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Original poster

17 yr old having emergency surgery to remove lower bowel

20 replies

lennythelion · 05/12/2010 20:09

As I write, my 17 year old Step Son is about to undergo emergency surgery to remove his lower bowel.

He is a fit and healthy lad and was well until a fortnight ago when he started with constant D & V. He went to his GP three times, providing a stool sample which came back 'clear'. However, the awful symptoms persisted.

Anyway, he was so unwell on Thursday night that he went into hospital. Initially, they thought he had either Ulcertative Colitis or Chrohns Disease.

However, despite having IV fluids, anti-biotics and steroids his condition has worsened. In the middle of last night, Drs gave him a blood transfusion.

The hospital called at 9am this morning to tell my DH to get to hospital asap. When he got there they said he needed this surgery.

Naturally, our whole family is shattered by this. We have been told that he can have surgery in approximately six months time to connect the rectum to the large bowel. In the meantime, he will have a colostomy bag.

Can anyone help or offer any advice or experiences please? I am distraught and so scared.

OP posts:

eeenymeenymineymo · 05/12/2010 20:36

Goodness, sorry no advice but just wanted to say I hope the surgery goes well and he makes a speedy recovery.

Do they know what caused it?

Original poster

lennythelion · 05/12/2010 20:49

Thanks for responding. No idea what may have caused it. We may find out more after the op but he's always been in good health.

OP posts:

eeenymeenymineymo · 05/12/2010 20:56

This is probably a lot of information to take in to start with but it looks as though it could be quite useful

Living with a colostomy

expatinscotland · 05/12/2010 21:01

I hope the surgery goes well and he comes out okay!

nancy75 · 05/12/2010 21:01

my brother has had this due to ulcerative colitus - he was 19 when he had it done.

He had surgery to connect the large bowel and does not have a bag. He is 30 now and although he is very skinny and has to watch what he eats (lots of things give him an upset stomach) he does lead a normal life.

Unfortunately brother is on hols at the moment, or i would have got him to post.

I know it is a massive shock to you now but I just wanted you to read a similar story with a positive ending.
I hope the surgery goes well. Good Luck

MimsyStarr · 05/12/2010 21:06

Hello, yes, my sister had this done recently (she's 30 though). She was diagnosed with Ulcerative Colitis at around your stepson's age. It was managed with drugs until last year, when it got so bad that they decided on the Colectomy.

She had the 3 operations over the course of a year. Had the bag for 6 months. All went fine. She now has what they call a pouch, and the bag is gone.

Unfortunately the UC has now recurred in the pouch (they call it Pouchitis, believe it or not), but I gather this is extremely unusual, and she's been very unlucky.

I feel for you. I hope he recovers quickly. He should do, he's fit and healthy otherwise. x x

witchinthewindows · 05/12/2010 21:08

Sorry to hear about your stepson. My son has Chron's but it is managaged by daily tablets and diet at the moment. There is a forum recommended by his specialist, which may give you some answers www.nacc.org.uk/content/home.asp

I really feel for you, and your poor boy x

Goingspare · 05/12/2010 21:14

My friend had this surgery due to Crohn's when he was in his 30s, and like nancy's brother, he is rather thin, quite careful what he eats, but is now in his 50s, well, holding down a great job in the US, happily married, and in the last few years a father of two.

So sorry though, a horrible thing for a teenager to go through.

uggmum · 05/12/2010 21:20

My friend was seriously ill with Ulcerative Colitis caused by a bug she picked up in Turkey. She had a colectomy and had a bag for a year. She made a full recovery and had a successful reversal recently.

I hope your step son is ok.

Original poster

lennythelion · 05/12/2010 21:34

Wow thank you very much for the supportive posts and advice. We are still reeling from the shock. I will definitely have a read through all of the websites suggested.

I will come back tomorrow with an update on how he is. Thanks again

OP posts:

Hangingbellyofbabylon · 05/12/2010 21:36

thinking of your stepson and you all.

Simbacatlives · 05/12/2010 22:32

This reply has been deleted

Message withdrawn at poster's request.

catinthehat2 · 05/12/2010 23:05

Best wishes to the young fella - what a shock for him & you.

A colleague (I'm being very anonymous with the details) has been through a similar experience. I've seen that person after about 15 months - working away etc - and bright/healthy/bouncy seem to be good adjectives now.

Hope all goes well.

Catinthehat

Original poster

lennythelion · 06/12/2010 19:41

Hi, quick update. Went to see my DSS this afternoon. He was weak and drowsy and extremely tired yet very relieved that the operation was over.

We saw the Consultant who spoke to us about the operation and what my DSS can expect in the future. They won't know whether it's Crohn's Disease or Colitis until they get results back.

Apparently, if it's Colitis they will operate in six to twelve months time to connect the rectum to the upper bowel and create a 'pouch'.

