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dreamer06
Regular Member


Date Joined Jun 2008
Total Posts : 221
   Posted 4/8/2009 11:45 AM (GMT -7)   
I am begging to lose faith in myself.  I have had three surgeries in the past two weeks and spent 8 days in the hospital.  I have had abcesses and I take remicade.  Only the remicade shut down my immune system casing me to get an infection.  So I had to have surgery to remove the dead tissue.  I now am missing half of my right butt, a slight exageration, but there is a whole about the size of my fist.  It is really painfull, I can hardly sit, walk, lay down.  I now have uncontrolled D which means the dressings dont stay on and it gets into the wound, causing even more pain.  I try to shower it off but it only does so much.   I went in to the hopspital today for my dressing change and had a complete breakdown in front of the nurse.
 
I just want to give up.  I have all the support a person could have from family, friends, and even the doctors and nurses who all seem to know me at the hospital.  The only thing is I am living in London right now and all I want is to curl up on my moms couch have her make me a good meal and curl up with my dog.  Even if I could travel home, which I dont think I can, all the doctors who have been seeing me through this for the past couple of months are here.  Even if I go home my main doctors are where I go to school wich is in a different state and at least a 6 hour drive from my parents house. 
 
There is just a part of me that wants to give up.  I just seem to be getting worse then better. I might feel better for a day then something else happens.  I dont even have the strength to take the tube, so I have to pay for a cab, which is expensive to go anywhere. I know I cant give up but it is so hard.  I mean is life worth living when you sit alone in a dorm room by yourself watching reruns of tv on your computer.  Im not suicidle if that is the way this is coming across I just am losing faith in everything. I feels someone has it out for me and they are winning.

britt1449
Regular Member


Date Joined Apr 2009
Total Posts : 85
   Posted 4/8/2009 12:42 PM (GMT -7)   
I am sending you my thoughts and prayers... I'm so sorry you are having such an extrememly difficult time right now. Trust me, I understand the feelings you are having. After I had my daughter in '07, I was basically in the hospital for like a month, which meant I wasn't able to see her often, and the nights were awful by myself. I broke down a lot... in front of nurses and doctors, some of which didn't know what to say, others knew exactly what to say: that I had to keep going for my little girl and for my family. You have friends and family that care for you, so you have to fight this with whatever strength you have left. I was living in Cali at the time, and my family was in Indiana, so I can also relate to your feeling alone. Is it possible to have a friend or family member come to stay w/you for a while?? That will help you tremendously, if you can. Best wishes with your recovery! Don't give up... you will get better and heal soon, trust me!
Brittany
 
Currently taking: Humira 40mg/every other week, Zoloft 50 mg/day, vitamins and supplements
Have taken: Cyclosporine, Pentasa/Asacol, Aciphex, Imuran, Sulfasalizine, Cipro & Flagyl, Prednisone, various pain med's, Xanax
 
Surgeries: Appendectomy 2001, Ileocecotomy 2007


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 4/8/2009 3:51 PM (GMT -7)   
Hi I know when I had my abdominal abscess surgery it was hard for me and can understand how you must feel but things will heal it does take a little time.. what kind of dressing are you using it must be hard to keep it on .. life will get better I am now walking 3 km's on some days so just wanted to let you know things get better it takes some effort as you know ..sending some hugs and good thoughts your way.. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail
"Blessed are those that can give without remembering and recieve without forgetting ~Aurthor Unknown~


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 4/8/2009 5:09 PM (GMT -7)   
Could your mom come out and visit you until you get well enough to go home? I am sure your doctors in the state w/ your university could find you doctors in your home town to monitor your care. I can't imagine how hard this is for you. I'm just glad you are in a country that speaks your language!! (HUGS)
27 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night.  I take xanax prn for situational anxiety (aka no easy bathroom access). 


snohare
Veteran Member


Date Joined Oct 2004
Total Posts : 2088
   Posted 4/8/2009 6:13 PM (GMT -7)   
((hugs))
In London, and ill ? Well, that is hard. (And I'm not too sure Londoners really speak English, Fitzy ! eyes ) There are good hospitals there, and plenty of expertise, but when the homing instinct kicks in, home is just all you want, isn't it ?
IMHO, you should talk to the doctors where you are, ask them how difficult they think it would be for you to go home and be treated by docs at your folks' place. Would you need much in the way of costly medical procedures, or just simple changes of dressings and some prescriptions ? Maybe if you went to where you have your docs, and got someone from your family to come help, that would give you the emotional support you need.
yeah I know the sort of feelings you have. I really feel for you. Obstacles everywhere, no resources, and the world is whipping your ass. Sometimes the world is just too big to fight alone, and there is no-one better at nursing than your mum ! (Unless it is my mum. She is ace. wink Maybe I should send her to London.)

FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 4/8/2009 7:03 PM (GMT -7)   
Also, did you take out travel insurance before your trip? Some will help foot the bill to get you home in a medical emergency. This might count as one!
27 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night.  I take xanax prn for situational anxiety (aka no easy bathroom access). 


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 4/8/2009 7:18 PM (GMT -7)   
Oh Dreamer I am so sorry!! I certainly can relate to how you feel!! When I was so terribly sick with an huge per-rectal abscess and huge cellulitis, my relatives are hours away, and I live alone. My doctor was an idiot and I was getting sicker and sicker. I had to drive myself 30 minutes to the hospital with a 101 fever and an abscess that had turned black. I had to stand as best as I could the entire drive because there was no way I could sit at all. I finally got with a good doctor, who opened up the abscess and scraped it out. While I know this was exactly the right treatment, I very nearly fainted when I saw the ice-cream-sized whole. I finally got my relatives to come and they were horrified to see how bad off I was.

The bad news if this is going to take a lot of time to heal. But the really really really good news is that you are going to heal! You will get better and you will have a life again! Just that for now, for this time, you must get help, be patient, and heal. If relatives can come for two weeks at a time, that would be a big help. It really is just too tough to do this on your own. You probably need help covering basic needs and are probably very weak. If you were anything like I was, the thought of getting on a commerical airplane is unimaginable. Only a completely flat bed would have worked. I doubt they would have let me on a plane considering how sick I was. If you have connections to the miltary, they might be able to fly you home on a medical bed. Maybe call the US embassy to see if they can help make this happen?? Really, call them and tell them this is a serious medical issue (they can talk to your doctors). They are supposed to be there to help American citizens, so see what they have to offer. If you go home, you can see a surgeon at the local hospital. you won't have to go to your normal ones far away. You doctors in London can communicate all the new surgeon needs to know. I am sure they will be happy to do this considering your condition and circumstances.

I had D for a while because of all the stuff/drugs/antibiotics they give you in the hospital. Also just the stress of such a tramatic experience left me with D. Just make sure you keep on top of fluids. You need to be taking at least 3 - 4 sitzs baths a day. The butt-in-a-tub-of-hot-water-type of sitz bath. Do you have a tub?? Also, I strongly suggest you hire a plumber and get a hand-held sprayer installed. This will let you gently spray out the wound often and keep it really clean. Expensive but really really worth it. Another thought is to get sterile saline from the pharmacy (you may be able to get large quantities for cheap if your doctor prescribes it). Drench your bandages, packing, and guaze. The salt kills germies, and helps promote healing.

Please please call a relative and get help. You shouldn't do this alone. My prayers are really with you. Please keep in touch and let us know how you are doing!!
Diagnosed with rectal Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 4/8/2009 8:08 PM (GMT -7)   
I know Singapore Airlines keeps an area open on it's international planes for a medical bed passenger. I don't know if other international airlines do this. It might be worth looking into. I have no idea what they would charge for that though. I also think if you fly on a medical bed you have to be accompanied, possibly by a nurse. Again, I only know this because I have an intense fear of flying (that I am beating!!) and when I went to Singapore I read the entire airlines website about 100 times. I hope you find a way!
27 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night.  I take xanax prn for situational anxiety (aka no easy bathroom access). 


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 4/8/2009 8:25 PM (GMT -7)   
Sorry to keep posting: Here is what I was talking about:
http://www.flyingnurse.com/medicalescort.cfm

Also, like the website says many business and first class sections on commercial airlines turn into "sleepers" so you could lay down. You would probably just have to sit up for take off and landing, unless you got the "strecher service."
27 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night.  I take xanax prn for situational anxiety (aka no easy bathroom access). 


