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Broken Faery
New Member


Date Joined Aug 2009
Total Posts : 7
   Posted 9/27/2009 1:23 PM (GMT -7)   
Hi guys, I posted on here a couple of months back I dk if you remember but I was feeling like nothing on earth with all sorts of horrible symptoms and had lost a significant amount of weight. I'd been with my man a year then and he seemed to be so commited to me when I last posted... about 7 weeks ago I told him my symptoms were so bad I thought I needed to go to stay in hospital (as I'd been ignoring the magnitude of what's going on just hoping I'd get better on my own). Two days later my man started making hurtful comments about my weight/appearence and provoked a nasty row where he seemed to just lose it with me and proceeded to end our relationship by text (when we live together) the very next day. He was VILE to me and I was distraught, it was total shock horror. I got so poorly my Dr admitted me to hospital on the grounds of malnutrition where I underwent every test and procedure under the sun to find out the cause of my flare. My man went on holiday!!! I was told I needed surgery to remove some strictures in my TI and had that surgery the very same week whilst he was away... I then became very poorly and over the course of 3 days became riddled with infection after the join in my bowel seperated (my surgeon says this happens only 1 in 100 cases, hmmm my planets must be lined up wrong ha?) I underwent another surgery to save my life 4 days after the first surgery and as a result have been a very poorly girl for the last month or so and have only just come home. I was fed on TPN for 2 weeks and am trying despeartely to build myself up now that I can eat again but my heart is broken. I know I shouldn't pine for him and he's not worth it but I've lost everything in the space of a few weeks, my home, the man I loved, my INSIDES... he went from the most loving man I'd ever met to the devil in the space of a day and has made no effort to explain what happened or why. All my stuff is in our flat (which he rented before i arrived so by rights he should stay there) which he is... and all I have now is a few family members spare rooms and sofa's to flit between until I'm well enough to go back to work, start saving and find a place of my own. I'm desperate to get my stuff out of his flat and have no where to store that much. People are being forced to take care of me now and I feel so awful that I haven't been able to go home and be surrounded by my things, to lay on my bed and cuddle up with the man who's looked after me all year. I'm living out of a bag... in a very fragile state (both emotionally and physically) and I'm having trouble coming to terms with all that has happened. I'm a grown woman who has been thrown into total disarray over the space of one weekend and as much as they love me and i love them i feel i'm living off my family's pity which i hate more than anything. I know it's not pity... but i'm a proud young woman and i feel utterly humiliated.

Now that i'm home he's text me to say he knows i won't believe him but i've been in his thoughts! My head is so messed up and i have a Dr's appointment tomorrow to discuss whether or not i should go back on meds now that the crohn's is gone and i have no idea what to do...? What do you guys think. Is there a chance i can go med free and be ok? Do crohns meds work to prevent it coming back? On top of all this i've given up smoking which is driving me nuts lol but i'm terrified of being this ill ever again.

I'm sorry if all this is a bit all over the place but my head is full of what to do and where to go next in between crying a lot and wishing somehow i could wake up and this all have been a dream! No such luck!

Thanks guys for letting me ramble on... sorry it's a long one x x x
Crohn's terminal ileum, 27 now (dx'd age 21), IBS, Anxiety/Depression, Anaemia


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 9/27/2009 4:01 PM (GMT -7)   
I can honestly feel where you are coming from I have been there literally hospital.hubby leaving ..telling my daughter the only father figure she has really known n loved he wasnt involved and look after things herself...right down to where I am having seizures can hardly be by myself although I am forcing ppl not to be hovering over me all the time lol..drives me baty...YES I was terribly sick in hospital for very long time and I did need my family to help but now I feel like I am a burden at times and I do not like that feeling.AS for my hubby he is the one who lost out imho when he walked out that door..I will not waste another tear nor moment thinking about what coulda been obviously it was not meant to be for us right .at least not for me ..If you cannot get past this I would suggesst you have nothing to do with him..it is only causing you more pai n sadness to which you will wind up more sick right......I am not trying to be harsh or rough on you at all but I personally think you can do better..I KNOW i can and I will carry on so will you hun so will you .......you must make sure you are healthy for you first and for your family thats my opinion...I hope I have helped somewhat ...Take care and hey .SMILE.It will be okay truly it will....LYN
 DX: Crohns,Pyoderma Gangrenosum,Anxiety/Panic,
Fibro & Other DD

Donate at  www.healingwell.com
 
                               Moderator@Alzheimer's..
              CO Moderator @ Anxiety and Panic........co Moderator Crohns
                            Keep The Fight Going..Or You Will Lose
               Look For The GOOD, Even At Your Lowest
  We Have Anxiety and Panic...................Anxiety and Panic DO NOT Have us         
   
                                     LYN


bella_sky
Regular Member


Date Joined Aug 2009
Total Posts : 90
   Posted 9/27/2009 5:03 PM (GMT -7)   
Oh hun! After all these months, I'm finally realizing that if someone in my family or group of friends were going thru all the stuff we are, I would be really hurt if they wouldnt let me help.. So we have to let them help, we would do the same for them!! I would love to keep in contact with you, we seem to be going thru a lot of similar stuff, just dont feel alone or alienated, there's always som1 here for you. - much love
dx w/CD finally in July 2009, currently taking pentasa, entocort, cipro, flagyl, probiotics, celexa, bentyl, biofeedback.
 
