Newbie needs help.

[tasslebrain]

Hi everyone,
just joined this forum and I'm pleased to meet you all, I think it helps to talk to people who are dealing with the same sorts of things as you, obviously you'd never want your friends or family to have crohns but because they don't I think it's often very difficult for people to understand how draining it can be.

So I'm struggling a little right now, as I'm sure lots of members of this forum are. I'm had every drug in the cupboard and am just about to start a drug trial though in the past have had prednisolone, budeconide, pentasa, humira, infliximab (remicade) and I'm on 150 mg of imuran a day and 80mg of omeprazole plus IBS meds, mebeverine, buscopan. You know the drill. The thing is though my symptoms have improved slightly over the years no one has ever managed to nip it in the bud. I'm had constant and fairly severe abdominal pain since I was 9 years old and I"m now 22. I"m starting to go out of my mind being tormented every single day by the pain. It's just all the time. Never ending. Other symptoms are ok ish at the moment. Still bleeding quite a lot, but no arthritis or rash. Though I do find I get allergic to random things. ONly earlier I was eating piece of toast with marmite on it and my mouth swelled up and bits started peeling off of my gums!
This can't be good.

I think the pain though is just about to push me over the edge, anyone got any suggestions? Even just a good pain med that would send me away into a nice floaty pain free land would be good. ANYTHING!
Thanks for your help

 

[TheyCallMeRC]

Hi Tassle, welcome to the forum. We are both kind of in the same boat. I have been on lots of meds and none has yet to be able to put me into remission and I keep having more frequent flares.

My current GI that I have been with is great, but I am giving a former GI another shot to see if he has a different approach that may help.

Pain meds can be good and bad for many reasons. I can tell you first hand that your body will become dependent of narcotic pain meds even under the watchful eye of a pain management clinic. But you may need this for relief. You can ask for something like Tramadol or Darvocet and see if these work for you and if not then they can go stronger. A lot of people have problems with narcotics because they cause constipation. It doesn't bother me because I have constant D.

Also, don't know how long you have been with your current dr. but sometimes you have to see more than one because GI's have all different specialties and yours may not be the best for crohns.

I hope I have given you a little advice and others on here have plenty to offer as well. If you have any specific questions then ask away.

 

[Jennifer]

Hi tasslebrain and welcome to the forum!

You've been on a lot of different meds (and I'm assuming the highest doses you could go) and you still have constant pain and are bleeding (never ever a good thing). Has your GI ever mentioned surgery to remove the disease portion (resection) to see if maybe that might help kick start remission for you? Many people have had long remissions after surgery (I'm on 13 years so far after my resection). Unfortunately its not the same with everyone but it is an option to think about.

Only pain med I use from time to time is Tylenol 3 (mainly for arthritis pain). Tramadol made me throw up but everyone is different. I'd never take them daily though cause I'd prefer the problem to be taken care of. I'm sure we all would though.

As mentioned, another GI may be a good idea if this one can't get your pain and bleeding under control.

I was also 9 when I was diagnosed. Sad seeing so many kids getting it.

 

[PattyLynn]

Hi Tasslebrain, I recently (February) had to go on pain meds stronger than Tylenol 3. I am now on Oxycodone (Percocet) which is a narcotic. Although many people do get addicted to these types of drugs, I am so fortunate not to be one of them. No, I am not in denial! I just don't get addicted to anything. I take one Percocet when the pain is bad and then I can go days without taking any. Some times I need to take as many as three per day but then I can go three weeks without even one. BUT, everyone is different!! If you go this route, be careful!! I am just happy this works for me or I too would be going out of my mind with pain.
I can't believe that none of the meds you've been on have worked. Actually, yes I can - because back when I was first diagnosed in the early 1990s, nothing worked for me. They finally did a resection - they removed about a foot and a half - and I was good for 8 years. I know surgery is no one's first choice but you may want to talk to your GI about it. If it brings you relief and puts you in remission, it will totally be worth it!

 

[Angrybird]

Hi tasslebrain and welcome to the forum When was the last time any investigations were done to see what is going in inside? I am wondering if perhaps scarring has built up causing a stricture and this is why you have so much pain - surgery would be the option to have this removed via resection as mentioned above by Crabby.

Pain wise in the past I have just taken Paracetamol, I think I must be a bit of a plonker but it has never entered my mind to go to my doc for something stronger - I just wait out the pain whilst my GI guys sort out a plan of action :ybatty:

With regards to the trial, have you been given much info on it yet, if so would you mind telling us a little bit about it?

AB
xx

 

[David]

Hi Tassle and welcome! Thanks for joining and sharing your story though it's terrible that you've been in constant pain for so long. That must be overwhelming and so hard

Where specifically is your pain in the abdominal region? And when was the last time the doctors did any testing to evaluate the extent of your disease?

Like AngryBird, I'd love to hear a little more about the experimental treatment as well.

We're here for you any time you need us.

 

[tasslebrain]

Wow guys!
Thanks for all the replies it's really lovely to be part of such a supportive community.

Yes, none of the drugs have worked for the pain at all. I felt a little better after my first dose of prednisolone, just less tired, a little more spring in my step etc. But was back to being arthritic etc within a year. Aza' seems to do nothing for the symptoms though my blood work isn't too bad apparently. This seems odd considering the pain and the bleeding etc.

