What to do

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jon

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what to do

Hey everyone my name is jon im am a 28 yrs old. I Have crohns for about 10 yrs. But got diagnosed 4 yrs ago. It started out wit bad stomach pains. Never went potty normal. It got to the point where I couldn't drive my towtruck no more so I went to the hospital. Found out I had crohns an had a absence the size of a greatfruit. They put a tube in me for a few weeks to drain it. So been goin down hill. I just recently was in the hosp in dec jan an feb. The doc is sayin I may need surgery. An I dnt know wut im am in for. Please help
 
Hi Jon,

I am new to this forum and I am probably not the one to give you advice since I have so many questions myself...but I know I was told I needed surgery and got a second and third opinion. Now I am on Azathrioprine and seem to be controlling the Chrons...and I am knocking on wood all over the place right now...but so far so good...I guess if I could give anyone any advice it would be to get more opinions, if possible, before doing anything drastic.
 
Hi Jon and :welcome:

I'm glad you found your way here 'cause you'll find loads of support and info! Sorry to hear that you are having tough time of late. :(

The need for surgery is dependent on many factors and the fact that you have an abscess may be leading to one of those reasons.......

Where is your Crohns and abscess located and what sort of surgery are they talking about?

Are you taking any medication?

As spingirl has suggested, it never hurts to get a second, third, fourth...............opinion, particularly if you have any doubts at all.

I hope you stick around and we can be of some help to you. Good luck!!!

Take care, :)
Dusty
 
Hey spingirl. I am on cimzia. Monthly shots. 1 in each side of stomach. Was doin good for awhile. But got this stomach bug that was goin around an wow did that rip threw my body. An. My intestines wound up closing. Was in hospital for a few days. Got home an it jus got wors. Been in pain for about 2 weeks now. One g.I doc says no surgery. An one says hey u prob need it. Now my last ct scan is showin my intestines is now kinked.
 
I had that four yrs ago. They drained it an it hasn't come bac thank god. Not sure. About the surgery yet this g I doc jus told me this am. He may wana do it. If its blocked or kinked he may wana remove it. But then he said ill b good for 10 yrs. But may also need anouther surgery. But I hear ppl nned a bag after that. Im 28 wit a 4 yr old daughter. Im not tryin to hav a bag. Worse part it im outa work 3 weeks an im a tow truck driver. So drivein 12 hrs days bouncing on a air ride seat suxx.
 
That sounds painful. Its just so crazy that two docs can have such different opinions. I got two GI opinions and two surgical opinions. Of course, split down the middle. I chose to wait and see...but I don't have a kink and I am not in a lot of pain. You are in NY so I would imagine you have good medical care. What does the "no surgery" doc suggest for the kink? I'm just curious. I know my docs all talked but they knew each other. My first GI did finally come around and agree with the second one...once they presented all the findings...but...its just so hard to know what the right thing to do is. I know if I have surgery - I will have a permenant bag so I am waiting as long as I can...but if I have to do it...I guess i won't have a choice at some point. Hang in there. I hope you have some meds that give you some relief.
 
Hi Jon and welcome to the forum! Sorry to hear you are suffering so much. Have you tried any other meds than the Cimzia?

If your intestine is kinked or twisted, surgery might be the best way to go to remove that portion that is giving you trouble. I know surgery sounds drastic, but for alot of people, it can really change your life for the better.

Good luck - hope you find some relief soon!

- Amy
 
Hey Jon,
Welcome to the forum. I got a bag about 11 months ago. I'm now living disease free and loving life - and doing and eating whatever I want. Of course, no one wants a bag, and just about everyone fears getting one. But the truth is, it's not bad after an adjustment period. It will let you live your life and drive your truck if you want to.

I hope you can avoid surgery, but if you need it, it may just let you enjoy life again.
 
Hey cd dad. I dono what's gonna happen. I hav been in pain the last 3 weeks. Went in hospital 3 times. Now im still got pain in stomach an my back. Back pain really hurts. Im on so much meds an not really eatin. I was hoping to get back to work tomorrow. But still in pain an dnt no why. Im eatin pain pills but dnt wana rely on them. An can't drive on them. Ima call the doc Monday an he will prob hav me go bac to the er. I really dnt wana but can't live like this anymore. I hav a 4 yr old an I can't do anything wit her. Im so stressed out. My girlfriend is stressed. I dono what else to do.
 
I'm so sorry jon. But I understand. I lived like that (minus the pain) for 2 years before my last surgery. I did not have pain, but I had diarrhea 20 times a day and no energy, no life. Could not even play with my 3 little ones.

Do you have a regular GI doc? You live near NYC so you may want to try the "big guns" over there. One I used is Dr Present affiliated with Mt Sinai. Of course, these guys don't take insurance, but if you're at the end of your rope, it's worth it.
 
