First time in the forum..My story:)

[J.Jewell5254]

Hello everyone!
I joined this forum way back in January of 2012, but I have not been here since. This is essentially my first time on a forum.
I was sixteen when I first started noticing that something was wrong. My mom has ulcerative colitis, so I was already familiar with the symptoms. I knew I had it, or something close to it. I woke up every morning with horrible urgency, and always had diarrhea. I just hoped it would go away. I didn't want to go into a doctor and actually hear it. I was in denial. But after a few months of awfulness, I couldn't take it anymore. I went and saw a local GI doctor and scheduled a colonoscopy (prep sucked). I was diagnosed exactly three years ago today. I am now nineteen. Since I was diagnosed, I have not been able to achieve full remission.
After I was first diagnosed, I was put on 40 mg of prednisone and Imuran. That did not work long term. My doctor decided to have me try humira. I gave myself the shot every other week for about a year, then increased it to every week. My experience with the humira was not bad, but not good. I had periods of ups and downs. For a while I was not flaring horribly, but never felt great. AND the only time I had a normal bowel movement was when I was on 25mg of prednisone or higher. In the past three years I have come to realize that a 'normal' bowel movement should NEVER be taken for granted. I have been on prednisone for well over a year now. My doctor decided that my chances of successfully getting off prednisone were higher if I switched my other medications.
In March of this year, I switched from humira to remicade. The doctor said I probably wouldn't notice much for the first couple of infusions. However, after the first infusion I was absolutely amazed. It worked GREAT. I hadn't felt that great since before I was diagnosed. I was like OH, THIS IS IT. This is my miracle. It still KIND OF is. I am still on the remicade. I have been getting it every six weeks. But after every infusion, it only lasts for 4 weeks Then, I crash and flare worse than ever before. That last 2 weeks before every infusion is completely AWFUL. But, on the other hand, the first 4 weeks after each infusion is great. I feel normal again.
My local doctor was not pleased with this though. He said it should be lasting the 8 weeks and I can't even make it through six. SO, he referred me up to Mayo clinic in Rochester. I went in August and had another colonoscopy done. The doctor up there said he wanted to put me back on Imuran and see how I do on an increased dose of remicade. (I went from 5mg/kg to 10mg/kg). But....nothing changed because I still started flaring at 4 weeks with the next infusion. I go back up to Mayo in November and will go from there. He said if there has been no improvement I can switch to Entyvio. But if that failed I would need surgery. THAT is what scares me the most. I'm a nineteen year old girl. I don't want surgery. He said because my rectum is affected by the crohn's, I would need a permanent colostomy bag.
There's so much more I could say but this is already long enough. I just feel like no one understands. I'm scared. I don't know what will happen in the future. It doesn't help that I've been on prednisone so long. That really changed me. It has brought my mood down so much, and the people close to me think I am absolutely insane from all of the mental side effects from it. And the side effects really came out while going through a tapor, but thankfully I am a week away from being off of it.
Well, thanks for letting me share!

 

[Robrich]

If you have crohns avoid surgery at all costs. Entyvio is certainly worth trying I am doing that now.
Prednisone is preferable to surgery, entocort or uceris May work also. Methotrexate if Imuran doesn't work.
With crohns it will most likely 95% recur somewhere else after surgery so what's the point?
You should try some alternative therapies as an adjunct to the meds they may help the meds to last longer and provide some additional relief. SCD, GAPS, PALEO
Saunas, sweats to mitigate the steroids.
If all else fails there is the elemental diet, I like absorb plus for that
There is also LDN to try and other new treatments n the near horizon
But don't give up any intestine unless it is life threatening
Good luck

 

[J.Jewell5254]

Thank u! I have never heard of entocort or uceris.
My doctors say they would want me to have surgery before I got sick enough to where the surgery itself would be dangerous. But like you said, it will most likely come back somewhere else. Not worth it. Not now at least.
Good luck to you as well

 

[highlandsrock]

"....avoid surgery at all costs" is a nice ideal but just too simplistic. Whilst we all suffer under the umbrella term of "Crohn's" each of us will experience it in different ways - where the disease is active; how we react to medications; the affect the disease has on our lifestyle. For some patients surgery could be a better option than spending years trying different drugs and diets. This is a shortened version of my experience :

Back in 2000 my then consultant started talking about surgery to remove a stricture in my terminal ileum. I really didn't like the thought of surgery, in fact I said I would do anything to avoid the knife, so we decided to try Azathioprine instead, as a "last resort". It worked for nine years but was stopped because it caused my platelet count to plummet. At that point I started to feel worse and worse. A CT scan showed internal loops and fistulas had formed and surgery was the only option. Having discussed it with two consultants and a surgeon my attitude to surgery changed to being very positive, and still is, despite undergoing a four and half hour "interesting and enjoyable" operation (according to the surgeon) in October 2010.

I've since wondered if I had had the surgery in 2000 would it have been a lot easier and without the need for a stoma? On forums I've seen other Crohn's sufferers asking if they should have surgery sooner rather than later so I asked my current consultant for his views.

He thought it was probable that by having the surgery earlier and getting rid of the stricture I could have avoided the loops and fistulas forming and, yes, surgery would most probably have been less complex. So just thinking that through - I might have ended up having keyhole surgery in 2000 rather than the full monty in 2010 and the need for the subsequent reversal in 2011. Recovery time is likely to have been a lot quicker and I probably would have escaped a few of years of pain.

But the above are what-if's. As it worked out I wouldn't want to have changed anything as I was far more prepared both mentally and from a work/life perspective for the surgeries and the recoveries in 2010/11 than I would have been in 2000. If I had delayed surgery any further than 2010 then I would probably have ended up as an emergency.

Since 2010 I have been in clinical remission and life has returned to normal. I'm realistic enough to realise that Crohn's could return in the future but I'll balance that against the current quiet spell.

I wish you well, keep an open mind and I hope you find a solution that suits you

 

[Ali29]

So sorry to hear you've had such struggle as such a young age.

Good luck and keep your chin up - it can get better!!