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New Diagnosed and 21... What to do?

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Crohn's Disease
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Posted 2/17/2023 5:33 PM (GMT 0)
Hi!
I was newly diagnosed with Crohn's disease after being sick for a year and not knowing what was going on. I was excited to join this forum because I think I might get some support, while I've been so alone in this. Does anyone have any helpful tips, resources, or advice for someone who is young and lives with Crohn's? I just started Entyvio as well, and could use some tips and advice on that.
Thanks!
Posted 2/17/2023 11:40 PM (GMT 0)
Hi Lottie,

First off, welcome to HW. You have certainly found a great forum to garner support from, and get answers to your questions. There are many experienced members and moderators here that can offer you helpful advice.

Suffering for a year undiagnosed isn't uncommon. In fact many Crohn's sufferers can go significantly longer before getting properly diagnosed. Saying that, I'm going to assume that you've had confirming diagnostics done, and are seeing a Gastroenterologist at this point.

Usually when Crohn's is suspected, upper and lower scopes are done with biopsies. There is supporting bloodwork as well, but the biopsies are still the best tool for diagnosis.

Since you're already getting Entyvio, it sounds like your GI prefers an agressive approach to treatment. This is likely really going to benefit you in the long run. When opting for anti-TNF's, Remicade or Humira are usually the most often prescribed, but Entyvio may be an excellent choice for you. Time will tell, and with some meds, they can take time to work and assess. As you do your own research, these meds will sound scary, but a lot of the fears were early on, and now the rewards far outweigh the risks.

I'm curious that you say that you feel "so alone in this". You're so young, do you have any family that can advocate for you, are be of support as you go back and forth to appointments? Perhaps even some friends may step up to assist with this.

Lastly, early on everyone experiences fear, anxiety etc. Try to stay positive. They've come a long way in the treatment of Crohn's disease. You have a long life ahead as well, and there will continue to be new research, better meds and treatment will improve. Good luck, and is you have questions, ask away.
Posted 2/18/2023 12:35 AM (GMT 0)
Hi,
Thank you for your wonderful supportive reply!

Yes I had many tests done, and it was in fact a capsule endoscopy that confirmed the Crohn's disease because the inflammation in my ileum was too far up to see on a scope.

My doctor wanted to try humira, but my family has a impressive history of cancer, so Entyvio was the second choice. I'm so happy they are taking an aggressive approach, as they say I have severe Crohn's symptoms.

I think I feel very alone because I don't really have anyone to go to appointments with me or the hospital or things like that. Sometimes people come, but more than often I go alone. I have many people in my life, but I have been sick for so long and I feel as though they are getting burnt out. Maybe it is that I have trouble asking for help, but people often don't come to my medical things with me. And after all, there's only so much people can do. They can't stop the vomiting or the diarrhea and the pain. I'm the only one who can shoulder that weight.

I hope things improve. Before my diagnosis I didn't know how much longer my body would be able to do this for.
Posted 2/18/2023 2:10 AM (GMT 0)
Glad to hear that you have many people in you life. Really hope they get informed, and in turn get more supportive. You really need that, esp. at your age. I understand the choice better now. Entyvio can take some time to work. Has your GI suggested any other meds as sort of a patch over in the mean time? Prednisone might be a good choice for now, It can be a nasty medication, but it does work, and if you haven't been on it before, one course of 8 weeks wouldn't hurt.

Once again, good luck going forward. Hopefully, some others will chime in with some advice. I'm sure they will.
Posted 2/19/2023 3:24 PM (GMT 0)
Hi Lottie, welcome to the forum. Getting the diagnosis of crohns is always a tough for anyone. Educating yourself about the disease & treatment options is imperative. To watch podcasts & learn about crohns, the CCFA.org is an excellent website. The reason I suggest the site is the info there is factual, there is too much garbage on the internet. You can also go to Entyvio's site & read about the drug there too. I believe Entyvio offers a patient assistance program that works with your insurance towards helping with co-pays, check it out.

It's hard being sick at a young age & quite honestly young people in your age bracket are usually healthy. They can't relate to someone with a chronic health condition. Do you have 1-2 best friends that you can confide in? Young people are busy with their lives & if they are working, most likely they cannot take off of work to go to dr visits with you. Who are you the closest to in your immediate family? Whoever that person is, try to talk to them.

If you are having a lot of cramping & running to the bathroom because of diarrhea this is called tenesmus, very common with crohns & UC. Ask your dr to prescribe the generic Bentyl, it's an antispasmodic, many of us has this issue.

Make a list of questions & take it with you when you see your dr. Never be afraid to ask him/her a question. You have to learn to advocate for your care.

Although this forum is slow, a few of us still check the site & try to help anyone that we can. Keep us posted.
Posted 2/20/2023 2:01 AM (GMT 0)
Hi Lottie, sorry to hear of your diagnosis, but at least now you know what you're dealing with and you have started a good treatment plan.

What kind of symptoms were you dealing with when you were sick for a year? Was your colonoscopy clear? Did you also have a small bowel MRI in addition to the capsule endoscopy?
Posted 2/20/2023 8:34 PM (GMT 0)
Hi, I tried Prednisone, and it didn't do much for me, so I started budesonide. That has helped a bit (1-2 times throwing up per day vs 5-6). However, it has a lot of negative side effects for me, so I am tapering off of it. I had my first Entyvio treatment last week.
I have a book on Crohn's I am reading, and that has helped a lot. I also see a nutritionist this week, so I am looking forward to that.
I do have 1-2 best friends I can confide in, but I think they are tired of hearing how sick I am at this point. It's also uncomfortable to talk about. I feel I don't have much support. My family is supportive, but we have our issues so they don't help much.
While I was sick for a year, I would throw up almost everything I ate/drank. I'd have pain, diarrhea, constipation, blood in my stool and vomit, and back pain. Most of these issues still exist for me.
Thank you for all your support and guidance. It really means a lot and I have a number of questions/topics I will post to the forum.
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