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    I was diagnosed with crohns and colitis in Feb. 2008.  My family is very understanding with everything that I have been through, but my husband comes from a family that is not close and so her just isn't very sympathetic and just doesn't understand what I am going through.  He thinks that I take way too many pills.  Well, I have been able to get off many of those now, but I was taking prednisone, asacol, pain pills and phenergan pills cause I was very sick to my stomach at times.  I now only take lexapro, pain pills as needed and a women's one a day.  I know that there is surely someone else out there that has a similar problem.  I now have an infuse-a-port and get remicade every 8 weeks.  That seems to be working very well.  I still have the joint pain alot.  Anyways if there is someone out there with the same or similar situation please reply and God Bless each and every one of you.                        

 Reply posted for jdpinkmom.

For me I have been lucky with family and friends, for the most part, but it is an ongoing process.

I was diagnosed when i was 16 years old, That was over 17 years ago. since then I have had 3 bowel resections, and multiple hospitalizations, medications and flares.

I have a husband of almost 14 years and 3 kids, 8, 12 and 14. My husband is very supportive of me when i get sick, he understands the vacations that are shortened by me feeling sick, Finds all the available bathrooms when we go somewhere, acts as the "food police", forces me to take medications that I know I need but make me too sleepy to take care of the house/kids, and picks up the slack when i feel icky. He is in the Army so he has a LOT of work stress as well, but he is wonderful.

But none of this came about immediately. It took time and a lot of communication.

I know not all spouses or "others" are like this, some just cut out at the first sign of trouble,

Some ignore the symptoms and pain, go into a sort of denial phase, others try to make llight of our symptoms and illness, some do "all the right things" but aren't there for emotional support. This can be frustrating and lonely and make you feel guilty, and even cause the symptoms to worsen. Don't let it!!!

You aren't choosing to be sick, you aren't choosing to be too tired to take your kids to the park, you aren't using the pain as an excuse to not go out, make love, ect... These are things that you can't control. Let the people around you know this, as LOUDLY as needed. Ask for their help in finding alternatives, Playing a board game instead of the park, a movie fest at home, a hot bath together, or cuddling...Ect... there are ways to have a meaningful life, it is just different.

The point though is ASK for what you need. Try to talk as openly as possible.  

I hope this helps

D.

 Reply posted for jdpinkmom.

Well for me its not a spouse but a boyfriend, last night actually my boyfriend told me that he can't handle me being sick anymore and my emotinal craziness (cause I've been having bad hallucinations that my doctors are blaming on the meds) and him and I have been together for a long time and he has been around since I was diganosed, but if he can't be supportive of me I don't know what to do. My parents are also struggling with this because they think that my doctors are now in over there head and just throwing medications at me, which really arn't doing a thing. It's really hard when no one truely understands. My family and my boyfriend talk about how hard it is for them that I have to deal with this, and it makes me laugh sometime cause its like think how I feel then! Chron's has changed everything in  my life in a matter of months and I'm not really sure how to deal with it anymore.

 Reply posted for jdpinkmom.

i hear you on this one. i am 31 years old, been married nearly nine years and been with my husband since i was 17 years old. we have two children together (ages five and two). you would think that after all those years together he would be the most supportive person on the face of the earth! but it seems the sicker i get the farther apart we get. i have many days where i am bedridden, days where i spend hours in the bathroom. the drugs and the disease itself cause major fatigue. and i also work outside the home and have two children to take care of! i am stressed out, tired, and i am sick most days. the past few years since my son was born have been the worst. i am getting sicker and sicker and having more flares and jave spent more days spent in bed. i can see how this is *** him as well. he doesn't have the wife that he thought he would have, his equal partner, helping with the household chores and the kids. but he isn't really sensitive to how i feel anymore. sometimes its like he doesn't even care, that he would rather be anywhere else but with me. he even gets mad at me for not wanting to be intimate with him and i feel like screaming "cant you see i am in pain!" i would trade anything in the world to not feel like this! i am missing out on so much! my marriage is suffering, my kids are suffering, i am suffering...it isn't fun! this disease just sucks. and i am so over it lately.

