Diagnosed with Crohn's a Couple Days Ago

[AlanCD]

Hey guys! I figured I should introduce myself as I'll probably be posting on this forum quite a bit. I first started showing signs of Crohn's about a year ago. After losing around 20 pounds within a couple weeks, I went to see the doctor at my University. He thought that I had celiac disease and prescribed me Zofran for nausea so that I could eat normally again. Because of pretty bad anxiety, I never took the Zofran and didn't go back to see him. A couple weeks passed and everything seemed to have returned to normal.

Fast forward a year (about 6 weeks ago), I started having EXTREMELY bad lower right abdominal pain that would radiate to my lower back and down my right leg. This would happen every single time I ate and every morning when I woke up. I knew something had to be very wrong, so I finally decided to see a gastroenterologist.

After explaining my symptoms, he looked at and felt my abdomen. He said that because it was tender and there was some discoloration, I needed to have an immediate CT scan. The scan didn't raise any red flags, but he said that I should have a colonoscopy just to double check. After the colonoscopy, he told me that I had quite a few ulcers on (in?) my terminal ileum, and that it was very inflamed. He was almost certain that it was Crohn's but wanted to wait for the biopsy lab tests. Last Friday, he finally diagnosed me with Crohn's.

This Friday, I am going to get a blood test, chest x-ray, and MRI to screen for tuberculosis and Hepatitis A/B. He says that he wants to start me on Humira every other week for a year. At that point, he says that I'll have another colonoscopy. If I am in remission, he will take me off Humira.

**This whole medication/treatment thing is worrying me. Right now I don't even feel that bad; I don't think I even really need any medication. His plan though is very confusing to me. I've read that you can develop resistance to Humira right? So why would he take me off after a year even if I am in remission? Doesn't that mean that if I had another flare that the Humira wouldn't be as effective if effective at all? I've also read that over long periods of time Humira just stops working for some people. What happens then? Would he just switch me to Remicade? What happens if THAT stopped working? I'd start running out of options at that point right? I'm only 19; I can't have all of these medications losing their effectiveness after a couple years.

**I'm also worried about the chance of having surgery. I asked my GI, but he said not to worry about that. I read a study by the NIH that said that 70-90% of people diagnosed with Crohn's end up having to get surgery.

**I just don't know what to do right now. If everything goes as planned, my GI will start me on Humira next Friday. Like I said though, I really don't feel very bad at all right now. Should I even take any medication at all? Especially if there is a chance of it losing effectiveness, shouldn't I just wait until I start feeling really bad again before starting it? The possible side effects make me want to hold off even more.

What should I do guys? What's in store for me? Does Humira every two weeks for a year, checking to see if I'm in remission, then taking me off of it sound right?

 

[ronroush7]

Hi. Being on no medication might bring the risk of the disease getting worse. I would be concerned that if he took you off Humira there could be a chance that you could develop antibodies towards the medicine.

 

[MizzSarah]

your right that if you stop Humira there is a chance that it will stop working for you. (My doctor told me)Obviously if your sick you may need to reschedule your injection as you should never take one when your unwell.

If Humira is not working for you after 8 months your doctor will have to look at other options. what works for one doesn't work for all.

I've had Crohn's since 2014 and have been on Humira for a little over 8 months now. I've had a follow-up colonoscopy and the Humira is working well. There are obviously side effects like lower immunity but definitely give it a go. With Crohn's you try till you find something that works. Keep a journal of things you may experience to inform the doctor.

Keep a food journal of how your body is reacting to certain foods. Gluten may be something you should avoid.

I am still very scared of the possibility of having surgery. I may have to one day but right now I'm trying to focus on what I can do to help myself now.

Be informed and have questions you want to ask ready for each and every doctors appointment.

Take a lot of vitamins! Fish oils! Vitamin B,C,D. I take vitamin b injections as I'm not sure what my body is absorbing.

Best advice I can give is what Dory says in Finding Nemo. Just keep swimming. Be your own advocate. Try till you succeed. Be kind to yourself on the days your body is telling you to take it easier.

If you have questions about humira don't hesitate to ask.

 

[mom5272]

I've had CD for 24 years and have been on immunosuppressive therapy for about 18 years and pretty healthy. No infections, no surgeries. I work, and live a great life. Yes, the meds are scary but untreated disease is worse. Read as much as you can. I stay away from salads, seafood, alcohol and milk. I will be switching from 6mp to Humira soon and I'm scared too. But.. there are no guarantees in life. Just do your best, be strong and don't worry about the uncertainly.

 

[ronroush7]

Amen

 

[valleysangel92]

Hello there, welcome to the forum

Crohn's is one of those conditions that sneaks up on you, it can show very few symptoms right up until it becomes severe, so its really important to catch it and get it under control as soon as possible. I know you don't feel unwell enough to be on a medication like Humira, but in the case of IBD, prevention is very important. If you have ulcers, that means you have had active inflammation for a while already and without treatment, that inflammation can silently continue, and you may not know about it until it becomes an emergency. I've known people who have felt fine right up to the point of needing emergency surgery, I'm not saying this because I want to scare you, I'm saying it because it's important you understand the need to make sure its well controlled.

