New to group

Hello all,

This is so awkward for me. I am a 47 year old female. I was dx with cd in February of 2016, but indication of my disease on an er ct scan dates back to 2007. Apparently I'm an extremely rare case. My only symptoms are chronic diarrhea and stomach cramps. I was misdiagnosed with ibs-d for many years. I have yet to find a med that works for me. I've tried Lialda, Pentasa, Imuran, Budesonide, etc... I'm so defeated, it's so hard to cope with Dr appointments, tests, blood work. I just cry everyday. My husband and kids are great, but they just don't understand my daily struggles. Fissues, back pain, cramps, urgent diarrhea that makes leaving the house impossible. I guess I'm just looking for people to chat with that understand how incredibly f'd up this rotten horrible disease is. I actually drove all the way down to the Cleveland clinic which is ranked #2 in gastro in the nation (3 1/2 hours one way) to have a Dr spend 20 minutes with me and tell me everything that I read online, Lol. Big waste of time! What else... I cry everyday, I don't feel like my life will ever be "normal" again. I'm struggling with the finality and forever of this diagnosis. Thanks for reading, hugs and we'll wishes to all. X0XO

Welcome to the group. I am sorry you are having a hard time. No doubt about it, crohns is a very messed up disease. Crying has been a part of my life a lot lately too. What else can I do though but to keep moving forward. I am glad that your family is supportive, that is great as there many here who don't have supportive people around them. Keep going with the meds, you will eventually find one that will work. Many meds do take a while to get into your system. I also have had some anxiety about leaving my house and have found that adult diapers have given me some relief. Even if I don't feel like I'm having a bad day, just knowing I have one on I know that if I don't make it to the bathroom I can at least walk to one without feeling super gross. I also pack a small bag with all the supplies to clean up if I need to. As for accepting this disease, I don't know! I have had it for over 20 years now, some days I feel like giving up, others I'm pissed off and determined to not let it win. I talk with my hubby a lot and visit this site for support. I just take it one day at a time. I'm glad you joined and wish you all the best.
Whoops!

Welcome. You have found a great support group here. Feel free to come here anytime. I hope the doctor can find the right medicine to put you in remission.

Kjs11 said:

I have yet to find a med that works for me. I've tried Lialda, Pentasa, Imuran, Budesonide, etc... I'm so defeated, it's so hard to cope with Dr appointments, tests, blood work. I just cry everyday.

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You're not defeated. You have just begun to fight. It looks like you have started off on all the standard milder drugs, but you still have the big guns. Talk to your GI about getting on a biologic - probably an anti-TNF such as Remicade or Humira to begin with.

For many sufferers on this board the biologics have been a godsend.

I gotta be honest, I'm terrified of the biologics. Has anyone had good results with them?

Kjs11 said:

I gotta be honest, I'm terrified of the biologics. Has anyone had good results with them?

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I was diagnosed back in 2014 with Crohn's after a very painful 7 years of misdiagnoses myself. Soon as I was diagnosed they put me on entocort for about a year hoping to put me in remission but that itself didn't help. I was then put on Humira which in less then a year put me in remission. Im still experiencing complications with my Crohn's but in a very short period the Humira did help. There are side effects of Humira just as any drug but it's best you 'nip' it in the bum while your body still may respond to a biologic. Follow the instructions and schedule. For me, I have to make sure I don't miss a dose or my body goes into flight or fight mode. What biologic are they suggesting you start on? For me personally I chose Humira because it is something you can do on your own time instead of having to spend hours at hospital for an infusion

Remicade, what complications are you still experiencing? So you are no longer in remission?

Kjs11 said:

Remicade, what complications are you still experiencing? So you are no longer in remission?

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I've been on Remicade for about 12 years with no serious side effects, however my current "blip" is that I was just diagnosed with shingles..... Doctor is making sure he is on top of things though so I hope this doesn't last long!

So 12 years on the remicade and you've been in remission the whole time??? Sign me up! Did you have the shingles vaccine?

Kjs11 said:

Remicade, what complications are you still experiencing? So you are no longer in remission?

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Though my scaring as healed nicely from being on the Humira I'm still having frequent bathroom trips, abdominal cramping etc. It is greatly reduced but the symptoms are still there. I remember reading somewhere that when doctors say remission it only means there is a reduced amount of symptoms not that is completely cured. I thought the dr's were crazy when they told me I was in remission because to me then I thought to be in remission you had to be symptom free. Some get lucky I have been told but I still battle. Humira has helped. I'm just not symptom free.

Im also dealing with the side effects of Humira. I have had pneumonia twice. I am battling on and off viruses from my weak immunity. I've seen specialist to make sure I didn't have other underlying conditions causing the frequent sickness but I'm in the clear. My gastro won't take me off the Humira as a result of me getting sick. Cuz it's working they don't want to chance it which is frustrating for me.