 Reply posted for jdpinkmom.

I totally understand the situation. I just broke up with my boyfriend because he did not understand my crohn disease situation. He was supportive in the beginning. We are supposed to move in this June but he totally backed out and told me that he has concern of my health. Also he told me that he could not go out  because I was sick. Then I thought this relationship won't work out and I said good bye to him. 

Breaking up with him was very upsetting for while to me but I am more optimistic now. I am 36 years old and I hope I can find someone who can support each other and live life together!  

 Reply posted for jdpinkmom.

My son was diagnoised with Crohns in 1998.  He was 18 then, he is 29 married and has a wonderful wife and two great children.  He had a resection about 7 years ago and did great until recently.  He has been in and out of the hospital  and er alot for the past several months.  I am worried he is getting addicted to pain killers.  How can I help him and get him off the narcotics?    I took him to the er sunday morning (2a.m.)  for pain, we got home at 8a.m.  He was back in the er at 8p.m. for more pain meds.  They gave him a prescription for 20 pills, he took 11 of them yesterday. They are very strong and addictive.  I am really worried about him.  He says we don't understand the pain and he's right I don't, but I know taking 11 narcotic pills in one day is not a good thing either.  HELP!!!!

 Reply posted for jdpinkmom.

I admit that I was one of those spouses that did not understand.  My husband had had UC for 15 years when we met, and I assumed that he had everything under control.  I did not understand that he was in constant pain.  I did not understand that he did not know what would start a flare-up.  I assumed that he simply did not take care of himself, and I would get angry at him for not feeling well. 

In fairness, my husband did not do much to educate me.  He didnt tell me when he was having a flare up or when he lost a lot of blood.  We never spoke about his medications except when the doctor was changing a prescription.  He was embarassed about his condition and about having to go to the bathroom frequently.  He put on a brave face, and I was left in the dark about how much he was suffering. 

My son was diagnosed with UC in November.  Being a good parent, I wanted to go educate myself about pediatric UC. I learned a lot about UC and felt like the worst wife ever.  I really had no idea what my husband was going through or how I could help him. 

I think my husband is a little annoyed now that I have done the research.  While Im a lot more attentive to his needs, Im also a lot more nosy about how hes doing and what can be done to improve his situation. 

It does take time to understand what you are going through.  My eyes were really opened when I learned that UC is an autoimmune disease and not simply a nervous stomach that can be controlled by the food you eat.  Your spouse may see your fatigue, but he may not see the blood or the pain.  I had to change bloody diapers and listen to my son scream on the toilet.  Those symptoms that I never saw before now hit me in the face. 

I hope this helps. 

Diane

 Reply posted for Bklyn04.

I would say that my husband understands the majority of the time; the biggest part that I struggle with is when I get down it brings him down when I need him to be my strength and support.

There are many times when he thinks I just give up and am not fighting hard enough. The part he doesn't understand is that when you're going to the bathroom 15 times a day the disease has won. When you're taking some 24 pills a day the disease has won! As much as I want to fight I don't have the energy to I'm in so much pain, fatigued, sleep deprived, and dehydrated that I do just want to give up for the time being.

Here I've thought this whole time that our sex life was an isolated issue; it brings me comfort to read that I'm not alone on this regular every 3 month dramatic arguement. I try so very hard for him because I know it's not all smiles and cute fluffy bunnies for him either. When you blow out a tire the whole damn car becomes immobile.

Thank you all for listening

 Reply posted for jdpinkmom.

I know exactly what you are going through!!!!! I am 34 years old and I have had Crohns for 18 years, my disease however was in remission until I got pregnant with my first child.....then I got really sick! I was taking Asacol, Bentyl, Lomotil, Prednisone, Zofran and sometimes a few others! I spent weeks at a time in the hospital and often came home with a Picc line to give myself IV meds at home. My husband disconnects from the whole thing, he says he is sympathetic but face it unless you are unable to eat and going to the bathroom 15 times a day and in constant  it is hard to understand. I try to put myself in his shoes and I know it can be hard for him at times but it us out of my control! I too have the joint pain and go for Remicade every 6 weeks and it seems to be helping. It is very stressful on a marriage and I understand everything you said, I wish I had some good advice but I am seeking some myself!

