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uphill battle…

uphill battle…

I was Diagnosed with Ulcerlative Colitis back in January of 2007. Speeding up. February of 2011, I had the ultimate flare up. My GI started me on Remicade March of that year. By June i was in and out of the hospital, was so sick they ended up diagnosing me with Mono. Developed a terrible cough that would not go away, still continually in and out of the hospital. By October of 2011 they starting discussing the Ilestomy surgery. By November 3rd, it was done. I had a series of 3 surgeries bringing me up to May of 2012 for the reversal. After the reversal thats when things got even worse. I developed a fistula and was I was put on Cypro and Flagyl for the next year or so, and then every time i would stop taking the Cypro my symptoms would worsen and I would have what felt like a flare up. I had my Fisula surgery in July of 2012, and ever since then I've had to use gause pads and zinc oxide to try to subside the irritation from going to the bathroom and wiping and the gause catches leakage that i have been experiencing ever since the fistula surgery. My fiancé finally made me switch doctors because she felt like he wasn't doing anything but continuing to up and lower the doses of Cypro after almost 2 years. I had seen a nutritionist to get info on diet, but everything is so black and white. I've done so much research as has my fiancé and the medical way and the organic way are so polar opposite it'll make your head spin. I was told by my first GI that diet was not an issue and if something bothered you to remember it and stop eating it. My fiancé didn't like that very much. I eventually switched drs and now after a long battle of not knowing after the surgery i was finally diagnosed with Crohn's disease which i was told wouldn't happen had i gotten the surgery, which i did. AND….now i have Crohn's, no colon, and a really big chip on my shoulder. I was put on Humira in early November of 2013, and so far I'm not pleased. I was put immediately on an every two week maintenance plane but that was NOT working. Then my GI gave me the Start up kit, and i almost feel like it works for a week and then it wears off? Does anyone else have the same experience with Humira?

Unfortunatly for me i thought going to a new DR would be better for me, since my fiancé and I are getting married next month…but I'm still pretty frustrated. I always think about if i didn't get the surgery, but my fiancé always tells me not to live in the past and that nothing can be done about it now, and to just do everything i can to make tomorrow better. so now she is trying to do research on juicing. I've been trying to figure out what will work and what won't. id love some feedback, its been a rough couple of years, and i just feel too young to feel this way. I just want to know when it will get better!!!!!!!!!!! IF EVER!!!!!! I get so mad because i know people can live with this disease comfortably and they just deal with the day to day stuff, but why can't i get mine under control!!??!?!?!?!?

any advice i'm willing to try!!!!
 

Jennifer

Adminstrator
Staff member
Location
SLO
Hi Meg_Hank and welcome to the forum! :D Sorry for the late reply.

I'm really sorry that you went through all that and then find out that you actually have Crohn's. :( I've seen a lot of people on the forum who had the same thing happen to them. Indeed there's nothing that can be done about it now but hopefully other people reading these stories will be able to avoid having the same thing happen to them.

You don't have to go one way or the other when it comes to medication and diet. We hear good results from both sides so why not combine them? Getting into remission as fast as possible is the most important thing so there's no need to really favor one over the other. It sounds like Humira is doing something for you but doesn't sound like it alone is enough right now. Adding another medication is possible (like 6MP, Imuran, Methotrexate etc) to help push you into remission by getting the inflammation under control faster and maybe in the future you would be able to stop the extra medication and continue with the Humira after you achieve remission. On top of that though you can try different diets and even if they don't help to reduce inflammation they will at least provide more nutrients that our bodies do need since people with Crohn's have absorption issues and can help reduce symptoms. Juicing also helps to remove the fiber from fruits and vegetables which may help with digestion.

Everyone reacts differently to diets so it may take some time for you to find one that works for you (same goes for medication). Don't get discouraged if one or a couple don't work. You can tailor the diets by taking aspects of each one and make it your own (same goes with medication as it's often the combination of meds that helps people get into remission).

We have a section for diets and fitness here: http://www.crohnsforum.com/forumdisplay.php?f=17
There you will also find the subforums for Juicing and the SCD and Paleo diets.

