I have had UC since I was 15 - 24 long years of frantically searching for toilets. I have severe symptoms and my latest attack has been going on for 2 years now but I am extremly reluctant to have surgery. My specialist - Dr Brooker in Hamilton has said if I can't shake it this time then it's off to the knife. I have done it all. Pentasa, Aza, Salazopirine, Remicade, Prednisone, Hydro Cortisone, hospital stays to name a few. I would love to hear some success stories of Surgery to calm my active mind. I have also enjoyed reading some alternatives to drugs and am going to give them all a go before I settle for surgery. At present I eat and drink whatever I want and have not tried any diets. Was even told that acupuncture can work in some cases.

is UC quite similar to Crohn's?
sorry i dont know much about it, might go google and read up.
do you know where you have your UC? is it even specific to a certain place?

Hi Terunt. Will keep you posted re my son's surgery. He is 16 and was diagnosed 7 months ago and is now awaiting urgent bowel resection. Initially on Pentasa, changed to Asacol due to side effects on Pentasa. Prednisone to try and control chronic flare. Hospitalised with bowel obstruction and IV steroids at that time. Azathiaprine for last month to no effect. MRI yesterday confirmed what he has been saying for months that the seat of his pain is the terminal ileum. 4cm + fibrotic stricture which apparently can be removed withput stoma. If all other options have failed for you, surgery may be worth a punt. I have heard many success stories. Good Luck !

Hi Olivia, You mentioned in another thread you had had surgery for the first time when you were 15. What part of the bowel was resected, and how many times have you had to have surgery since ? Was it a success for you, and would you recommend it ? Do you feel surgery made a marked change in your symptoms and your life-style ? Thanks. Would appreciate your feedback. P.S Ulcerative Colitis is similar to Crohn's although not generally as severe, as the ulceration does not affect as many layers of the mucousal lining of the intestine as Crohn's does. Crohn's can affect anywhere from the mouth to the anus, whreas UC is generally limited in its presentation

Camom AGAIN ! I am REALLY anxious now to talk to others about thier experieces with surgery. Having been told by the gastro. that surgery/bowel resection is our only option, we were told yesterday "cutting into your son will be like trying to nail together two bits of rotten wood" unquote ! Not very reassuring to say the least. When drugs are not working, and an MRI shows extensive fibrotic scarring and all symptoms point to an abdominal blockage, what other option are we left with - seriously !

Camom - yup had my first surgery at age 15 (18 years ago!) after being on prednisone for a year and finally got diagnosed.
The surgery certainly changed my life! back then it was quite unusual to do the surgery by laparoscopy.
I had 30 cms of small intestine removed, close to where it joins onto the large intestine.
After the surgery i wasn't put on any medication. Then 6 years after that I had strictures causing complete bowel blockages. I was in hospital every week for 6 weeks before the drs took notice and took out another 30cms of small bowel.
I have kinda regular colonoscopies and have had an MRI a couple of years ago, no sign of Crohn's so any issues i have now seem to be scar tissue/strictures.
I'm currently on Azathioprine, Pentasa and Colestid sachets and managing quite fine. I have some prednisone on hand if i have an uncomfortable day.

If you are finding that no meds are working i say go for the surgery. Both times i was so sick of being sick and in constant pain i desperately just wanted it gone.
good luck and keep us posted on what happens.

Argh just lost a big post

My DP had UC for years and was on most of all the drugs you mentioned. When he gave up smoking 8 years ago, it seemed to make the UC flare up even more,it was awful.

In 2004 he finally agreed to surgery, it really was his only option. He had his colon removed and had a colostomy bag attached and at the same time he had a jpouch made up, this was atached to his anus and small intestine.

We had to wait for the j pouch to heal for 3-4 months before the colostomy could be removed and sewn up.

The initial surgery is a biggie, within the first week DP had lost 20kg, he looked so ill. I thinkit must have taken hima good 4 months to get back to normal. And then when he went in for his 2nd surgery, he was fun after about a week.

7 years on he is still not 100% but he doesn't have to worry about taking any drugs, well only metamucil to help thicken things up. He pretty much doesn't have that urgency or pain to go to the loo anymore, and he is pretty healthy.

For him it was the best decision.

All the best and please let us know how you get on.

Thanks so much Olivia and MP. You have been quite reassuring. Will keep you posted !

Hay there terunt, how are you ? Would love to hear from you and how you are doing. What are your thoughts on surgery now, 6 weeks further down the track ? My son is due for his operation this Friday 29th. I will keep you posted as to the outcome.