I was like that too for yrss 20 30 times a day. An being on the road 12 hrs a day it sux goin in the woods. I hav a gi but I jus saw anouter one sat. My reg gi is all about the money I feel. An there's 3 doc in his office an they all say diff stuff. The ne gi says he has a great surgeon in mt sinai. Lol hopefully he is good. Ima prob go bac in hosp tomorrow. Can't keep eatin these percs. Pain pills. I no nothing about this surgery but I no my intestines is kinked an scared. There tryin not to do it but I may hav to. I hav been useing a heating pad for 3 weeks now. From my belly to my back. Jus can't do it anymore. Im on cimzia. Witch is monthly shots in my stomach. I started goin potty good an maby 2 times aday. I had this stomach bug that was goin around an cuz the shots shut my immune down the virus ripped threw my body an this is where im@
 
jon said:
I was like that too for yrss 20 30 times a day. An being on the road 12 hrs a day it sux goin in the woods. I hav a gi but I jus saw anouter one sat. My reg gi is all about the money I feel. An there's 3 doc in his office an they all say diff stuff. The ne gi says he has a great surgeon in mt sinai. Lol hopefully he is good. Ima prob go bac in hosp tomorrow. Can't keep eatin these percs. Pain pills. I no nothing about this surgery but I no my intestines is kinked an scared. There tryin not to do it but I may hav to. I hav been useing a heating pad for 3 weeks now. From my belly to my back. Jus can't do it anymore. Im on cimzia. Witch is monthly shots in my stomach. I started goin potty good an maby 2 times aday. I had this stomach bug that was goin around an cuz the shots shut my immune down the virus ripped threw my body an this is where im@
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Jeez. My sympathies man. I hope things work out for you. It sounds like you may have to take the leap and accept surgery, it sounds like things couldn't get too much worse for you as you are now.

As a kid I always thought a bag would be the worst possible thing to live with. I couldn't get my head around it. Then my father was terminally ill with bowel cancer and the bag was the least of his problems. It taught me that there are far worse things in life.
 
Hi Jon welcome :)

I am also on Long Island....Just out of curiosity which hospital do you go to? There are some that are far from perfect for helping this condition.

Like CDdad (Joe) mentioned there are a lot of specialists in the city. The one he mentioned I have heard of also. One of my past professors talked a lot about him when I told him of my difficulties. I currently got referred to a different one though who seems to be very empathetic and knowledgeable...Dr. Scherl who is also in the city. My GI in Roslyn referred me to her because he said that it would be better to go to a crohns specialist.
 
RUN away from that hospital. (no offense to them) but they are not a good hospital for this, especially the emergency room there :eek:


I would recommend St. Francis in Rosyln if you want to stay around Long Island. Depending on where you are they are not too far from the highway but well worth the drive even if you are coming from out east. If you want to stay more out East in Suffolk even Stony Brook (there is a well known doctor there Dr. Richards have not been to him but read about him in journals and the paper) would be better than Good Sam. ( I am glad you did not mention a few other even worse ones than Good Sam like their neighbors South Side though!
 
Hey. Im goin to mt sinai on monday to talk to them an see what they wana do. I will keep u guys posted
 
so my son was in Southside in bayshore and as Jennjenn stated that hospital sucks big time.. I had fights daily with them... I however had good results with GoodSam.. The staff were really pretty good, but the dr's are the ones that can make or break a hospital. my son was in the emergency room twice and we were treated well then also.. Maybe because my wife and I were there the whole time.. As a matter of fact the dr at GoodSam was the one who got my son into Mt. Sinai since he felt that was the best place for his operation (it was). If you do need an operation Dr. Edward Chin at MT. Sinai is freakin awesome!!!! Can't say enough good things about him.. BTW Crohns was discovered at Mt. Sinai... Hope things get better for you..

/joe
 
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Hi guys. I live here in Maine and I was diag with Crohns in 1998, 3 days before I was going to walk down the isle with my oldest daughter. I called it off becasue I thought I was dying. After three days on pred and a last min flight to NC and got it done. I had 3 surgeries in a row; a parcial removal of lg intest in 04, a five way bypass surg after heart attack in 05 and also found I was type 2 diabetic, In 06 they removed the last of my large intest and left me with a eleostomy. The good news, I have been symptom free sense 06. I thank God for a great Gastro Dr and a fantastic surgeon. I really feel blessed in spite of the surg I had to have. My Crohns distroyed my large colon. I was on High Doses of pred for 6 years because it was the only thing that came even close to shutting down my CD for a week or two every 6 weeks. For all the newbes with CD, hang in there and find what works best for you. You definately have to be proactive if you have Crohns. Determination and a good sense of humor also helps dealing with the symptoms. Good luck from Maine
 
Well im here at mt sinai. Been here since tue. I hav a infection that they wana get rid of b4 they cut me so I may b goin home Monday with a pic line to giv my self iv for 2 weeks. Then back here for surgery. I will keep u guys updated thanx all for the luv an support
 
Well, I'm glad to hear you are at a good hospital and finally getting what you need. Damn infections...they are never at a good time. I do think you are better off at home than in the hospital while they wait for it to clear up though. I hope you have someone at home that can help you. Good luck Jon...thinking about you.
 
