How to Cope With Frustration and Loneliness

[KristinaEli]

Hello all, I've always prided myself on accepting my Crohn's Disease and all of the accompanying symptoms. I've always been glad that I was the one made sick instead of someone else in my family. I think it would be so much harder to watch someone I love go through this than to actually go through it. I was diagnosed with Crohn's when I was 17 and have been on every oral medication under the sun, as well as Remicade, Cimzia, and Humira (current). Lately I've been in the worst flare up of my life, and the news I received from the colonoscopy I had today feels like the final kick to the gut.

My GI says this is the worst colonoscopy I have ever had in the five years he has been treating me, and that it is significantly worse than my diagnosing colonoscopy. He diagnosed me with Ulcerative Colitis as well, as I have a large amount of mucus throughout my entire GI tract. I attempted to research what having both Crohn's and UC means, what to expect, etc., and was met with multiple saying it is impossible to have both, which is frustrating in itself.

But the worst part wasn't hearing all of that. The worst part wasn't being prescribed a slew of new medications. It wasn't being told that I'll be taken off of Humira and switched to yet another medication of its kind. The worst part was being told that he doesn't think moving to New York (which I have been applying to colleges and looking for jobs and overall eagerly preparing for) isn't a good idea, and as my doctor he does not give his approval for me to leave his care. My mother immediately jumped on board. The small town I was going to move to is behind the times in medicine, and I would have to drive hours to NYC to get any updated medical attention, and a person in my condition.... It's all so infuriating!!

I had plans to move to New York once I graduated from high school, but then I was diagnosed. I've made the most of it since then, but March will be the five year anniversary of my diagnosis, and I have tried all of the risky drugs and gone through all of the tests and tried all of the diets and I'm somehow worse off for it. I'm almost twenty three. I see my friends traveling the world and going to amazing colleges and getting these great career opportunities and getting married and starting families, and I feel so robbed of all of it. I hate feeling sorry for myself, but I'm just so frustrated and lonely and exhausted. I don't know a single person who even remotely understands. My own mother admitted she thought I was exaggerating my symptoms until she saw my colonoscopy results today. And now she just keeps looking at me like she feels sorry for me. I hate all of it.

I just want it all to stop, you know? I don't want this to be my life. I thought when I signed all of those health risk waivers for Remicade that I was making sure this wouldn't be my life, but the sickness hasn't stopped and the medication just keeps coming. I don't know how to explain in words exactly how I feel right now, but I'm pretty sure most of you understand. I guess I just need a big old Chronie group hug right now. Ya, a group hug sounds really nice.

 

[ronroush7]

You have come to the right place. Start in the support section. I think there you can find a subsection for singles who have IBD. Sending support.

 

[woops!]

(Hug).... from me. I hate it when crohns controls my life! Was your move based on a college you wanted or the dream on living in NY? I wouldn't give up just yet. Is there any compromise? Could you work summers there, but do college near your GI? I'm not sure but will keep thinking.

 

[Sophabulous]

Big hugs!!

 

[GI Jane]

It's ok to be frustrated and scream it's not fair then come up with a plan. Create spreadsheets of the meds you've been on and their side effects. You're young you think you will remember but it starts to fade and changing doctors always brings those questions. Track what makes sense to you pain levels, medications, bowel movements or lack of it seems to help me to document it to make my doctors visits easier.

I moved a year or so ago to a small town versus Seattle and I tell you what I do miss being within quick access of my GI and Spinal Cord doctors. It is important to be near a hospital just in case....I hate being hours away.

It's hard for people to understand or know how hard it is and how much it hurts. Some think it weird but it is good your mom saw the pictures...hence when they ask if you're a visual learner and so on it helps others and even ourselves to see those images. I know this last December's colonoscopy pictures were ya bad and made me go.."hum guess there is a reason for all this pain".

I have a spinal cord injury too and people are like ya wheelchair or arm crutches...ya spinal injury.....rock back and forth in pain which cannot be seen and it's harder for others to understand. They think of food poisoning or such. I totally understand the upset of your mom looking at you and feeling sorry for you. You are young and strong and want to be seen like that type of person and it angers and hurts you to have pity. On the flip side though think of others who have no support system or person to have that level of care for them.

There are always periods of feeling well focus on those times. When you can get your nails done. Get a massage. Sit at the beach and watch the ocean or look for shells. Take picture in nature and focus on editing them. I find if I keep myself busy it helps.

I have two daughters your age so my heart goes out to you getting this so young. Stay strong and fight this battle.

 

[crohner000]

Wow, I relate to this so much. Sending you so many hugs and well wishes!

I hope you don't mind if I share some of my story here and that it's not too long, I just feel like we have a lot of similarities so I'm hoping you can relate too and it will be helpful in some way!

