Hi my name is jess and I'm new to this forum. I decided to join because well for the past hour I have found myself crying alone silently and the support of someone. Today i went to my GI surgeon and she told me that the last surgery i just had in october did not work and that i will need to have another more aggressive surgery to get rid of my fistula that is going from the right Bartholin's gland to my rectum. They had placed a seton in august 2012 and removed it and tried the glue?!? idk in october last year but that didnt work so now i need to actually be cut up. Again I'm not new to crohn's i have had it or well diagnosed since 12 so thats half of my life. Now the crohns had always giving me fistulas in my intestine and thats one thing but now the rectum is just too much to handle. Im a young woman and feel so uncomfortable with the situation that is going on. But thats besides the point i can put vanity aside the real issue that is affecting me is how afraid i have gotten of the mere thought of surgery i have had 6 in total and 4 of those 6 in the past 3 years. So i have been very sick. And that is affecting me, im always a very happy person but lately it has made me think what if i have one more surgery and then dont wake up, how much can my body take, or worse idk because i have been so sick lately i have been thinking what if all the meds im taking can lead to the big C. I really dont know what to do. And how to get out of this funk half the time i think my family thinks my pain is my head. Or that im making things up.So i cant talk to them about it. I know im just being nervous for no reason but still just need someone to talk to about all this.
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Newbie, Somewhat of my story. In a sad place need some advice and wise wisdom...
- Thread starter ohnoitsjess
- Start date
- Location
- London
Hi Jess,
Welcome to the forum. You will get mountains of support here.I don't know what I would have done without this forum. We laugh together, cry together, we're all going through this horrible disease.
People just don't understand, the worry and uncertainty that goes with this disease.
I cannot relate to you on the surgery front but I have acquired alot of the additional manifestations crohns can throw at you. I'm only 35 dealing with this crap.
At first my partner just couldn't get his head around the severity of the disease therefore I wasn't receiving the support I needed. That's when I found this forum.
your really going through alot right now, We're here for you.
Sending you a huge hug :ghug:
Steph x
Welcome to the forum. You will get mountains of support here.I don't know what I would have done without this forum. We laugh together, cry together, we're all going through this horrible disease.
People just don't understand, the worry and uncertainty that goes with this disease.
I cannot relate to you on the surgery front but I have acquired alot of the additional manifestations crohns can throw at you. I'm only 35 dealing with this crap.
At first my partner just couldn't get his head around the severity of the disease therefore I wasn't receiving the support I needed. That's when I found this forum.
your really going through alot right now, We're here for you.
Sending you a huge hug :ghug:
Steph x
Hello Jess and welcome glad you found the forum. Sorry you are having a difficult time sending :ghug: your way.
Thanks so much pink&green and steph_irish! I didnt think anyone would respond but yes thats the hardest thing that no one understands the worries and pressures that goes with this disease. And its also very difficult to be young and see other young people not having to deal with this. If i was older and got diagnosed with this i think maybe it would be easier but being young is hard. And yes i can see how a partner wouldnt understand and how that can be difficult bc then the fights start.
- Location
- London
I agree it changes lives especially when your young. I was 35 and recently diagnosed and I find that bad enough but I have to say when I hear of younger people having this disease, I reckon it's a raw deal.
You have had so so much to deal with, I can understand your uncertainty re failed surgery and now facing the prospect of more aggressive treatment.
Please feel free to contact any-time as I said we're here for you :ghug:
Vent away
You dont understand the joy and support i feel from just your kind words and also @kero it has been rough and really no one understands better then someone that is dealing with the same issue. Thats why i joined i figured who would understand more then those that go through the same or if not similar. And in case your wondering I always had issues with having stomach pains and also going to the bathroom when i was 11 it got much worse to the point where i was going to the ER every month complaining of pain and the doctors kept turning me away saying it was my menses coming. Finally when i turned 12 i got dehydrated and had to be taken again to the ER my mom decided to try another hospital. Thank god the doctor seen that i was in very bad shape and complaining of pain he said well her pain is the wrong side to be the appendix but i will open her regardless bc i dont understand the pain. When they did a fistula had burst in my intestine and thats why i was dehydrated hours of that passing and i was becoming septic. Well after that they diagnosed me with Crohn's. And have been on meds since.
