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Crohn's Disease Forum » Support Forum » Vent Away » Bad day, bad week, bad year


11-22-2016, 12:53 PM   #1
Susabelle
 
Join Date: Dec 2015
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Bad day, bad week, bad year

I usually try, and succeed, in remaining positive throughout this horrible journey but today, well today I can't. When I finally thought I had this crohns colitis under control, it proves what a volatile bitch this disease is by flaring again.

I had a suspicion things weren't right, so had a calprotectin test and low-and-behold the inflammation is back. At least it explains the pain, cramps and frequent visits to the bathroom recently, so while I know I'm not crazy, it's not much comfort.

When first diagnosed I wanted to try a natural method of getting better, but ending up in hospital and a severe telling off from my doc cured me of that. But fickle fate intervened and turns out I'm allergic to mesalazine, so Pentasa and Octasa made me worse. Azathioprine gave me migraines and steroids are the only drug I can handle so far, but can't be on long term. They also didnt do much to bring my inflammation down.

So I tried EEN with ensure plus and in two months I'm in remission, feeling great for the first time since my hospital stay, introduced food again (carefully!) and felt positive about being able to work full time again then BOOM ...

"Hello pain my old friend, can't say I've missed you."

Back pain, which I didn't even correlate to the crohn's is back too. Whoppie.

So now I'm trapped in a whirlwind of negative emotion and I want to scream and cry and rage that the brief hope I had of normalcy was cruelly ripped away.

7 weeks of remission. What a bloody joke.

Tomorrow I will pick myself up, put on my big girl undies and deal with this, but for now I just need to vent and allow myself to wallow in how crappy IBD is (pun most definitely intended).

Turns out 2016 isn't great, but I have every hope for 2017.
11-22-2016, 02:09 PM   #2
ronroush7
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I usually try, and succeed, in remaining positive throughout this horrible journey but today, well today I can't. When I finally thought I had this crohns colitis under control, it proves what a volatile bitch this disease is by flaring again.

I had a suspicion things weren't right, so had a calprotectin test and low-and-behold the inflammation is back. At least it explains the pain, cramps and frequent visits to the bathroom recently, so while I know I'm not crazy, it's not much comfort.

When first diagnosed I wanted to try a natural method of getting better, but ending up in hospital and a severe telling off from my doc cured me of that. But fickle fate intervened and turns out I'm allergic to mesalazine, so Pentasa and Octasa made me worse. Azathioprine gave me migraines and steroids are the only drug I can handle so far, but can't be on long term. They also didnt do much to bring my inflammation down.

So I tried EEN with ensure plus and in two months I'm in remission, feeling great for the first time since my hospital stay, introduced food again (carefully!) and felt positive about being able to work full time again then BOOM ...

"Hello pain my old friend, can't say I've missed you."

Back pain, which I didn't even correlate to the crohn's is back too. Whoppie.

So now I'm trapped in a whirlwind of negative emotion and I want to scream and cry and rage that the brief hope I had of normalcy was cruelly ripped away.

7 weeks of remission. What a bloody joke.

Tomorrow I will pick myself up, put on my big girl undies and deal with this, but for now I just need to vent and allow myself to wallow in how crappy IBD is (pun most definitely intended).

Turns out 2016 isn't great, but I have every hope for 2017.
Sorry for all you have been through and hope you feel better soon.

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Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
11-22-2016, 02:23 PM   #3
Tuff
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I'm sorry it was so short lived. Having Crohn's is a roller coaster ride. Can you go back on EEN? Have you tried biologics? It's important to get the inflammation down, before it does further damage. Stress can make you worse, so try not to stress. Have a hot bath, go for a walk, listen to music, anything to take your mind off things. Call your doctor.
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Inflammatory bowel disease may more than double the risk of a serious blood clot in the legs or lungs.
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Stelara, Warfarin, calcium, Vitamins B12, D.
Previously: 5-Asa, Cipro, Flagyl, Prednisone, Aza, Remicade.
Pulmonary Embolism, DVT's, osteopenia, Peripheral neuropathy.
11-22-2016, 03:19 PM   #4
Susabelle
 
Join Date: Dec 2015
Location: London, United Kingdom
Thank you I've just come out of nice relaxing bath and feel a lot calmer. I was so deeply disappointed by the results even though I guessed it wouldn't be good news.

I'm seeing my GI team next Tuesday so I guess I will see what the next step in the plan will be soon. Haven't had any biologics so far.

I think it's a good idea to start EEN again full time and will start tomorrow!

For now I've just had some lovely sweeties I know I will regret in a few hours (but tasted fantastic!) and am tempted to order a pizza ... in for a penny, in for a pound :P
11-22-2016, 03:24 PM   #5
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For now I've just had some lovely sweeties I know I will regret in a few hours (but tasted fantastic!) and am tempted to order a pizza ... in for a penny, in for a pound :P
I feel your pain. I've been flaring for 5 weeks; badly for the past 3. I'm waiting for a call from my GI about going in for IV prednisone or remicade. In the meantime, I'm eating very little, and trying to get enough liquids into my body. All I want is a big fat juicy burger! Pizza would do too. The Boost/banana smoothie just isn't cutting it. But oh, the pain after...

I'm glad the bath made you feel better...
11-22-2016, 03:36 PM   #6
Susabelle
 
Join Date: Dec 2015
Location: London, United Kingdom
I hope your doc gets back to you soon, sorry to hear you are flaring too.