I think you're all right, that surgery could be the way forward, of course my worry is that given that none of the drugs seem to have really done the job thus far that they'll take a bit out and the crohns will ambush another part of my gut, though I suppose I should be positive and not think like that. Though I guess after 12 odd years of the same it's difficult to be able to see the other side. I haven't yet had any surgery at all, the hospital I'm under isn't keen on crohns surgery unless it absolutely has to be done because of the risk of the ulceration just moving further down the gut.

I was supposed to have a full endoscopy in February but was feeling really awful at the time and couldn't go in. Then when it was rebooked for April the hospital cancelled on me, and they've just cancelled on me again as I was supposed to go in a week ago. I've had a few MRI scans though it's been a good few years since I had my last full endoscopy and they tell me that there was a lot of ulceration, 'pretty much everywhere' apparently. Though provided they don't cancel on me again I should be going in in 3 weeks or so. Hopefully!

The pain is mostly over to the top left hand side just below my bottom rib. I'll wake up in the mornings too and my stomach will be burning so much I won't be able to move. Occasionally it hurts lower down though the constant pain is more to the top left. As I said yesterday I seem to have strange reactions to foods as well, I can eat something and be fine one day, and eat the same thing another day and my gums will swell and bits of skin will peel off. It leaves them feeling like they've been scalded. It's very odd.

I'm on 150 mg of aza' per day and I think my body is really starting to feel the effects of such a high dose, I weigh 54kg so 150 is really the highest dose my body could take and I've had tonsilitis 7 times this year, colds and other infections. It's really tiring me out. Also starting to get tingling along the left sides of both hands which I think is related to the azathioprine. (imuran) palpitations too seem to hit me every few days. It's all a little worrying.

The drug trial involves a drug that is similar to the anti TNF drugs but targets a different molecule. There are apparently just 200 people world wide on the trial and jeez! I hope it works, I can't carry on living like this! It's called ustekinumab. I think it has been used in the past already on people with skin issues. The trial is in phase 3 so I think it's relatively safe for human use.

I'll keep you guys updated as this could be the miracle drug that saves us all!

Cheers guys

 

[David]

Hi Tassle,

Based upon what you just said, I would strongly suggest that you demand that your vitamin B12, folate, vitamin D, magnesium, potassium, zinc, and iron levels be tested. I can just about guarantee deficiencies in at least a couple of those. And proper supplementation would make a HUGE difference. When they come back with the results, get the actual numbers from them. Don't let them tell you, "You're normal" or "You're low normal". Get the numbers and share them here if you're comfortable doing so. We can then provide additional information.

 

[tasslebrain]

Hey,
I will request this blood test next time I see my doctor.
I've just had the first part of my trial drug, ustekinumab. I had it via infusion on Thursday and I think it went ok though I don't know yet whether I've had drug or placebo. I didn't have a reaction and it wasn't too bead an experience. My doctors and nurses in the bi research department are fantastic and they sat with me the whole time, which is awesome. Not too many after effects, was quite tired and a little low though this could just be generic crohns symptoms. We'll see if it has an effect I hope so. It was the most I've ever been poked and prodded in my life, but all was made better by having such wonderful care from my doctors and nurses. Hats off to them.
If anyone has any questions about the trial, feel free to ask, as I said it could be the drug that does it for us!
Hope everyone is well.
x

 

[David]

Cool, I hope the ustekinumab works wonders for you!

 

[tasslebrain]

Hey everyone, thought I'd give you an update. Had my scope last week, they've said the terminal ilium is worst affected, ulcerated and inflamed. Though it's not as bad as it was when I was first diagnosed which is interesting because my symptoms are as bad as they were. Going to have the second dose of ustekinumab in a few weeks, though currently not feeling any different at all, so either I had the placebo the first time, or I've had the drug and it hasn't worked.

I went to see my doctor today, he said that really removing the affected area would be ideal, though they would have to take me off of the drug trial if I'm to be treated conventionally, also the symptoms would inevitably return pretty swiftly and given that I've had all the anti tnf drugs and can't have them anymore and the drugs I'm on currently don't work, really this trial is my last hope.

So I have to sit it out and wait to see if the trial works.
My doctor has given me some pain killers, though these are antidepressants, and they leave me very spaced out.
I ate something this morning and found my gums peeling again.

Jeezez! Will it ever end!
Hope you're all doing well.
=)

 

[PattyLynn]

Hi Tasslebrain,
You may have mentioned before but how long will the drug trial last? I pray that the drug will work for you and that you can avoid surgery. How wonderful will it be if this turns out to be the miracle drug we've been waiting for?! But, if it doesn't work, then it sounds like surgery will have to be done I know that is not the ideal situation but it will at least give you some relief. The peeling gums thing is so odd. Have you talked to your doctor or dentist or GI about this? It sounds so awful - you poor thing. Although you are going through so much, I get the impression from your posts that you have a pretty good attitude and you know what they say, "Good things happen to good people!" Good luck with the trial - I will keep my fingers crossed for you. Please continue to update us on your progress.

 

[tasslebrain]

Hey,
The trial will last as long as it helps I think, they're giving me the next dose in a months time, which will be injection and infusion. I think it can be given for up to four years on the trial and by then it should hopefully by licensed anyway so will be available for general use. Here's hoping it works. =)