Humira can seem scary I know, but it has worked amazingly well for a lot of people, and if it doesn't do the same for you then you can tick it off the list and try something else. Your doctors wouldn't be suggesting it if they didn't really think you need it. I understand its daunting, but it really is better to get on top of it than wait for it to become more serious.

I know you said you were worried about surgery, and one of the ways to put off surgery as long as possible is to make sure the crohns is controlled medically. As for the plan to check things in a year, that's common protocol in many places. Here in the UK they re-assess everyone who's on this type of medication on a yearly basis. They are looking to see if the medication is working, and if the benefits of being on it are still outweighing the risks. If they decide that the medication is no longer doing its job then they can start trying something different, if it is working but you aren't in stable remission (in other words if they think you would relapse without it) they tend to leave things as they are. If a person is in stable remission with low relapse risk, then they might decide that the risks of being on the humira are bigger than the risks of being off it, and therefore may stop that medication. Usually in the UK if they stop a biologic they will put you on a med lower down the ladder to lengthen the time before a relapse occurs, but not all doctors do this. You are correct in saying that you can build antibodies over time, but with good management it may be that next time you relapse you don't need such a powerful medication, and even if you do, there are lots of other options including infliximab and vedolizumab. N

regarding those surgery statistics though, they include every possible IBD related surgery, even things like banding piles, so it doesnt necessarily mean major surgery. Even if you do end up needing something like a resection (where they remove the diseased bowel and rejoin healthy parts), its really not as bad as it seems. I had a resection about 6 months after diagnosis, because I had been undiagnosed a long time and medication wouldn't of worked, and I was really scared about it, but it was all a lot easier than I had expected. Yes, it was sore, yes it took a good 6-8 weeks to recover, but, after it I felt like a different person, and I didn't have a stoma either, so if that's worrying you then please don't let it as not all surgeries result in them. Even if you do need one, many people say that their stoma has saved their lives and that they don't regret it at all.

 

[DougUte]

Alan, I went for years with symptoms but was undiagnosed or misdiagnosed with Irritable Bowel Syndrome. I was diagnosed with Crohn's in 2010. Because I was misdiagnosed with IBS I was on the wrong meds and needed surgery. I have since been on other meds which failed, and then was put on Humira. I have been on Humira for over 5 years and until recently it has been doing very well in controlling my Crohn's. My suggestion is that you go on the meds, even though you don't feel bad. Crohn's can do much damage and you not even feel it.

I have not had any side effects from Humira in 5+ years. It has been a good med and done well for me. Also, like valleysangel92 said, surgery is not a forgone conclusion, especially if you are controlling your disease through medication.

 

[ronroush7]

Yes. You should go on the meds.

 

[CavsFan]

AlanCD - Any update on how things are progressing? Hope everything is going well.

 

[EmmaLou]

Hi!

I'm also very new to Crohn's (diagnosed in May), and agree it is scary and confusing. I was started on the Humira after IV steroids because of bad flares. Because the disease had been undetected and thus not treated for a long time, it had had chance to do serious damage and I had to have emergency surgery to remove my terminal ileum in August. Untreated, this disease can do serious damage. The treatment options sound scary, as do the side effects, but as has been said it going untreated is worse. I've been told that had my Crohn's been picked up a year ago, surgery might have been in my future but I certainly wouldn't have ended up as ill as I did.

If you feel well and the meds keep you that way, then they are doing their job, and that's great. If they don't work for you, your GI will keep going until they find something that does. My GI used my asthma as a comparison when going through the Humira Vs Remicade stuff, and I was saying that I didn't feel that ill so surely didn't need that level of medication (if only I could have seen what was coming two months later!!!). He asked if I would stop taking my preventer inhaler because I hadn't had an asthma attack for a while, and my chest felt good, or would I keep taking it and know that that is why I haven't had an asthma attack. That really put it into perspective for me.

I know a lot of people are afraid of having surgery, but it can make a massive difference. Since my op the cramping after eating has gone, the abdominal pain (low right side) that left me unable to stand unaided has gone, and the nightly vomiting has gone. It wasn't without it's problems, and I've got more in the not too distant future but it saved my life. If your journey comes to surgery, you'll have help and support, but as has been said, not everyone needs it. I used to get caught up in stats, but then a friend pointed out that we have no idea how many people are living with the condition undiagnosed, so don't show up in the stats. Account for those (unknown numbers of!) people and the stats look very different.