Trigirl
Veteran Member


Date Joined Jan 2006
Total Posts : 768
   Posted 4/8/2009 9:23 PM (GMT -7)   
My heart goes out to you. I can't imagine the frustration and pain. But keep breathing (Keeps to alive) and hopefully things get better. Prayers and hugs go out to you.

dreamer06
Regular Member


Date Joined Jun 2008
Total Posts : 221
   Posted 4/9/2009 8:12 AM (GMT -7)   
I really apprectiate all the advice and support. I really do want to go home but I have finals in a few weeks and even if I didn't I am not sure my doctors would apporove me of flying. Even though I have finals coming up I am wishing I didnt. I am so low right now that I just dont care about them, not to mention I am so tired all I can do is sleep and lay in bed right now. I cant make it to the hospital without breaking down in pain and exhaustion let alone the library to study. Maybe I should consider talking to someone at school and seeing if I can get it approved so I dont have to take my finals. it is just another stress with the hundreds of others I have at the moment that I dont need.

I looked at flights to see if I could go home and I was looking at first class because they have the more comfortable reclining seats, which I might actually be simi comfortable on for the 29 hours it would take me to get home with layovers. But they were 7000 dollars, can you believe it. Even if I could get out of taking my finals and get approval from my doctors I wouldnt be able to afford a ticket. How can anyone afford a ticket for that price in this economy. I guess its just another thing that is not going my way. Thank you though for all the support, I will keep you posted.

britt1449
Regular Member


Date Joined Apr 2009
Total Posts : 85
   Posted 4/9/2009 10:04 AM (GMT -7)   
I would definitely see about getting your finals postponed. I had to do the same thing for finals and final projects when I was really sick. The officials at my school were very understanding. There are policies in place for these types of emergencies, and you need your strength and focus to get well as opposed to studying and worrying about passing your classes. Good luck! Also, I would call the airlines about medical emergency situations. Call the embassies and the American Red Cross to see if they can help as well.
Brittany
 
Currently taking: Humira 40mg/every other week, Zoloft 50 mg/day, vitamins and supplements
Have taken: Cyclosporine, Pentasa/Asacol, Aciphex, Imuran, Sulfasalizine, Cipro & Flagyl, Prednisone, various pain med's, Xanax
 
Surgeries: Appendectomy 2001, Ileocecotomy 2007


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 4/9/2009 4:08 PM (GMT -7)   
Hi Do they have any nurses that make home visits to help you with the dressings ? Hope you got your exams postponed by now has your Dr. said how long before you can return to class ? Hope each day brings you closer to feeling stronger ...rest and sleeping is good for healing.. lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail
"Blessed are those that can give without remembering and recieve without forgetting ~Aurthor Unknown~


Wolfie40
Veteran Member


Date Joined Dec 2008
Total Posts : 947
   Posted 4/9/2009 5:44 PM (GMT -7)   
I'm wishing you all the best! Please don't let the disease beat you!
Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009

Medications: Asacol, Folic Acid, Multivitamin, Dbl. Calcium, Probiotics, Protonix, Monthly B-12 injections.

Living a Great life with my Wife and my two Chocolate Labs
Hunter & Hailey.
I love them dearly.


snohare
Veteran Member


Date Joined Oct 2004
Total Posts : 2088
   Posted 4/9/2009 6:27 PM (GMT -7)   
Sounds like this is one of those problems like a massive boulder on top of you, all you can do is chip away at it a bit at a time. idea Get the finals problem sorted out, and that will be just so much less weight to try to carry on your shoulders. If you really don't care that much about them (and who would, in your shoes ? eyes ) then you definitely shouldn't be sitting them ! You'll probably find that the people who usually deal with these sorts of conundrums will know the score because they have seen others in your sort of situation, and it will just be a case of sorting out the paperwork. yeah
Chin up, we are all on your side, you are not totally alone in all this, even if we are only there in spirit ! wink

dreamer06
Regular Member


Date Joined Jun 2008
Total Posts : 221
   Posted 4/10/2009 6:11 AM (GMT -7)   
Thank You for all of the advice I have really appreciated it. I havent sorted out my finals yet. They are not for two weeks and my mom says I should wait a week to see if I am feeling better. Even if my butt feels better I think it will take longer for a week for me to feel mentally better. I have been so tired and down for the past two days that I havent made it to the hopsital for a dressing change. Worries me yes and no. I know i should be going in to make sure that it is clean, especially since I havent taken a shower either. Can anyone say depressed, at least I can admit it. I am supposed to meet one of my surgeons tomorrow morning at 8 when he does his rounds to make sure that everything is going okay. I hope I make it. Considering I havent made it to two afternoon appointments to get a dressing change I think it is a long shot. But I will try. I talked to my mom last and she feels for me. I saw my dog over skype and in all honesty that is the one person I really want to see and hug. He is always there for you and doesnt judge you just lets his comfort spread over you like a blanket.

