? Everyone keeps asking if I've started working again yet. Everyone seems to expect me to be good as new. I lost some of my bounce back-ability this time. I've been to a darker place than I knew existed and don't think I can even work directly with clients again because of that.

I started therapy but have stopped going because she really doesn't understand any of this and admitted that she can't really help me. She just suggested I go to support groups. I'm not in a place to do that right now.

I'm just not ok. I don't think I should be ok. The reality of the last 3-4 years has hit me all at once. I get overwhelmed and my brain shuts down pretty quickly. I would love any encouragement or advice from anyone who has gone through some of this.

We had another member develop lymphoma while on Remicade, maybe Humira. - one of those two. I'm sorry this happened to you. Also, the prior mess would have been enough and to add that on top - oh boy!

Can you find a therapist that deals with patients that have chronic illness? I do think you need someone to talk all of this out. It's a big load to shoulder without learning how to unload a piece at a time. Asking for help is hard. I know I had to after my husband died.

I don't have any advice really, but I think you've gotten through an unbelievably difficult time. I hope you acknowledge to yourself how much you have been through, and how strong you are.

I second the advice to find a counselor that has experience dealing with chronic illness. I found therapy to be so helpful when I was going through my divorce, and we did work on how I dealt with my CD too.

I also second the advice to find small things to do to pamper and nurture yourself. I love guided meditation, and yoga. A hot bath or a lovely meal can be nice too.

Take care, and sending you positive thoughts.

First of all, you need to give yourself some credit.  You have overcome what would be some insurmountable obstacles for some people.  Second, you need to break down all the difficulties you are dealing with and prioritize them. There are too many things working at once for you to be able to do justice to all of them at once.  You need to prioritize  and either take on the simpler,  faster to solve problems first, or tackle the one that's causing you the most distress.  Once you find you have dealt with the one issue, you can take on another.  Otherwise, all you are doing is overwhelming yourself.  A support group dealing with chronic illness would also be a  good idea.  We all need to connect  to someone or something.  You have actually proven yourself to be strong;  good luck finding a support group and don't forget here is a good place to get some feedback.  All of us have the chronic illness that  has  affected our self esteem, our relationships, and our outlook on life. 

I agree - this is more than anyone should have to deal with in a lifetime, let alone 3 years. Kudos to you for not giving up. Keep staying as strong as you can. There has to be a light at the end of the tunnel here. Just seems your tunnel is a bit longer to get through.

And as far as that guy goes, he did you a favor showing his true colors. You don't need people to bring you down and stress you out like that. This disease is stressful enough than to have crap like that in your life. He didn't deserve you!

You are one strong individual! You have my utmost respect.

Hello MissChris
You are definitely a stronger person than I am to deal with all those tribulations and still be sane afterwards. You sound like a very smart person.

The scriptures at 1 Peter 5:7 says:
" Humble yourselves, therefore, under the mighty hand of God, so that he may exalt you in due time, while you throw all your anxiety* on him,+ because he cares for you.

Psalms 55:22-"Throw your burden on Jehovah, And he will sustain you. Never will he allow the righteous one to fall"

It is very possible that He must be sustaining you already but you have to acknowledge that by Praying to Him.



Also do you ever watch what you eat or drink ?
Have you tried drinking "Whole Leaf Aloe Vera Juice" ? It has helped me greatly to minimize the symptoms of Crohn's, along with Diet , Enteric coated(time release) probiotics and Enteric coated Fish oil.