 Reply posted for jdpinkmom.

and just when you think its just you!!!!

i'm with hbourne on this - find an alternate support system - i had to since my husband can not get over my  depression, the inability to have sex due to pain and constant fatigue.( like i dont miss it too), the pharmaceutical cocktails, and giving 80% of my energy to dealing with a toddler ....unless people live this disease they dont get it at all. its life consuming!!!  i know talking one on one doesnt help and when u love them like we do its harder to take than the reaction from friends or coworkers, so maybe a session with your specialist or the nurse but open his eyes a little.  

 Reply posted for Hbourne.

Thank you...Actually, that really did help...I tried to get on disability, and the lady that called said that because I could work that I couldn't...Yes I can work, but on the website it states that you can still work...It would just have to be part-time...Well, the last 2 months I have been working part-time...Like this month I am only working 10 days...I get tired easy...Especially if I do a whole lot...I have to take alot of pain medicine...My lower stomach hurts most of the time...I am on remicade and that is helping but, I have only had 3 treatments...Anyway if you have a suggestion, please let me know...And thank you for your reply...I really like this website...It helps to know that there are other people out there with the same symptoms as you...It makes you feel so much better...God Bless...jdpinkmom...

 Reply posted for jdpinkmom.

Your story sounds so much like mine it was a little scary. I have been diagnosed with Crohns for about 13 years. I am currently in the middle/end? (I hope) of one of the worst flares I have ever had. Needless to say my boyfriend of 2+ years has never had to experience me being this "sick". I spent approx 3 weeks in the hospital this time and saw him for about an hour each day, and he feels like he's being supportiuve. Now that I am home I find myself alone the majority of day and some nights, almost like he will find any excuse not to be her. One day he actually went to the store 8 times in 4 hours .....wow. Anyway it makes me feel very alone. I have had a couple of recent trips to the ER as well because the pain became tooo great and the meds I have didn't even touch it. So you know the ER they do the usual run of the mill CT scan and find nothing "new" so he says things like well they said there is nothing wrong with you....GEEZ like I am making this stuff up. I am also on disability from my job due to all the meds, side effects, pain etc., and almost evryday he asks when do I think I might go vback to work.  One day I am hoping that he will just come home, give me a hug, ask how I am feeling and then tell me everything will be ok. Lucky for me I am looking for other ways to support myself emotionally with this, but I can't say it doesn't take it;s toll on the relationship. Anyway, I hope this helps you feel not so alone.

 Reply posted for jdpinkmom.

Hi,

I guess I can somewhat say that I am lucky in this aspect because Crohn's Disease has been what you might call a family affair.  My paternal grandmother suffered from CD for over 30, most of that time it didn't even had a name; then I was diagnosed in 1991; and then my younger cousin on the same side was diagnosed about 10 years ago. Not only has everyone been understanding but it was actually my parents who had to force me to go to the doctor, which lead to me being diagnosed with CD.

Everyone in my family, especially my spouse knows what I go throough when I am having a full on flare-up and are sympathetic to me needs, except for one callous uncle who thinks I am overweight just because I eat too much, and not because the loads of steroids bloat me.

 When I had surgery in 2000 my wife, who was starting a new job at the time stayed at the hospital all night until she was sure I had made it through. After I was discharged, my mom flew down to stay with us for a week while I recupperated, even though my dad had just gotten out of the hospital after having heart issues of his own.

I am sorry, but I can't imagine a spouse or any family member being unsupported of the another, especially with something that is so hard to suffer silently with.

