HealingWell
Search Close Search
☰

not sure what to do

Support Forums
>
Crohn's Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 8/28/2011 2:27 AM (GMT 0)

Hi I was reading someones post about not wanting to be a burden on family and friends. I am having the same problem. When I wasn first sick ,y weight dropped to 83lbs and I couldn't walk or even get out of bed. that was 12 years ago. Ever since then I have never felt totally well but I have lost a lot of wieght again and my husbands having a fit. But he thinks there is nothing wrong with me because I can still get out of bed and move around. But everyday I still do not feel well and my kids and him are tired of hearing it. I have had new symptoms as of late like my joints hurt, my legs hurt besides my stomach hurting constantly. But he thinks because I don't look sick that I'm ok.

My mom had RA and fibromyalga and I am concerned that I have it too but when I bring it up to him he just says I'm crazy.

I'm sorry for venting out my problem with this but I was hoping someone else has or is going through the same thing as me and can give me some advice. I really don't have any friends at all because I can't go out and do things with them.

Thanks for reading.

Jenn

Posted 8/28/2011 5:01 AM (GMT 0)
hey Jenn- i often feel my wife's frustration and it kills me. i hate to say this but sometimes i wonder why she stays with me.
i feel like i hold her back sometimes- i know there are so many fun things she can do that i just can't a lot of times.
i rarely let anyone know how terrible i feel. i try to keep it to myself as much as possible bc i don't want anyone else to feel like i'm a burden...
but remember- your husband's there cause he loves you and you know what- everyone has something that will be a "burden" to those around you if that's the way you and they let it manifest itself. i think we all have the same thoughts as you when it comes to those around us. i didn't even tell my best friens about crohns in college- they just thought i was nuts bc of the way i did things or bailed on them at times...now i'm 37 and realize that's rediculous. i still don't tell eveyone, but i'm much more open about disclosing my crohn's- i guess if they feel like i'm a burden they'll leave and i'll know who my true friends are...i know that's kind of conflicting to what i said above but i think with my wife for instance whos around me hours every single day i try to hide a bit more bc i know she could become overwhelmed...i don't know
Posted 8/28/2011 6:51 AM (GMT 0)
Hi Jenn,
Sorry your husband is not supportive of you. I think you need to get in
to see your GI Doctor with your weight lose. Also have you seen a rheumy
doctor yet.

TBW
Posted 8/28/2011 6:55 AM (GMT 0)
So in 12 years of not feeling good, you never saw a doctor about it?

Well, I guess for most it is common to try and ignore it hoping it goes away. I think most of us are guilty of that.
Posted 8/28/2011 2:00 PM (GMT 0)
Hey Jenn,

I wanted to second Teddy's suggestion of seeing a Rheumatologist. Many of us with Crohns, also have fibromyalgia and/or some type of arthritis. Also I am wondering if you are treating your disease at all. If not, you need to remember that this is a chronic and incurable disease which should be treated at all times. So please get in with your GI. I think the meds would help you to get feeling better.

Hugs
Gail*Nanners*
Posted 8/28/2011 3:25 PM (GMT 0)
Hi Jenn,
Also wanted to mention to google the "invisible disabilities association" they have a short book you can order called "but you LOOK good" - it is a great book for family to read about what is helpful and supportive and what is unhelpful when a family member is battling a chronic illness and they look okay on the outside but feel so crappy.
Take care of yourself, we know how hard it is!
Posted 8/28/2011 3:44 PM (GMT 0)
Hi and welcome to HW.

This is a great place to come to for support, Jenn.

I encourage you to see a supportive doctor, too. If your CD is flaring, you'll need to confirm that and get on treatment quickly. Once you know the answer, perhaps you can bring your husband along so he'll hear firsthand what you're going through.

You mentioned your family is tired of hearing about your being unwell—I don't know how old your kids are but, if they're young, it could be overwhelming for them to see their mother being sick and hearing about it a lot too. Maybe you can reassure them that although you're not feeling well, you're still going to be okay.

You could also consider talking to a counsellor and continue with other people with CD (like us or any support group), which will ease some of the burden off your family.

Take care!
Posted 8/28/2011 4:23 PM (GMT 0)
I was at my worst in 2004-2006..I had no support system, and I felt so alone..I would lay in the bathroom floor every morning trying to decide whether I could go to work or not and spent my time in the bathroom or in bed alot of times..My family or my friends were not understanding..My doctor just kept giving me more medication that I seemed to react to..I had severe fatigue, bleeding, pain, joint pain, kidney stones, inflammation from my sinus cavity all the way into my small bowel..I could not eat anything except meal replacement shakes and baby food..I have my ups and downs now..I am staying home today because my bowels are misbehaving..I have had six trips to the bathroom already..My weight went up after I started taking predisone..I really need to go to the store but I am going to have to wait till things are more in control. I have been dealing with this for 7 years..I can't plan things because I never know how I am going to be..Switching jobs or fear of losing your health benefits can be scary!I was fine yesterday..Unless you are another CD sufferer, you have a hard time understanding all this. I found this board very helpful because I did not feel alone anymore going through all this..I realized there were people having it a lot worse..Can you imagine a pro athlete waking up flaring and having to go play or practice when he or she can't make it out of the bathroom? I did not go out in public or take extended trips for awhile because of ended up trapped in a public bathroom! I kept a change of clothes in the car! My husband is more understanding now that he has acquired health trouble of his own..My college age son who has CD did seek counseling to help him with this DD..I hppe this helps and realize you are not along with this DD.

