I don't know where else to turn

[GamerChick]

I have considered joining this forum before, but never really had the motivation to do so. Now I am grasping for any resource that I can find.

First, some history. I am a 21 year old female.
I was diagnosed with Crohn's Disease my Senior year of High School in November of 2009. My doctor put me on steroids and medications and all of that fun stuff, and it helped for a little while, but not enough to keep me from having to drop out right before graduating and, at the demands of school officials and parental figures, was forced to get my GED instead. I got my first job in April of 2010, however when I started working, my body seemed to shut down and I missed a lot of work. I was terminated after less than a month of employment. I decided to try my hand at college, as I began to feel better after a few months of unemployment. I missed a lot of school, but the professors were willing to work with me for the most part. I had to switch schools in January 2011 to a community college when the stress started to get to me. Once again my body started shutting down, though these professors were not nearly as understanding. I dropped out of college in May of 2011. A few months went by, I felt well enough to try working and landed a job in fast food in August 2011, which only lasted 3 days before they changed their mind about my employment, after they realized exactly what my health issues entailed. A few more months, and the cycle continued. I would feel better, and try to work and be productive, and my body would shut down. My doctor provided no explanations or solutions. Gamestop (October 2011-January 2012), Teleperformance-a call center (January 2012-April 2012), Workscape (August 2012- two weeks), Mcdonalds (November 2012-March 2013), Maximus (September 2013-October 2013, January 2014-Febuary 2014). In total, 8 jobs since I was diagnosed in late 2009.

My doctor cannot seem to find out what is wrong with me. They've done tests, and they have tried multiple medications, and then they tell me they don't know why I am only having one bowel movement a month, or why I am in such pain all the time, or why I am tired all the time. I would see another specialist, but he is the only one covered under my parents insurance.
They don't seem to care anymore, and they simply brush aside my concerns.

I've been fighting off suicidal thoughts as of late, and they are only getting stronger.

I am currently working for a call center called Maximus (this is my second time working there). I have been there since January 6th, and yet I am already flaring and finding myself unable to get out of bed in the morning from the amount of pain I am in. I will run myself into the ground, trying to make this job work. I don't know when or how to stop. I feel like a failure, like I have done nothing worthwhile in my life and that I will never be able to be successful. I am tired of being a burden to my loved ones, I am tired of being tired and hurting all the time. Logically, I know this is wrong... But deep down, I believe it to my core...

I have tried the special diets (which I still stick to), I have tried the vitamins and supplements, I have tried so many medications, I have tried so many things that I can't begin to list them all...

My family says I need to find work that I can do from home (I don't have a degree or any marketable skills to boast). Some say that I need to apply for disability (I have been denied 3 times). when I spoke to my specialist about this, their exact words were: "Well, we don't want to see a 21 year old on Social Security because that would just ruin your life". (Yeah, that actually happened.) I am up to my ears in medical debt and my credit is destroyed from being in collections, so school isnt even an option (even if I could make it to classes every day), as I would need loans.

I don't know what to do anymore, Community. Any advice is appreciated...

 

[valleysangel92]

Hello.

I'm so sorry to hear what you've been dealing with, it sounds like you've had a real tough ride.

Unfortunately, I am unfamiliar with the american health system, but i do know that there are schemes out there for people who are struggling and there are some low cost doctors that you might be able to see, although some say they dont always have the same insight. I'm going to tag Jennifer as she might be able to give you more advice on that front.

Are you being given any help with pain control? I know it doesnt solve the problem, but getting your pain under control while they work out what they should do next could really improve your quality of life.

As for how you are feeling emotionally, I can definitely relate there, I'm 21 too,and currently not working, before my crohns diagnosis, i was training as a nurse, and now ive been told no work and no uni for the foreseeable future. So i understand feeling useless, but you aren't, you are clearly fighting your hardest to have some form of normality in your life despite what you are going through, there are many others out there who would just use it as a reason to sit at home all day and pity themselves. Be proud that you are fighting this thing, but don't let your work life overtake your health, remember that there will be better times, and in those times you'll be able to work and be more independent, but for now, your health is important. As for being a burden on your family, there's a lovely post here that I think you should read http://www.crohnsforum.com/showthread.php?t=12000 . Go back to it whenever you feel like that. If your parents fuss or worry, its because they love you.

I'm on the UK equivalent of social security. Although its more common for people to recieve government benifits here, there is still a lot of stigma attached to it, but if you feel thats what you need, then fight for it, I think you can appeal decisions not to give it to you, and your PCP might be able to sign the forms for you if you have a good relationship with them.

I know its frustrating to feel stuck in a rutt, but we are all here, it will get better, you need time, and support, and you need to cut yourself a little slack, youve been through a lot, and you're still fighting, thats something to be proud of.