Hey spingrl thanxx. Yea id rather be home to. Can't stand hospital. Hav no patients for them. U get diff storys from everyone lol. But im hangin in there. Hopein all gos well. Talk to u guys soon. O an I jus wana eat food haha lost ovr 20 lbs an haven't eatin in over 5. 6 weeks lol
 
Hi I am glad that they found out what it is and that they are going to help you get well. Depending on which gastro floor you are on there is one night nurse that I will never forget...Tatiana B. She was beyond caring and empathetic and stayed with me the whole night after my second surgery because I could not stop crying.

I hope that you start to feel well soon Jon :)
 
Hey jen. Im on the 9. Floor east wing. I got so many ppl commin in here I can't remember names lol. Yes I am feelin better prob goin home mon wit a pic line for a 2 weeks an then back for surgery.
 
I am glad that you are feeling a bit better :) Hopefully everything will continue to improve to get you all well again. Sorry you have to go through having a surgery in 2 weeks.
 
Well I haven't. Eatin food in ovr 5 weeks haven't wrked in 5 weeks. I jus wana feel better an get back on track. I hav a 4yr old daughter. So I sticks I can't do wut I wana do wit her or see her now that im here
 
Hi Jon,
I just want to send my good wishes. I had my 1st and last surgery at Mt Sinai. Really good place - Dr Bauer did my last surgery. Obviously a good job considering my current condition! Many other top surgeons there and I hope they fix you up!
 
Hi Jon - just wanted to pop in and say good luck. Hope you can get over the infection quickly and get things progressing with the surgery. Glad you are in a good place there at Mt. Sinai.

Keep us posted - you're in our thoughts!

- Amy
 
Well guys im goin in to mt sinai on fri 4 22. Finally havening my surgery. Been on iv meds for two weeks an now its time. Will prob b in there a week or so. Ill will let u guys no how it gos
 
Thanx man I hope so lol. Dnt know wut im in for but I shall see. Wondering how recoverys guna go.
 
Hi Jon - Good luck with the surgery! Are you having a resection? Or just removal of the abcess? Either way, you will feel tons better after you are recovered.

Just remember to take it easy after the surgery and don't push yourself too hard!

- Amy
 
yup, exactly what they did with my son in october... I assume they took out your Ileal valve also.. He's doing fine now and is on 6mp and pentasa... gained all is weight back.. he was in the hospital about 8 days total... Hope your feeling better.. Hang in there...

/joe
 
I hope that you are feeling a little better today. Each day that comes will hopefully get better. A good thing is to walk or try to do your best with also resting and taking it easy. I am glad though that your surgery went well :)
 
Omg I had the epadural in my back from fri up till about 11am. Now that im not numb the pain is killing me. Omg nvr felt this b4. Dono if I can get up now lol
 
it'll take a few days.. My son was getting pain med's thu the IV every 3-4 hrs... hang in there and just take it easy.. Make sure you pee alot also.. If they don't see the fluids that go in come out you ain't gonna like that either.. Don't ask me how I know.. ALso try not to laugh alot either as that's gonna hurt..

/joe
 
Yeah I had the pain meds through the IV also. Ask for a pain management team there they have them help you on request.
 
Things are gettin better. Got my staples out today. Still hurts a lil bit tho. An when will the runs end an the burning. Its gettin better but still burns an I dnt wana eat cuz I don't want the runs. How do I stop it lol the surgeon said it will stop. By wheeennnnnnnn hahahaha. Anyone else hav this happen. ? An what did u do to help the situation. ??
 
Hi

I am glad that things are getting better. Your body just went through trauma. Give it some time to heal. You cannot stop eating, and make sure to drink PLENTY of fluids. If you get somewhat dehydrated it can make the runs worse. Keep eating low fiber low residue diet and the rest will eventually and hopefully stop. Small meals throughout the day is usually best. I also was told to drink boosts and ensures after my surgeries. That might help.
 
Hey jenn. Thanx I hope it dose stop. I guss rice an mashpotatoes it is till it stops. Fun fun fun
 
Feeling good. Just can't take the runs anymore lol. The burning come an gos. But when it burnss. It burnssssss lol.
 
Well guys I had my surgery in april. Haven't been on in a while. After surgery they took 2 feet. I hav been haveing burningevery time I poop an feels like razors when I sit stand ect. Gave me two creams an didn't help so I had botox injections. An still haveing the burning razor pain but can't feel my self. Poop. Any one hav botox an went through this? Thanx guys hope all is well
 
I do feel bad that you are going through this. Now that I remember my great uncle had botox for a fistula a couple years ago (although he did not have crohns). It helped him for a little bit. I hope that you can heal up and be comfortable and in less pain.
 

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