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Crohn's Disease Forum » Your Story » 19 Crohnie My Story | Need help and Advice pls


02-15-2017, 10:52 PM   #1
LilMissCrohnie
 
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19 Crohnie My Story | Need help and Advice pls

Hi, my name is Seychelle. Im 19 and a student. My mother has Crohn's Disease and was diagnosed at the age of 15/16, no other history of Crohn's is in my family.

I was diagnosed with Crohn's Disease in 2014 when I was 16 and suffered from severe anal fissures. I was diagnosed with Iritis (Inflammation of the Iris) in 2013 and was treated for 8 months on heavy doses of steroids (eye drops and oral). For 4 months my eye specialist failed to treat me, it wasn't until around the 4 month mark that he stood up and said he didn't know what to do. He then sent me to a specialist in Brisbane (Dr. Conrad), she managed to treat my Iritis and slowly get me off of the steroids within 4 months. Once I had no signs of Iritis, and was completely off of steroids, I began to fall into a very heavy depression (I had depression for 4 years previous to this). I eventually became suicidal and reached out for help immediately. During this time, I began experiencing extremely severe abdominal pains, diarrhoea, weight loss and fevers. As my mum has Crohn's, she suggested we saw her specialist, Dr Andrew McIntyre. After my first consultation, I was booked for a colonoscopy and endoscopy. After my procedure, my doctor confirmed that I had Crohn's Disease effecting my large colon and rectum/anus. I was immediately prescribed Sulfasalazine. After 3-4 months on this with no sign of treatment I was put on Azathioprine. After another 3 months I was changed to Mesalazine (Salofalk) and continued on Azathioprine. I was then accepted into uni and had to move to Brisbane, my condition was extremely bad, I was still losing weight, I was not digesting any food and had severe abdominal pain. The Azathioprine was giving me Bladder Infections/UTI's every 2 weeks, severe nausea/vomitting and gave me severe migraines. Dr McIntyre was determined to get me some type of treatment before I moved so I was suggested Humira. I was 18 yet so I was given a 3 hour infusion of Remicade (Infleximab). I immediately felt a difference within 3 days, my fatigue and general well-being was improved dramatically, my pain and diarrhoea had decreased and I could actually function normally. A month later I turned 18 and had moved to Brisbane, Dr McIntyre arranged Humira for me and I was having fortnightly injections. I was not taking any form of immune-suppressant. For a year I was doing great. I started uni and completed 3 trimesters, I had a part-time job and meet a wonderful partner which whom I moved in with. In May 2016 I went to the emergency hospital at Mater Public Hospital Brisbane with severe bleeding, diarrhoea and abdominal pain, I had lost 10kgs in a week and couldn't walk. After a week in hospital I was registered with the Young Adult Gastro team at the Mater Hospital. I had a colonscopy and a endoscopy, showing sever Crohn's Disease. My Humira was still reacting to my body well but I wasn't showing any sign of treatment. I was then prescribed mesalazine (Pentasa) and Mercaptopurine (Puri-Nethol). After 3 months and no sign of treatment, and complications with Mercaptopurine (nausea/vomitting) I was then taken off both Pentasa. At this point I was on Humira and Puri-Nethol for another 3 months. I was in and out of Hospital every 2 weeks, I had to defer from University and after 2 months I had to leave work after passing out numerous times. My partner became very distant and I was getting very stressed and axnious over the realtionship, I had no support from him or my friends. I went to my next appointment with determination for some help, I demanded something to be done. I was given a Iron infusion, an ultra sound to check my inflammation in my intestines. Following this I had a discussion with my doctors about my medication options. In Australia, I was almost on the last avaliable medication. I was given the option of experimental drugs, but was told I'd need to be off all medication for 8 weeks and then had a 50% chance of getting a placebo drug. I was so ill that it wasn't a risk I could take. We decided to increase my Humira to weekly and change my immune-suppressant to Thioguanine (Lanvis). I decided to leave my partner and move back home with my parents. I spent 4 months living with my parents to heal and relax, I had a pathology test during this and it came back with normal inflammation markers. This was the first time I had ever received this result. After this news I had goal to move back to Brisbane and start uni again. I moved back on the 20th Jan, and have been suffering from stress and anxiety quite badly. My symptoms have come back, worsen anal fissures, bleeding, discomfort and increase pain, I went back to the hospital since and my doctors arranged an ultra sound, MRI and Flexi Sig for this month (Feb). I had my Flexi Sig on Tuesday the 14th and after I was told I had no medication options but would need a temporary Sigmoid Colostomy. This was hard to hear. I'm looking for others that have had tempory Sigmoid Colostomies and what their stories and advice are/is.

