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HELP PLS! Old crohns pro, feeling lost with symptoms

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Crohn's Disease
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Posted 9/9/2015 3:10 AM (GMT 0)
Just wondering how common this is, if at all...
Some history: Crohns of terminal ileum. Tried entocort, azathiaprine, methotrexate, humira (which gave me onset of pml), now on stelera (like humira and rem). Also had hemi colecromy 2 yrs ago where they remived half of colon and 1 third of small intestine.

So, my issue is I am taking Stelera which I cant say is helping get me out of this flare (for the past 2 yrs) but also not letting it get to the point of surgery again. I have one of the best GIs in western Canada and he says essentially im such a severe case I am screwed ?!?! He says there is nothig left to try and this is the best they can do. He knows and believes my symptoms are bad but is at a loss. The tricky part is my colonoscopy showed only minimal ulcerations and active deterioration. I asked if my symptoms are bc its spread elsewhere outside of my TI, and he says its probable. My fecal calpro. Is elevated and crp. I asked him maybe for n enoscopy and he said there wasnt much point (***?). Problem is, my symptoms ar horrible 5 out of 7 days a week. Diarrhea (20 plus a day, sorry!), throbbing hip joints, terrible cramping with or without eating and spasms, ive lost 65lbs in 4 months etc.

My question is why is this happenig if my scope was somewhat ok? This has been this way for over a year... its not in my head and im not a hypochondriac, I am the last person to let this disease get the best of me. What else can I do? Ive asked if it could be scar tissue or spreading nd ll he says as its possible.... im so frusterated... ive asked for a referral to a second GI, but he wont take me bc I alrady have a GI (?). Does anyone else have this? I know my crohns is bad, but my gi has just said this is my new normal....but its not ok to live in the bathroom, be aching and cramping etc etx to the point I cannot function. Ive also tried naturopathic and diet stuff tht hasnt really helped. PLEASE help!!!
Posted 9/9/2015 4:09 AM (GMT 0)
Hi,

Do you take Imodium for the D? I have taken 2 imodium/day for years. I also take 3 busopan/day to stop bowel spasms. I find this helps me.

Julia
Posted 9/9/2015 4:17 AM (GMT 0)
Hi julia, yes I take immodium...usually about 14 a day :( tbat iis what keeps me around 15 or 20 bathroom trips :( thx for the reply tho. Ive also trid cholestyramine for d ..
Posted 9/9/2015 9:21 AM (GMT 0)
Carrie,

I think you definitely need another opinion just based on the facts that your current GI seems to be resided to the fact that there's nothing more he can do.

It seems that Stelera isn't working well enough for you. There are newer treatments coming out, and perhaps you could get into a trial, or consider Vedolizumaub if available. I would also check into QU biologics and see how close they are to getting their new drug to the market. I believe they're HQ is based in Western Canada.

It's a shame when in such need of batter care and treatment, that you have to push so hard to get it. Battling this disease is enough of a fight most of the time.
Posted 9/9/2015 9:34 AM (GMT 0)
Right, so your remaining colon looks sort of okay, but your GI doesn't want to do small bowel testing because there's no point? This doctor sounds wishy-washy to a fault. Discharge yourself from his services and find a new GI who has a backbone. At the very least, even if nothing can be done, I'd still want to know why I was having such bad symptoms.

If you really, really can't change GI (although I find that appalling if you can't), then raise merry hell with your GI to get more tests: capsule endoscopy (pill cam) or small bowel barium follow-through are the best tests for detecting inflammation in the small bowel, I think.