 

[Donnainvero]

I just had my appendix removed yesterday I had no symptoms I had stopped taking my antidepressant and I actually pharmacist if that was the reason why I was nauseous she said absolutely when I went to the hospital they thought it was kidney stones. They did a CT on me and found it was my appendix from the time the pain started within two hours I was getting my appendix removed when I was reading about this Crohn's disease what do I have to look for regarding this Crohn's disease? It says not everybody gets it I just want to know what I should look for thank you

 

[Julia S]

Alan,

I'm a newly diagnosed person so I feel ya. Maybe you could discuss being on a different medicine first? Like monotherapy with Imuran/6mp? Many people do very well with that medication for a very long time without needing a biologic. And then, if that does not work, add the humira?

I'm not saying you should not follow your doctor's instructions, but I think its absolutely OK to talk to him and ask him why he thinks Humira is better than starting with an oral immunosuppresant and why he would take you off Humira after a year, etc. I always feel that the best doctors are those that are willing to put it all on the table for you (benefits vs risks, etc.) and then are up for working with you on what you feel is best for you. And then, of course, super regular check ups to make sure everything is going well.

As for surgery statistics, I always wonder how they calculate that. For instance, I've had Crohns for around 6 months now and my Crohns is SUPER mild and under control (and I'm super stoked about that and also I hope this goes to show the newly diagnosed that not every Crohns case is severe and there is hope). Despite my mild Crohns status, I'm going to need surgery in the next two weeks because they have found in my last CT scan that while my inflammation is GONE, I have a paracecal hernia.... So for the sake of statistics, I might be classified as a Crohnie that needed surgery in their first year. But the surgery is not Crohns related. You know what I mean? So it makes me wonder how they collect data to say that all Crohnies need surgery within 10-15 years. Maybe some of the surgeries are not necessarily for Crohns but are still classified as a Crohns patient needing surgery within 10 years of diagnosis...?

Lastly, I read this paper (the European protocol for diagnosing and treating different forms of Crohns disease) which I found super informative. I'm posting the link here if you want to read it. I think it might be helpful because it does offer input into when its best to start with a biologic and when its best to start with something a little less hardcore. I hope it helps:

http://ecco-jcc.oxfordjournals.org/content/eccojc/early/2016/09/21/ecco-jcc.jjw168.full.pdf

 

[ronroush7]

I just had my appendix removed yesterday I had no symptoms I had stopped taking my antidepressant and I actually pharmacist if that was the reason why I was nauseous she said absolutely when I went to the hospital they thought it was kidney stones. They did a CT on me and found it was my appendix from the time the pain started within two hours I was getting my appendix removed when I was reading about this Crohn's disease what do I have to look for regarding this Crohn's disease? It says not everybody gets it I just want to know what I should look for thank you

Have you been diagnosed with Crohns Disease?

 

[SharonLBach]

I just turned 62. I had problems eating in my early teens. It was diagnosed as problems due to my being anorexic (which I was.) Once I got the anorexia under control at age 19, I was still very sick and getting sicker every day. It all crashed in on me in August of 1973. I spent nearly 2 1/2 months in the hospital while doctor's tried to decide what was wrong with me. They finally diagnosed the crohn's disease.
Medication, surgery and diet has been a large part of my life. I have had 6 bowel surgeries the first when I was 21.
At that time I went off all medication and experienced 10 years of remission. The following years felt like I was paying dearly for those 10 years. I am at a cross road. I have always avoided taking a biologic medication. I really tried everything to avoid it. I just can not take the pain and suffering any longer. Also, I suffer from malnutrition. I have been in the hospital 5 times since June 2016. Enough! My magnesium was 0.5 my last admission. The charge nurse told me he had never seen anyone with it that low. Several other things like folic acid, calcium, etc. had to be replaced and I had not been out of the hospital very long. I have agreed to start Remicade infusions soon. I never thought I would say this but even with all the possible side effects, I am looking forward to it. Why? Because I am sick of being in pain and suffering. I can't stand the toll it is taking on my family. (I have the most wonderful, helpful compassionate, husband and son in the world.) I want my life back. I want to get out more. Do the things I used to do outside. Hobbies, fun things. I'm sick of being sick.
They did not have the options when I was diagnosed that they have today. There was little possibility of remission from drugs or really having control of Crohn's. I gave up all the foods they told me to. I did all the things they told me to do and didn't do the things I shouldn't yet I still ended up losing nearly all my large bowel and a good portion of my small bowel. If I had the choice of taking a medication like Humira then giving a better chance at at least some control, I would take it. Drugs are not always the right answer but If I was were you are at today, I would choose the drugs over just letting things go on until you have a hole in your bowel (life I did) losing a lot of intestinal track (like I did) and living with the results (like I am.) I hope this helps you see what the alternative could look like while deciding if you want to try the Humira.
Shar

 

[ronroush7]

Agree and hope the best for you

 

[my little penguin]

DS has been on humira for close to 5 years.
He has been through 2nd to now 7th grade
Lots of coughs and colds from other school kids no issues
His scopes have looked clean since starting humira .
If something is keeping inflammation under control stopping it really isn't recommended since it may not be as effective the next time
Not to mention the damage that can happen while off meds


Good luck