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Crohn's Disease
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Hi everyone,
Another Crohn's sufferer here, new to Boards. 25yo, diagnosed when I was 19. Sibling and mother with Crohn's too, and one of my mum's siblings has it too.
I sent an email to ISCC but never got an answer, so I decided to look for groups around Dublin (where I live) and I found this topic.
I've read a lot of pages from this thread and I've felt identified with some of you more than once...I guess we have a few symptoms in common after all hehe
As for treatment, I started with Budesonide and Pentasa, until I had a flare up in 2012 and was put on corticoids for 6 weeks, then I was introduced to Imuran. Both my mother and my sister had an alergic reaction to it, but I didn't.
Everything fine, until last October when I started to get really bad cramps. I didn't manage to get an appointment in the GI Unit until late January, so the thing got worse. Urgent colonoscopy, MRI scan and so on. Results: 20cm of terminal ileum really affected. Solutions? Surgery or giving a chance to Humira to see if it could avoid undergoing surgery.
I started Humira in March, 4 injections, then 2, then 1 each fortnight. I had a nurse coming home to explain everything to me, but I had seen my mum doing it so it wasn't something new to me. It hurt so badly in my stomach, but in my legs it was fine. Thankfully they've changed them recently so I don't notice anything at all now. In April I started to get an awful backache, I wouldn't be able to sit at my desk at work so I had to stop working for 3 weeks. Impossible to sleep, sit down in general,...I tried every single position and even went to a physiotherapist 3 times to try to relieve the pain. I was taking Tradol and even Arcoxia for 3 days (it can really hurt your stomach). With the time it disappeared so I could go back to work.
I had my last appointment last month and it was good news! Humira is working, my blood counts and vitamin levels are fine, so so far I've avoided surgery, I'm in the good path, the consultant said. I'm seeing Dr. Leyden in Mater hospital, I think someone asked about him recently. I'm quite happy with him, always available via a nurse.
Problems I have now? I lost a lot of weight and it seems impossible to put it on back. I'm taking Ensure plus twice a day but the weight scale won't change haha Also, I'm constantly tired, I can come home from work, fall asleep at 7pm and wake up at like 11 for like 30min, and then fall asleep again until the following morning. It's getting better biiiit by biiiit, but still has a big impact on my life. Last but not least, I also get the night sweats, not every night but when it happens I get completely soaked.
If anyone wants to have a chat feel free to message me! Crohn's can be evil, but we're not alone! (Although I don't know anyone suffering from it apart from relatives haha).0 -
I'm in trouble again- unfortunately.
I had an appointment with a surgeon last week- eventually- and he went through things me.
At the moment- I have a number of narrowings- which are causing complete blockages intermittently- which take days to right themselves. I also have continual internal bleeding- not helped by the warfarin I'm on (if you weren't aware- blood clots are apparently a common occurrence in Crohns).
So........
Its a game of timing more than anything else- I need surgery- its going to be a bit more than previously- because of my medication and history.......
1. Several weeks prior to the surgery come off the Humira
2. 10 days prior to the surgery come off the warfarin
3. 4 days prior to the surgery- get a dialysis treatment to remove any blood clots from my system- and have semi-permanent sieves installed in the Aorta- to stop clots from reaching the lungs (or other organs).
4. Surgery itself- multiple resections both small and large intestine.
5. Stoma- because of where the resections are- immediately below the stomach- pretty much entire intestinal tract to be below the stoma
Surgeon is concerned about where the stoma is going- I may have difficulty absorbing nutrients or fluid- its something he is going to have to monitor after the event- however, he doesn't have any plan B if the absorption issues are as bad he suggests
12 weeks to recover from the above- and then reversal surgery- try to reattach the intestine and remove the arterial filter/drain- and see how that goes........
Depending on recovery- back on Humira after about another 12 weeks..........
The Humira is the kicker in all of this- because healing so badly impaired- the stoma/bag is unavoidable- and the risk of infection is so much greater than it would otherwise be.
I've had surgery more times than I can honestly remember for Crohns' and I have no many resections I've had- or how much I've had taken out- but this time- for the first time- I'm getting seriously freaked out...........
I guess I'm writing- as an outlet- hoping that putting it down in writing will somehow ease some of the worries on my mind............
Scheduling this- is awkard as hell- as many of you know, my little wifey has poor health herself- with particularly brittle diabetes- and I've a 5 and 6 year old who rely on me- so I can't really take myself out of circulation for any period of time.
I should have brought my little wifey with me to the appointment with the surgeon- I'll bring her along to my next appointment with the GI consultant- who hopefully will be a bit more positive than the surgeon was.
For the record- the surgeon had excellent people skills, was good at communicating, didn't try to hide anything- and made certain I understood fully what he was saying- all of which are amazing attributes for a surgeon- and indeed, they do inspire confidence- however, its just having it laid out in front of me like this that is completely freaking me out- particularly as I hadn't figured the warfarin and humira were a big deal (however- one is the cause of the dialysis and the arterial sieve - and the Humira is the cause of the stoma requirement.............)
I'm honestly disappointed- as I thought I had dodged a bullet not having had a stoma thus far- however, if its reversible, I guess thats as good as it'll get........
I'm just so worried for my little wifey and children
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