However, if it's Crohn's the Dr said that they would not be able to perform corrective surgery and my DSS would have to have a bag for the rest of his life. This is the worst possible outcome and we are praying for the best.

OP posts:

MimsyStarr · 07/12/2010 13:55

Hi Lenny, I hope it's UC then because the pouch is definitely manageable and I know it changed my sister's life. She may be having some problems with pouchitis now, but still better than having a diseased colon and the constant pain and bleeding that she had for over 10 years.

I wish you and your DSS all the best.

spudballoo · 10/12/2010 21:53

I'm very late to this. I hope he's recovered from the operation? I had this done 5 years ago due to childbirth injuries. It's major surgery and does take a wee while to get over.

I had a colostomy bag for 2 years before I was 'reconnected'. Although it wasn't ideal, it was totally manageable. At the time I thought I would have the bag for live and, really, it wasn't the worst thing. I was, however, rather older (35).

The support and advice of a super stoma nurse made it all so much easier, especially with what to wear and finding the 'right' bag and products for me. She was an amazing woman, I'm sure it's not every one's first choice of career but she'll always be a total heroine in my book.

i appreciate this isn't something you'll want to share with a 17 yo, but I did conceive a second child whilst having a colostomy bag! I just add that as an example of how life does, indeed, go on.

There are lots of helpful support groups for people living with colostomies.

Hope he's recovering well x

nellymac · 12/12/2010 00:22

My wife put me on to this thread. I had an emergency ileostomy (like a colostomy) for Crohn's Disease when I was 16, and have worn a bag ever since. I'm now 38, married with children.

Obviously, from an emotional point of view, it takes time to get over something like this, and it's normal to go through a process of denial or anger before acceptance. The first words my brother said to me after my op made a big difference: "with the right girl, it doesn't matter". He was right.

From a practical point of view, there's basically very little that wearing a bag stops you from doing. When I was 17, I took up Ju Jitsu, which I kept up for a number of years. It was a great confidence-builder. I now cycle and swim regularly.

Yes, there are downsides. You need to be organised about your 'supplies', and the current fashion for low-waisted trousers isn't ideal. Finding the right appliance makes a big difference, and it all gets easier with experience.

I know people who have managed UC and CD medically or through diet, but when I look at my overall health and quality of life, I have no regrets at all about my surgery.

RunnerHasbeen · 13/12/2010 12:44

I had this surgery at 19 (now 31), with internal pouch re-connection 6 months later and absolutely no problems since. I have other autoimmune problems (arthritis) as well but even with that I have finished 3 degrees, run triathlons, had normal relationships and married, normal career (with only few times off sick, always arthritis - never surgery related).

My weight is fine, was a wee bit high after I took steroids for a prolonged period (again arthritis) but now normal. I am more careful than most people with regards to dehydration, so salty drinks with all exercise. I also seem more sensitive to changes in water and get some tablets before going abroad, nothing serious though. I actually think my time with a bag made me more mature regarding worries about weight/ appearance etc.

The absolute godsend is the stoma support nurse, she will be able to set your son up with someone similar to him who has got through it (whether with a permanent bag or not). She will be able to put his mind at rest about any concerns in a way that is not embarrassing. He might feel embarrassed talking to you about some things, so don't push that - one of the worst things for me was feeling so exposed and everyone knowing something about me that I would have wanted hidden. It was too much, too soon. I did try and keep all the bag stuff as secret as possible from my parents as it gave me a sense of control and feeling human.

In hindsight I think it was harder for my parents in some ways, being so ill then feeling better and less scared (even if I didn't look better) after the surgery, really helped me. I knew I felt better, they were still scared and not knowing - if that makes sense. If you want to ask anything in confidence, just send me a message. Good luck to all of you, he is lucky to have his family around him.

nellymac · 13/12/2010 21:38

I have to second one point RunnerHasbeen said...It was extremely important to me that I be in control of who was told. I remember being very upset when my parents insisted on telling uncles, aunts etc. Looking back, I can understand their perspective now, and their need to talk about it also. However, I would urge you to assure your son that he has the absolute and sole right to determine who is told, when, and how, and to not pressure him. Learning how and when to talk about it is a key skill, it takes years to develop (in my case at least) and you can only learn by doing.

GeekLove · 13/12/2010 23:04

My friend recently has surgery for Chron's disease -this was three weeks ago and he his planning on returning to work in the new year having recently started driving again.
Your SS should be fine even with a bag since the adhesives for the bag are meant to be strong and stable even when bathing, swimming and physical exercise. Since you son is young and did not have too long a period of illness beforehand these are both good prospects.
In contrast my friend is still relatively young (mid thirties) but was I'll for a month with constant diarrhoera until he persuaded the GP to admit him to hospital with bowel pain and acute malnutrition. It turned out he had a mass which needed removal but couldn't have that until he'd spent week with a central line installed to correct the malnutrition. He is quite tall and was just under 9st on admission. Hopefully everything will be fine with your son and you will have a good christmass together.

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