Hello All

[KarmaForHire]

Hi everyone,

I was recently diagnosed in July with Crohn's. Since I can remember, I always had stomach issues but nothing that really warranted medical attention. On July 3rd, I woke up with terrible stomach pain. I went to work and could only make it through about an hour before I had to speak with my senior about leaving for the day. I went home and tried to go to sleep, but the pain was unbearable. I wound up smoking some pot I got from a friend and that was able to help me fall asleep for a few hours. I woke up and the pain was still there. It was not a constant pain, it came and went in intervals. Come 4th of July, I barely got any sleep and I was walking around my apartment hunched over. Finally, on July 5th, my wife said "ok, that's it, this isn't normal, you're going to the ER". So off I went to start my journey into being diagnosed with Crohn's. I get to the ER and I'm pale as a ghost, barely could stand I was in so much pain, and as my mom put it, I looked like "one of those walking dead things". Seen by a doctor in the ER who sends me for a CAT scan. They found a blockage in my ileum, my appendix was swollen and I had an intestinal intussusception. I was admitted to the hospital where I wound up there for 2 days, probably the worst two days of my life. About half way through the stay, I guess my blockage cleared up, because I literally spent the entire evening on the toilet. Anyways, I was greeted by an extremely nice GI doctor. He's been helping me this whole time since we met at the hospital. After leaving the hospital I was put on a low fiber/residue diet until he could get me into his office for a colonoscopy. I went about 3 weeks ago for it and he diagnosed me with Crohn's. He said there was a lot more affected tissue in my ileum that he had suspected. He said it is mild to moderate however, and prescribed me entocort 9mg. I'm now 3 weeks into the entocort treatment, as well as occasionally smoking pot to get to sleep (I haven't yet seen a doctor to get a prescription, although I am now qualified in my extremely limited state of NJ) and I'm feeling great. I have more energy throughout the day without a drop of caffeine, than I did when I was drinking 3 cups a day just to stay awake. I'm really really hoping that it continues this way, as I don't think I've ever felt my stomach feel this good before, ever in my life. I'm still on a restricted diet, but I'm starting to gain some weight finally! (I was severely underweight for years). Anyway, I just wanted to introduce myself and say hi.

 

[Ali29]

Welcome to the Forum - Good luck with the Dr appt - hopefully he/she will get you on the road to becoming healthy!!

 

[David]

Greetings and welcome to the community. Is the doctor planning to keep you on the 9mg of Entocort for the long term or wean you off? If the latter, what other treatment do they plan to put you on?

All my best to you.

 

[KarmaForHire]

I'm not sure how long the doctor is planning on keeping me on the 9mg of Entocort. He prescribed it to me after the colonoscopy and gave me a follow up call about a week later to see if it was having any affect. I have an appointment with him next Friday where I will probe him for further details into the plan of attack to controlling my Crohn's. I'm also planning on going to a GP in the area to see if I can get a prescription for MM, as I have been apparently self medicating with it for quite some time now.

 

[David]

Sounds like a plan. Please keep us updated!

 

[KarmaForHire]

OK, well my doctor ordered an mr enterography with and without contrast for me two weeks ago. I went in for my followup on Friday and the doctor gave me some bad, but not horrible news. Apparently I've been probably suffering from Crohn's for quite a long time now without really knowing it, my doctor suspects for years, possibly decades. There is about 10 inches of my ileum which has significant scaring and fibrosis. He said there is a strong possibility that I will have to have 10-12 inches of my ileum removed. That was a little shocking, as I did not really know how bad I've been suffering from this. I always thought I just had a sensitive stomach. He also discussed treatment options with me. He said he does not like to push one treatment over another, as they all have their associated risks, however he highly recommended to me that we start with 6mp treatment and see how it goes from there. He gave me another prescription for Entocort, which he said he wants me off asap, and told me to do some research, to speak with my wife, and let him know come next appointment what treatment option I feel most comfortable with. In the mean time, he gave me a PPD test and is having me get blood work done for liver and hep-b screening and a metabolic test (I believe that's what it is). I'm a little bummed, as I didn't realize how seriously sick I was. I look back at my life and get so frustrated now knowing that so many things that affected me were most likely Crohn's related.

 

[alex_chris]

Hey there, sorry to hear that you got more problems than expected.

