Wanting to Give Up

I took my 3rd dose of Humira on Tuesday. It seemed to slowly be helping from dose #1, and then all of a sudden everything got worse. Not even prednisone is working now, though it is making me so anxious and depressed I can't stand myself despite the daily doses ativaan and klonopin. I got a booster shot of steroids yesterday, and that didn't help either. I don't get it. I'm in so much pain.

I've had UC for 7 years now with flares on and off as I became intolerant of medications, and I've been horribly sick for the last 9 months with Ulcerative Colitis and Severe Proctitis with rectal prolapse, since my first child was born. Nothing works anymore. I'm so tired. I don't know what else to do. Doctors want to send me on to Rochester. I've already been there twice. We don't have the money, and I just can't do it anymore. All I want to be a good mom to my little girl and a wife to my husband. I know I can't have my career or run anymore or be on disaster relief teams anymore or travel, I know I'm disabled and I can deal with that loss, but can't I at least be a mom and a wife??? I am so tired of pain and embarrassment and the constant interruptions day and night. I haven't slept more than 5hrs in a row in nearly a year. How much is one person expected to take??

Can someone out there give me hope? Share a story of triumph? Prayers are good, too. I know I have to keep fighting for my family's sake, but it is so hard. I hate to be so self-centered, but I really really want to give up. Thanks for letting me vent.

--Meg

Failed Treatments: Remicade, Lialda, every enema ever, Canasa, hydrocortisone suppositories, Imuran, Colazal, Asacol, Prednisone
Failed Diets: Low Fiber, High Fiber, Gluten Free, Dairy Free

Post Edited (Call Me Meg) : 7/12/2014 5:39:21 AM (GMT-6)

Or there's the option of surgery. After 2.5 years of zero quality of life and a failure at all drugs and diets, I made the choice to get rid of my colon. That was 13 years ago and I have never regretted my decision. I live life to the fullest, eat what I want, and never have to know where bathrooms are.

Sue

It also sounds to me that surgery may be your best option at this point. I know how hard it can be and making choices like that are not easy. I don't have too much to add but I wish you all the best in getting better, which ever path that may be.

I don't think 32 is too young for surgery if you aren't responding to meds. Not everyone responds to medication. I know how hard it is to be a parent and be sick, it really plays with your sense of self worth, but remember your daughter knows no different and she will love you regardless of how you are feeling.

I know surgery sounds like an easy fix, but my doctors (1 primary care, 2 GIs, and 1 colo-rectal surgeon) have made some pretty convincing arguments that my most recent colonoscopy (Nov 2013) showed signs of Crohns Disease. (Ulcers in the transverse illium, they said). If I get my colon removed and just start getting ulcers in the rest of my intestine anyway, I'll be in a worse place than I was before and just need more and more of my intestines removed or more and more medication. That's why they want to get it under control with meds. Believe me, I wish it was that easy. If a few more years go by and I don't develop Crohn's, it might be a less risky option for me.

Meg, call the social services team at Mayo. Many hospitals like Mayo know of local hotels where those hotels offer rooms at a substantial discount to those receiving treatment. My friend has a son with Neuroblastoma. When they aren't at Ronald McDonald House, they use hotels near Seattle Children's that offer discounted rates for patients and their families. This option is available for adult needs, too. The social services team might also have an idea of other financial programs available to help with food/travel/daycare costs.

Have you called your insurance company (or the employer..if there is one...the policy is connect to) to find out what they have in the way of financial assistance for your needs? In the long run, curing you with surgery or getting you into remission with a better drug, might be more affordable for them in the long run.

I try to have an open dialogue with as many of those involved with my treatment as possible. I found out having home infusion for my next drug try is more affordable for the insurance company than going to an infusion center. I'd of guessed the opposite and picked the more expensive (and less desirable) option in the hopes of being as considerate to my provider as possible. That was a good lesson for me to ask, ask, ask.

You do get tired by their try remicade or cyclosporine talk to doc about these

garylouisville said...
Well that's right. You have to be 100% certain it's UC for surgery.

so, let's say she doesn't UC but Crohns, what's the plan then?

Well I had Crohn's and had surgery for it in Feb 2013. My disease affected my entire colon and my terminal ileum. I have to have a permanent ileostomy - can't have a j-pouch - but otherwise I'm okay. Apart from mentally, but we won't go down that path <_<. I failed all the usual drugs (Remicade, Humira, methotrexate etc.) and it got to a point where I couldn't function without steroids; I mean literally couldn't function. Steroids worked for me, but I was getting increasingly dependent on them and, towards the end, could not get off them at all. Steroids only buy you time if nothing else works. I'd have unquestionably had to have surgery earlier than I did if it had not been for steroids. However, I don't think there was any advantage to waiting another 2 years or so for surgery.

