Any caretakers WITH IBD out there?

[bobbyearle]

Hi there

I'm not as active as I'd like to be here. I was DX about 4 years ago with UC -- then switched to Crohn's a couple years later -- and lost my career in the process (international photographer).

Eventually I was given remission by cannabis juicing and rick simpson oil -- but I can't treat myself with those in my work abroad, so I'm stuck. My next step in therapy was methotrexate and I wasn't comfortable given my family history, so I was finally talked into using cannabis as treatment (I avoided all intoxicants -- even caffeine -- for 30 years prior).

It gave me immediate relief of symptoms and I went from 10+ bloody stools a day to stool that was starting to take form within a few hours. That was two years ago and I haven't seen my GI since

Within a month or two of my remission, my wife, who had been caring the three years prior for our toddler, was diagnosed with a traumatic brain disease that leaves her bed-ridden, in constant, disabling pain. I thought my life was challenging before, since I had Crohn's, but I had no idea how difficult life would become. Since 12.23.2015, I've been my wife's caretaker, single dad and mom to our poor 4 year old, insurance battler (we're fighting insurance for a neurosurgery out in Texas that might give my wife some life back), 2am masseuse, breadwinner, homemaker, cook, etc… all while trying to keep my own Crohn's in order.

It's been a brutal stretch of time with no real end in sight, but many in the world have it worse. I've decided to take up writing and use my work as a bit of a creative outlet. Every day is incredibly heavy and I think we could use a place to vent -- even if it's to no one haha (if interested -> http://ourinvisiblefamily.blogspot.com).

Anyone else out there with active IBD plus another thing that is so awful that you barely have time to remember that you have your own chronic disease?? Care to share?

Hope everyone's doing as well as health allows!

 

[Cat-a-Tonic]

I had a very brief stint as a caregiver when my husband had painful impacted kidney stones a few years ago. Obviously nothing close to what you're going through, but I did get a brief glimpse of what it's like for a caregiver to experience and it was a difficult experience for sure (I'm not used to being the "well" one so that was just plain odd). It's frustrating to feel like you can't do anything to help when your partner is in severe pain, and I did not enjoy being a caregiver as I felt powerless and frustrated with the situation - what can you do when your partner is vomiting from pain? All I could do was take him to the ER and hope they'd do something, but the ability to directly help was out of my hands. I really feel for what you and other caregivers go through - I only had a taste of it, but it's an extremely difficult thing to deal with. I hope your wife is able to have the surgery and I also hope that it's as successful as possible in getting her somewhere back near normal. Big hugs to you!

I do feel like I need to share this story. The most eye-opening part for me as a caregiver was when my husband finally had surgery to blast out the stones with a laser. He was in a ton of pain after the surgery so he was practically crying, he was still loopy from the anesthesia, plus he had lost some blood so he was quite pale. In general, he looked and acted like a very ill person in the recovery area. The recovery area for the kidney stone people was at that time lumped together with the recovery area for the colonoscopy people - so my GI was actually in the same area and he walked past at one point, saw me, and grew concerned. "Why are you here? You're not on my schedule today! Are you okay?" Then he saw my husband and grew even more concerned (I guess colonoscopy patients typically don't look nearly as awful in recovery as the kidney stone people do, and my GI must have never noticed the kidney stone people before). My GI took one look at my husband and exclaimed, "Oh my goodness, is he okay? He looks horrible! He needs help!" I explained about the kidney stones and that I was a caregiver, not a patient that day, and that the kidney stone nurses were helping my husband and he would be okay. But ever since then, every time I see my GI, he has always asked me how my husband is doing. It definitely made a lasting impression on him. The funny part is, I guess my husband was still affected by the anesthesia when this happened - he doesn't even remember seeing my GI that day. How funny that it's something my GI and I will always remember, but my husband has zero memory of it.

 

[buttER]

I really wish you luck and good (better) health for all of your family. Congratulations on getting your symptoms under control.

Just today I was thinking that I hardly remember anything of the first year of my daughters life. I was literally looking after her day and night (just as any normal parent does with a normal newbown), she did have a few health scares and hospital stays along the way. At the same time I was in an undiagnosed flare and I must have just been in survival mode, getting the things done that had to be done. Now it upsets me that I cannot remember how she was at that time. It's like something changed my brain wiring during that time - in contrast I can remember clearly the first year with my eldest daughter.