 

[krika]

Hi

I have been out of work because of crohns and pain for the last 6 years. I know how hard it is. I too wish to work, make a living and enjoying life, but it is still imposible. I have tried different jobs, but its just to painfull and I end up on the couch for days in pain.
I am still trying to find out what is best for me med wise, im currently on Imuran and vitamin d + calsium, and I am going back to a pain specialist, cause the gastro doc dosent get the pain problem.
Sometimes one need to take matters in to their own hands and do whats best for their own quality of life. The specialists only get so much and then you are on your own, atleast, thats my experience.
One thing that I have experienced, even though we are all different, is that taking it easy is key. Stress and pressure is making it worse. I know its hard, but I always come to the same conclution after trial and error.
Get your crohns in balance, then the pain, then the everyday life, then the social life and then work. Starting part time is not a bad idea, once you can live and function with that, and you see that you are doing well try increasing slowly.

Hope any of this helps

Best wishes

 

[dave13]

Hi GamerChick,as low as you seem right now you are still looking for options.That's great!You are still fighting and that is important.You are not a failure!You did not ask for what is happening to you,it wasn't a choice.It isn't your fault.You say you feel like a failure and a burden.I read your post and see a young women who is fighting the best way she knows how.I hope the forum can give you a little needed boost at these really low times.I am new to crohn's and I do get feeling overwhelmed at times,we all do.I found this forum in November during my stay at home after a resection.Everyone here has been supportive and the forum has great information.Keep the Faith!

 

[Jennifer]

Hi GamerChick and welcome to the forum!

I'm sorry to hear that you aren't doing well and for so long. There's always hope and options. Could you possibly list all the tests and medications you've done/tried? Also mention why you stopped the medications. Has your doctor done blood work to see if you're low or deficient in any vitamins or minerals (even being low can bring on symptoms of a deficiency)?

As for disability, I'd continue trying to get SSI, SSDI or both (it is possible to get both). Did you hire a lawyer when you applied or after you were denied? If you haven't worked with one yet then it would be good to have one so they can help you win your case. They only take a percentage of your winnings after you've won your case so it's definitely worth it. As for your doctor's comment about disability, don't even listen to that garbage. If he could help you get better then you wouldn't need to go on disability but until he can, go for it. If your last denial was recent then appeal right away. When filling out forms, only talk about your worst days possible. If you have any other health problems, including depression (you mentioned suicidal thoughts) add them to your case. Once you qualify for disability then you'll automatically qualify for Medicaid which is government run free health care which may help you find a new GI who can help you. Social Security has a lot of programs for people who are disabled which includes help with college so be sure to look into that once you're approved. Never give up and always appeal.

 

[GamerChick]

Thank you for all of the input and advice, everyone. I am going to look into finding a pain management doctor and see if they can help at all, as well as try to find a good lawyer in my area (Boise, ID) to help me with my claim. My last claim was in 2012 and failed because my doctor wouldn't support the claim. This time I have a list of every doctor and occurrence to add to it.

I have tried 4 different medications, though I cannot remember what the names of a lot of them were. The two that I was on for the longest were:
-Asacol HD (I felt like I was going to throw up all the time. I missed a days dosage because I couldnt afford the prescription, and it went away for that day.)
-Amitiza (The one I am currently taking, even though it is quite painful, at least it gets the bowels moving every other day instead of once a month)
-There was a huge blue bill that was getting lodged in my throat that I couldn't swallow.
-Linzess (Did absolutely nothing.)

Tests that I have had are as follows:
-Upper and lower GI (multiple over the years, they did take samples from my intestine)
-Blood work (Only done twice, the first time being when I was diagnosed)
-Pill cam (December 2012, this was done after they did a lower GI and said that they had found the Crohn's was active and not in remission. After this test, they came back to me and said that the pill cam did not find anything, but I was welcome to come into the office and talk to the doctor about the pain. :ybatty
-CT scans (multiple)

Thats all I can think of at the moment.

 

[Jennifer]

Other possible medications could have been 6MP/Mercaptopurine/Purinethol, Imuran/Azathioprine, Methotrexate, Remicade, Humira, Cimzia, Prednisone, Entocort/Budesonide, Mesalamine (Apriso, Canasa, Lialda, Pentasa and Asacol are all Mesalamine meds), Azulfidine/Sulfasalazine. Do you know where your inflammation is located (did tests show active disease in the rectum, colon, ileum etc)?

Linzess is for constipation and is generally prescribed for patients with IBS who mainly deal with constipation. Odd that you were on a couple meds to get things moving but not on meds that should help the Crohn's (Asacol and Pentasa are mainly meant for Ulcerative Colitis as they are topical but Crohn's causes inflammation deeper in the intestinal walls, they also treat the colon so if you're inflammation is in your ileum then they won't do much at all). That large blue pill you spoke of was likely Pentasa.

