Crohn's Disease Forum » Your Story » 1 Year and Life To Go


02-11-2012, 03:48 PM   #1
Ness
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1 Year and Life To Go

Hello community!

I've been stopping in here and there for the past year, looking for answers or suggestions regarding how to handle my troubles with Crohn's and IBS. Let me introduce myself.

My name is J. 26 years old and was diagnosed with Crohn's Feb. 1st, 2011. Man, it's been a tough year mentally and physically trying to figure out what is right for my body and treatment. Crohn's in the small intestine with IBS to act as the cherry on top. I've thus far identified a trigger or two, stress and marijuana. Both times I've had a flare up seem to correlate with Marijuana usage. I was never a "pothead" but used it on a regular basis twice in my life. Just before my first flare and once again, this past Fall to help subside nausea and loss of appetite I'd been experiencing. Well, the docs and I figured out that it was Azathioprine that was taking away my appetite and causing nausea.
So, as a responsible 26 year old male who shouldn't be smoking marijuana at all, I axed that bad habit once we knew why I was never hungry and wanted to vomit every morning.

My most recent flare started this past December. I had been on Prednisone at 45 MG and tapering down until this past week. They took me off of Azathioprine and I "magically" became hungry again and the nausea went away. Ideally, you'd think they would have switched my meds in the process of learning Imuran made me sick - Trouble was at this time my insurance wouldn't cover it as I was switching providers. So from December until now I was ONLY on Pred. But man, it was the best my tummy and body had felt before the diagnosis. Azathioprine/Imuran was not right for my body. Couldn't tolerate it.

My current situation is the following: my Prednisone was finishing its taper, my insurance JUST kicked in and they now just put me on 6MP, no steroids. The nausea and loss of appetite is BACK. And I understand that the 6MP will not work to its full effect for a couple months. I'm fearing that this family of medications will not work for me as shown by Azathioprine.

I'm beginning to feel sharp or raw burning symptoms in my small intestines, again, being off the pred. Hard to tell if it's flaring or adjusting to the fact that I was using steroids for over 2 months and now my body is going through a withdrawal of sorts. I guess we'll see ...

My first question is, simply, does anyone have advice? I feel like garbage on these 6mp oriented pills and I don't know what the docs will want to put me on next. I can outright tell you I am NOT interested in the biological treatments like Humira or Remicade. The risk factors, while minimal, can't be justified in mind for putting those toxins in my body. Some people swear by specific diets. Others say the change in eating habits have done nothing for them. I love food. I really LOVE food. It will be hard to limit myself if that's the route I go. I guess I just feel lost ... Does anyone have similar stories they can share to give me hope? Or is there anyone on the forum who has successfully retained remission without the regular usage of medication? Anywhere you can point me or anything you can say would be amazingly helpful. I have not worked full time for a year due to this. And I am so frustrated of feeling like crap on and off due to wrong medications or the very symptoms of the disease itself. I feel like a factory constantly needing repairs and fixes. I'm sure there are more appropriate places on the forum where I could ask these questions, but that IS my story. I have a lot of questions!

A little bit more on personal life. Single, but have been seeing a very supportive girlfriend for 3 years. I am a freelance videographer. I've had the opportunity to direct national music videos, short films that have received global release, currently developing a short film based on a video game for a world wide release and of course many other side jobs. I'm blessed for these opportunities, but not for the Crohns when it gets in the way and forces me pass on good opportunities in my field due to feeling like CRAP.

Thanks for listening. Looking forward to comments and advice!
02-11-2012, 08:19 PM   #2
billyjoel
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Glad to have you officially aboard as a poster

I have been in remission for a couple of years now no crohn's meds. I try to eat healthy and avoid foods that upset my bowels. I exercise and I take 20mg of paxil a day to stave off anxiety. This is what has worked for me and I do not feel that my Crohn's is as bad a case as many have so I feel very fortunate for that.

Also, I noticed that you said smoking marijuana cased flares, for me personally marijuana never caused a Crohn's flare and science tends to support that marijuana can help Crohn's disease suffers which is why most medical marijuana states have Crohn's disease as one of the diseases it can be used for in their laws. I would say if you had a flare as a result of using, it was not the pot, but smoking. Smoking in general is a big no no for Crohn's patients or anyone for that fact. Marijuana should (should meaning that smoking is the least healthy way to introduce anything into your system, even smoke from a fireplace and any alternative is probably desired) only be used through vaporizing, distilling to oils, or through baking. Smoke can irritate your insides which I believe can and do cause flares.
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02-12-2012, 02:44 AM   #3
mnsun
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I agree with the above on the mj sitch; however, the benefits for Crohns are due to the CBD which isn't in most commercial strains, though other components can stimulate appetite.

