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Jasoncode3

Joined
Jan 7, 2012
Messages
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Hi, I guess I am a newbie in the forum. I have been perusing it for a week or so and finally decided to put up a post. I was diagnosed with CD in march 11 after a long work up. By June I was prednisone depend and having a lot of pain and flares which are typically cramping, fever/chills, hip pain followed by vomitting and sometime D. Pretty typically I guess. Anyway, over the summer I had to keep increasing pred (which I hate because it makes me feel like a tweeker) and failed a bunch of useless meds like Mesalamine and entocort and am currently on Immuran. Anyway, long story short, I ended up in the hospital for a week with partial small bowel obstruction and micro perforations of my colon. They put me on IV steroids which really sent me to Crazytown, where I promptly elected myself mayor! Oh i forgot to mention I have had two doses of Remicade so far which i feel is actually working.

The biggest deal is that I have a stricture at my ileocecal jxn which I am having addressed with a Right Hemicollectomy next Wednesday. Laproscopic ig all goes as planned. Initially I was petrified of surgery but after reading so many of these threads I feel that I have made a good choice. Even though I am scared about pain and medical mistakes complications...

I think since my hospitalization I was in a bit of denial on how sick I was and now I am realizing the magnitude of this disease and the effects it has on all aspects of life. I finally have given my self permission to slow down a bit and not burn the candle at both ends in terms of work. I have also allowed my self time to rest and heal. I started back to therapy least night and am glad I did. This way hopefully there can be a new Mayor of Crazytown:thumright:

Anyway, thanks for listening I appreciate this forum a lot:)
 
:welcome: Jason! WE are a great bunch, because we are like you trying to find answers and support to our disease. Surgery sounds like it is in your best interest. I have had 2 resections, first one being laproscopic, I was alot younger at the time and bounced back fast. Stress will stop you from healing as fast so always look after yourself. I too just had a partial bowel obstruction and awaiting a colonscopy appt. I am avoidind a 3rd surgery, so I am being a good girl. Remicade has done wonderful for many, it helps alot of people when other meds fail. Prednisone sucks and best to avoid it (like me and on it now) but I will replace the bad sides with calcium, vitamin D3c and magnesium.

Glad you joined us, do you have a date set for the surgery? :hang:
 
I am having a Right Hemicolectomy. I have a stricture where the small intestine joins with the large causing a traffic jam if you will. I think it causes some loud intestinal noise ( in addition to pain and all the other crap). I am hoping that it will all resolve after my operation.

What are you having done, Gifted by adoption?
 
I sure hope it helps you :)
I am having colostomy, ileostomy ..... I have been sick all my life but the last 8 months its so bad I cant keep weight on I am 5/8 and 96 lbs :(
 
Is this your first surgery? It is mine. I guess I go 1 day after you. I was just reading your other post. Did the Dr say that you would have some improvement from your surgery and be able to gain weight? I hope so. Try not to be too scared and be sure to ask for pain meds before you think you need it. Stay on top of it and makesure you have an advocate with you in the hospital if you can. It can be a pretty strafe place, as you probably know. How old are u if u don't mind me asking?
 
Good luck with surgery. Take it easy! I have had a hard time making myself slow down also. I have a 1 year old little girl and work full time so it's hard to go hey dummy calm down! Haha. I have surgery in the morning for the first time ever. However mine is only a gall bladder removal. I'm still pretty nervous. I'm glad you found us! This forum helps me so much. Again, good luck! I sincerely hope things get better!!
 
I had surgery in 2009 (temp ileostomy) then reversal a few months later. I have felt great ever since. Not one single twinge of pain. I eat/drink anything I like. Don't be scared guys it will be the beginning of the rest of your life!!!
 
Hi Jason :bigwave: Good luck with the op, it sounds the same as what I had and I think my age (26) and not having any other additional medical problems really helped with my recovery which I felt went really well. If it helps I don't think the after op pain was anywhere near as bad as the pain of having the stricture. Are they going to be continuing with the Remicade as your crohns treatment after/during the op?
 