Cindy
Posted 8/28/2011 11:26 PM (GMT 0)

Thank you all for your responses. I guess I need to explain a few things that i didn't in my first post. Before my resection I was on Remicade and then I got pregnant. I had a healthy baby girl. The same year I had my my resection. After that I have had flairs off and on but the last time I was on Remicade I had horible reactions and now my GI says I'm allergic to it. I actually went years without any CD meds. Last year I started to lose weight and knew I was starting to flair but was trying to ignore it. In december my mom past away suddenly and thats when I really started having problems. I did have my first colonoscopy in april.( don't ask me how I got away with not having one in the past) but it showed I was flairing up. My GI put me on Cimzia and I did the injections till it was time to do it every 4 weeks. The reason I stopped was because I can't stand how I feel after I take it. I can't function at all the day after and for at least a wee after. I am going to start taking them again because I have no o it ther choice.

My oldest son who is 20 just moved out and he was my biggest help. I think he is the only one that does understand what I am going through because he was here when I was so sick in 1999 and he took care of me while my husband was at work. My 11yr old daughter doesn't really understand and I have a 7yr old daughter who is developmentally delayed and she really doesn't understand at all and there is no way to make her understand. I also have a 17yr old who is a run away and that stresses me out a lot.

I have tried to explain to my hubby about my weight loss. I told him what the doc told me to tell him. That the inflamatory disease burns calories and even though I eat and eat it doesn't matter. My hubbys mom died from colon cancer in 1996 and I think he's worried that it will happen to me. But instead of sounding sympathetic he yells at me. Plus now that I'm having other problems like my joints and body hurting he doesn't understand. Also he doesn't really believe that depression and anxiety and panic disorders are actual diseases.

I would go to a counseler but our insurance does not cover mental health or mental health medication.

I think I am going to try to go see my moms RA doc and see if she can help me with the symptoms I am having. I really am going to have to start taking care of myself first or I won't be able to take care of my family like I should.

I am sorry for rambling on so much but I was trying to answer everyones post all at once.

Thank you all for your advice I really do appreciate it. I'm sorry if some of my spelling is wrong my 7yr old has been talking to me the whole time.

Jenn

 

Posted 8/29/2011 12:15 AM (GMT 0)
tsitodawg your right. I probably don't take it seriously and I am so scared of everything. After what all I went through bac in 1999 I really do think I try to ignore it and I now if I do it can get that bad again. But I wasn't on meds in between flairs because my GI didn't put me on any. After my last bout with the remicade he didn't put me on anything at all. I'm sorry that I sound so pathetic. My husband doesn't really like my GI doc I think he feels that he doesn't do enough for me and he's prbably half right because when I do go he does sometimes ignore some of the things I say. But I have been with this doc since the begining and I really hate change. But I am going to start on my Cimzia agin and give it another try I really don't think I have any other choice. Thank you for your advice.
Posted 8/29/2011 4:34 AM (GMT 0)
Jenn,
You are not pathetic - you are a very, very "normal" crohnie! - as tsitodawg said - almost all of us have left our disease for years and just carried on like we don't have it and then it rears it's ugly head with a vengance (me included!!!).
Furthermore, you are not only normal, you also sound like a woman who has an awfully full plate with not a lot of support - on top of grief, disease, parenthood, and insurance that won't support all of your illnesses. I can't imagine having a plate as full as yours!
Be gentle with yourself - find little moments of rest and joy - treat yourself like you would a friend going through a hard time.
Take care!
Posted 8/29/2011 2:19 PM (GMT 0)
Jen,.

I am another one who did much like you and tried to ignore that I had a chronic and incurable disease. Well my remission ended with emergency surgery and a very long time to get the disease back under control. Get back on your meds and stay on them. Also, sometimes we need to find new docs. Don't let this scare you, you might actually get proper treatment for once. Have you tried Imuran or 6mp? These are really good meds and could help to get things back under control. I also think you need to get on some steroids for a bit until the meds kick in.

Sure hope you get feeling better soon. Hugs!
Posted 8/30/2011 11:41 AM (GMT 0)
Jen...can't offer much more than the others have said other than welcome here for support. I do want you to double check you mental health coverage on your insurance. When the Federal Mental Health Parity act was initiated, many plans revised their coverage.
Please take care of yourself...it sounds as though you spend time taking care of others a lot. Keep writing us.
Posted 8/30/2011 1:36 PM (GMT 0)
Hi Jenn and welcome. I had some of the same issues with my husband not being supportive. Well, more like just ignoring what was going on with me as if it would go away. Then my last major flare he mentioned it to one of the guys on the job and it started a whole conversation about his daughter with CD. Since then he has talked to others at work (he's in construction and changes sites frequently) and has found so many others with issues or family with issues that his attitude has changed. Not saying your DH should do the same but maybe if he shared with someone he would be better able to accept what is going on with you.

Take care and lean on us all you need to .
✚ New Topic ✚ Reply