Please advise- afraid I am losing it!

[tots]

I am on Remicade for the second time.

Failed Humira and Cimzia.

Out of remission for 5 years.

When we decided to give this a try I had a conversation with my Dr that I need to feel better, I cant get part way there and not get over the hump to remission. We agreed that if it didn't help soon we would add Imuron. So I started in June, STILL having trouble. My Vit D is down again. dropping for the last 6 months.

If I understand my Dr, Imuron helps prevent you from developing antibodies to Remicade. This is the last drug they have to try, what the h*^% then? I understand Remicade works better when piggy backed by this medication. SO I ask WHY am I waiting ANOTHER 6 months. Because I can tell you, I don't have 6 month left to give him or this disease. I am overwhelmed- I can't cope with trying to keep up with my job and condo.

My husband is pissy I don't get enough done in the house, I almost flipped my **&^ when I walked in tonight after a long day on my feet and my husband asked me to make a batch of cookies at 7pm. I almost lost it, instead I walked away and stayed away for a while!


Any advice re work and felling like crud or how you handle either of those meds please let me know

Lauren

Sry for the spelling mistakes- really tired!!


Lauren

 

[Spooky1]

Hi, Lauren, how brave to walk away. No use hubby getting stressed about you not doing enough. Perhaps he should de-stress by doing a bit more housework for you. None of us would be ill given the chance, but something like Crohn's and all its extra intestinal manifestations is nothing easily coped with. I really feel for you.

I know how you feel about disastrous Crohn's. Mine is way out of control and I was taken by ambulance emergency to hospital for an intestinal obstruction. Wow, things are really back to the worlds worst D, but I got a dental abscess recurring and I'm about to start metronidazole for that so it should help the crohns too, I think.

How do you even cope with family and work??? Admittedly I chose not to have children as I just wasn't well enough. I think I'm pleased I didn't although I'm having xmas all by myself this year.

Have you been on liquid feeds only at all? And do you take D3 with K2. I'm on mega doses and swear my mind improves with less depression.

Other than that I don't know what to suggest.
Best wishes, Lauren,
Hope xmas day improves for you
thinking of you.

Diane

 

[tots]

Thank you Diane- I had my first two kids before my DX. I had CD trouble while I was pregnant they just didn't know it at the time. I am glad I had them before I officially knew.

K2?


Work and family? Right now its all I can do to to barely take care of work and myself!

I just am very frustrated with my Dr. and not just getting down to really treating me!!


Thank you for your kind words Diane. Merry Christmas to you!


Lauren

 

[Spooky1]

You poor thing, at least we know how life is for you, but sometimes I am unsure of the Gastro docs actual understanding of how life I for us. I also despair as I have failed so many medications too. I moved house a few months ago and am so hoping I get a better specialist, my last were disastrous.

K2 is another vitamin and D3 needs it to work with.

hope the new year brings better for you and me.

Diane

 

[Bec215]

I'm a 32 year CD sufferer, two resections, currently struggling with pseudo-obstructions that appear to be endometriosis and/or adhesion related (but no one can really determine the cause).

If what you're suffering with is cramping pain, not related to adhesions, but active crohns, one option to help get through the pain is a medication i found in Europe, which is OTC all over the world, but isn't sold in the US for reasons i can't understand.

Google Buscopan.

It's made by a German pharma company, Boehringer-Ingram, i think, and is a 10 mg tiny tablet. It's sold as cramp relief both for menstrual pain and IBS. It doesn't make you drowsy, it's non-narcotic, and has no side effects that i could ever determine. It also doesn't have any interactions with anything else you would likely be taking for CD.

It is a godsend. It allowed me to function and work for a year while they sorted out my meds. It's been on the market for around 50 years, and when i travel i stock up... I've bought it in Germany, England, Ireland, Brazil, Costa Rica, Thailand, Australia... It's infuriating i can't get it here!!!

It's expensive at $.50/pill, but worth it. In the US you can get the active ingredient as a prescription in a lower dose of 3.5 mg. I don't always have good luck with generics, and ur didn't work as well for me but that's something you could try quickly. The active ingredient is hyocine butyl bromide.

Fyi, Lomotil and other anti-spasmodics do nothing for me. This always works, as long as it's not obstructing-caused pain. When i was hospitalized in Germany on a business trip, they pumped me with a mega-dose, and the pain subsided as fast as with the Dilaudid they give me in the ER. I hope it helps you!

Re: husband.... Someone without IBS can't always understand that you expend all your energy to get through work, but you're not ok, or normal, even if you've managed to fake your way through the day. It can be confusing...i wish CD episodes made you get pink spots on your skin, so people would believe you're really not feeling well!

I suggest you consider to find a local support group, with your husband, so he can hear from other people how their lives are affected.

But honestly, I'd also ask you: have you ever say down with your husband, and really told him all your frustrations and fears admit this disease? Many women try really hard to be strong - but it can make it hard for men to be aware of the real toll it's taking.

I hid my recto-vaginal fistula from my husband for years, fearing it would affect our intimate life. I also couldn't admit to him sometimes i didn't want to have s3x because i was afraid I'd have diarrhea during.

I finally cried my eyes out one day, telling him how tired i was not feeling well and hiding it, how i was scared every time i put food in my mouth it would hurt, and i was scared that I'd lose control of my bowls in public, and about the fistula... He was shocked how much it was messing with my head and my life.

Don't assume that you've explained the real effects it's having on you, even if you think you have. Sometimes we try to insulate our loved ones, and it doesn't help them help us.

Good luck for a better new year!

 

[Bec215]

Thank you Diane- I had my first two kids before my DX. I had CD trouble while I was pregnant they just didn't know it at the time. I am glad I had them before I officially knew.

K2?


Work and family? Right now its all I can do to to barely take care of work and myself!

I just am very frustrated with my Dr. and not just getting down to really treating me!!


Thank you for your kind words Diane. Merry Christmas to you!


Lauren

P.s. Please also look for a good acupuncturist in your area, preferably one with MD training as well. When nothing else helped, and my only option was narcotics, i found massive, almost immediate relief with acupuncture. Hao Yao, in Northern Virginia, is my TCN doctor, and he's amazing. He actually authored papers on treatment of crohns when he was still in China. The first day i went to him, when he put all the "needles" in, my stomach started gurgling and growling, the bloating subsided, and i feel asleep on the table for am hour! Over the next month, he gave me my mobility and life back. It's not a cure, but it's a sanity-saver!