This is my 16th surgery but my 1st colon surgery. I will be 43 in May, how old are you?.... Mine wont be reversed though my stoma will stay :( will yours be reversed? But mine is not from Crohns. I have IBS and colonic inertia and cant go to the bathroom at all takes 30 days IF I go then. I am on remicade ( but for RA) it doesnt help my stomach pain at all I wish it did. I am not scared about the surgery as much as my husband seeing me with the bag :(
 
Hi Jason,

I hope all goes well for you.I had right side hemi over a decade ago.
That op saved my life as my bowel was perforated.
Like yourself i used to really push things at both ends of the clock and for a long time i worked too hard.

Having such a major op whilst a young man really changed my outlook on life.
I take one day at a time now and nothing really bothers me anymore - i've got my health, which is everything.

Don't push yourself too much whilst recovering - let mother nature take its course and in time you will feel sooo much better.

Good Luck Mate
 
Angrybird said:
Hi Jason :bigwave: Good luck with the op, it sounds the same as what I had and I think my age (26) and not having any other additional medical problems really helped with my recovery which I felt went really well. If it helps I don't think the after op pain was anywhere near as bad as the pain of having the stricture. Are they going to be continuing with the Remicade as your crohns treatment after/during the op?
Click to expand...

Yes I plan to continue Remicade, I hope. Wonder how long I will have to wait?
 
I would perhaps be on to you doc/IBD nurse about this before the op to make sure it doesn't get forgotten about whilst you are in for the op. They can then make sure it gets tied into your recovery so you don't have the potential of flaring.
 
Jasoncode3 said:
Yes I plan to continue Remicade, I hope. Wonder how long I will have to wait?
Click to expand...

You have to AT LEAST wait 2 weeks post OP but some docs want longer. I have no idea how long I will be with out. I was due my treatment this Thursday for my RA and I am all ready in so much pain :( but they said it will be until I am all healed.
 
I wanted to chime in and wish you a successful surgery day, Jason.

And you, too Lizz.

I really hope you both do well in the next couple weeks.

Good luck and please keep us posted! :hug:
 
Thanks so much to all of you. This place rocks. I am down to 10mt pred and feel way less anxious about everything. I appreciate all the support, and will keep you posted. Xxx j
Good luck Gabbismom, you'll do great.
 
Jasoncode3 said:
Thanks so much to all of you. This place rocks. I am down to 10mt pred and feel way less anxious about everything. I appreciate all the support, and will keep you posted. Xxx j
Good luck Gabbismom, you'll do great.
Click to expand...

:) is Gabbismom having surgery too?? I missed that good luck sweetie.

I am doing the prep right now sucks wont miss this stuff my 4th time for this :(
 
Hey Jason a few more days to go! Everthing will be ok.

Giftedby adoption...Good luck and keep us updated whenever you can!

Hugs to you both.
 
Hi Jason! Welcome :)

Good luck for tomorrow! I'm sure you're nervous...

I'm having an ileocecal resection in 2/23/2012 (going in the 22nd of February) and I'm nervous as hell already!

Let us know how your operation went!
 
Suvii said:
Hi Jason! Welcome :)

Good luck for tomorrow! I'm sure you're nervous...

I'm having an ileocecal resection in 2/23/2012 (going in the 22nd of February) and I'm nervous as hell already!

Let us know how your operation went!
Click to expand...

Thank you good luck on your surgery as well.
 
Suvii said:
Hi Jason! Welcome :)

Good luck for tomorrow! I'm sure you're nervous...

I'm having an ileocecal resection in 2/23/2012 (going in the 22nd of February) and I'm nervous as hell already!

Let us know how your operation went!
Click to expand...
Thanks so much, I will let you all know how it goes and try to post by Friday, or ASAP after that. NOT looking forward to the bowel prep and ensuing S-storm tomorrow :).
 
Jasoncode3 said:
Thanks so much, I will let you all know how it goes and try to post by Friday, or ASAP after that. NOT looking forward to the bowel prep and ensuing S-storm tomorrow :).
Click to expand...


I am having a LOT of nausea with this prep :( and the 1,000 mg of antibiotics every 2 hours is not helping.
Going to try and sleep now have to get up in 5 hours.
 
Hi Jason your story is so so simalar to mine last yr long story short got diagnosed in may had an abscess with perforation in June failed to heal with meds and had an ileocecal resection in nov. All went according to plan 5 week recovery and I yr on feel pretty good. I also burn the candle at both ends and am easily back on track. I so agree with Stratford about little things not phasing me now and am pretty chilled about things. Good luck surgery can really really help and wasn't as bad as I thought. Good luck and wishing you a very speedy recovery.
 