If I was in your shoes, I'd push for Vedolizumab or cyclosporine (preferably the former because it's less toxic). Humira is a waste of time if you've already tried Remicade and it didn't work. If you have suspected Crohn's, I'd also ask about Tysabri, yet another biologic. Try to get onto another med ASAP, since the Humira is clearly failing; it's not going to kick in and work wonders now.

I hope you can find something to stave off surgery. Do you still have pancolitis? If not, you may be able to get away with a colon resection and not need an ostomy. But if you do end up having to have a total colectomy, then you should feel a lot better afterwards. This is a very debilitating disease when it's severe and never goes into remission. Yeah, there is a risk of Crohn's returning in the small bowel; I've trawled medical papers and as many forum posts on this as I could find, and, tbh, it seems largely down to pot luck. If you have to have a colectomy, then an end ileostomy gives you the lowest odds of recurrence; the chances are considerably higher if you have a j-pouch or ileorectal anastomosis (tho' in your cause I think I can safely say severe proctitis would rule out an ileo-rectal connection).

If the remaining meds fail, then I'd seriously consider surgery. There are medical options beyond the biologics, but then you are getting into increasingly experimental and obscure territory; not sure it sounds like you have the energy for that.

NiceCupOfTea said said...
"Humira is a waste of time if you've already tried Remicade and it didn't work. Try to get onto another med ASAP, since the Humira is clearly failing; it's not going to kick in and work wonders now."

Thanks, NiceCupOfTea, I know you mean well, and I'm sorry the switch didn't work for you, but that's the LAST thing I need to hear right now unless you are a doctor. According to my research, most GI doctors advise Humira as the logical next step after failing Remicade because if it does work (and it works for many, that is if you give it the full recommended 3 months to work) it's an easy way to control the disease. I did very well on Remicade before I had my child. It makes sense to give this easy medication that my insurance covers at 100% a good, honest try and not quit in the middle, and pray that it does work for me because I don't have the energy or the heart to start over again.

I don't know how many people read my first post before replying, but I didn't ask for medical advice. I know you're trying to help, but I don't need more assignments. I have lots of doctors for that. UC and Crohn's are so individualized, if something worked for you--or didn't--odds are won't be the same outcome for me.

I just asked for kindness, compassion, and understanding: a sharing of the dark places this disease brings us to and the light that comes after. Thank you for those who read my post and responded with kind thoughts and prayers and hope, but in all honesty I feel worse than before I posted here.

/www.youtube.com/watch?v=hqgC1tqifV8#t=12

“She stood in the storm, and when the wind did not blow her way, she adjusted her sails.”

NiceCupOfTea said...
Not changing my mind what I said about Humira, but if you wanna stay on it for another year, then good luck with it.

It takes 3 months to know for sure whether Humira will work or not, not a year, and I have only been on it for a month and a half, that's half the doses, as my signature and first post states. If you don't know even the basics of the medication, please refrain from giving advice about it. You might do someone real harm if they don't know enough not to listen to you because you are not a doctor. It is clear that you know less than you think you do, sir or madam.

Yes, some doctors are lazy, and so are some people who troll forums and don't do the basic research on meds they want to advise on as though they did have a medical degree. All you can say for sure is what it did for you, not what it can do for me or anyone else. After 7 years of going to doctors and a lot longer than that being on the internet, I am happy to report I can weed both out.

Thank you for not replying again. Please be more supportive and knowledgeable and less negative with misleading information in your future replies to others. It's more important that the truth be spoken than it is that you consider yourself to be right.

Samantha said...
“She stood in the storm, and when the wind did not blow her way, she adjusted her sails.”

That is beautiful! I LOVE THAT. Where is it from? I'm putting it on a post-it and it's going on my bathroom mirror. Thank you so much.

Good to know.

So true! How do we know what we have the flu, food poisoning, stomach ulcers...the list goes on. I'm looking forward to remission some day when I stop assuming everything I feel is UC. I can't even remember what normal feels like. How much did I feel my colon before? What was regular indigestion like? I'm assuming part of the problem is having the disease long before we realize it and getting use to symptoms as they progress. What I thought was normal for years may not have been normal at all. But, like you said, how can we know?

My regular doctor doesn't want anything to do with me right now. He always tells me to call my gastro because he's not sure what's a result of my drugs and how to deal with things. I'm sure if I get on this Entyvio it will be worse in that regard because he won't even have heard of the drug before. Fun times.