I would be questioning your doc again on the 6mp front and on his advice in general (wants you off Entocort immediately, usually you would taper down over weeks while other long term meds take effect). In your case from what you discribe under the new IBD guidelines of the American Gastroenterological Society you would be a clear case for biologics treatment (e.g. humira) instead of immunosuppressive drugs such as 6mp. See here http://campaigns.gastro.org/algorithms/IBDCarePathway/.

 

[KarmaForHire]

Sorry, I may have not wrote that correctly, he doesn't want to just take me off the Entocort, he is planning on tapering it down while introducing the new treatment, he just wants to get me off of the Entocort and onto the next stage of treatment asap. The main reason that he said he was suggesting the 6mp treatment, was that he said I am teetering on the age range for those who could develop lymphoma, which he said was a risk of Humira. That alone scares the bejeezus out of me.

 

[alex_chris]

Karma, both immunosuppressives (6mp/azathioprine) and biologics unfortunately increase the risk or cancer, especially lymphonia, actually some studies suggest immunosuppressive have a higher risk involved than biologics.

Well, the "good" thing is even a threefold increase is very minimal overall. E.g. Here for humira:

Lymphoma and Leukemia

In the controlled portions of clinical trials of all the TNF-blockers in adults, more cases of lymphoma have been observed among TNF-blocker-treated patients compared to control-treated patients. In the controlled portions of 34 global HUMIRA clinical trials in adult patients with RA, PsA, AS, CD, UC and Ps, 3 lymphomas occurred among 7304 HUMIRA-treated patients versus 1 among 4232 control-treated patients. In 47 global controlled and uncontrolled clinical trials of HUMIRA in adult patients with RA, PsA, AS, CD, UC and Ps with a median duration of approximately 0.6 years, including 23,036 patients and over 34,000 patient-years of HUMIRA, the observed rate of lymphomas was approximately 0.11 per 100 patient-years. This is approximately 3-fold higher than expected in the general U.S. population according to the SEER database (adjusted for age, gender, and race).1 Rates of lymphoma in clinical trials of HUMIRA cannot be compared to rates of lymphoma in clinical trials of other TNF blockers and may not predict the rates observed in a broader patient population. Patients with RA and other chronic inflammatory diseases, particularly those with highly active disease and/or chronic exposure to immunosuppressant therapies, may be at a higher risk (up to several fold) than the general population for the development of lymphoma, even in the absence of TNF blockers. Post-marketing cases of acute and chronic leukemia have been reported in association with TNF-blocker use in RA and other indications. Even in the absence of TNF-blocker therapy, patients with RA may be at a higher risk (approximately 2-fold) than the general population for the development of leukemia.

Vs. For 6mp
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1774897/

If you go by side effects alone, the increased of cancer is not a reason to choose 6mp over biologics such as humira.

 

[Lady Organic]

why not Pentasa? has he mentioned it? traditional route is 5-asa (pentasa) , then immuno-suppressive such as 6-mp and finally biologics.

 

[alex_chris]

why not Pentasa? has he mentioned it? traditional route is 5-asa (pentasa) , then immuno-suppressive such as 6-mp and finally biologics.

5-Asa for Crohn's has been shown to be mostly ineffective. As a result, new guidelines say Crohn's management long term should either be immunosuppressives or biologics, which then depends on a risk assessment. If a patient is in the high risk category, it is recommended to go for biologics rather than immunosuppressives.

5-Asa remains an important long term treatment for UC.

 

[Lady Organic]

I felt if the doctor mentionned Karma had prolly been suffering for years and decades without major issues, it means its a mild-moderate case of CD. Well , im no doctor, my interpretation may be wrong and I am not familiar with protocols after surgery. I suggested mesalamine, because imo, its best to try the less aggressive option whenever this is possible, if the disease is not too agressive and gets much better with temporary Entocort. it can take some time to find the best medication for a patient. I dont regret the 2 years of ups and downs when my first GI tried with pentasa, sulfa and cortisone before putting me on 6-mp. From his experience, it could be effective, unfortunately, not in my case, well just partially. What I have wished the most is that he would have talked to me about EEN (enteral diet) and to give it a try upon diagnosis or withing those 2 years before starting immuno-supressive therapy.