 Reply posted for jdpinkmom.

i've read all the post on here and feel bad for each one of you.

i found out that i had crohn's when i was 22 and 2 months after i was married. when i started losing all the weight my mother became very upset. since i had moved when i got married my mother didn't see me as often and 4 months went by she came to visit and she just stared crying when i opened the door. i was down to 95 pds. my husband the macho army man acted like it was no big deal. my mother called my father(parents are divorced) and he came the next day and took me to the hospital, two days later i find out i have cd. my husband and his family were *** s. my whole entire family, aunts, uncles, cousins all came or called the hospital all worried. needless to say it never got better. he was mad all the time becasue i didn't feel like having sex, why would i not only did he not understand but he was a *** . i left the sob!

i remarried, to my bestfriend,the rock of me and the one that will rub my back all night if i'm sick. he is the best thing that has happened to me and you know what i do not have flares like i did before.

when you have this, you have to have a good support group.for those of you that think it's going to get better or they will understand, they won't, and stop beating yourself up trying to get them to.you know how you feel, you can only pray for the courage to get well and move on.

as far as my father he still has a hard time understanding. what this is, is to him i'm still daddy's little girl and this is something he can't make go away. he worries and wants me to get better so he believes me but doesn't like to talk about it or see me sick.

god bless and good luck to you all!

as for the lady that posted that her husband would not put her on his ins, just wait his day will come and he will have to answer for what he has put you thru.

 Reply posted for jdpinkmom.

 hey.  i'm new to this site so forgive me if i come across as being awkward.  i am just trying to reach out to others in the hope that i can talk to others about what  i am going through too.  i don't have the same problem you do, but my mom can be overbearing at times. if you want to contact me, you can e-mail me at wolfman712001@yahoo.com.  thanks,  david

 Reply posted for jdpinkmom.

I understand what you are dealing with so very much.  I re-married in 2006 and was sick on our honeymoon.  After which, things got terribly worse.  I spent 2007 in and out of the hospital.  Taking lots of medications and pain pills.  My husband and all my friends and family think I take too many pills as well. 

They don't understand why I can't seem to keep a job.  I am an accountant, however, I get a job and shortly after I loose the job because I miss too much work due to flare ups. 

My husband won't put me on his insurance so now I am without coverage and having to pay full price for doctors visits and medications, which is a drain financial since I am unable to keep a job.  My husband thinks I am just using it as an excuse and being weak minded.  He doesn't know what it's like to loose control of your bowels at work in front of everyone and go running out of the office and not want to go back and face anyone.

I do understand...I wish I could find away to make them understand.  I have purchased books, my doctors have talked with him and my family...to no avail.  Each time I have another flare up...everyone in my life gets angry with me.  I now have very few friends, when I used to have many.  Everyone treats me as if I am a "druggie" or like I have the plague.

I cry myself to sleep and pray everyday for it to just go away.  I have started a new medication called Lialda, which is working better than anything.  Only problem it doesn't help the inflammation in the rest of body like the Azulfadine (Sulfasalzine) did, so I still flare up just without the severe diahrea like before. 

I wish I could find a way to make them understand that this is NOT IN MY HEAD AND I AM NOT DOING THIS TOO MYSELF!

best wishes,
Alana Gladden

 Reply posted for Bklyn04.

Hi There,

I have UC and was in a very bad flare for the past 9 months.  I am on a round of Pred which has brought it under control and i am feeling MUCH better but i know what you both mean about your families not quite understanding.  I am lucky in the fact that my husband understands but my parents  just don't.  They see it as 'so you have to go to the bathroom a lot, so what?'.  If it were only that easy.  Who knows when you may have an 'accident' or will be in such pain that you are feeling sick to your stomach?  It is very hard like you both said to go through this on a daily basis.  I try to explain it to people when they ask 'know how you feel when you have a stomach bug?  Try having it every day.'  Sometimes it helps, sometimes it doesnt.  I agree with Anthony, it really helps to come to this site and talk to others going through it with you. 

Hang in there!

 Reply posted for jdpinkmom.

Hi I do understand, I have UC for over 7 years and my wife tries her best but at times she thinks I'm playing sick just not to go out and travel or go to the ciyt or movies etc. They say they understand but they really don't they don't know the day to day mental stress always feeling sick and always looking for a bathroom. This is why I just started to come to this site this week because I need to deal and talk to people like me because I look good at least i think so LOL that people don't think you are sick even when they live with you. I really need to talk so please e-mail me at AJC425@aol.com and maybe we can help each other. I only talk to 1 person that has chrons and it helps because you know they understand. i hope i helped you. Anthony