Thank you,
LilMissCrohnie

Last edited by LilMissCrohnie; 02-16-2017 at 04:16 AM.
02-15-2017, 11:47 PM   #2
Hypocrohniac
 
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Oh Seychelle, you poor possum! I am in Australia too, and am currently waiting for Medicare to decide on my medical options. Your ordeal is traumatizing to read, so I can't imagine how it must feel to be living it.
My favourite part of the next step is the word "temporary". So, not forever. Do you know exactly what the procedure will involve? I don't have a colostomy, but have fantasized about having a break from pooing. Will the surgery give your poor bum a break?
Being away from home, and any support you may have there, and then recovering and adjusting by yourself sounds like it will only stress you out more. Is moving back home an option? Are your parents supportive? Have you got support in Brisbane?
Sending cyber hugs your way.
02-15-2017, 11:53 PM   #3
ronroush7
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Welcome. I am sorry for all you have been through. You also might try posting your question in the surgery section of the forum.
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02-16-2017, 12:10 AM   #4
Hypocrohniac
 
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Excellent, and caring, advice as always Ron!
02-16-2017, 04:14 AM   #5
LilMissCrohnie
 
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Oh Seychelle, you poor possum! I am in Australia too, and am currently waiting for Medicare to decide on my medical options. Your ordeal is traumatizing to read, so I can't imagine how it must feel to be living it.
My favourite part of the next step is the word "temporary". So, not forever. Do you know exactly what the procedure will involve? I don't have a colostomy, but have fantasized about having a break from pooing. Will the surgery give your poor bum a break?
Being away from home, and any support you may have there, and then recovering and adjusting by yourself sounds like it will only stress you out more. Is moving back home an option? Are your parents supportive? Have you got support in Brisbane?
Sending cyber hugs your way.
Thank you Hypochroniac.
The procedure will involve my rectum/sigmoid to be sealed off and my large colon redirected through my abdominal wall where I will need to wear a colostomy bag to pass my waste into. The surgery will hopeful give my bum time to heal.
The option to move home is there, I have just recently moved back out in the past month. My parents live an hour and a half away from me, and are extremely supportive. But I am here in Brisbane to study and it's all I want to do. If I move home I suffer from depression because I'm not doing what I love and my relationship with my mother can be troubling. My roommate/bestfriend is extremely supportive but I haven't got support within the Crohn's Community, which is really what I'm looking for. My Doctor has arrange for me to see a social worker/psychologist and I'll be seeing them at the end of the month.
02-16-2017, 04:14 AM   #6
LilMissCrohnie
 
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Welcome. I am sorry for all you have been through. You also might try posting your question in the surgery section of the forum.
Thank you Ronroush7
02-16-2017, 09:19 AM   #7
ronroush7
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Welcome
02-16-2017, 04:25 PM   #8
Hypocrohniac
 
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I'm glad to hear you have support in Brisbane. Doing what you love will keep you strong if it gets tough.
There is a truckload of Crohn's support on here. Visit often
02-17-2017, 05:04 PM   #9
GI Jane
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Sorry to hear you have so much pain so young. I looking down the barrel of the gun at my first surgery. Being a student you're used to research. Try getting a 3-ring binder and start sections for medications, procedures, doctors notes, blood work. Being organized brings some peace of mind for me.

Hope you get some answers.
02-17-2017, 07:05 PM   #10
LilMissCrohnie
 
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Sorry to hear you have so much pain so young. I looking down the barrel of the gun at my first surgery. Being a student you're used to research. Try getting a 3-ring binder and start sections for medications, procedures, doctors notes, blood work. Being organized brings some peace of mind for me.

Hope you get some answers.
Thank you,
I've just come home from being in emergency overnight after a pancreatitis attack.

I'll definitely be doing this. I need some clarity.
02-17-2017, 09:57 PM   #11
CYY
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Hi Seychelle,

I'm a student, and I was diagnosed when I was 16 too. It must be for you to go through school while suffering from this "invisible" disease, with all the hospital visits and the absenteeism from school, so you've definitely come to the right place. I can't give you much advice on temporary sigmoid colostomies, but all I can say is that there're quite a few support groups for teens and students here; feel free to check them out ^^

Hope you'll get well soon! Sending you a hug of encouragement (づ。◕‿‿◕。)づ

Cheers,
CYY
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Hi, I'm CYY! (✿◠‿◠)/
Age: 17
Diagnosed with: Crohn's Disease, Supraventricular Tachycardia, Chronic Asthma
Currently on: Methotrexate 20mg/week, Folic Acid 5mg, Atenolol 50mg, Modulen IBD (10 scoops), Ondansetron (PRN), Debridat 100mg (PRN), Anarex (PRN), Ventolin (PRN)
Previously on: Azathioprine 50mg, Propanolol 25mg, Seretide
02-18-2017, 08:20 PM   #12
Lady Organic
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sending lots of support your way LilMissChronie xxx
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''UC-like Crohn's'' since 2001:
on: 25mg 6-MP (purinethol)+ B12 shots
minor hands/wrists chronic arthritis since 01/2013

Diet: ''IBD-AID'' : http://www.nutritionj.com/content/13/1/5+ organic food only
suppl Curcuminoid extract, Inulin,psyllium, apple pectin, Vitamin D

past meds:
pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).
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