Yes, I had surgery this last Friday. Thank you, it went very well. :) Mine was minor, gall bladder removal. I was so scared though. First surgery.

Good luck! You're in my prayers!
 
Suvii said:
Hi Jason! Welcome :)

Good luck for tomorrow! I'm sure you're nervous...

I'm having an ileocecal resection in 2/23/2012 (going in the 22nd of February) and I'm nervous as hell already!

Let us know how your operation went!
Click to expand...

I will be getting my scope results that day so I will send healing thoughts to you!!:heart:
 
I suvived! I am hurting a lot from the gas etc. I have 2 drains but not stoma. I got up walked a little and peed on my own. Eating grape Popsicles. Pain sux :)
 
Yay!!! Your doing really well already :) Walking will help with the gas, are you allowed to eat anythng else? I was allowed to eat soft foods the day after my op.....
 
Angrybird said:
Yay!!! Your doing really well already :) Walking will help with the gas, are you allowed to eat anythng else? I was allowed to eat soft foods the day after my op.....
Click to expand...

Maybe tomorrow? I am not that hungry, I guess in addition to the stricture there was an abscess as well, no wonder I felt like crap for a year. Hope this does some good:)
 
Hey Jason
Well done! And no stoma!! Woo Hoo!! You'll be back to rights in no time.
From here on the only way is up :)
Take care
Hugs
Marie x
 
Thank you all! Well it's Friday and I am two days post op. I just asked them to get rid of the pain pump and am doing great just walked around outside and am drinking a soy latte! I am actually hungry, he has me on full liquids but I am ready for more...we'll see. I am so glad to have the surgery behind me, that was very nerve wracking to have to wait for. The worst part, which may come as not a surprise to most of you, was that they gave me massive doses of IV steroids in the OR, so needless to say when I came out of it I was EXTREMELY cranky with everyone for a few hours. Anyway, thanks again for all the support and encouragement. Hopefully home today or tomorrow. We shall see. :) bless all y'all.
 
Last edited:
That is fantastic :) Such a good sign that you are feeling hungry, surely they can perhaps let you have some mash or yoghurt, anything soft really? From what I have read won't the docs want you to have done a BM before letting you go home?
 
Hey Jason! Congratulations!

I'm glad it went well, and I say you had a right to be cranky.

I hope you continue to recover so well. :hug:
 
Well I got released yesterday afternoon and came home. Taking norco (lots) flagly, cipro....and20 of pred. Had on JP drained pulled prior to leaving and one comes out Monday. My bowels are working ok but it's hard to say since all the norco probably slows things down. I learned that you don't want a house full of family or friends when you are trying to recover, or at least I don't. I am a R N by profession and so not a good patient. I was telling my nurses and dr. When to wash and change their gloves. No infections so far though. I got good care overall, now to see if I can get off all these drugs and get rid of some stress. Has anyone heard from giftedbyadoption or gab ismom to see how they are doing?
Tanks again to all of u for your concern:) you and this forum have really helped!
 
:dance: Wahoo your home!!!!! Peace and quiet is definetly key when you get home, luckily my famly was considerate and didn't bombard me after my op. I hope things continue to go well and as always keep us updated :) Not heard from GBA, I hope everythng is alright there. I think gabismommy is doing ok......
 
Jasoncode3 said:
I am a R N by profession and so not a good patient. I was telling my nurses and dr. When to wash and change their gloves.
Click to expand...

Hi Jason, so glad you're doing well. Along those lines, but in the opposite direction, when I was in the hospital, the head of the GI dept told me he'd had a blockage the year before and once they got him on dilaudid he decided he was fine and took out his NG tube! so better to be the guy who remembers his med training than not :)

anyway, thanks to you and everyone sharing your experience, I'm getting tests done to try to figure out if I should get a resectioning and am reading as much as I can to try to prepare

hope you continue to heal!
 
Great to hear everything went well and you didn't have to stay at the hospital that long.