 

[KarmaForHire]

I spoke with my doctor the other day when I went in to have my PPD test read. He told me that he just went to an continuing education seminar where he presented my case. It was almost unanimous from the other GI's present that I should be put on a biologic, as they feel that I am, as alex_chris has mentioned, high risk of reoccurance. After speaking with my father-in-law who is an anesthesiologist, he calmed my nerves a lot about the risks associated with them. I'm just a bit freaked out by this whole experience, as this is the first time I've ever had something medically "wrong" with me, aside from "normal" stuff. Now that the doctor had mentioned that I'd probably been suffering for this from years, I've had time to think back on my life and it makes so much sense. When I was in high school, I remember being tired all of the time. My parents at one point thought I was on drugs, because I'd come home from school, go to my room and go to sleep. I'd not want to eat and I've been extremely thin most of my life. I remember once in college, I had a bout of about 2 or 3 days of intense stomach pains, throwing up and constipation, the pain was very similar to that which sent me recently to the hospital. That leads me to believe I may have had a bowel obstruction that somehow cleared itself on its own that time. It's just so frustrating to know that so many things that affected my life were most likely attributable to my Crohn's and that because it went untreated for so long, I just suffered in silence thinking it was normal.

 

[syzygy]

I can totally relate with the "sensitive stomach" thing. I always thought I was just a bit more susceptible to food poisoning than most people. I eventually developed periodic bouts of bloating and vomiting that left a few generalists (and me) scratching their heads and minimizing it for about 7 years. It was only 2 years ago that I got things properly worked up with a GI. Only once I got the diagnosis confirmed did I put the pieces together that my old "sensitive stomach" had been part of the issue all along.

 

[alex_chris]

I spoke with my doctor the other day when I went in to have my PPD test read. He told me that he just went to an continuing education seminar where he presented my case. It was almost unanimous from the other GI's present that I should be put on a biologic, as they feel that I am, as alex_chris has mentioned, high risk of reoccurance. After speaking with my father-in-law who is an anesthesiologist, he calmed my nerves a lot about the risks associated with them. I'm just a bit freaked out by this whole experience, as this is the first time I've ever had something medically "wrong" with me, aside from "normal" stuff. Now that the doctor had mentioned that I'd probably been suffering for this from years, I've had time to think back on my life and it makes so much sense. When I was in high school, I remember being tired all of the time. My parents at one point thought I was on drugs, because I'd come home from school, go to my room and go to sleep. I'd not want to eat and I've been extremely thin most of my life. I remember once in college, I had a bout of about 2 or 3 days of intense stomach pains, throwing up and constipation, the pain was very similar to that which sent me recently to the hospital. That leads me to believe I may have had a bowel obstruction that somehow cleared itself on its own that time. It's just so frustrating to know that so many things that affected my life were most likely attributable to my Crohn's and that because it went untreated for so long, I just suffered in silence thinking it was normal.

Hi there again. At least now you have a diagnosis and can be treated. Once you start biologics and thus long term treatment, you'll see that there is a good chance that things get much better. Looking back, it is always the case that we could have done things differently, I for one was struggling without getting to long term remission for over a decade - principally because I lacked information on Crohn's and also wasn't willing to inform myself about all the details necessary for a solid long term treatment. But things are doing well now, so the past really doesn't matter any more.

 

[KarmaForHire]

Well, I guess it's time for a little update. After speaking with a friend of my father-in-law, who is a GI doctor, he has finally calmed my nerves enough about Humira to take the plunge. I spoke with my doctor 2 weeks ago about my decision, which he seemed to be in agreement with. I just got the approval from my insurance and now I'm just waiting on the specialty pharmacy to contact me for delivery. I will probably start on the Humira within the next week or two. I'm both excited and nervous to start, but I'm really looking forward to the possibility of remission.

 

[David]

I'm glad you're feeling a bit better about things. Please let us know how you're doing on it. There is also a Humira Support Group under our Treatment section you may want to join.

 

[KarmaForHire]

Thanks David, I did check out the Humira Support Group. Well, today my GI had me come in today for my initial loading dose of Humira. I was nervous as anything before getting the injections because I wasn't really sure about how painful they would be, etc. The nurse who assisted me was great. She administered the first two injections to me in my thigh and then had me administer the last two myself. I have to say, I was really worried before hand, however they were not as bad as I was expecting them to be. It stung a little bit initially, but that only lasted about 10-15 seconds, mostly while the medication was going in. Looking forward to seeing if it works, but so far so good. I'm really excited about the possibilities of the future!!!