I was diagn in 04, with surgery at terminal ileum, and took Imuran and Pentasa for little over a year. I went off the pharma reservation and took the dietary route until November of 11, when I started LDN--which is a mild, novel approach which can be combined with most any other treatment except for opiates. It is not a cure-all but studies are promising for upwards of 80% of Crohnnies--see the Low Dose Naltrexone thread. This does take a couple months, in most cases, to take effect. FYI: you may have to seek out a doctor who is sympathetic to LDN, though any reasonable doctor must agree, as mine did after I went behind his back, "it can't hurt".

That being said: diet (no preservatives, sugars limited--no fake ones except stevia/honey/cane sugar sparingly, very limited refined flours, high protein intake, ditch the GMOs, cut out caffeine save for yerba mate--in my opinion) and supplements (enteric coated fish oil, QUALITY probiotics, B12, D3, antioxidants, herbal antiinflammatories, ie. curcumin) help most definitely. Diet can vary so keep a food journal of problem foods. Drink lots of CLEAN (Reverse Osmosis or distilled) water every day. Search my thread: MY Supps for MY Dis-Ease

Best of luck.
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02-12-2012, 06:51 AM   #4
Angrybird
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Hello and welcome to the forum I know it is hard but I would say have a look at your diet a bit, being on a crohns 'safe' foods is not a cure as such (although for some it has really got them to a good place) but I truly beleive it can help with symptoms. At least look at cutting down on the usual suspects - dairy, caffeine, high fat and high fibre foods and see if you notice a difference.

Really what should have been done with the 6mp is that you were kept on a low maintainence dose of the pred whilst this kicks in. As of now you are not really on any treatment because the pred is stopped and the other is not working yet. I have re-started Azathioprine recently but you will see frm my sig that I have been kept on the pred. I would definetly have a chat with you doc/IBD nurse about this especially as you are now havng the same problems as you did with the Aza. Do check out our treatment forum as there is loads of info about these and othes that you could then perhaps discuss as an alternative treatment.

Let us know how you get on
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DX: Crohns July 2002
Surgery: Ileocecal Resection Sept 2011
Now:Tummy behaving itself and new mummy to baby Nicholas
Current Meds: 6-MP 75mg,B12 injections every 3 months
Previous Meds: Budesonide, Prednisone, Remicade, Pentesa,Hydroxychlorequine,Azathioprine (tried twice) and Methotrexate
02-12-2012, 08:34 AM   #5
Crohn's 35
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Ness. No one likes to be on meds, we get that. However I do know of someone who has exhausted all meds and she is on MJ but...you dont smoke it if you want results. You get way more THC when you use a vapor little thingy (can remember the name) but you get results in 5 min and doesnt ruin your lungs in the meantime. My daughter has done a paper and got into the 95% marks and they profs have had her paper for months. They are using it to prove it does heal and helps with pain. If you want better results try it that way.

I can't take the immune suppressors because they go straight to my liver. A low resdue diet will also be a great help. Welcome aboard.
02-12-2012, 05:42 PM   #6
David
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Hi J and welcome. I'm glad you finally joined.

First off, I'm not surprised that you're not doing well on 6MP considering you didn't tolerate Azathioprine well. Azathioprine basically turns into 6MP in your system, they're VERY similar drugs in the Thiopurine class. I'm betting money they haven't done a TPMT test on you, yes? If they didn't, considering the FDA recommends that they DO test TPMT before starting a Thiopurine, you might want to ask WHY.

You've been given a ton of advice above so I won't give you more as I don't want to overwhelm you. But we're glad you've joined and we're here for you anytime
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02-13-2012, 08:39 AM   #7
Ness
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Thank you ALL so much for all of this helpful advice! Its so great to hear from people who KNOW what I'm going through with literal experience. I look forward to hearing and sharing more.

David - TPMT - I believe that is where they basically test if you can tolerate it, correct? They found that I DO have the enzyme that is required but I also don't have the enzyme as much as the average person. So, perhaps, that could be why I am not doing fantastic with these drugs?

It's amazing ... My gut is becoming more and more irritated again without treatment. When I ate yesterday, as I digested, it got pretty painful in my Crohn's region. Pretty sharp and raw feeling. I'm sure its flaring again to a degree! I called my doc this a.m. Hopefully she'll put me back on a low dose of Pred, to tie me over until we figure out how to treat me.

Sigh ... Thanks again!
02-13-2012, 11:31 AM   #8
David
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Ah, well that's good that they tested you. Good on them! Here's what the info says:
Allelic polymorphisms in the TPMT gene predict the activity of the enzyme such that 1 in 10 of the population are heterozygous and have approximately 50% of normal activity, whilst 1 in 300 are completely deficient. As a result, these individuals are at high risk of severe myelosuppression.
My guess is that, based upon what you're saying, you're heterozygous. I understand that those who are completely deficient are screwed but I have a hard time interpreting whether those of you who are heterozygous are at increased risk of myelosuppression or not responding well. You may want to discuss that with your doctor (if you do. please let us know what it means ).

