Patients Crohn's disease
Topic of the discussion
Posted on 11/14/18 7:33 PM
I was just diagnosed with celiac and Crohn’s disease last month. I’ve been experiencing chronic symptoms for a few months before then. Since September I have missed over a month of work and I’ve only gone out with friends 3 times. My 22nd birthday was last month and I spent 75% of the weekend in the bathroom. That was before my diagnosis. I am now on a gluten free diet, taking Pentasa, Pepcid and a few other medications for my anxiety & bipolar depression. So my question is, how do you cope with missing out on everything? I’m at the point where I might lose my job due to how bad my symptoms are. I’m fine for a week then I get a flare up and have to call out again. I’m really lost and don’t know what to do at this point. I’m trying to stay positive but it seems there is no end and remission isn’t possible for me. Please help!
Beginning of the discussion - 11/15/18How to cope when you can’t go to work or go out with your friends? https://www.carenity.us/forum/crohns-disease/living-with-crohns-disease/how-to-cope-when-you-cant-go-to-work-or-go-out-594
Posted on 11/15/18 1:55 AM
Hi @Kristina_M sorry to hear about your diagnosis, but hope we can help you.
This condition definitelly has its downs, and attending social events and work is one of them BUT that does not mean you can't. I am lucky enough to be able to do my job remotely because my work was willing to work with me.
What type of work do you do? You are close to losing your job because you are calling out or other reasons?
I would recommend talking with your employer about your condition depending on the type of job (meaning is it a super corporate job where there are VERY strict rules or is it one that has more of a relationship with its workers) and letting them know of what is going on. See is it possible to work remote for some time to get your condition under control some more. Or is it possible to schedule breaks or work 4 days a week instead of 5? Or even part time remote or some weeks less hours?
Some people find that certain modifiations help.
What symptoms are the predominate reason of you missing work or not attending social events? Is it the bowel movements? or the pain? or the fatigue? or everything? Finding out that can help you better control it too and discuss it further with your doctor. I find this helped me a lot when it came to social events.
Take naps if you can also. Before, after work, I would take a nap when I got home before I did anything else that needed to be done or before I even would eat because I was so exhausted.
Finally realize that we will not be what we were before this condition and understand that there will be days that you just "need to get through," even if you are not as efficient/effective as you hoped. But the important thing is you are getting through it and showing up. Every day you finish at work, pat yourself on the back because YOU DID IT!
Posted on 11/15/18 8:25 AM
@cronky1! Hi! Thank you so much for your response.
I work in retail but I have a very specific role and when I’m not there, the job is not getting done. My job can be mentally and physically draining, even before my illnesses. I have great, open relationships with my managers but it is still a corporate environment when it comes to this. They have known full disclosure what’s been going on with me but there is only so much they can do without me hurting the business. I just filled out an accommodation form and my doctor has to fill out forms as well. If they approve it, I will have a leave of absence followed by “accommodations” such as shorter hours. If they don’t approve it, I’m not sure where that leaves me. I do not qualify for STD or FMLA because I’ve been working there for only 6 months.
The reason for missing work is mostly because mornings are TERRIBLE. Thats usually when I have explosive diarrhea. Sorry if it’s TMI. Then it’s followed by fever, cramps, shakes, aches, all the above. This isn’t every morning but I’m currently in a bad flare up. The mornings I don’t have that specifically I’ll still wake up with abdominal pain, bloating, migraines (probably dehydrated) and more. Sometimes the symptoms subside throughout the day OR worsen. I’ll miss work for 2 weeks, feel better, go back with shorter hours then a flare up will come again and it’s back to square one.
Similar reasons as to why I don’t go out with my friends. But also being celiac, and new to it, it’s depressing. I feel like a burden. I also don’t like not being near a private bathroom for the inevitable.
I am tired all the time. I have found though that sleep and rest does help immensely. I think a problem I have is when I feel better I try to go back to completely normal and i overwork myself. Then it happens again.
Sorry this is so long. Thank you for listening and relating!
Posted on 11/16/18 3:01 AM
@Kristina_M this will likely be a constant battle as there is no cure for IBD, so the best we can do is try to control our flares, learn our bodies, make adjustments to our life when we can, and most of all be open about it.
You are doing that and I commend you on you being open to your work. Hopefully they approve you and you are able to adjust your hours accordingly.
I know many people (not personally, but through forums, etc) that have changed their careers to have a remote job, even if the pay is less... however, do not succumb to this yet! I know of others that manage it.
I understand your frustration and know what you are going through... the younger you are the worse it probably is... not sure of your age, but we all deal with things and life differently as we age.
Focus on your sleep, your diet, and doing the best you can.
Posted on 11/16/18 5:29 AM
@wlkfree thank you so much for your input. I’ve definitely learned that stressing over all of this just makes my symptoms worse. I can find a new job when I feel better, it’d be worst case scenario, since I really do love my job and yes, it pays better than any other retail job but I’ll get over it. I really do need to focus on my heath and everything else comes after. I just have to find the right grove since it’s still so new. I’ve just turned 22 last month as all of this was going on. I was severely sick on my birthday and almost went to the hospital. Last month I thought my life was literally over but I’m not so melodramatic these days lol. How long did it take for you to control your flares or go into remission?
Posted on 11/20/18 6:07 AM
@Kristina_M you are so young, which must make it that much harder on you. I think anyone when they are diagnosed with a condition at y young age is harder to deal with than when someone is diagnosed at an older age because when you are young you are... well young ... and the saying is "you are too young to be going through all of this." I think that holds true and, so I am sorry you are strugglinh at such a young age.
It does get better over time - mentally, physically, and emotionally.
