Crohn's Disease Forum » Your Story » Crohnís disease is just brutal.


09-14-2018, 08:49 AM   #1
Jeremys
 
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Crohnís disease is just brutal.

Iím Jeremy. I live in orange Ca Iím currently under the care of UCI medical in Orange.

Iíve had crohns since my teens but undiagnosed. Im diagnosed now and working on a plan but also currently dealing with multiple spondyloarthropies and Iím about as low in the depression scale as possible. I barely eat. I sleep all day. I donít work. Miserable.

Just got a new colorectal surgeon and she wants to explore this nice new anal fistula that is causing problems with surgery.

I donít want any of this. I donít see any way out. I just donít want to be in this position and I canít figure out how to get back to life. I just see future resections, surgeries, 25%mouse infusions and this constant basketball bloating with diarrhea that rarely goes away. I canít get my b and d vitamin levels up and Iím losing my mind.

I absolutely do not have any thoughts of death. I want to live but I canít seem to find the will. It seems like this disease is just brutally devastating and I dont see anything resembling a pain free future.

Anyone have any ideas?
09-14-2018, 10:34 AM   #2
Scipio
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Wow, it sounds like you have it really bad. I'm so sorry that you have been thrust into this situation. You will find a lot of support among your fellow Crohn's sufferers here.

Can you tell us a little more about your therapy up to this point? Are you on or have you tried biologics? If so which one(s)?

The trick in most cases is to work closely with your gastroenterologist to find the right combination of medication, diet, and healthy living that puts you into the sweet spot of remission and keeps you there for as long as possible. You can get a lot of information about what worked for others right here, although it soon becomes obvious is that every case of Crohn's is unique and so what works or fails for one may not hold true for another.

Good luck and welcome.
09-14-2018, 02:19 PM   #3
Jeremys
 
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Thanks for your response. Im 43 right now. It was a weird diagnosis process that involved going to a Rheum dr and finding out that my Crohn's is in fact part of a larger systematic issue that I have called Spondyloarthropathy that still needs to be diagnosed into each issue. I have the easy peasy skin vasculitis that isn't too bad to deal with as well but just not only crohn's.

To make a long story short. I finished my first course of 6 weeks of entocort at 9mg a day and at the end of july. I have rx for cholystyramine and dicyclomine that I never take because they make me feel worse. I take vitamin D because I am deficient. The entocort it made my swelling/bloat go down a ton, my rashes all cleared up and I was feeling great for about 3 weeks. I was sore from having solid tools and it was a soreness I was glad to have!!!


Then the realness set in. at about 5 weeks I noticed a large lump in between my anus and my tail bone. My gastro immediately scheduled a pelvic mri that showed what looks to be a perianal fistula maybe sinus tract.

The first Colorectal surgeon I saw made me want to kill myself. for real. The
worst dr I have ever come around. She actually said, and I quote "you never want to be interesting to a medical specialist, at this point you are almost interesting" I thought it was cute. She had the bedside manner of a hungry wolf, so I am currently waiting to see a 2nd colorectal surgeon to see if they would at least discuss non-surgical corrections before cutting into anal muscles and hopefully get someone who has a little compassion or empathy.

I just finished a 14 day course of Flagyl and Metronidazole and it helped the swelling and pain of the anal issue a little bit. I am currently, as of today starting 6mg entocort until we can get a confirmation of the fistula/sinus tract or whatever.

I don't see light at the end of the tunnel. I see a man that is at the beginning of resections, surgeries, continued malnutrition and almost complete isolation from society with the exception of my immediate(mom,dad,wife,son) family.

I am afraid at this point. I'm afraid of Biologics. I am afraid of the surgeon cutting into anal muscles. I am afraid to see my stools turn into black coffee grounds for long periods and I am tired of going to the bathroom 10 times a day.

I have become my disease and it will define my life, for the rest of my life. To reiterate, I have absolutely no want for dying. I am just finding it terribly difficult to live and find a reason to continue in the face of immeasurable suffering and pain.


Even typing this, I am afraid that I am putting hopeless words into the minds of hopeless people reading this, and for that I am sorry.


I just don't know what to do anymore. I guess that is why I am here.
09-14-2018, 03:21 PM   #4
Scipio
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No one wants to take biologics before they start taking them, including me. But once they take the plunge (or are forced into it) they often find they are a real godsend. Many members here were given their more less normal life back once they got onto a medication that worked for them - often a biologic. Also, some biologics such as Remicade have been shown to be useful in closing fistulae and keeping them closed.

I'm not saying that biologics will solve all your problems, but for disease as serious as yours they should definitely be on your menu as an option to seriously consider.

Right now it looks like you are still in induction phase (Entocort), but you should be discussing with your GI what your longer term strategy should be. You can't stay on steroids like Entocort long term - the side effects are just too great. So you eventually need to move to a maintenance drug, usually either a immunosuppressant such as azathioprine or one of the biologics.
09-15-2018, 03:10 AM   #5
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I agree with Scipio. Biologics arenít anyoneís first choice. No one makes that decision without hesitation. I put it off for a long time, and then ended up so sick that I had to be hospitalized. Iíve been on Humira for a year now, and I wish I had done it sooner. I havenít noticed any side effects from it, and I am basically living a normal life again. You have to consider your quality of life when making decisions.

Iím sorry youíve had such a hard time so far. This disease can really mess with you mentally. I fell into a deep depression when I was first diagnosed. Once you get your disease under control, youíll see that this doesnít have to define your life. Good luck. I hope you get some relief soon
09-15-2018, 03:39 AM   #6
Lynda Lynda
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Hi Jeremys. I had an anal fistulectomy in 1992 and I healed well and had no complications. But, yes, find a colorectal surgeon that you feel comfortable with and ask a lot of questions. No question is a stupid question. Also, I started Humira in June 2018 and have not noticed any side affects. I did not hesitate when being offered a biologic. I am taking the 6mp pills along with my Humira. Everyone's experiences with symptoms and treatments are different, but no doubt all of us here know how you feel. I started experiencing yellow watery diarrhea in 1997 and was scared and miserable.....this was the beginning of my journey. Take Care and know that you are welcome here. Many knowledgeable folks are here with many years of experiences to share. ♡
09-15-2018, 11:00 AM   #7
Bufford
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A lot of us including myself was afraid of the unknown with Crohn's and its potential for pain and misery. Once I started treatments and had enough trips to the doctors to understand better what was going on inside of me it got somewhat easier. The predictability of the disease is what I find very difficult still. One can go into remission, but the fear of flares is always there. When they rise its miserable.

I take life day by day as a result and try to find some quality of life when I get good days. Good days do come, and I cherish them and they keep me going when times get rough, knowing that if I can tough it out that better will come. Hope is a powerful thing.
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