Treatment not working! What to do next?

[AmandaC]

I was diagnosed with Crohn's in May 2008 and now feeling very confused about what to do next?

When I was first diagnosed I was put on Mesasal and Prednisone. Ended up in hospital a few times then was also put on 6-MP and the antibiotics Flagyl and Ciproflaxin. I improved but was not in remission so my GI decided that an op would help. I had surgery last Nov but when they opened me up my bowel was quite healthy and the surgeon decided not to take any of my bowel, so i was back to square one. A colonoscopy 6 weeks after the surgery showed that the inflammation had returned and was much more aggressive than when I was first diagnosed. I have just had my third dose of Humira. I'm into my 5th week and nothing is happening. My GI said I really should be seeing some improvements by now but I just seem to be getting worse.

The antibiotics seem to be the only thing that make a difference but can't stay on them long term. I just came out of hospital for the 5th time and now they want to take all of the large bowel.

I'm really confused about what to do? I don't know how much longer I can live like this but surgery seems like such a drastic measure. I'm also seeing a naturopath and taking herbs, homeopathic medicine and a probiotic. I'm considering taking an all natural approach but don't know if I can take the symptoms for much longer.

Has anyone been in a position where aggressive medical treatment just has not made any difference? Can you give me any advice?

Thanks!

 

[mommy1st]

Hi AmandaC welcome to the forum. What symptoms are you currently having? Before your surgery in November did they do any tests that would have indicated that surgery was an option or was it exploratory surgery? If your colon is bad enough for surgery now why wasn't it them? Good Luck

 

[AmandaC]

Hi Mommy1st. Thanks for the welcome. This is a great place to get advice and feel supported. My current symptoms are D about 20 times/day, weight loss, lack of appetite, nausea and cramps and extreme fatigue. Before the surgery I'd had 2 CT scans, a small bowel series and a colonoscopy. They were going to do a resection to take the worst part out but the antibiotics seem to have cleared all the inflammation before the surgery. About 5 weeks after coming off the antibiotics another colonoscopy showed the inflammation had returned and was even more severe than when I was first diagnosed.

My GI told me that the antibiotics were not a long term solution because of the side effects so i went on Humira which was supposed to be the 'wonder' drug but I've seen no improvements as yet after 5 weeks.

My GI did another colonoscopy this week while I was in hospital and took some biopsies to check for a virus called CMV. He said there might be a chance that this is making me sick. He also took me off mesasal as there is a slim chance that the medication could me making the crohn's worse! He also took me off 6-mp to see if that helps the fatigue.

I'm getting the test results on Tuesday.

 

[AmandaC]

I've been reading about everybody else's treatment on here and wandering if there are any other drugs I can try before surgery. I've tried mesasal, 6-mp, pred, humira, flagyl and cipro. Has anyone been on these medications and tried something else that has worked for them? I did ask my GI if there were any other treatments available before I went on Humira and he told me there wasn't. Has anyone tried Humira and then swapped to Infliximab because Humira didn't work? I'm wandering if this is an option?

 

[mommy1st]

I actually tried Remicade a few years ago and had a reaction to it. I have been on Humira and Imuran for over a year now and the Humira worked great for a year but then I had to have my forth resection on Feb 9th. As of right now I am still on Humira and the Imuran, hopefully I will be in remission for a long time with this med combo. I hope that something shows with your tests and they find something that works for you but if surgery is your only option to feeling better then you should really consider it to get your life back. I know what it is like to have D 15+ times a day and I am so happy that I decided to have the resection again, I already feel like I have my life back. Let us know how you make out and what you decide. Good Luck

 

[saidinstouch]

You can definitely try remicade if humira didn't work. While they perform the exact same function and are likely similar proteins, they are not exactly the same so you do have the potential to respond better to one than the other. As a side note, 3 doses of humira is not necessarily enough to see results. My understanding is that taking 2-6 weeks is the standard as you load up on humira. I would imagine this time could be slightly longer (6-8 weeks) in people who have not been on remicade previously (once again similar action so you benefit from the overlap while remicade clears from your system and humira titers increase). I would honestly say give the humira 1-2 more injections and see, if you can wait that long that is, and then decide if you want to switch to remicade. I've been on both and liked the remicade better overall, but the humira is more convenient and cheaper. When they are working, both are great though so if you goto remicade and it works then you are good to go. Just remember remicade typically stops working within a few years of starting so you'll have to look down the road, but by then a number of other options should be available to you.

 

[AmandaC]

Thanks for the advice saidinstouch. I just started to panic when my GI told me that I should have seen some improvements within 4 weeks but after reading about other people's experiences on here I have decided to give it until 12 weeks to see if it works. My GI put me back on Flagyl in the mean time to get me through. I think I've really stumped my doc and he's panicking and telling me that surgery is the only option now. I see him this afternoon so will have a chat with him about the available options. Thanks again!