So in difficult times: try and create memories. For you and for everyone else close to you.

 

[upsetmom]

:ghug:..I'm so sorry your going through all this.

I'm not diagnosed with anything, well not yet. I take care of my husband who's had brain surgery a few times due to a benign brain tumor, my daughter who has crohn's and my dad who has dementia and doesn't walk. I know how stressful it is to look after someone but you need to make time for yourself. I've neglected my own health for the last few years and recently ended up in hospital with a huge rectal abscess, i'm in the process of getting tested for crohn's. Please take care or yourself as well. I wish you and your family all the best.

 

[Jennifer]

I'm so sorry to hear about what your family is going through. I really do hope she will be able to have the surgery soon. Please keep us posted.

I have been a caregiver since 2010 but I don't think my situation was ever near as bad as what you're going through. Back then my grandpa who I was very close to had a massive stroke. He was not able to walk and his mind wasn't fully there. It has been hard seeing him deteriorate over the years. I used to stay at his house off and on during the first few months but eventually started helping less and less as he transitioned over to a care facility. I helped bathe him, lifted him onto the toilet, wiped him, helped brush his teeth, cooked, fed him and did everything else he needed. My parents also helped a lot so I wasn't alone.

In July of last year my husband had foot surgery and he was diagnosed with Complex Regional Pain Syndrome so he's been in constant pain needing to elevate his foot constantly ever since. Now at home I do everything. All the meals, laundry, taking care of the kitties etc. We don't have children but we're trying which is very difficult now but we're trying to not let this completely control our lives. It's unknown if his condition will ever improve. It's possible but it's also possible that it's permanent. We're still looking for a place to live that has wheelchair access. He was also denied by Social Security for disability so we're extremely struggling financially. I receive SSI for Crohn's already but may have to go back to work so we can make more money.

Being the breadwinner and caretaker for a loved one is extremely difficult with or without an illness of your own but having an illness on top of it can be dangerous because we tend to put off our own needs. When I was still taking care of my grandpa I ignored what my body was telling me. I wound up with three bulging discs in my back, a tear in both hip sockets from lifting and a blockage from a stricture which I was hospitalized for for three days until it cleared on it's own. I also changed medications for a while and tried Pentasa, Humira, Methotrexate and went for Remicade infusions. I had complications from each and went back to 6MP which I have done fine with.

Do your best to make sure that you are healthy as well because you can't do your jobs as breadwinner, parent and caretaker if you're in the hospital. Since my hospital stay I've become more proactive about taking care of myself Before problems arise. The stress alone is enough to make you flare again so stay healthy as best you can. Good luck to you and your family.

We have a support group for caregivers here: http://www.crohnsforum.com/showthread.php?t=51546

 

[UnXmas]

I rely on my parents to care for me. I have an illness due to a unique genetic mutation and have a limited life expectancy. It's progressive, so I'm becoming more and more dependent on my parents. Do any of you who've been caregivers have any advice about how I can make their lives easier?

 

[upsetmom]

:ghug:..Unxmas l'm so sorry to hear this. Just be yourself everyone learns to adapt to each situation.

It's been 7 years since my husband was diagnosed with a brain tumor. He's had 4 operations which have left him dizzy and unsteady on his feet. He can't do anything around the house without falling so everything is left up to me. With all that l also go help mum twice a day with my dad whose bedridden. Life gets hectic but you learn to adapt so don't worry about anything..:hug:

 

[Jennifer]

UnXmas, it's important for you to be healthy both mentally and physically as much as you can be as well. Anything you need or want, please ask for it. One thing that I've had a problem with as a caregiver is the patient worrying about me and waiting on something they need because they feel it's too much work. You're never too much work. If you aren't sure you can do something by yourself 100% then please ask for help. Helping you off the floor and worrying about you if you get injured is a thousand times worse than helping you be safe for a couple minutes. Saying thank you also helps us feel appreciated. My grandparents rarely said thank you. That's all I can think of at the moment.

 

[bobbyearle]

I rely on my parents to care for me. I have an illness due to a unique genetic mutation and have a limited life expectancy. It's progressive, so I'm becoming more and more dependent on my parents. Do any of you who've been caregivers have any advice about how I can make their lives easier?

Ugh… I wish I could hug you… People like you and my wife who suffer but still look out for others… Bless you.