I'm also 23 and having the worst flare up since diagnosis (I was also 17). I have been having pretty iffy times for the past couple years trying to find the right treatment ever since developing antibodies to Remicade, but it got really bad this summer and I ended up being hospitalized and getting a scope all the way across the country from my regular doctor. I had been living in Chicago but when my boyfriend got a summer internship in Portland I decided to go with him (was not that sick at the time). I was on Entyvio infusions and I did a bunch of research before going and found a GI clinic to get my infusions while I was there. I'm so glad I ended up finding that place because it turned out I needed a lot more care than I thought I would and they turned out to be really great. Still, it was hard being away from my regular doctors and my family/general support system when I was really sick. The only person I knew in Portland was my boyfriend, and while he is helpful and caring, he also has his own stuff going on and one person can only do so much, you know? And being so sick was affecting my ability to work and make money to support myself which was part of my plan for being in Portland in the first place. I felt like a burden and was really struggling. As things progressed and I got worse and worse I ended up deciding to move back home to my parents' house in Michigan where I hadn't lived since before college. I've been back there since October and things are actually getting better for me now, but they definitely got worse first. When I got home I saw a new GI doctor who ordered a colonoscopy. During the colonoscopy prep I had to go to the ER because the rectal and anal pain I was having during prep was unbearable and I ended up needing fluids and pain meds to get through it. The doctor was pretty surprised by how bad my scope was too, he said I didn't seem as sick as I was and that I should make sure that I am doing my best to convey severity of the symptoms I am having because sometimes it's hard for people, even doctors, to understand how sick you can be on the inside while seeming normal on the outside, especially as a young person. But he basically told me there might be about a 50% chance of me not having a colon in 1 year! I definitely feel you on people not taking seriously how sick you are until they see those colonoscopy pictures...they were pretty ugly!! I do find that soo frustrating as I'm not the type of person to complain all the time... I like to try to live life as normally as possible and just deal with what I have to deal with but I guess that makes it seem like I am not sick, or that it has gone away when really it is an ongoing problem.
After the scope I was hospitalized for a week to get IV steroids and very slowly re-introduce regular foods. I've been on Prednisone since then (this was in November), but as of yesterday I am finally starting to taper off it it (yay)! I also started a new medication (Stelara). I am definitely not at 100% but things are definitely getting better, though I have no idea whether its the flare just happening to calm down a bit, the steroids, or the Stelara...

Now that I live at home, my life is a lot different. Thankfully I have supportive parents and living with them is comfortable but definitely comes with some downsides as I'm used to being more independent. It does come with upsides too though, like having groceries in the house and dinner made! I feel like being open with your friends about what you're going through is really important too, and trying to find things you can do together that work for you even when you're not feeling well. That's kind of the hardest part for me, is how to be social and do stuff with friends when I feel like I can't eat or drink anything normal, or don't have that much energy. I get tempted really easily to eat foods that bother me especially when I am with friends because I just want to feel normal and not think about my illness all the time, you know? But even something simple like sitting on the couch with a friend, eating a safe snack, and watching TV makes me feel less lonely. Being away from my boyfriend is really hard too, as as its now a long distance relationship since I moved home. I also miss my best friends in Chicago. I just try to stay in contact with people as much as possible, do what I can to enjoy my own company and focus on things that make me feel good. I feel like I was out living my life for so long and now it's on hold. But I am just trying to stay optimistic, focus on taking care of myself, healing, and saving money so that when I am feeling better I'll have options.

This reply is already so long but one more bit of advice is if you do have to put New York on hold for a while longer, that's really hard and I'm so sorry, but maybe you could try to find something else to look forward to that is more obtainable for where you're at right now. I don't know what you like to do, but for me things like a day/weekend trip, online shopping for something/someone special, starting a DIY project, making plans to go see movies by myself, or just like anything I can immerse myself in and get excited about really helps. Also getting organized with my finances, starting a budget, and things like that make me feel really positive and proactive even when I can't actually do much to change my situation.

Let yourself have down moments, because what you're dealing with is really difficult and it's totally normal to feel that way, but when you can you just have to find ways to pick yourself up and keep looking forward. You are strong and you can do it! We are here for you!

 

[MizzSarah]

I so feel you. I was quickly diagnosed right after highschool and I had all sorts of plans prior. I wanted to start schooling to get into counselling--I didn't have to move---but I was told by my doctor that I should consider a less stressful career. Then I get into teaching and now I'm starting to realize even that--3 years in--might not be a good suit either. So sick of having to change my life direction because of this disease. Now I don't know what I should do.. the disappointment of settling for something and then not being to meet those expections is a real head and heart ache.


I don't feel like I'm even living at this point. More so existing and my parents are really getting on my nerves about it.


I'm 23 too.