My Story - Crohn diag. at 13, Ileostomy at 15, All good until 30, Crohns is back at 31........

Crohns = diag. at 13, Ileostomy at 15, All good until 30, Crohns is back at 31..

Age 11-13 Fistulas

Age 13 Crohns diagnosis following a bout of illness. Treated in hospital with Fluid diet & steroids. This worked!.

Age 14 Introduced to Pentasa, was reasonably healthy at the time

Age 15 Very nasty bout of symptoms, mainly blood and dia & pain. Weight Loss. Sent to hospital. 2 weeks of Steroid, Aziothioprine & Cyclazporine treatment. Massive temporary weight gain on the drugs in that short time. Didn't improve my symptoms and just got a hell of a lot worse. Handed over to surgical team for a Colectomy. Provided with Ileostomy, but retained Anal Stump in the hope of a future reconnection.

Age 17 Rectal Stump never quite 100% perfect. Dr confirmed reconnection is not a good idea. Note i still have the stump at 31. Regularly checked for cancers etc but has been ok. I gave up on the Pentasa as the pills were coming out solid so i doubt they were dissolving and were not releasing meds.

Age 16-30 Apart from life with an Ileostomy, I was actually very very well. No medication at all. Played high level football. Just had to adjust. Deep dark secret really.

Age 31 Symptoms started up slowly of Pain, Gas, less viscosity output. They did an Ileoscopy for the first time ever and confirmed I had Crohn's back in the ileum. Multifocal so could not be operated on due to short bowel syndrome, and I would have issues healing while inflammation was present.

Age 31 Started Humira. Worked well for first 3 months then a rapid decline. Got a bit of an infection as well. Massive weight loss of 12 kg over the year 66kg at worst. As well as Humira was started up on 6MP and a 6 week Fortisip Exclusive diet. Ended poorly.

Age 32 After 6 months of Humira, we took Xmas as an opportunity for a 6 hourly, dose of Steroids through IV. Worked so incredibly well and fast. Pains stopped, output improved. Quite surprising as i didn't respond when i was young. Also switched from Humira to Infliximab at the end of that treatment as they suspected i might have developed an antibody which stopped Humira kicking in.

Updated: 2014 Age 32
Still on Infliximab. MRI confirmed no longer mutlifocal. Crohns still evident in last 25cm. Have had multiple bouts of Small Bowel obstruction (10 or so) hospitalised twice. Strictures now evident in Ileoscopy. Received Dilatation treatment. Stoma is slightly bigger, definitely stiffer, and slighty bumpy.
Haven't had any significant pain since the steroid treatment except for when blockages occur. Often feeling uncomfortable but that is better than last year. Havent excercised properly in a year or so now which is highly unusual for me.

Updated: 2015 Aged 33
Strictures were not responsive to dilatations. Therefore have had more bowel removed and a revision of the stoma. Now have 3m of Ileum left. While on the table they also removed the bottom end by doing a proctectomy. Currently recovering.

Welcome to the forum.
I am so sorry to hear that your crohns has returned.
You will find so much support here.

How is your pain level?

Pain levels are ok really. As the crohns is a bit less active pains have droppped. But in it's place the healed regions of intestine are now full of strictures so blockages cause pains. I am sore around stoma which is where the crohns is active though. Almost feels like a general inflammation of lower right abdomen and muscle rather than just intestinal pain.

Overall Happy that I've seen improvement in recent times and looking forward to a full recovery.

I hope you get a full recovery too.... keep us updated.

Drs were unhappy with the last scope. Strictures were too severe so have stopped dilatations after 2 tries. Re site and strictureplasty coming up dammit.

Update:

Have now had Strictures removed which meant a revision of the stoma. Due to the obstructions there was fistularisation starting to occur in the region of the stoma so extra material had to be removed. Luckily they kept it in the same place. I now have under 3m of ileum left. Fingers crossed it remains healthy.

Also had the bottom end removed, an APR Proctectomy. To be honest it is removal of the bottom end which is making the recovery most difficult. I have this phantom pains going on which is quite annoying and disruptive. http://www.colostomyassociation.org.uk/_assets/File/pdf/Bookets%202013%20New%20Address/painanddiscomfort_019.pdf
I'll start reviewing other topics on here to see if anyone has been in the same situation and if their pains/sensations have stopped over time.

Otherwise all wounds healing wellish.

Hi hope things get better for you.
I am 3 years into my stoma, going back on the Humira next week as Crohns affecting my joints and am getting ulcers on stoma.
My stoma has a high out put which does my head in.The only thing that seems to help is codeine.
Any advice?

Glenn

Hi Glenn, ask your doctor about Imodium or loperamide. They are what I have used and have been prescribed for exactly that issue. I also used them before playing sports, before a night out, or while in foreign cities.

Cheers,
Have tried them dont work.
I eat toast,jelly babies,marshmellows and rice.
Better than my Crohns having the bag that is .

Sorry to hear those tablets haven't worked for you. I'm on Loperimide right now. When i left the hospital they were telling me an output of 1 litre a day is the target before discharge so introduced loperimide. I'm pretty sure mine has been more that that the entire 16 years (But who measures it ). However in the last couple years while sick the output increased significantly. Gas increased, and the noises increased.

You may find you have high output due to the active disease (ulcers etc) so fingers crossed the humira works well for you. It initially worked for me but went downhill after 3 months or so. I think i was too far gone. I suspect, but can never be sure, that if i did the hydrocortizone treatment first to reduce inflammation, then the humira may have kept the inflammation under control.

Another tip. I developed various strategies for sports and nights out. On days where i had sports I'd make sure i didn't eat anything between 6hrs & 1 hr before a game. Then within the final hour I'd eat 1 piece of toast. Then 5mins before I'd eat a banana (soft and full of energy, doesn't give the gripes when running around). This meant there was no output during the games as it was either out beforehand, or arrived after the game.

As you say. When faced with such a shit disease, the bag reintroduces control. It was no fun with the ileostomy but the alternative was much worse. Same goes for the proctectomy. The alternative of developing cancer is much worse so we chose to take it out now while the Surgeons were conveniently inside removing bowel. We retained the bottom end for so long as we wanted to be sure i had kids first due to the risk of nerve damage.

Cheers for the advice.Its hard but we manage because we are special.
Will let you know how Humira goes.
Just sat at work,pretty tired up a lot again last night but hey ho.