Hello Jess of course you,ve got the blues it's only natural if your unwell at the moment,but it will get better,you need to talk to those nearest and dearest to you,it will help.
Have you spoken to your gi or clinic nurse about your surgery fears?if not please do so.
I,ve had 12/13 surgical procedures and believe it or not none for crohns long may that continue but it's always a scary prospect it's never minor if your on the receiving end,so you got to get fears put to rest speak to your doctors.all the best good luck
Have you spoken to your gi or clinic nurse about your surgery fears?if not please do so.
I,ve had 12/13 surgical procedures and believe it or not none for crohns long may that continue but it's always a scary prospect it's never minor if your on the receiving end,so you got to get fears put to rest speak to your doctors.all the best good luck
thanks axel i will talk to the nurse next visit! Or call her because the doctor said she wanted to give me two months of rest till we decide on what to do next.
Crohn's has been difficult for me to accept and I am an old lady now respectively speaking. Ahem. I am lucky. The disease didn't get aggresive until about ten years ago. That said, what you are feeling is very normal. You would be abnormal if you didn't feel that way. I wish I could put my arms around you and givw you a hug, because I have cried alone on many occasions. But! Now you have found us and you are no longer alone. (((Hugs)))
Thanks so much Louann honestly i was so sad after going to the doctor and when i was alone i had a cry fest and after a while i thought maybe i should look for a support group and when i put it in the search engine i found this and have felt better reading other peoples threads and knowing im not alone. I always think to myself it can be worse which is true but at the same time i feel so bad for those who do have it worse. But really thanks for the hug i can feel it from here!
I feel for you Jess, i'm 23 with Crohns and been dealing with everything that's been dropped on my plate by myself since I was diagnosed at 15.
Then one day it all becomes too much, and it feels like there's nothing you can do, I'm in the same slump.
But I started seeing a psychologist and little by little things are getting better.
I suggest you try one session, just one. It can't hurt.
You're not alone, stay positive!
Then one day it all becomes too much, and it feels like there's nothing you can do, I'm in the same slump.
But I started seeing a psychologist and little by little things are getting better.
I suggest you try one session, just one. It can't hurt.
You're not alone, stay positive!
- Location
- London
OMG so young and alot to deal with
thank goodness your mum brought you to a different hospital. It's one of those diseases that's so frustrating to deal with. I call it BESPOKE. we're all different, other diseases follow a certain pattern, but not us. Thats why so many of our symptoms are dismissed. My first GP was crap. New one worth his weight in gold.It's good to vent jess stops things building up. People outside the dreaded circle of crohns just don't understand..
for example I'm getting alot of other manifestations of crohns, at the moment its stiffness and arthritic like pain in my back and legs..
...so my partner looked at me quite seriously and asked..Can they not just take out your colon and fix everything? :awe:
What the heck?
Chin up hun and try to stay positive :ghug:
Welcome Jess! Aww.. I feel for you, to be going through so much pain and scary feelings. You young people always tug at my heartstrings.... you have a long life ahead of you- lots of things to do, people to meet, and joy to experience! Just hang on now through this if you can... take one day at a time! Sending hugs and prayers to you!
Glad you found the forum.Everyone here is patient and helpful.Lots of support and great information.You've been through so much in your young life.You have a lot to share.I truly hope your family comes around and realizes it's not all in your head.How can they say that!We are here for you,please don't forget that.Rant away,don't keep it in. :ghug:
(Im not sure how this works and how to address everyone bear with me. I mean if i post will you see it?)
@blaino yes i just set up an appointment to see someone. I don't understand why its affecting me considering I'm a veteran already. When you need to reach out you need to reach out. Today is 4 days after the MD told me and I'm feeling better.
@steph_irish I completely understand the arthritic like pain i had to enroll in a program nearby that you pay to get a massage a month. That was helpful. Maybe you shouls get a massage. I just read on one of these postings that if your having that pain that may mean theres inflammation going on in your colon. I get that also about your partner because my dad is always looking for some super drug that can take away everything but meanwhile every natural pill i take makes me more sick not good reaction. And then he says just take out your colon and get a plastic one... lol i mean i love him but he doesnt get the severity.