"It is not the strongest of the species that survives, nor the most intelligent that survives. It is the one that is the most adaptable to change" Charles Darwin


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 9/27/2009 7:13 PM (GMT -7)   
Reakky there is no better place for support n caring ppl than here...i am soo sorry you have gone thru so much too...take care plz n know we do care...lyn
 DX: Crohns,Pyoderma Gangrenosum,Anxiety/Panic,
Fibro & Other DD

Donate at  www.healingwell.com
 
                               Moderator@Alzheimer's..
              CO Moderator @ Anxiety and Panic........co Moderator Crohns
                            Keep The Fight Going..Or You Will Lose
               Look For The GOOD, Even At Your Lowest
  We Have Anxiety and Panic...................Anxiety and Panic DO NOT Have us         
   
                                     LYN


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 9/28/2009 6:47 AM (GMT -7)   
I am so sorry for all you have been thru recently. I am not making excuses by any means for your man, but could your downhill slide into serious illness have maybe scared him too much? Just a thought. I know some folks just can't handle it when someone they care about is sick. I am blessed with a great husband, but I would be just as lost as you if he left. Please do come here and vent all you need to. You are among friends here and we do care!

Hugs
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Sniper
Veteran Member


Date Joined Feb 2004
Total Posts : 6518
   Posted 9/28/2009 7:04 AM (GMT -7)   
I think you may need meds to keep it from coming back. You need to listen to your doctor. Hope he knows crohns well. As for the man, I use the word loosely, Us guys do stupid things from time to time, but when you turn on someone you say you love when they are ill, well , thats just sooooooooo wrong. Not all of us guys are that sad.
Hope you get better soon and ((((((((((HUGS))))))))))).
If we would read the secret history of our enemies,we would find in each mans life sorrow and suffering enough to disarm all hostility.


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 9/28/2009 8:10 AM (GMT -7)   
Oh on the med issue, I believe we should 100% be on maintainence meds at all times. I didn't go back on meds after my first resection and ended up having another 3 years later. Plus being unmedicated led to my first resection that was an emergency because of a complete obstruction. Sometimes you learn things the hard way, don't be like me.

Hugs
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

PV
Veteran Member


Date Joined May 2006
Total Posts : 1177
   Posted 9/28/2009 9:44 AM (GMT -7)   
My husband really had been completely healthy for the whole time we were dating, and after we got married. He had minor flare ups of ulcerative proctitis, nothing that really set him back at all. In fact, his GI said his disease was very very mild, and really he didn't expect that it would affect his life at all.

Then, last year, BAM! He was in the hospital with c-diff, and diagnosed with crohn's, and spent 45 days in the hospital, during which time, I watched him suffer, and lose 45 lbs, and go from a strong, healthy man, who was my safe harbour, to a man who was a shadow of his former self. We had to make the difficult decision to try remicade, which can have such horrible side effects, including lymphoma. We had to deal with the possibility that he had MS. I can tell you, I was soooo scared, and I felt like my life was turned upside down - all my hopes and dreams for our future erased before my eyes. And I can tell you that every day I was tempted to run away, because it was sooo hard for me to watch him suffer, and watch our future turn bleak. And this was after we'd been together for sooo many years. . .

I'm not trying to excuse your partner's behaviour . . . I am saying I can understand it. I chose not to act on my flight response - because I know, absolutely 100% know, that if our positions were reversed, my husband is a man who would never even have considered walking away from me for even a fraction of a second. Not only that, I realized the only reason the situation felt so bad to me, was because I love him so much. Also, I realized I could not live with myself, and lead any kind of meaningful life if I made the choice to leave my husband for no other reason other than he got sick. But I had numerous friends, and my mother to talk to, to help me sort my head out, to help me stick it out.

I am 31 years old - I expected more fun out of life, I did not expect to be have a husband with a serious chronic illness . . . it was all too much for me to handle, and even now, sometimes still is. I get over-wrought with worry, I get down and depressed, and I feel cheated sometimes . . . but in the end, I realize that life is what we make of it. Age and experience brings maturity and wisdom - hopefully both you and your partner will grow from this experience. But if he is simply happy running away from it, realize that it isn't your fault, and that he really is just an immature person, who refuses to deal with life's realities . . . we will all eventually suffer, and we will all eventually die . . . there really is no escaping it. If we can manage to forge meaningful relationships and love each other and have some fun along the way, that's the best we can hope for. I think men tend to be immature for longer than women (I know, generalization, but in my experience this has been true). If it does not work out with your partner, and you start dating again, don't rule out guys who are older - they tend to have more maturity to deal with issues. (((Hugs))) - this is a difficult time, but it is also an opportunity - if this guy can really be such an ass, you don't want him in your life anyway. And while the surgery is bad, now that it is done, once you heal up, you have a chance for a normal life when the crohn's is in remission, which will hopefully be for a very long time.