I am glad you really do enjoy your job and hope you are able to hold on to it. I am hopeful that you will and your job will approve your shorter hours and accommodations... keep me up dated on that.
Posted on 11/20/18 6:13 AM
@Kristina_M I still flucutate with flares and periods without symptoms, but it is progressively getting better and I hope one day to be in complete remission... in my words "cured" for what it can be.
My symptoms have drastically reduced since diagnosis: much less pain and near normal bowel movements, but my tissues are not healed and I still have still show markers of inflammation.
But with diet and making life-style changes you can to progressively continue to improve.
Posted on 1/18/19 3:04 AM
Hello members, this is a very interesting topic... one that you will likely find interest in and can share your experiences and advice.
Feel free to start sharing today below!
Posted on 1/18/19 5:56 AM
Learning to live with what you're going through is frustrating, no doubt about it... I've been there. I was diagnosed at 21. When my friends were bar-hopping and partying, I had to take about a year to get a handle on figuring out how I might be able to enjoy fresh fruits & vegetables again. The young woman I was madly in love with finally decided to abandon me, and it seemed like some of my best friends did also. Having to give up corn & lettuce, and feeling isolated, made me downright angry, and getting strong enough to get my life back was my first goal.
I was not about to let doctors tell me I could "never" have my favorite foods again, and I wanted to rebuild some sort of social life. I really felt like, ultimately, I couldn't trust anything or anyone but me. So I did my best to do my own research and trust my intuitions above all else. I don't know if that's the best course, but it mostly worked for me.
I posted my long story on this site; hope you can find some help from it. I wish you hope and peace as you come to terms with what your body needs. I developed a sort of stoicism about Crohn's; a refusal to believe I could not escape it, and a determination to at least be able to eat foods I wanted, when I craved them, in moderation. I would advise that when you find foods your system will tolerate, live on them, and supplement with a strong multivitamin if necessary to get the best nutritional balance possible. It might help to see eating as a matter of battling poor absorption, because things will flush through you too fast.
When I'm feeling down, I take comfort in the fact that no matter how bad it might seem, there are tons of people out there dealing with worse things. Life did get better as I learned to recognize my symptoms and how best to eat and drink my way through them. I worked from a belief that things would have a better chance to improve if I could just absorb enough nutrition to give my system a fighting chance to heal itself. I had the luxury of a mild to moderate case, as opposed to a severe one, and rejected the idea of having surgery as long as I could possibly avoid it, but recognized that it might be necessary at some point. In the beginning it seemed like my future was disintegrating, and I focused on healing myself with nutrition and a positive attitude, because I didn't believe any of the drugs really helped in the long term, and indeed seemed to hinder me from getting any better after a certain point. Recall though, all they really wanted to treat me with at first was Prednisone and Sulfasalizine. Both have some long-term use consequences I was not satisfied with.
Cannabis became my main crutch, MY choice of a "maintenance drug." I still believe it helped me more and I feared it less than the "maintenance" drugs doctors wanted me on. I've manged to have a good life, married, with kids & a good job, so again I feel lucky to have found a degree of "normal" whatever that means. Set goals and do whatever you must to help you reach them. Listen to your body, pay attention to what it wants, and learn to recognize it's signals; it's limits. I think a positive attitude means everything and that should be goal #1.
Frequent cannabis use relaxed my hyper-active, hyper-sensitive gut, and stabilized my appetite, which ranged from severe hunger pangs to no interest in food. It reduced bloating, cramps & inflammation and helped me to feel good. Call it an addiction, but it gave me a reason to be happy about getting up and having to feed myself. I had a routine I named PBTBOJ that worked, and just having a routine I think helps. PBTBOJ stands for peanut butter toast bongs and orange juice although technically the B should come first, ha ha. I had to learn to just live with the fatigue as best I could, but it was always an issue, and always had me concerned for my job as an industrial electrical systems design technician.
Eventually my condition progressed and I had to get back to mainstream treatment options. Part of my belief system was to avoid prescriptions that risked my liver & kidneys while young because I would probably have to have such things more as I got older. I played a waiting game with mainstream treatment - waiting for a drug I felt I could live with, that actually helped and didn't just "maintain." The year 2015 was the end of my wait.
Upon turning 50 in 2014 something changed in my system, and I experienced severe anxiety & moderate depression. I became unable to use MJ much or even at all for a time. A mild anti-depressant (Citalopram) helped, after I suffered for nearly a year, and then I was back to my normal PBTBOJ & 3-4x daily MJ. In late August 2015 I started getting Entyvio infusions, after the doc first tried me on Azathioprine, which I had an allergic reaction to, About 3 years later surgery became the best thing to do, because while Entyvio did a great job of healing a lot of my internal sores, I developed a stricture, which I think probably resulted from scar tissue. That surgery was last August; I'm nearly 55 now.
Today I don't have to deal with the fatigue, and now MJ can sometimes trigger "syncope" - fainting - so my routine is different now for the last several months. No longer carrying a load of gut-lesions constantly sapping my energy. Now I face a new challenge. I have different insurance, Entyvio isn't covered, and I'm not sure whether I'll be able to continue getting it.
Sorry this is way too long! I start getting lost in my own memories when I start sharing my experience. In conclusion all I can say is Life Goes On, do what you must to make it the best life you can. Worries and fears come and go, but hope is always around the corner.
Posted on 1/18/19 6:15 PM
@Userlevel6 thank you so so so much for sharing your story. I truly appreciate it especially because you were diagnosed at the same age as me and know what the struggle was like. I am sorry you ended up getting surgery but I am happy that you have a family and a good job. It makes me very hopeful.