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6 months since diagnosis & still struggling

19 year old male & the middle of this month marks 6 months since diagnosis, and roughly a year since symptoms began.
I started having quite bad wind and abdominal cramping last summer, and initially didn't think much of it until around October when the diarrhea and weight loss began. Went to my GP who suggested I went for a colonoscopy, and I booked one for February (which was the earliest one available). Until then just took Imodium, which just about did the job.
I found the lead up to the colonoscopy and the scope itself very unpleasant, but it was definitely worth it to get a diagnosis (which was initially Ulcerative Colitis). Was immediately started on a high dose of Prednisolone, and felt fine for a few weeks until I was started on Asacol. For the first week and a half of taking it I noticed my symptoms slightly worsening, but just thought this was a result of slowly reducing the prednisolone, however I then had a horrendous 24 hour period where I pretty much had non stop diarrhea. I suspected it was probably a reaction to the Asacol, and immediately stopped taking it which resulted in symptoms returning to how they'd been before.
I then tried another type of drug in the same line of medication as Asacol (which name i can't remember),as my hospital consultant suggested that it may have just been a reaction specifically Asacol. However shortly after beginning this drug, I once again noticed a worsening in symptoms, and this time stopped before it got to be as bad as it was with the Asacol. I then went back to just taking a high dose of prednisolone again for a while until I started azathioprine (imuran)in late April. I was told this could take up to 6 months to have a full effect, but couldn't even settle on a consistent dose until 6 weeks ago, as I had to reduce twice due to a stomach bug and then due to a worrying blood test result (liver function). It has since then started to slowly improve my syptoms, and I am almost completely off predisolone. However somewhere in the middle of that (around June), I was told that after looking at histology reports that my diagnosis had changed to Crohn's colitis (which was confirmed recently,as I had an MRI scan which showed no inflammation in small bowel, only large).
This meant that I could get funding for either Humira or Remicade, and I started Humira 3 weeks ago, whilst continuing to take imuran. So far I don't think it has made a significant difference, and I expect the imuran is doing most of the work, however I haven't had any negative side effects either.
I would like to think that I am currently better than I was a few months ago, as I am opening bowel 3-5 times a day, compared to 6-7. However I still find my bowel is incredibly sensitive to certain foods, alcohol and stress.
I still feel I am some way off of remission, which I'm hoping will be the same as how I felt over a year ago i.e symptom free. However with my current rate of progression, I sometimes wonder if I will ever get back to feeling how I used to. I know that there are a lot of people on the forum who have had crohn's or UC for years, and have much more knowledge of their disease than I do. A year of symptoms may seem like no time at all for some people, but it is hard when I have such clear memories of what times were like without the disease, and not knowing how long it will take to get back to feeling healthy again.
 

Angrybird

Moderator
Location
Hertfordshire
Hello Jamie and welcome to the forum :)

What symptoms are you still experiencing at the moment? What dose of the Aza and Pred are you currently on? When are you next due to see your doc to discuss how things are doing?

Whilst everyone is different with how this disease behaves I think for most food and stress plays a big part. Has your doc mentioned any type of change in diet at all? If not it may be worth asking for a referral to a dietician, they can suggest different things to try and some here go as far as an elemental diet. This means going on liquid only for a while but this can really help towards calming the tum down and pinpointing problem foods when they start to get reintroduced.

Also do check out our diet and sups forum as this can give some pointers in the food area but also you can see what exercises etc that folks here are doing to help with the stress side of things as well.

I will be keeping fingers crossed that you can be feeling much better soon.

AB
xx
 
Hi,

I had a similar problem to Asacol 800mg. Whilst tapering off Pred, I was put on Asacol but this didn't work for me as my symptoms became worse and my diarrhea increased and became very watery. My GI told me to come off it and carry on the Pred until they put me on Imuran, just started this a few days ago so i'd like to see how this goes.
 

David

Co-Founder
Location
Naples, Florida
Hi Jamie and welcome to the community. I'm sorry to hear of your struggles :(

I'm curious about your current symptoms as well. And what foods have you found trigger your symptoms thus far besides alcohol?

If you would like to connect with others who are on Azathioprine or Humira, we have subforums dedicated to both under our treatment forum.

We're here for you!
 
Hi AB,

I'm currently on 100mg of aza and 10mg of pred but reducing to 5mg this week and hopefully completely off it in a few weeks. My symptoms at the moment vary between going 2 times a day with no D and no cramping, and bad days can go up to 6 times with bad D and cramping in abs almost all day.
At the moment the only dietary things that make me noticeably worse are a lot of cheese, ice cream, brown bread and alcohol. My doctor hasn't suggested any specific dietary changes, apart from to stay off the things I know make me worse. He did say that once in remission there shouldn't be any reason why I can't eat anything I want. I'm seeing him next in a few weeks. A liquid only diet sounds unappealing if I'm honest, but it may be something I consider if I get worse again. However I'm hoping the aza and Humira combined will mean that I'm feeling much better in a months time or so, and remission is achieved not to long after that. It does seem like an annoyingly long process sometimes though.

Thanks,

Jamie
 

David

Co-Founder
Location
Naples, Florida
Hi Jamie,

Based upon the foods you mentioned, you may want to look into trying the paleo diet or specific carbohydrate diet. Not only are they gluten free, but mostly dairy free as well and could be a systemized way for you to avoid foods that fall in the categories you're currently mentioning. Quite a few people here have had symptom reduction with them.

With the symptoms you're having, are you making sure to maintain hydration and your electrolyte levels? Have you had your vitamin B12, folate, vitamin D, and magnesium levels tested? People with Crohn's are commonly deficient in those and proper supplementation can make a big difference.
 
Hi Jamie and welcome to the community. I'm sorry to hear of your struggles :(

I'm curious about your current symptoms as well. And what foods have you found trigger your symptoms thus far besides alcohol?

If you would like to connect with others who are on Azathioprine or Humira, we have subforums dedicated to both under our treatment forum.

We're here for you!
Hi David,

Thanks. :) my current symptoms vary between going twice a day with no D and no pains. To going 6 times a day with bad D and abdominal pains most of the day. Normally somewhere in between though.
Foods I am staying away from at the moment are a lot of cheese and dairy especially ice cream, and brown bread. However since aza has started working I have been able to start eating more dairy things e.g ok with yoghurts now. I may be ok with a bit of alcohol and brown bread, but don't want to take the risk until I'm in complete remission. I think stress effects me more than diet at the moment however.

Jamie
 
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