@ronroush7, @fozheart & @dave13 hey at least you guys can relate thanks for the words of encouragement. I really appreciate it I'm doing much better today with the fact that a surgery is around the corner then i was 4 days ago. My mother is probably the best and the worst... lol its hard to describe she is very compassionate and has been there 100% for anything i need but at the same time she doesnt get why im so tired and calls it laziness doesnt understand why i cant eat certain things and calls it me being picky so its a ying and yang. My younger brother is worse he will make fun of me then hug me... then cry... then plead with god... and then in the same breath when im in the hospital bed say "man i wish i could stay in the hospital! I have never been sick!" so its like he says is without knowing. But i mean everytime i stay in the hospital it was originally supposed to be for a week and then ends up being a month due to complications and maybe he thinks thats fun. IDK.
@blaino yes i just set up an appointment to see someone. I don't understand why its affecting me considering I'm a veteran already. When you need to reach out you need to reach out. Today is 4 days after the MD told me and I'm feeling better.
@steph_irish I completely understand the arthritic like pain i had to enroll in a program nearby that you pay to get a massage a month. That was helpful. Maybe you shouls get a massage. I just read on one of these postings that if your having that pain that may mean theres inflammation going on in your colon. I get that also about your partner because my dad is always looking for some super drug that can take away everything but meanwhile every natural pill i take makes me more sick not good reaction. And then he says just take out your colon and get a plastic one... lol i mean i love him but he doesnt get the severity.
@ronroush7, @fozheart & @dave13 hey at least you guys can relate thanks for the words of encouragement. I really appreciate it I'm doing much better today with the fact that a surgery is around the corner then i was 4 days ago. My mother is probably the best and the worst... lol its hard to describe she is very compassionate and has been there 100% for anything i need but at the same time she doesnt get why im so tired and calls it laziness doesnt understand why i cant eat certain things and calls it me being picky so its a ying and yang. My younger brother is worse he will make fun of me then hug me... then cry... then plead with god... and then in the same breath when im in the hospital bed say "man i wish i could stay in the hospital! I have never been sick!" so its like he says is without knowing. But i mean everytime i stay in the hospital it was originally supposed to be for a week and then ends up being a month due to complications and maybe he thinks thats fun. IDK.
Sorry that last one was so long but i wanted to address different things with different ppl
yea nancy i been reading the funny threads and there really good!
Hi Jess, This is MLits--
Just wanted to share these things:
1- you are not alone
2- you are not being fearful for "no good reason." You've got plenty of good reasons to be fearful. So it's okay to be afraid.
3- you won't stay afraid-- you'll go forward and make it and be okay-- even though this situation SUCKS.
4- Don't know how you'll feel about this, but I prayed for you just now. So young to have to go through so much!!
Just wanted to share these things:
1- you are not alone
2- you are not being fearful for "no good reason." You've got plenty of good reasons to be fearful. So it's okay to be afraid.
3- you won't stay afraid-- you'll go forward and make it and be okay-- even though this situation SUCKS.
4- Don't know how you'll feel about this, but I prayed for you just now. So young to have to go through so much!!
Dave yes but my humor is filled with sarcasm. and Mlits prayer is always needed thanks so much.
It is easy to be angry.I have my moments.I don't want to go through life angry.You can't deny yourself sad and angry feelings any more than you would happy feelings.I let myself feel sad or angry and try to move on.It takes minutes,hours,sometimes days-but I move on.
I'll get off my soapbox now.I feel humor helps you heal. :ylol: A good attitude is a discipline like a healthy diet.Easy to want,sometimes hard to achieve. :ghug:
I'll get off my soapbox now.I feel humor helps you heal. :ylol: A good attitude is a discipline like a healthy diet.Easy to want,sometimes hard to achieve. :ghug:
Hi Jess. So glad you found us. I was diagnosed about 18 months ago,and stumbled across this forum one night, sitting and crying alone. It has been a source of incredible support. We are all here for you, crying with you and supporting you every step of the way. Hope you fell better soon. Sending you big hugs.