In terms of meds, please do take maintenance medication. It will give you a much better chance of a normal life. This is the time for you to be looking ahead - now that you have had the surgery, once you recover from it, if the crohn's stays away, you are looking at remission . . . and an opportunity to get back on your feet, and to find good friends, and good relationships.

PV
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, until Sep 2, 2009
Fighting c-diff, I guess for life


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 9/28/2009 6:37 PM (GMT -7)   
Ugh, reading p0osts like this break my heart and I'm so sorry for you guys that go through this, like dealing with the disease isn't enough.

Regarding the meds, most CDers are told by their GI's to stay on maintenance meds, especially if they are working at keeping symptoms at bay, with this disease you never know when it will rear it's ugly head and even sometimes while on maintenance meds it happens so if maintenance meds are doing the trick then stick with it.

I hope you find happiness and someone that will treat you with the respect you deserve (that goes for you as well Lyn).

:)
bee propolis caps 500mg one cap twice/day
omegas 369 caps one cap twice/day
probiotics 10 billion cfu once/day
vitamins C-calcium ascorbate (easy on the gut) and vitamin A each once/day
Prodiem fibre supplement one cap before bed
I've also altered my diet (no junky stuff at all, processed, fast-foods, refined sugars, ect) and exercise regularly.
I went from 30+ bloody BM's/day with lots of lower back pain to an average of 5/day no bleeding no back pain and completely formed stools, still have severe urgency issues.
~~~~~~~~My bum is broken....there's a big crack down the middle of it! LOL :)~~~~~~~~


Broken Faery
New Member


Date Joined Aug 2009
Total Posts : 7
   Posted 9/29/2009 8:08 AM (GMT -7)   
Thank you so much for your responces, i didn't realise how much it would help to hear from all of you :)

I agree that it probably all got too much for him, it's fair enough looking in but when you are the injured party it just feels like you've been abandoned at your most vunerable. It takes a lot for me to trust someone to love me with all this extra health worry because the rejection can re-inforce so many insecurities we already battle with day to day - it makes you feel that if the man you love can't love you then who the hell could? Clearly he had little understanding of the way the disease manifests itself emotionally and found it easier to run. I honestly think he wants me to be well, but i think he had a "fixing" nature nad because this fell beyond the realms of what he was capable of "fixing" he ran for the hills... i can't blame him really - i'm just sad he was so non-emotional about letting me go.

Bella_sky and Lyn, what a shame we have to go through so much all in one go, it's nice to know i'm not alone though it saddens me to think anyone has to go through similar to what i have in recent times. Lyn, my anxiety is like a raging animal inside me lol... trying desperately to escape! I hate anxiety though thankfully i haven't had a seizure. I do feel as though i couldn't be on my own though... how sad is that?!?

Thank you Sniper, nice to hear from a decent kinda chappy... i know there are good men out there, not to say mine was 100% bad just because he couldn't deal with me. I should say i know there are more suitable men for me out there.

Thank you Pb4, I had a good chat with my "new" GI yesterday, he's amazing and if anything i've found a bloomin good DR as a result of all this trauma who will be taking care of me from now on so that is a positive. He's happy for me to go med free for the time being (he wants me to put on a bit more weight before i make a final decision which way to go) as he said there is no data to "prove" maintenance meds actually help "prevent" the re-occurance of crohn's disease... it's just a safety net. I will try that road for now and lay of the ciggies and eat well. I don't want to pump any more into my body for now... but in a few months i will re-consider.

Thank you PV, you seem like a very strong woman, I think I would be like you... once i'm commited i'm commited - for the long haul! Life isn't all a bed of roses and i could never walk away from someone i loved if they were ill. I'm sure being ill has made me more inclined to feel that way though and he had never experinced anything like this so i guess had little understanding. Good on you though, for being on this forum and for your kind words. x

Thank you Nanners, you are right... whilst not excusing his behaviour, i can see it's hard. As for the meds, i've never been med free... and i am researching for now until my next visit in 6 weeks. I have taken what you said on board.

It's so nice to know I'm not alone as it feels very strange right now... i'm not so good at re-adjusting! I know eventually things won't feel so gloomy but just wish that day would hurry on along.

Bless you all, i wish you all good health and lashings of happiness,

Tamsyn x
Crohn's terminal ileum, 27 now (dx'd age 21), IBS, Anxiety/Depression, Anaemia

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