What to try next?

[hannah-rose]

Hi all,

I haven't been on this forum in about 4 years since all my symptoms went into remission following Infliximab, Humira and then 6MP for maintenance. I've been on 6MP on and off (wasn't that good at taking it when I felt healthy) since 2012.

I was initially treated with Infliximab and then Humira when I became allergic for perianal disease featuring fissures and a serious ulcer which required an operation. After the biologics everything healed up and my GI put me on 6MP for maintenance.

I have never experienced intestinal symptoms except for a small bout in about 2011 when I was first being diagnosed. I've never had pain or diarrhoea, colonoscopy was normal and blood tests always perfect.

Just before Christmas I had about a month of stomach problems which included diarrhoea, bloating and stomach cramps. I hadn't been taking my 6MP because I'd always felt healthy, so my GI told me to start taking them again, and after 5 days all my symptoms went away. I thought everything would be fine then but over the last 4 weeks I've had on and off symptoms of diarrhoea, bloating, urgency and tummy cramps. I've been taking the 6MP religiously, but in the last 24 hours I've had about 10 bowel movements.

If this is Crohn's related and not coincidental IBS then I want to ask my doctor to put me on something else because I can't keep going about my daily business like this. I had a blood test and my CRP was 23 (only very slightly elevated) and all other bloods were normal. I don't feel like my current symptoms are serious enough for Humira or steroids, as although the diarrhoea is a big inconvenience I am not in a lot of pain or passing blood etc.

My thoughts were to ask him about pentasa as I have never been prescribed this and feel like it might be a fairly harmless drug to try to relieve intestinal symptoms?

Other than that I'm not sure what to do. I have no idea what foods might trigger it. I've got a holiday to Italy planned for June where I intended to eat and drink wine for 6 solid days! I'm also very active and do a lot of running and hiking and my symptoms are really getting in the way.

Does anybody have any suggestions about what treatments I can discuss with my GI?

Thank you x x

 

[Gianni]

Hi Hannah, sorry to hear you've had a rough go of it recently. Sound like a flare to me but it would be best to get some visual tests done, CT scan and/or a scope.

I would think if the symptoms continue as is then to consider Humira as an option over 6mp. Personally I'm more hesitant to try 6-mp than Humira.

I think you're most helpful game plan for right now would be to create a food journal. You mentioned you have no idea what foods trigger the symptoms and it might be as simple as you've been consistently having trigger foods in your diet that have been causing the digestive issue. Just note down what you eat every meal for a few weeks and when you experience the discomfort. You will be surprised with how helpful a detailed food journal can be. The most common trigger foods people find is soy, dairy, wheat, gluten, sugar.

Otherwise, because of your hesitance with infliximab and adalimumab, some treatments you can try range from Low Dose Naltrexone, to some sort of diet plan like the SCD diet, paleo diet, juicing diet... etc.

Feel Better, Gianni

 

[hannah-rose]

Hi Gianni thanks for your reply. Can I ask why you would be more hesitant to take 6MP than Humira? I've only ever had one colonoscopy and it was horrendous, but I think I might suggest it to my doctor because the blood test aren't showing anything. I considered biologics as reserved for very serious symptoms, and while my tummy troubles are upsetting and inconvenient I don't think they're super serious, which was why I was wondering about pentasa. I've already taken Infliximab in the past and was allergic to it.

Hannah x

 

[DDA]

I am new to this forum. i am not seeing anything about vitamin D status. is this NOT KNOWN? I suffered for 48 years from moderate Crohns, and found that my D3 level was 18. when i got it to 80 my symptoms virtually disappeared . i was pretty upset that this information is not front and center. have you heard of this? I also recently got on MCT oil, which has made my life as close to normal as i have ever have been.
I also relegate Humira and other immunosuppresuive medications to "last hope" after normalizing D for 6 months. those meds only hide the symptoms of the underlying disease!

any thoughts? what is you D regimen?

 

[my little penguin]

Dda doc there are plenty of thread discussing the use of vitamin d
Here is just one

http://www.crohnsforum.com/showthread.php?t=70005

 

[Gianni]

Hi Hannah,

I've never actually been on 6mp but that was a calculated choice I made awhile back. I went straight to remicade mostly because of all the anecdotal evidence i was hearing about imuran and 6mp. Poking around these forums and talking to a few real life friends who had IBD, many people found immediate success and remission with remicade. Given that they both have some seemingly scary side effects, i opted for the one that had more of a proven record. I would less than a year later switch to Humira as the remicade seemed to stop working. I horror at the thought of ever having to be on any of these medications long term (i.e. longer than one year). It sounds like you stopped taking 6mp on your own accord and now you are having the issues. If it were me, and by no means is this anything more than just my opinion, I would get a colonoscopy done immediately and if active disease were shown I would jump on a biologic like humira and wait for remission. The difference this time though is once you achieve remission, I think you should try and eat a very healthy diet, whether that be paleo, vegan, or SCD if you don't want to stay on biologics for maintenance. Please check out our Diet Fitness and Supplements Sub-Section here on the forums for more info and you can click on the "juicing" link at the bottom of my signature for my opinions on juicing to maintain remission.

Years after getting off of Humira and Remicade I'm still very glad I used them because they did help tremendously and they helped me achieve a remission in which I can now maintain with diet.

Colonoscopies are so important with this disease so yes please find a way to get one done soon. I know they suck, but its one of those things you will save you alot of time and pain.

Gianni

 

[hannah-rose]

Hi,

My doctor has scheduled me in for a scope on Friday so hopefully that will give an indication as to what's wrong. He said depending on what the scope reveals we may be looking at steroids or Humira again.

I appreciate your comments Gianni but I feel I should be honest and say that they did not make me feel better. I know that your advice is coming from a good place, and is based on what works for you, but some of what you have said to me sounds like scaremongering. I'm aware that biological treatments are the most effective as I have already been on them and they helped immensely, however your comment that you 'horror' at being on any medication for over a year is something you might want to keep to yourself. I have been on medication for longer than that, and experienced no side effects whatsoever, and have been under the supervision of a very experienced consultant who I trust implicitly. Implying that I am at risk by taking these medications (when, with respect, you have no medical degree) is not beneficial for me. I also appreciate that moderating your diet may have been beneficial for you, and this may have been easy for you to do as well. My opinion? Life without pasta and wine would make me far more miserable than having to take a small tablet every day! I already eat a healthy balanced diet including all the food groups, and I get a lot of exercise and aside from some Crohn's symptoms I'm very fit and well. In all honesty unless I was literally at death's door if somebody told me I had to give up all the foods that I love, all the foods I love sharing and cooking with my boyfriend, I would be absolutely devastated. I'm only saying this because it felt like I was being told what I 'should' be doing, rather than being advised as to what may help me.

I do appreciate your advice and I know that I was the one asking for help from this community, and please don't take this as a personal dig at you, just at the way some of the comments were phrased.

Hannah x

 

[my little penguin]

Best of luck on your scope
I hope it gives you answers so you can get a good plan forward

Fwiw Ds was dx at 7 and has been on biologics for 5 years (4 years of humira ) plus takes Mtx
He is 12 now without any real issues

Hugs

 

[ronroush7]

Hi. If you and your doctor decide that you should go back on Humira, ask the doctor about bring tested for antibodies to make sure you can still take it.

 

[hannah-rose]

Thank you both, I will remember to ask about the antibodies x