I am running out of life!

[Tuffy4u]

I am a 53 year old female, live alone in a new state not knowing just a few people. No car and no support groups for Crohns. I have had Crohns for 15 or 20 years and until 8 years ago, one medicine would put me in remission for a few years. Got in a very bad marriage,Crohns came back with a vengence. Now divorced and have been bleeding for  four years. I have been hospitalized 5 times. Remicaide Infusion worked great once. Several more tries with bad reactions so no more of that. Been on Asacol,Pentasa,Dipentum,Rowasa enemas , 6MP, Cipro, Flagyl and some others I cant remember right now. When nothing else would work I would go on mega doses of Steroids and the bleeding would slow way down but never stop. But last Feb.moved, new Doctors, like starting over. I had a General Practitioner for Thyroid, Heart, Arthritis, Bi Polar and some other stuff. I got a GI Doc for the Gerd and Crohns. So He put me on mega doses of Prednisone cause nothing else was working and I was so sick I thought I was dying.(felt like  I was dying during several flares) Meanwhile, Here I am in NC all alone and getting weirder and sicker than ever before. Kept going back to both dr.s telling them ,pleading and crying that something more than what I already had was going on and they finally figured out that the Prednisone had thrown me into Diabetes, In a matter of days my blood sugar was over 600 for around 3 weeks until I became Phycotic and was put into the phyic ward. They figured out immediately that  the Prednisone had put me into the Diabetes, I started to go blind and I was so nuts. what a mess. They stopped the prednisone,dealt with the blood sugar levels while I was in the Hospital. So, do I want to go back to those Dr.s? NO. Neither one would take a bit of responsibility for what they missed in my supposed treatments. I have a great Nurse Practicioner  that has been tremendous help but is at a loss as to how to combat the Crohns now which is getting worse every day. I bleed instead of poop, I get fat instead of skinny, I feel sick and tired and depressed and for the first time in all these years of continual fighting the good fight of this disease I give up. Now Bi Polar is out of whack and I have no more solutions??? So now I turn to the real experts, the ones who know and care and understand and have walked in my Shoes. You , all of you. I need a friend, I need a sign of hope or a new drug you may have heard of. I have tried all homeopathic avenues as well along with Juicing faithfully for two years. Nothing stops the bleeding. Thanks for even taking time to read about this wasted space of human disease.

[barb61]

i can't even imagine how you must feel, but i know it can get very intense; i've only been dx'd 3 years ago & i have it pretty easy so far. i met someone who's been through similar problems, & i know it can be discouraging. i can relate to the bleeding; it was the reason i sought medical help. by the way, i never lost weight; it i thought it was rare but i guess not everybody goes through that. i wanted to let you know that i used to beel a lot (toilet full, with clots),up to 4 times a day; i could even tell if i needed to bleed because it felt different. but after i got the colonoscopy & shortly thereafter the barium x-ray, the bleeding disappeared! i have no proof as to why; it couldn't have been the meds because it took a while before i got my results back, but i am convinced it was either the laxative i took for the colonoscopy, or the barium. i've had the occasional drop but nothing like this after that. when i got my first clnscpy, i had the monitor right in front of me & i could see a bunch of red spots everywhere so i know it wasn't just one big tear somewhere; it was an irritation that covered a large area & for some reason, it accumulated blood until it needed to be expulsed. i can't give you the best advice; i stopped taking my meds because i have no money for them, & i went back to drinking 2 coffees every morning & it has helped me a great deal! i know i'm not in remission because the infection is still there. i just hope i can hang in without complications. i feel very sad when i hear other people's stories, like my nephew who got dx'd 2 weeks after me & had 4 surgeries since. i wish someone could figure out better ways to treat this demon; it's so demoralizing because it's like living at the mercy of a monster! i cannot offer you any sound advice because i do the opposite of scientists tell us, but i ccan tell you i feel for you & i hope remission comes for you soon; it's gotta come soon. hang in there; that's all you can do, & keep searching for stories that might shed some light on a better treatment for you. From what i've seen so far, crohn's affects people in different ways, & sooner or later someone's gonna figure out exactly why it's linked to arthritis, fibro diabetes & whatever else, & they'll then figure out how to treat it with results! will try to send you a line once in a while; i rarely go on the net; discovered this site today. good luck, & please don't give up hoping; better days have got to come.

[Tuffy4u]

Hi Barb. I cant believe yesterday was my first time ever to go on the internet and talk and the same for you. Wow, it was meant to be. I feel a little better just knowing that you can relate to some of this ****. Sorry for the bad language but I hate this disease. I too like you feel so much compassion when I read these stories. I feel like my illness is nothing compared to some others. Yet, me and my friends and family think that I am so sick with this disease because we have nothing to measure it against. My big thing all these years is saying no to surgery. Crohns comes back some place else until you have no colon left and it works its way up down and around your system. I read about a 17 year old girl who had it from the outside of her bottom all the way thru her colon stomach throat mouth and she was writing because she had now started having it on her mouth and lips. My Lord My Lord,can you even imagine? I guess I need to count my blessings a lot more often. Thanks for dropping me a line. I hope you have continued good health. Isnt it crazy how different things are from one Crohnie to another? I get sick if I drink coffee and my body does well with all dairy. No two are alike. Well, have a nice weekend. I am getting ready to travel down to Florida to my elderly mother for a while. I dont leave my place hardly at all so this is kind of scary to me. I always end up sicker than ever when I travel. I need to know my boundaries and take care of myself. See ya later some time. Take Care

[dirtyblonde]

Try Humira, it was for RA, but approved in March for Crohn's. 2 shots a month, works great with very little side effects. expensive but drug company will work with you. You gotta try it.