Hope you'll be having a quick and easy recovery. Happy thoughts! :hug: :tongue:
 
Hi, well I guess the biggest set back, and really only one so far is that I got amazingly depressed on Monday. Like sobbing-hot-mess depressed. I am off all pain meds nd today is my first day without Pred since June so I knowboth those things are contributing factors, plus coming to terms with chronic illness mortality and altered body image all F with your head. Anyway, I contacted my therapist who talked me down a lot yesterday and helped me with a plan of attack. I feel confident to move forward. The other challenge has been that I can tell this whole event has really taxed my partner. He is. Pretty edgy and tired, and I feel guilty for having to be so dependent. Anyway, physically I am doing well. Oh, today is my last day of flagyl!!! Hope it holds;-)
Suvi, I see you have a surgery date, will it be laproscopic? Are you on meds now? How are you feeling? I hope well! Do you have a thread re your surge that I could follow?
 
I know that feeling when I came off the steroids, I got the worst migrane and felt my muscles needed stretched constantly for about 2 weeks, but the mood soon returned to normal and everything else it just takes a while for your body to readjust and make its own cortisol. You'll get there!!
 
Depression...

Oh sorry to hear~I have been pretty depressed myself, between the meds, the dependency thing, the financial thing....and the list goes on. But what can we do???!! Just live in the moment! Because let's face it kids....thats all we have~~~especially when you have a chronic illness! Well gotta run and start drinking the prep for a colonoscopy tomorrow!! :poo: Have a great day everyone!!:thumleft:
 
So sorry to hear your feeling depressed! But I'm sure it's 100 % normal and most of us are thinking same stuff as you are. Hang in there and remember to talk to someone. :hug:

I understand what you mean with being so dependent. I'm sure though that your partner will understand. There are times in relationships when we are going through tough times and with IBD it's very understandible that not every day you can be happy as a hippo.

P.s. Finland is currently having a presidential election and one of our candidates is Green League candidate Pekka Haavisto, who is openly gay. This is a huge step for equality - something that's not new to Finland. Finland currently has a female president in office, Tarja Halonen. Anyway, Haavisto is getting my voice for sure! We might have a gay president soon, how cool is that! So pround to be finnish! ♥

Jasoncode3 said:
Suvi, I see you have a surgery date, will it be laproscopic? Are you on meds now? How are you feeling? I hope well! Do you have a thread re your surge that I could follow?
Click to expand...

Yes, it's planned to be laparoscopic but my surgeon said, that if needed, they will do an open surgery.

I'm eating 150 mg azathioprine now and citalopram for anxiety. That's it. I'm feeling quite good physically. I could do more exercise of course, but I try not to stress about it. I'm having some troubles sleeping, but guess it's part of the waiting and nervousness.

Here's my story, including some surgery stuff. I'm updating it always when I've got something to sayor some news.
 
Jason I updated my story if you want to read it ....
its a LOT so dont want to over load you page. I am still have a lot of issues and even have a drain in at home :(
 
Hi Jason

Depression is absolutely normal and soon passes. Concentrate on good stuff. I remember being moved to tears (of delight) when I managed to get myself downstairs without help! Also re your partner - he is terrified and facing the same issues as you by proxy. It will all work out fine. Be positive!
Hugs
Marie x
 
Thanks

mario said:
Hi Jason

Depression is absolutely normal and soon passes. Concentrate on good stuff. I remember being moved to tears (of delight) when I managed to get myself downstairs without help! Also re your partner - he is terrified and facing the same issues as you by proxy. It will all work out fine. Be positive!
Hugs
Marie x
Click to expand...
Thanks so much for the encouragement. I have been getting better day by day...by day. Feel stronger and less anxious today :) I think I need a vacation ...
 
I didn't have to get an NG tube with my surgery, maybe you wont either. I am doing really well in terms of my bowels,digestion and eating. My surgery was 1/18. I can eat pretty much what ever I want and don;t have any inflammation or bloating or pain. I am totally off prednisone which is AWESOME!!!!. I only took opiate pain meds for 3 days then switched to Tylenol. I feel like the old me. (not too old though). I am exercising and taking steps to reduce the amount of stress in my life (going to work part-time rather than 50-60 hours per week).

There is a mass to left of my right hip bone which could be a fluid collection, abscess, or old inflammation, or blood. I go in Monday to have it biopsied and then go from there. It was there before surgery and went away for about a week then came back. We shall see what it is and kick its ass accordingly.

Overall, I am doing really well and complications do happen with sugery but can almost always be overcome. I am so glad to hae a break from the abd pain swelling and fevers and obstruction. This is great. You will do great too, Suvii:)
 

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