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10-25-2017, 10:35 PM   #1
Firetrux745
 
Join Date: Oct 2017
Location: Orange County, New York
Introduction

Good evening everyone. My name is Connor, I'm 25 and recently diagnosed with crohns. I actually just got discharged from the hospital last night, where I have been since the 10th due to a perforated small intestine and an emergency resection. Surgery went well, I now have a ileostomy which isn't the end of the world and is hopefully reversable. I am new to the forum and looking for any and all advice to living with this and managing this disease.
Has anyone had this reversed with good results?

Thank you all in advance,
Connor
10-26-2017, 12:42 AM   #2
crohns4ever
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Join Date: Oct 2013
Location: Sylva, North Carolina

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Hi connor,
Welcome to the form, I had a major restriction surgery back in 1998. Three feet of my large intestine removed do to crohns, I have been in good shape since, off and on little flare ups but nothing like I was having back in the day. I didn't have a collection bag but they are some awsome people on here that has them so they can give you some insight on that. But you should feel a hell a lot better when you heal. Life will be good ounce again. Oh one last thing shortly after I got back on my feet I started taking remicade to keep crohns in some what remission.
__________________
Diagnosed: With crohns July 4th 1999
Current Meds: 6MP 100mg a day, Remicade every 3 weeks
Surgery: Had 3 1/2 feet of colon removed due to very active crohns on july 4th 2000:
10-26-2017, 04:05 AM   #3
valleysangel92
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Join Date: Dec 2012
Location: United Kingdom

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Hello, welcome to the forum

I'm sorry you've needed emergency surgery, but I'm glad you're healing well and you seem to have a good attitude which will really help you in the long run.

I personally had a resection a few years ago, but I didn't have a stoma so I can't give specific advice about that. I do however know that there are many people on here and in general who have gone on to have reversal surgery successfully and with few long term issues.

Generally, make sure you get plenty of rest, your body has been through a lot in the past few weeks so don't be surprised if you get a couple of set backs or you find it takes a long time to get back on your feet. Try to keep your fluids up as its easier to dehydrate with Crohns and especially with a stoma, but be careful not to drink too much plain water adding juice or drinking electrolyte drinks can help.

In terms of food, some people with stomas find they can't eat particular foods, especially those high in fibre, but others find that they can eat almost anything, so it could be a bit of trial and error to work out what suits you, but initially its probably best to try and stay away from nuts, seeds, sweetcorn, popcorn, mushrooms and other high fibre foods.

Have you been given an appointment for follow up with your surgeon and/or a GI? You will need to have careful monitoring to ensure that you're healing properly and to check that your Crohns remains controlled, most doctors recommend starting a medication after surgery in order to try and prevent a relapse, but this is dependant on the individual. You should also have blood tests on a regular basis to monitor your inflammation levels and to check for vitamin and mineral deficiencies as people who have Crohns can struggle to absorb food, especially those who have had some bowel removed. In particular, depending on which area of bowel has been removed you may be at risk of B12 deficiency, iron deficiency and calcium deficiency, these can all be rectified with supplemenets, but do need to be monitored.

If you have any questions or concerns, or just need to have a vent about things, please feel free to post at any time. We're all in the same boat, we all understand the unique difficulties of dealing with chronic illnesses and there is no judgement here.
__________________


Nicola
coeliac disease/Osteopenia /Crohns/Arthritis/
laperoscopic hemicolectomy 25/06/ 2013

Meds- Vedolizumab, sulfasalazine, Lansoprazole, Vitamin D, prochlorperazine, Oramorph, MST, B12 shots My journey with crohns: http://glutenfreecookiemonster.wordpress.com/

Allergic to - inflectra, aza

Non CD meds - Gabapentin, paracetamol, ventolin
10-26-2017, 07:59 AM   #4
Lisa
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Join Date: Apr 2010
Location: New York

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Hi Connor and welcome to the forum. If you check out the surgery sub-forum you will find a lot of information - http://www.crohnsforum.com/forumdisplay.php?f=71

I have to ask, looking at your user name, are you involved in the Fire Service down there?
__________________

30 plus years and counting with UC/Crohn's!
on remicade since 11/05

While my experiences may not be what everyone has had- I feel it is worthwhile to share any and all experiences that may be beneficial to others.
10-26-2017, 08:41 AM   #5
Firetrux745
 
Join Date: Oct 2017
Location: Orange County, New York
Hello, welcome to the forum

I'm sorry you've needed emergency surgery, but I'm glad you're healing well and you seem to have a good attitude which will really help you in the long run.

I personally had a resection a few years ago, but I didn't have a stoma so I can't give specific advice about that. I do however know that there are many people on here and in general who have gone on to have reversal surgery successfully and with few long term issues.

Generally, make sure you get plenty of rest, your body has been through a lot in the past few weeks so don't be surprised if you get a couple of set backs or you find it takes a long time to get back on your feet. Try to keep your fluids up as its easier to dehydrate with Crohns and especially with a stoma, but be careful not to drink too much plain water adding juice or drinking electrolyte drinks can help.

In terms of food, some people with stomas find they can't eat particular foods, especially those high in fibre, but others find that they can eat almost anything, so it could be a bit of trial and error to work out what suits you, but initially its probably best to try and stay away from nuts, seeds, sweetcorn, popcorn, mushrooms and other high fibre foods.

Have you been given an appointment for follow up with your surgeon and/or a GI? You will need to have careful monitoring to ensure that you're healing properly and to check that your Crohns remains controlled, most doctors recommend starting a medication after surgery in order to try and prevent a relapse, but this is dependant on the individual. You should also have blood tests on a regular basis to monitor your inflammation levels and to check for vitamin and mineral deficiencies as people who have Crohns can struggle to absorb food, especially those who have had some bowel removed. In particular, depending on which area of bowel has been removed you may be at risk of B12 deficiency, iron deficiency and calcium deficiency, these can all be rectified with supplemenets, but do need to be monitored.

If you have any questions or concerns, or just need to have a vent about things, please feel free to post at any time. We're all in the same boat, we all understand the unique difficulties of dealing with chronic illnesses and there is no judgement here.
Thank you for the in depth reply! I do have all my follow up appointments made for next week already. My gi wants to start me on a remicade infusion once I'm healthy enough again (2 weeks). I am drinking a protein drink (ensure) 2x a day to help me get my nutrients. I've only been out of the hospital for a day now, and I'm finding I can tolerate food at home way better than the hospital food. Maybe it was the 2mg of dilaudid every 2 hours making me sick. My ostomy is healing well and is active, I am pretty comfortable with it now but absolutely want it reversed. Hopefully the remicade keeps me in remission and I can live a relatively normal life. All of this is new to me, from never knowing I had crohns to this is alot to take in.
Thank you everyone, for your replies.
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