I know what you mean, the logical side of me is saying it isn't worth it and it will suck later, but the other side that hasn't eaten anything tasty since May is saying "screw it, it hurts anyway, enjoy pizza!"
11-22-2016, 03:50 PM   #7
Cat-a-Tonic
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I definitely feel your pain, 2016 has been an awful year for me as well. Both flare-wise and personally. Flare-wise, I had the worst flare I've ever had in 7 years of being sick, and had my first ever hospitalization. Not a fun time and I'm still fighting my way out of the flare (it's been going on since July). I've also been struggling to find a med that works for me, but my GI is starting me on LDN soon, and I have high hopes for that. On a personal note, my grandpa died this year and we had to put my grandma into a facility because she has some type of dementia/Alzheimer's. So that was really sad and stressful. 2016 has definitely been really difficult in many ways. I keep hoping 2017 is going to be better, but after the election we just had, I'm now just hoping for a better year 4 years from now. Bring on 2020!

I hope you can find a good med that works and gets you into long-term remission, and I hope going back on EEN gets you a lot of relief in the meantime. EEN really helped me as well (that pizza does sound really good though now that you mention it!). I hope your 2017 is so much better than 2016. And enjoy that pizza if you do have it!
11-22-2016, 04:04 PM   #8
Susabelle
 
Join Date: Dec 2015
Location: London, United Kingdom
I'm so sorry to hear that you've had such a tough year. And with stress trigging symptoms it really can't have been easy.

This year was my first hospitalisation as well, it such a bugger when your own body works against you. I hope you get some relief soon, have you been on EEN since July? I've never heard of LND but just had a look an it seems interesting.

Well let's keep our fingers crossed 2017 will show improvement health-wise even if everything else goes crazy in the meantime!
11-22-2016, 05:30 PM   #9
Cat-a-Tonic
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Yeah, it's definitely been a stressful year and I'm sure that the stress is what triggered my flare. Literally it was like dominos falling each month - my grandpa died in May, we put my grandma in a care facility in June, I started flaring in July, and in August I was hospitalized. Not exactly a great summer!

I was only on EEN for a few weeks when I was first hospitalized back in August, then I slowly transitioned over to the low-FODMAP diet and that's been going well for the most part. It's pretty restrictive but I'm usually pretty good about sticking to it, and I think it is helping. (Sadly, pizza is not allowed on this diet, as it restricts both gluten and dairy.)

LDN is low-dose Naltrexone. It's a fairly new treatment for IBD, there aren't a lot of studies out about it yet, but the few studies that they have done are really promising. And it's got a low risk of side effects. I feel like it has a lot of potential to help me and very little risk, and fortunately my doctor agrees with me, so I'll be giving it a try in the near future.

Yes, 2017 hopefully will be better health-wise for all of us! We will get out of our flares and into remission, we will stay out of the hospital, our new meds will work wonders for us (and we will eat pizza). Gotta stay positive!
11-22-2016, 05:41 PM   #10
Melanie1
 
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Hope you are feeling better soon
11-22-2016, 06:08 PM   #11
ronroush7
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Yeah, it's definitely been a stressful year and I'm sure that the stress is what triggered my flare. Literally it was like dominos falling each month - my grandpa died in May, we put my grandma in a care facility in June, I started flaring in July, and in August I was hospitalized. Not exactly a great summer!

I was only on EEN for a few weeks when I was first hospitalized back in August, then I slowly transitioned over to the low-FODMAP diet and that's been going well for the most part. It's pretty restrictive but I'm usually pretty good about sticking to it, and I think it is helping. (Sadly, pizza is not allowed on this diet, as it restricts both gluten and dairy.)

LDN is low-dose Naltrexone. It's a fairly new treatment for IBD, there aren't a lot of studies out about it yet, but the few studies that they have done are really promising. And it's got a low risk of side effects. I feel like it has a lot of potential to help me and very little risk, and fortunately my doctor agrees with me, so I'll be giving it a try in the near future.

Yes, 2017 hopefully will be better health-wise for all of us! We will get out of our flares and into remission, we will stay out of the hospital, our new meds will work wonders for us (and we will eat pizza). Gotta stay positive!
Amen

11-23-2016, 05:41 AM   #12
Susabelle
 
Join Date: Dec 2015
Location: London, United Kingdom
Yes, 2017 hopefully will be better health-wise for all of us! We will get out of our flares and into remission, we will stay out of the hospital, our new meds will work wonders for us (and we will eat pizza). Gotta stay positive!
Couldn't agree more
11-28-2016, 10:19 AM   #13
MizzSarah
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I always remind myself when I'm ill that tomorrow is a fresh start---but I'm not buying that anymore. I had a great start to the year--I work in the schools-- and I had a great position that I loved. I wasn't sick as much like last year and then I lose my position to cuts in hours. Throw in it being that time of year for flu's etc and I'm a walking target. I've had chest infections every week and no matter how quick I recover, I attract another infection.

My joints are not functioning well either. Would be curious to know if any of you also experience severe pelvic pain. I've been experiencing pain in every bone of my pelvis and down my femur bone. It feels like it's about to snap. Can't tell if I'm inflamed from Crohn's or if it's something else entirely.

Hasn't been the greatest year
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11-28-2016, 10:31 AM   #14
Cat-a-Tonic
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I don't have pelvic/femur pain but I do have arthritis in both hips. I would say get to your GP, or rheumatologist if you have one, and get that checked out as soon as you can. That sounds awful but hopefully your doctor can figure it out and get it treated.

In a fun addition to my year, I had to get new rear brakes put on my car on Friday. My car was making a slight squeaking sound from the brakes but I thought it was no big deal because the sound had only been happening for about a week and it wasn't very loud. Well, the mechanic showed me that my rear brakes were almost down to nothing and my rear brake lines were leaking/about to disintegrate. Oh, fun. That was an expensive repair that I didn't have the money for. But I can't go without brakes on my car so I had to pay for it. Ugh.
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