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Crohn's Disease Forum » General IBD Discussion » Need some advice please.


12-06-2017, 07:40 PM   #1
scoth00
 
Join Date: Dec 2017
Need some advice please.

Hello everyone. OK My story maybe a bit long but I'll try to shorten it as much as possible. Basically I am now 17 and I am a male. Back in 2015 I had diarrehea and blood in my stool. I go to the doctor and they say it's just an infection and gives me metranidazole. I take it and immidiately I become better. No more blood or diarrehea. Fast forwar to December of 2015 I begin to feel sick again same symptoms and I go to the dr and he gets me to do a colonoscopy. I drank the liquid and didn't eat anything etc..... the report comes back and the doctor says that I have crohn's however on the report it said that the bowl was not fully visible due to my bowl not being fully empty. They discharge me and give me steroids and I begin to feel OK again.

Then in 2016 I developed an abcsess. I went to for an operation and I got a colostomy bag attached to my left hand side of the abdomen so the infection drains. I had this done in September of 2016. I kept getting regular check ups with my gp who said it takes time for it to drain and once it does the colostomy would close on it's own.

Fast forward to November 2017 I begin to have a fever and pain in my stomach feeling as if there is a small ball on my lower left abdomen. I go to the hospital and they done the usual CT Scan and stuff and said that I need to have a surgery to close the abscess and the fistula that has developed. I had another colonoscopy done again but this time it's different to 2015 as the doctor says I only have a tiny bit of inflammation at the bottom of my colon whereas in 2015 I was told I have patches of inflammation everywhere. So I don't know tbh. Now they are saying I have something similar to Crohn's and I said what is it and the dr says it's something similar. I said is it UC? She says no the biopsy shows something similar. Then the next day she comes in and says you have crohn completely changing her words.

I'm due for surgery on Tuesday and the dr says that they are going to close the left hand colostomy and remove it and have it put on my right hand side and have me put on Immunosupressonts. I asked how long should I have the Colostomy and she says lifetime. My question is why would I need to have the colostomy on for a lifetime if all there is is a tiny bit of inflammation as they say?

What is going on? I am completely lost and the dr doesn't explain stuff clearly. Can someone who has had experience in this guide me? Why would I need a permanent colostomy?

Thank you.
12-06-2017, 08:56 PM   #2
Trysha
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Join Date: Aug 2009

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Before allowing any further surgery I would be seeking a second opinion.
You are so young to be going through all of this.
There are some questions that come to mind here such as why the left side colostomy can be closed at this time and if so why was it not closed sooner.
Also you need some explanation if a permanent colostomy is to be done.
The symptoms you describe could be indicative of crohns.
I would definitely seek a second opinion from a Gastroeneterologist before allowing a permanent colostomy.
Hopefully you have some support from your parents with all of this happening to you
Please keep in touch and let us know how you get on
Feel better soon
Hugs
Trysha
Ps...Welcome to the forum
12-06-2017, 09:16 PM   #3
scoth00
 
Join Date: Dec 2017
Before allowing any further surgery I would be seeking a second opinion.
You are so young to be going through all of this.
There are some questions that come to mind here such as why the left side colostomy can be closed at this time and if so why was it not closed sooner.
Also you need some explanation if a permanent colostomy is to be done.
The symptoms you describe could be indicative of crohns.
I would definitely seek a second opinion from a Gastroeneterologist before allowing a permanent colostomy.
Hopefully you have some support from your parents with all of this happening to you
Please keep in touch and let us know how you get on
Feel better soon
Hugs
Trysha
Ps...Welcome to the forum
Thank you so much! I highly appreciate it. My question here is though why would one need a permanent colostomy bag anyways if thr bowl is functioning properly?
12-07-2017, 07:37 AM   #4
Lisa
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Location: New York

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Thank you so much! I highly appreciate it. My question here is though why would one need a permanent colostomy bag anyways if thr bowl is functioning properly?
You shouldn't!
__________________

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.
12-07-2017, 01:23 PM   #5
Fldirt
 
Join Date: Dec 2017
This doesn't sound right! Are you seeing a Gastroenterologist if not you need to see one. Do not let them cut on you again until you do. Find a doctor that you are comfortable with & that listens to you. I have had Crohn's for 40 yrs with 2 colon resections & am now on Stelara.
12-07-2017, 01:57 PM   #6
scoth00
 
Join Date: Dec 2017
This doesn't sound right! Are you seeing a Gastroenterologist if not you need to see one. Do not let them cut on you again until you do. Find a doctor that you are comfortable with & that listens to you. I have had Crohn's for 40 yrs with 2 colon resections & am now on Stelara.
Hello and thank you for your reply. I am so sorry to hear about your situation as well. Can you please tell me what part of my situation doesn't sound right?
12-08-2017, 11:26 AM   #7
Trysha
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Itís the colostomy issue....there needs to be another gastroenterologist opinion regarding diagnosis and treatment....especially before such a drastic step is undertaken.
You are too young for a permanent colostomy and everything possible should be done to avoid it.
Feel better soon
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