Hi everyone. Just wanted to keep you posted on my son's surgery. 40cms of bowel removed as part of the ileo-caecal resection. Lymph nodes in the right hand quadrant were also removed as these were hugely inflamed and are more than likely part of the reason pain in this quadrant was so severe. (Histology has since confirmed these were affected by Crohn's)Surgery went extremely well (3hrs). Best news of all for my son was NO BAG ! (It was heart wrenching to see his face pre-operatively when they marked him on both sides for a bag, just in case it was proven to be necessary) We have had to deal with several post-operative complications, but I will not bore you with those. 8 days on, and he is in NO PAIN...yep I repeat, NO PAIN !!!!! This is the first time in close to 18 months (since he first started suffering with what we now know is Crohn's) he has been pain free. He still has a long road to go to be fully recovered, but he is ecstatic that he no longer needs pain relief. Prior to surgery he was living on Para-care (version of Panadol that is kinder to stomachs) and Codeine or Tramadol and even then he was normally still in some degree of discomfort, despite the drugs ! For anyone considering an ileo-caecal resection, I would say go-for-it with a capital G ! Current meds - Azacol only !!!!!!! Will give you further posts as we progress on this journey. Over and out for now - One ecstatic Mom and an even happier son

hi Camom
thanks for the update on your son.
glad all went well and he managed to avoid the bag
he must be so relieved to have no more pain (i so know that wonderful feeling!)
please keep in touch and let us know how he's getting on.

Hi Camom
That's great news, you both must be so relieved. Best of luck to your son for a speedy recovery and a brighter future.

Thanks Olivia and all other Crohn's/UC thread followers for your support.

As an aside Olivia, how are you doing - bump - you haven't been in touch on this EBB thread for a while re your condition ? That's ok if you want to remain private - just concerned hon, that's all, and hoping you are o.k

Almost 3 months since DS's surgery and he's doing ok, but not brilliantly in my opinion. The surgeon is very happy, but his perspective is a little different and physically, not holistically focussed.

We were warned that after the initial post-surgical period of recovery, there would be a "honeymoon" period of absolute bliss, and this proved to be true. We were also warned that the true result of the surgery would not be known for about 3 months,and may not be as wonderful as first indications may show; and this too seems to be true.

The strange post operative pain centred around the spleen area seems to be the new persistant pain, and is clearly NOT the gut adjusting to being handled as we were first told. It is not consistently severe or persistent enough to require further medical investigation at this point, but that doesn't mean we are not extremely concerned as to what this may mean. As this is probably indicative of an area of severe inflammation in the small intestine, we are all beginning to wonder where we are headed next.

Weight gain has been nil. 178cms and 62kgs going into surgery,(and probably only at that level due to steroids) DS dropped to 56 prior to discharge. He managed to gain a kilo, but has lost that again. Energy levels remain very low, but there has been a little improvement in that area over the last few weeks, so steady as we go there.

As another positive, bowel motions are now down to averagely 3-4 a day. This beats the 8-12 prior to surgery. Mucous and bleeding are also less of an issue, but each trip to the toilet requires a shower. Sphincter control is still good too, so no accidents, and not the sense of urgency either that we were told may follow the ileo-caecal re-section.

My main concern now is for his emotional well being. As you sufferers know, Crohn's is an insidious disease. Normality disappeared for DS as the symptoms took hold, and the life he is living now bears no resemblance to that of his 17 year old friends. Their support in general terms has been limited due to the egocentric nature of teenagers. I am very grateful for the one true and steadfast friend he has, and for 2 others, who God help them, understand completely, but from a different level. They both have CF and are dying.

There is a real grieving process involved in being diagnosed with an illness that is so debilitating. We have grieved as parents for all our son has lost. It is a difficult thing to try to explain to an outsider, and even more difficult for him to cope with. He is living it. I hope at some point he will take me up on the offer of professional councelling as I feel he does need it. He has had it before and knows the benefits to be gained, so his reticence currently does not phase me.

All this said, we are in a much better place physically in general terms than prior to the surgery. It had to be done. But as all you sufferers know, the journey to that point takes a toll, but the journey doesn't end there. This is the reality that DS is clearly having trouble getting his head around.

Any tips from those of you adults who have walked the same path as teenagers ?

sorry i completely missed your update!

now i'm pregnant things are great Crohn's wise
i've stopped taking the Colestid sachets because my bowel motions are great during pregnancy.
i used to have to peel skin of all fruit and now while i'm pregnant i can eat loads of fruit skin and all!

i joked and said to my GP last week that i might just keep getting pregnant so my Crohn's will be happy. LOL

how's your son doing now? still having pain?
if it were me i would be pushing his specialist more! or going to A&E (be the squeaky wheel!)

Hay Olivia !

I am really, really happy for you and the fact you are stable with your Chron's and happily pregnant. It is a wonderful thing you are doing. I am beyond words.

DS is not doing so well, and this is the micro-mini short version. DS is scheduled for another colonoscopy this week, and will be facing further discussions regarding Humira.

Re pushing the specialist....He's been pushing us ! No complaints there with medical care and attention. DS is now 17 and in charge of making the calls re his own care plans. So much control has been taken away from him by this insidious disease, control over his care plan is the only damn control he has at all right now.

And re the trips to A and E......frequent. And not because he/we are squeaky wheels, genuine medical emergencies.