You've only had blood work done twice since 2009? I'm not happy about your GI. Seems that they really dropped the ball on your treatment and care. Do you have a general practitioner that you can go to? They can order blood work for you as well if your GI isn't willing. Have them test all of your vitamin and mineral levels, CBC, CRP, ESR and anything else that might be relevant.

Did your CT scan results ever show anything? Can you get the results of those and the results of the pill cam (since something was found even though you were told there was nothing)? Other possible tests you could have done are an MRI, MRE, small bowel follow through, and barium enema. I'm sure your tests probably showed something but for some reason your GI seemed to not be concerned or do much about the findings. If in fact all of these tests didn't show anything at all, you could have a double balloon enteroscopy done to find the source of your pain (this is a scope of the small bowel and can take biopsies of the small bowel as well).

 

[GamerChick]

I am not entirely sure. When they first diagnosed me, they told me it was at the are where the large and small intestine meet, but when they did tests afterward, they said that is not where it was.

They are starting me on a new type of steroid tomorrow, it starts with a B (I will have the full name tomorrow and I'll add it to this post), and they want me to take it with the Linzess. It feels like they are sugar coating it instead of figuring out what the source of the problem is.

I currently do not have a General Practitioner, as my insurance just dropped coverage for the one I was previously seeing. I had bloodwork done yesterday,a nd I asked them if they would test my vitamin levels and they told me no. The bloodwork paperwork says this:
"CBC with Diff."
"Comprehensive Metabolic Panel - (alanine aminotransferase,albumin, alkaline phosphatase, aspartate aminotransferase, total bilirubin, BUN, calcium, carbon dioxide, chloride, creatinine, glucose, potassium, total protein, sodium)"
"Erythrocyte Sedimentation Rate (ESR)"

On this paperwork it also says that the diagnosis is Crohns Colitis.

I might be able to get all of the test results from the doctors, though knowing them, they would fight me on it.

 

[valleysangel92]

Sorry I'm late coming back on this, I have to agree with Jennifer, your GI doesnt seem to be doing his job here. You have a number of other treatment options, and his lack of drive to get you onto one of them astounds me, as i'm sure you know, crohns isnt something to be taken lightly and it needs effective treatment.

Also you should be getting far more regular tests done,

Is there any way at all your family could switch insurance? It sounds like you really could do with finding another doctor who will help you with all this.

I think the steroid you're referring to is Buedesonide, it is also referred to as Entocort.

When asking for vitamin tests here, we have to ask the doctor who is ordering the bloods, the nurses that take the sample are not allowed to order bloods or add to the form that the doctor has filled out, it can get them into serious trouble, so that may be why you got a refusal.

Your doctor HAS to give you the test results, sometimes they charge a small fee for copying costs, but they have a legal obligation to give you the results if you request them.

Crohns colitis is usually Crohns that is located in the colon, as 'colitis' is a term for inflammation of the colon.

 

[GamerChick]

My GI is the one that I asked about the vitamin test, not the nurses at the hospital doing the bloodwork. The steroid is Budesonide (3mg, 3 capsules daily).
I am on my parents insurance, and since I have been unable to maintain employment, I cant afford insurance on my own, especially since my GI wont support a claim for disability/ssi or medicaid.

Thank you for your help everyone! I will be requesting my test results.

 

[Jmrogers4]

Hi GamerChick,
Sorry I'm late to this thread. I'm also in Boise and while I do not have Crohn's both my husband and my son do. I have to agree with everyone else on your GI, I know there are not many choices around here but do you see one of them in one of the GI groups around (i.e. Digestive Health, Idaho Gastroenterology Associates?) Maybe you could even switch to another GI within that practice.
My neighbor is a lawyer and while I don't believe she does disability but I'll ask her if she has any recommendations.
If you would like to PM me with any local GI questions/suggestions please do so. I'm happy to help. My husband has had Crohn's for over 20 years and my son has his 4 year crappiversary in a couple of weeks.
Does the doctors office have mychart available? You can sign up for it and your test results are available on it. You can also request lab results directly from the lab. My husband has his done at St. Al's and they will send you a copy of results if requested and my son has his done at St. Luke's and same thing.

 

[GamerChick]

Just wanted to give all of you an update. They finally put in the order to get my vitamin levels tested and turns out my B12 was in the 200s and my D3 was way low too. I've been on them now since the 26th and I am honestly starting to feel much better. I don't have the soreness in my body all the time as I previously did. Now, whether this is due to my no longer working (lack of stress) or because of the vitamins, I am not entirely sure.

But I do seem to be doing better. Thanks for all the help guys, I'll keep you updated.

 

[dave13]

That's good to hear! :smile:

 

[carrollco]

Wonderful!