[Laurie1984]

I started with Cimzia now (certolizumab pegol), i don't know if it's approved in the States, in Europe not yet, but you can get them in compationate use form....maybe it will help you....me myself, i've been through all the meds, nothing helped me, not remicade, not humira, not all the antibiotics, not the classical treatment, steroids, only when i take them in really high dose...cimzia is now my new and only hope....it's 2shots every month, and it helps really good....try it....

[vc7881]

I'm so sorry you are having such a difficult time.  I too don't lose weight when I flare.  I might have lived with this dreadful disease for almost 30 years before it was correctly diagnosed and only then because I developed a fistula to my bladder and had to have emergency surgery to fix.  Even the doctor at the time figured it was from diverticulitis instead of Crohn's.  Not until they opened me up and removed half of my large intestines did they find it was caused from Crohns.

My daughter has Crohn's and has had it since she was 12.  Almost 27 now.  Everytime she flared she would lose weight.  Not me.  Anyway after find the crohn's, having surgery, being put on Prednisone and 6-mp, I ended up back in the hospital in 3 months because I had bone marrow suppression from the 6-mp.  While there they discovered that I too developed steroid-induced diabetes.  One year later I'm still trying to control my diet and staying in remission.  I never had the bleeding issue. Just  the cramping and "d" several times a day.  I was told it was IBS.  

Well good luck and let us know how it is going.

[Deb82]

Tuffy:  PLEASE get Dr. Jordan Rubin's book, The Maker's Diet.  IT WORKS!!!!!!!!!!!!!  He was dying with Crohn's related illnesses and now is a doctor in Florida.  His book not only chronicles his challenge, but also details everything that springs us back to life.  It is about clean eating.  Check it out.  Best thoughts and wishes for a speedy recovery!!

[barb61]

hey, hope you're enjoying the weather; it's darn cold here, especially with arthritis! Wanted to mention something you might find interesting if you haven't heard of it yet. My sister was telling me about this guy who refused to get anything removed & was left with only 1 option & is getting it done now. Not sure of the exact term but it's about a stem cell. It sounds very dangerous but makes sense to me. They keep a stem cell, remove all immunity in your body (Chemo is involved), then put that healthy cell back & the crohn's is completely removed from your body.Then you build up a new immunity. Takes 1 1/2 year for full results, i think, & you'd be prone to infections for a long time, but i think that if it could work, it might be worth it for many. Something to keep in mind; i'm not sure how many people have had this done & if it's so new that the end results are not yet known. Will look it up when i get a chance. Take care, keep in touch.  

[spazz62]

My heart is with you.  I have had crohns for 10+ years which has been unmanageable for most of the 10 years.  After numerous surgeries, test and remicade infusions, they put me on "Imuran" (immune suppresent), it has been the only thing to keep the hospital visits fewer inbetween.  I also have osteopania from steroids and put on "lots" of weight!  I do go to counseling to try to keep my head together with it all.  Physically & Mentally draining, but we have to keep pushing forward and just being pushy for ourselves because no one, be it doctor, friend, whatever doesn't walk in our shoes and we have to fight like heck for "ourselves"...  Just got out of the hospital due to stones in the bile duct (which the gallbladder was removed a couple of years ago)   It never ends!  I know your new there, but try to find out as much as you can about the doctors around you, ask nurses, friends, neighbors...etc.. I've been lucky with opening my mouth and finding different names of doctors to research. We are our best advocates and we have to be heard to get help!  Keep pushing forward, it's all about you right now.  My wishes and prayers are with you, don't give up.  Ask questions about the lil camera now they have that we swallow and it takes pic's of the inside when a lot of other test fail.  If you don't like how a doc/nurse is not taking responsibility, write to their higher up, I've done it an I've got action from it too.  The most important thing is to remember "this is your life & YOUR right".. Do what you have to!  Good Luck

[lizziecee]

You may care to try methotrexate.....I have had Crohn's for 37 yrs, since I was 24 yrs. I have been on mtx for 7 yrs, with a 4 month break for FEC chemo for breast cancer, and I have not had a single relapse - no hospitalisations for rectal haemorrhages, no pain. Just got morning diarrhea, which usually goes within an hour if I take imodium (immodium) straight away.

Methotrexate is not licensed for Crohn's in England, where I live, as there are so few patients in England that the mnfrs declined to spend the money on the licence but it can be prescribed off licence by a Consultant Gastro. It is chemo, so not without side effects. I have monthly blood tests and although my red cells are macrobiotic, my gastro is not concerned unduly.

When I was dx with breast cancer I was on a huge dose of steroids and I got steroid induced psychosis and was nearly sectioned. It rarely happens, but when it does, it is frightening and the stats of steroid induced psychosis leading to suicide are some 13% in the USA.  I knew I was mentally out of control, but was not able to control it... difficult to explain unless you have had it.
Somehow I got through it and my husband, whom I treated dreadfully at that time, also came through the most difficult time of our lives. My gastro said the dx of cancer sent me over the edge, due to the steroids. He will not prescribe them anymore.

There are other very good drugs out there now, including the anti-tumour necrosis factor alpha ones - just do your research. Let me know if I can help further.
Take care all,Liz.