Keep us posted on how you're doing. :)
 

David

Co-Founder
Location
Naples, Florida
Hi there and welcome to the community. I'm sorry to hear of your struggles.

I am definitely a fan of juicing as part of an overall treatment plan.

Out of curiosity, what are your specific symptoms?

With the reversal, do you have a J pouch?

All my best to you.
 
So, as of right now, I'm almost 3 years out of a reversal with a JPouch procedure. Unfortunatly as I said before my first GI kept treating me with Cypro for over a year and ahalf so it basically just his my symptoms and as I would ween off the Cypro my symptoms would rear their head. Symptoms beig terrible cramping and frequent BM's. Up to 8 or more aday. Then he wod put me right back on the Cypro. So my fiancé made me switch drs. That's when I was diagnosed with Crohn's. As of now I still have good and bad days. Good days being 4-6 and bad days 8-9 BM's and on those bad days frequent cramping. I had a fistula and had the surgery two julys ago. So Unfortunatly I have had leakage from that fistuLa and I have found using zinc oxide and basically shoving gauze pads to prevent leakage on my boxer shorts and the acid-like poo from irritating my skin. I have to get frequent iron infusions due to severely low iron count and it's steady at a 9 now, so I feel a lot better then I did but working out is still difficult and I use to be very active in the gym. So now I have to say my mental health isn't so great. My fiancé tells me that if you think your arm hurts long enough eventually it will hurt. And I know she's right but I also know it's not all in my head. Mind over matter though right?
 

David

Co-Founder
Location
Naples, Florida
It's not all in your head.

Do you have a fistula that is actively leaking or did the surgery deal with that? I wasn't sure on that point.
 
I feel for you Meg_Hank! I was told for year (10+) that I had endometriosis and that is what was causing all my pain. Had a hysterectomy to stop it, and lo and behold, 2.5 years later and symptoms are back rearing their ugly head. I feel I had a body part removed for no reason :( I am currently a sitting duck, waiting for referrals and tests because I am undiagnosed.

Thing that sucks about Crohns is one diet that may work for one person may not work for the next. Everyone is different. Hope you can get some relief soon!
 
I feel for you Meg_Hank! I was told for year (10+) that I had endometriosis and that is what was causing all my pain. Had a hysterectomy to stop it, and lo and behold, 2.5 years later and symptoms are back rearing their ugly head. I feel I had a body part removed for no reason :( I am currently a sitting duck, waiting for referrals and tests because I am undiagnosed.

Thing that sucks about Crohns is one diet that may work for one person may not work for the next. Everyone is different. Hope you can get some relief soon!


I hope you get diagnosed soon and figure out what's a good plan of action for you. I'm sure I can speak for us both when I say not having control over a situation is beyond frustrating, especially when your dealing with drs who look at you as another number instead of a person suffering. Thanks for your support, hoping the best for you. Are you on any sort of biologics?
 

David

Co-Founder
Location
Naples, Florida
Did they ever mention the idea of Remicade to you? It has a been better results when it comes to perianal fistulae in the studies I've read.

Do they have a seton in the fistula?
 
I was on remicade pre-ileostomy .and it did nothing for me. This was also before the fistula. No one has mentioned try it again but I was under the impression that if it didn't work or u stopped using remicade you couldn't go back on it. Same with humira and other biologics maybe I need to keep brushing up on my information???? I'm not sure if the seton would be considered the "ring" but I did have that. For whatever reason I still have the leakage............ :/
 
Well I guess...but it was never fixing anything. It was just masking the problem. The inflammation never went away and never put me into remission............
 
Meg_Hank, I hope things get better for you! I understand some of your anger. Because I am going through similar feelings due to I cannot get my crohns under control. Ive tried Apriso and Pentasa and they didnt work. My GI had me do blood work today for possibly starting me on 6MP. I am scared and nervous and angry that I ever have to deal with this or any disease at my age. I am trying to keep my head up, as you should do the same. I guess we should be thankful to be alive and that you have the opportunity to marry your fiance next month! Best wishes!!

p.s. From what I hear, medications are trial and error, and sometimes it takes more than one. And my GI said there is no specific diet, I will learn as I go.
 
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