 

[marinefreedom]

Maybe a little help

My best friend has Crohns. He always complained about his pains in his stomach, arthritis, diahrrea and everything that comes along with it. He switched doctor's recently and his new doctor put him on a tripeptide that's new to the market that has really changed his physical condition. It hasn't been a cure all, but substantially decreased his inflammation and his pain. It changed his well-being so much that I researched the company and actually became involved with the company after contacting them. If the moderators allow it, I'd like to post my email address so people can contact me and I can pass along the information. I don't want to do so without their consent because I don't want to come across as one of those guys just posting spam. I hope any information I can provide helps at least 1 person out there.

 

[D Bergy]

Tripeptide glutathione (GSH). I am assuming this is what was used.

I believe if you are selling a product, it is expected that you would be considered a business sellin a product. Contact the forum administrator for the procedure for advertising on the forum.

I hope the product does work for some people. Some studies indicate it can help, but I just did a cursory search.

Dan

 

[AmandaC]

Thanks everyone for your advice.

Saw my doc yesterday and tests came back clear for CMV, so just the crohn's making me sick. I asked him about the drugs Tysabri and Cimzia but he had never heard of them. I also asked if the Humira didn't work could I switch to Infliximab and apparently in Australia the government won't let you unless there has been siginificant improvements on the Humira? It all has to do with money and the government trying to free up hospital beds. If I don't improve before the first presription runs out then I won't be able to continue the medication because they don't give out these expensive drugs unless they're working, so I wouldn't qualify for either drug.

He also said that because my inflammation is so severe and located all over the large bowel I'm at risk of getting perforations which can be very serious so that is the reason he is pushing surgery, to avoid more serious complications.

It all makes sense to me but my parents/relatives/some friends are freaking out and can't understand why the doc hasn't been able to fix me. They think I should get a second opinion before considering surgery. I said I would look into it but it's going to take months to get in to see a different specialist and I really don't want to let this go on for too much longer.

What do you guys think?

 

[mommy1st]

I'm so sorry that you are going through so much right now. How long does a prescription last in Australia? In the US it usually lasts one year. Unfortunately with this disease sometimes there is so much disease and damage in one area that no combination of meds can fix it, that is what has been my experience. Best of Luck to you and I hope things start to turn around for you.

 

[Kittee]

I also think you need a second opinion. Perhaps you should try seeing another DR. Is your GI guy/gal a Crohns specialist?

 

[AmandaC]

Hi Mommy1st. The prescription I have at the moment will last me about 6 months then I get re-assessed. I really hope the Humira starts working so I don't have to make the decision about surgery.

Hi Kittee. I don't think my GI is a Crohn's specialist as such but he has treated many patients with the disease. I'm going to ring a specialist in Sydney and see whether they will talk to me on the phone and give me some advice about whether they can do anything else for me.

Will let you know how I get on!

 

[AmandaC]

Yay, some relief! I'm starting to feel so much better. On a combo of Humira, 20mg Pred and Flagyl which seems to be working well. Feeling more confident that Humira is starting to work as have never felt this well since getting diagnosed.

Spoke to the surgeon last Monday and he is also happy with the improvements and will not operate unless I'm back in hospital, have zero quality of life and cannot live with symtpoms anymore. He also said that he would be happy for me to stay on Flagyl for the time being to avoid surgery. Said he had many patients on antibiotics long term who have had no problems. When I mentioned nerve damage in limbs as a long term side effect he said that this is reversable and will disappear when you stop taking the medication. If this happens, he said there were some other types of antibiotics I could try.

So relieved that I'm improving and can put surgery on the back burner for now!

Thanks for all your support and advice!

 

[mommy1st]

YEAH, I'm glad that everything seems to be moving in the right direction.

 

[jed]

hi amanda, nice to see more aussies in here

 

[AmandaC]

Hi Jed,

Yeah, I did notice you as a fellow aussie! Not many of us around as far as I can tell? Hope you're well at the moment!

Amanda

 

[AmandaC]

Went to see GI yesterday and he is really pleased with my improvements.

I will be off pred in 5 weeks!!!! YAY!

If I remain stable after that we are going to play around with the dose of flagyl and hopefully just be on Humira in a couple of months. Fingers crossed!!

Thanks again everyone for your advice and support!

 

[RafHam]

Hi Amanda, that's excellent news. I know the feeling and there's nothing like it. Just wondering, at what rate are you weening off the prednisone?

 

[Guest]

hi Amanda - glad to read that at last you've found some relief, and surgery isn't looming as near as you thought it may be.

 

[AmandaC]

Hi guys, thanks for all your well wishes.

RafHam - This is how I'm tapering off pred: 15mg for 2 weeks, 10mg for 2 weeks, 5mg for 1 week then 0. My adrenal gland is functioning normally so my GI said this was ok. Have been on varying levels of pred since May 2008 with no breaks.

Thanks everyone for your support. Will definitely keep you posted on my progress.

Also going back to work for two days a week next term (I'm a school teacher). Feeling a little anxious about it all because I always seem to go down hill when I try to work. My GI told me that it's not work making me sick but the disease makes it harder to cope with work. Oh well, will see how it goes.