Either way, good luck to you! I hope they get things sorted soon. Keep us updated, we're here for you
02-13-2012, 12:08 PM   #9
Ness
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Join Date: Feb 2012
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Thank you, David.

Truthfully, I just want to get back to feeling confident and reliable. I am fortunate in that the disease doesn't seem to be as severe for me as others. Though it has caused a great amount of loss i.e. work, money, my condo, my relationship(s). I have accepted that I probably won't feel at 100% again, but I'm not asking for that. Something better than 50%-60%.

I have faith that things will get under control once we figure out what is right for me.
02-15-2012, 09:46 AM   #10
Ness
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Join Date: Feb 2012
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Well, I figure I'll give an update here before I start wandering off onto other threads.

I went to the ER 2 nights ago, because my pain was becoming consistent rather than intermittent. The doc put me back on Prednisone due to some inflammation returning. I'm guessing because, as mentioned, I didn't have a medication to roll over onto when I got off of Prednisone.

I'm fortunate that Azathioprine did seem to work and kept me in remission once before, it's too bad I feel icky as a result of side effects. And the 6mp seems to not be much of an improvement thus far. David, I think you may be right on the Heterozygous front. Honestly, though. I am NOT willing to try any of the biological treatments, I understand it's the next step my GI will likely present on my next visit.

I'm getting scared to be back on 40mg of Prednisone already. I'm honestly SCARED in general. I'm determined to find behavioral, lifestyle, and dietary changes to make a difference with minimal medication. I kind of mentioned this before. I'm stubborn, for me ... Biologicals and surgery are my ABSOLUTE last resort. Until they tell me, "you will die if we do not try this", that will be the day. My body, my stomach, I want to keep all of it.

Anyway, we'll see if a gluten free diet helps. Again, thank you ALL for the support and help. I'm so frustrated ... Yesterday, I just about flipped out. Wanting to scream and hit my steering wheel as I let these negative thoughts consume me.

If anyone has any recommendations as an alternate treatment that isn't biologicals I'd love to hear ANYTHING. Thank you all so much!
02-15-2012, 11:57 AM   #11
Tesscorm
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Hi Ness,

I can completely understand your reasons for wanting to avoid the meds!

My son, 17, has been on Enteral Nutrition since diagnosed in May. Studies show that, in children, EN has similar success rates as steroids at inducing remission and no risks at all. I don't know the success rates for adults but I know that there are adult members here who have found some success using EN. As far as maintenance, EN is not as successful at maintaining remission as are other drugs, however, for as long as it works... great! There are a number of adults on this site who have used EN to induce remission and as a short term treat when symptoms flare. I believe this is usually done in conjunction with diet. My son's only medication right now is Nexium, an antacid. You'll find lots of info regard Enteral/Elemental Nutrition under the Treatment subforum.

Also, have a look at LDN - again, a very low risk treatment. There are lots of members who have used LDN, and there is also a subforum for LDN under Treatment.

Good luck!!!!
02-21-2012, 03:02 PM   #12
Ness
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Join Date: Feb 2012
Location: Minnesota
well folks,

I need some gathered support and opinions. One thing I have failed to mention is how the disease has made me scared to go on adventures for fear of being "stuck" or wrong place at the wrong time. I know, with time, if I keep this up my world will get smaller and smaller.

I am a freelance videographer. I have the opportunity to drive down to Tennessee and do some filming at a friends house/recording studio. I can bring my computer, work there, stay in this beautiful home and get out my camera as needed to document the studio updates and also take care of some other work during my stay. It would be about 17 days ... and I'll be getting paid some. Which I NEED.

Currently in a flare, tapering off of prednisone. I'm sincerely scared to be away from my loving girlfriend and family in all of this. My life has felt very limited this past year and this would be a huge breakthrough out of my shell if I proceed.

For those who haven't read into my past posts: Crohn's disease, tapering off of steroids, trying 6MP, would still be on steroids during my stay in TN, I get to make a bit of money and have a little "get away". Terrible general anxiety and separation anxiety. About a week after that I'll be traveling to South Dakota for a few days to make some more money with video oriented work.

I need some encouragement or advice!? ANYTHING to get me to do it or maybe why I shouldn't! You all are so helpful.

p.s. sorry for any typos or strange phrasing! Had to make this entry quick!
02-21-2012, 07:00 PM   #13
David
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Go

Heck, chronicle your anxiety and experience with video.

And give this a read.
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