Sorry this was kinda a ramble, I just needed to talk and if anyone can relate to that its you guys. Thanks.

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 4/10/2009 7:17 AM (GMT -7)   
Sweetie, you cannot care for yourself right now (i.e. dressing changes and shower, are you eatting? I am very worried about you). That tells me that you need to have someone with you. In all honesty I doubt you will be able to finish your classes. You sound like your health is going to take a couple of months to get better. Plus how can you do finals if you are missing this much class, unless it is something you already know?

I would call or email your university back home ask them about student travel insurance. I know we are not allowed to travel without it.
See if you can get your ticket moved up from the last of the semester. Call the airline, explain the situation, and see if they can help you? Worse case situation you are at were you are right now...


If nothing else these are what I googled for home health care in London...
London, UK
A. Health Professionals Homecare - www.healthprofessionals.co.uk - +44 20 7201 1140 - More

B. Support and Assistance for People with Disabilities (SHAD) - www.shad.org.uk - +44 20 8675 6095 - More

C. Trinity Homecare Ltd - www.trinity-homecare.com - +44 20 8307 7662 - More

D. Home Instead Senior Care - www.homeinstead.co.uk - +44 20 8446 7044 - More

E. Choice Homecare Ltd - www.choicehomecare.co.uk - +44 20 8857 7717 - More

F. Sweettree Home Care Services - www.sweettree.co.uk - +44 20 76249944 - More

G. Lords Trade & DIY - www.lordsdiy.com - +44 20 7221 4756 - More

H. Aermid Home Health and Care - www.aermid.com - +44 20 8445 4442 - More

I. Elect Care Services Ltd - www.electcare.co.uk - +44 7956 227758 - More

J. Renaissance Personnel Ltd - www.renaissancepersonnel.co.uk - +44 844 848 1411 - More


Forum Co-moderator - Crohn's Disease:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…

Post Edited (MMMNAVY) : 4/10/2009 8:25:11 AM (GMT-6)


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 4/11/2009 4:29 AM (GMT -7)   
bump
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,hemmies,and still alive.lol gail
"Blessed are those that can give without remembering and recieve without forgetting ~Aurthor Unknown~


littlemissmuffet
Regular Member


Date Joined Feb 2009
Total Posts : 269
   Posted 4/12/2009 3:04 PM (GMT -7)   
Hi Dreamer

I so feel for you - you sound as if you are having a dreadful time. I hope one of your family can come over to support you. Im not sure your mum understands how bad you are if she thinks you will be well enough to sit exams in a couple of weeks. Have you been totally honest with her.

I live in the UK, so understand how the UK NHS system works. Are you registered with a doctors surgery in London? You should be able to get a nurse to visit you at home. I once broke my leg and couldnt drive. I wasnt asked to get a taxi or a lift the doctor simply sent a nurse to my house to take my weekly blood tests. My friend had a serious op to remove a tumour and had to have a wounds dressed 3 times a week, again the nurse came to her house.

You must be under incrediable stress and be feeling very lonely, please please push for some help or if you dont feel up to it then get a trusted friend to help you out.

Take care
Kerry


fongers06
Regular Member


Date Joined Jul 2008
Total Posts : 82
   Posted 4/13/2009 11:16 AM (GMT -7)   
Hang in there.  I am so sorry for what you are going through.  Even though you have a wonderful network of family and friends, it doesn't always make everything better.  I had a resection in November and while in the hospital still my husband was laid off work.  My family has been wonderful, but they are not the ones that have to deal with the pain and misery and aggervation every day.  I hope things get eaiser for you.  Just take it one day at a time.  That is all you can do.
 
Diagnosed with Crohns in May 08
Resection in November 08
Currently on no meds - waiting to see new doctor
Married, mother of 4

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