And finally, you haven't reached the end of the line with treatment. There is Tysabri (natalizumab), Entyvio (vedolizumab), and clinical trials (obviously have to get into one and hope you get the active drug and not the placebo!). You can also look into anti-MAP therapy. There's probably more options than what I've listed, but I'm in a rush.
Posted 9/9/2015 1:04 PM (GMT 0)
Hi monte and nicecupoftea, omg yes I couldnt agree with you more!!!! My gi office also heads the research and clinical trials for western canada and they still do t give a crap!!! They say yes your symptoms are horrible and we believe you, but this is your new normal and we cant do anything else. Oh I forgot to mention, I was just in hospital for 2 wks with PERICARDITIS (inflammation aroud heart), caused by crohns!!! I never would have even guessed, my heart was healthy (I am only 30) and 3 cardiologists all said its from active crohns!! They said its not a matter of if it happens again, but when. They even wrote a letter to current and prospective gis stating this and gis still say the same. Even trying for a second opinion for new gis, they all say no bc I have one. I could discharge myself, although id be waiting 2 to 3 yrs with no care to possibly see a new gi :( ie also done QU trial, with no help (althug duble blinded study). I am so lost and now crohns is affecting my heart. Vedolizamaub sou ds great bc the chances of pml are lower, but my gi says its not avail yet here. Ive asked for SBFT and pill scope etx. Thinking maybe its gone to sml intestine or stomach and all he says is its possible. He could carr less and THAT is so hurtful. Thx for listenig guys...
Posted 9/9/2015 1:11 PM (GMT 0)
Oh ive also taken prednisone which worked but after 10 days gve me anaphylactic response in the hospital (throat closed and tongue swelled). I feel lime I have to beg them to help and they still wont :( . They just say my croh s is very severe and treat each symptom individually with pain meds, immodium etc. But 15 immodiums and 40mg of oxycodone a day is a joke, its like a drop in the bucket. I want to find out WHY and treat it, not put a bandaid on it :( ....rant over
Posted 9/9/2015 1:14 PM (GMT 0)
Sorry for all the typos, im on my phone
Posted 9/9/2015 2:21 PM (GMT 0)
I also had a very hard time with the Crohns spreading and making me miserable. I tried everything, all stages of rx meds, otc, holistic, ect. Nothing worked for me. Ended up having large and small bowl resection due to fistulas and ended up wirh an Ileostomy. Nothing would even touch the crohns. Until Entyvio came on the market. I have been on Entyvio since October of 2014, so less than a year, and as of July when I had my last exam... I am finally in remission!!! I know, from experience, not every drug works the same for every person, but don't give up hope. Find yourself another doctor who will listen to you and not give up on you and don't give up on yourself. You have to be your biggest advocate, the one who fights for you the hardest. Make your doctors listen, make them care and make them keep fighting for you! They don't live with what you live with every day, so it's easy for them to accept this "new normal", but it's not right and it's not ok!
Posted 9/9/2015 3:14 PM (GMT 0)
Have you been tested for c-diff or parasites such as giardia? I would demand a full panel of stool and blood tests asap and have your vitamin d status checked. Studies are showing that low vitamin d status is common in crohns patients and raising your vitamin d status can sometimes help you stay in remission once you get a hold of your flare.

Have you changed your diet? Sometimes this can be very helpful in combination with medication. Many crohnnies swear by the SCD diet.

Best of luck to you.
Posted 9/10/2015 3:52 PM (GMT 0)
As long as there is no possibility whatsoever of pregnancy.

Look into Thalidomide.
Posted 9/12/2015 1:57 AM (GMT 0)
This was written on another thread: www.healingwell.com/community/default.aspx?f=17&m=3440170 But I just quoted this response as your issue reminded me of her's in a way.

I think NCOT's suggestions above are well worth thinking about. I went through a few GI's myself to get to the right one.

irishgal1 said...


"pb4 - I'd suggest at least give AMAT some real consideration prior to surgery. If nothing else, it doesn't work and you end up getting the surgery anyway. But if it works, you are better!! Weird about your constipation/frequency issues. I've never had an issue with constipation. Kind of would be nice for a change! I'm the other end of the spectrum.

This is the first therapy I've seen that claims to hit at a potential cause of Crohn's, and also the first that doesn't seek to control inflammation, but kill what these docs think is causing the inflammation. Like I've mentioned before, I only tried this as a last resort. I was dying. I'd already had a resection and blown through all the treatments out there. I wasn't even 40. I did a LOT of research on anything that could help me, and found this, which seemed like the best, most accessible alternative. Still, it wasn't easy to summon the courage to try something that my GI advised against and I had just heard about online. I couldn't even find one success story on any forum of people to ask about it! (That's part of the reason there are a bunch of stories from regular people who have had success on AMAT on TheCrohnsInfection. I wanted patients considering this to know others had succeeded. BTW - I worked with all of those patients individually to tell their own stories, and I can assure you each and every one is a real person!) When I talked to Dr. Chamberlin though, he said he had treated 250 patients over 20 years, had a 50% remission rate and a 70% improvement rate. With nothing left, I gave it a try! It's not without risk (like CDiff, obstruction and resistance/recurrence) but neither were the AntiTFNFs or prednisone I took.

NiceCupofTea - it certainly won't work for everyone. When I was researching, the thing that made me think it would work for me was that flagyl always worked well in the past, but it wasn't a maintenance therapy. When I'd go off flagyl, I'd get sick again. Flagyl has some MAP killing properties, so it made sense to me that this may work in my case. As an aside - Remicade also has some MAP killing properties and can push it into a dormant state, possibly giving it more success than just reducing the inflammation.

We'll know more when RedHill is done and John Aitken publishes."

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