My Introduction and Some Questions

[haon8]

Hello all, I'm new to the forum and wanted to share my story. I'm a 22 year old guy, and I've had Ulcerative Colotis for almost a year now. It started very suddenly when I was 21 and I had just returned to college for my final semester of my senior year. I lived in a constant flare for about 4 months during this time, and I didn't see anyone for it as I didn't know anything about who was available medically in the area. Thanks to some help from a good family friend (who is a leading pathologist/blood expert, and who also has Coeliac disease), I managed to make it through those few months.

When I graduated and got home for the summer, I went to see a GI at the recommendation of my family friend. I had a colonoscopy in early June and was officially diagnosed with UC. I went on a course of prednisone and Lialda which were hugely helpful, but after two months or so (I was only on the pred for a month), I flared again. I went back on the pred, but this time it didn't help. I also tried some other mesalamines, but none of them were effective. I had a flex-sig in mid-September, and my GI found that the colitis had gotten worse. I stopped all mesalamines, went on another dose of prednisone, and things improved. It seemed pretty clear that I had become intolerant of mesalamine, and this was later supported when I tried going back on Asacol a couple of months later and very quickly had a bad reaction.

My life has changed even more in the last few months, as I had to move to New York City on short notice in late September for a job. I had to change insurance, get a new PCP, and find a new GI. I've been seeing my new GI for a couple of months now and she seems very good, and we've been trying to find a long-term way of keeping my colitis under control. I've been on Humira for about 5 weeks now (4 initial injections, 2 injections 2 weeks later, and now a 40mg injection every 2 weeks), however I began flaring a couple of weeks back. This isn't too surprising, since my last course of prednisone ended about a week and a half before I started on the Humira.

So that's pretty much where I'm at right now, though I have a few questions. First off, to anybody who is on Humira; how long did it take for you to see any change? I know that everyone is different, yadda yadda, but I just want to make sure that I shouldn't necessarily be expecting any improvement yet. Additionally, my new GI wants me to do another colonoscopy. My first colonoscopy and my flex-sig were done by my original GI, and my new GI essentially says that any GI will want to see firsthand what's going on in a patient's colon. I feel uncomfortable with having to do yet another colonoscopy because I know exactly what's going on with me, and I just don't want to have to deal with the prep and procedure again. I was wondering if you all could tell me whether or not a colonoscopy for every new GI is an acceptable practice, and if I should go along with it.

Thanks for the help, and I look forward to speaking with you all!

 

[Clash]

Welcome to the forum.

It is fairly common practice for a new GI to want to do a scope especially is some time has passed between the previous scope. You could share your concerns with the new GI because ultimately the decision is up to you. The worry would be though that not only is the disease present but that it has spread and that could direct treatment in some instances.

I hope you find some relief soon!

 

[haon8]

Welcome to the forum.

It is fairly common practice for a new GI to want to do a scope especially is some time has passed between the previous scope. You could share your concerns with the new GI because ultimately the decision is up to you. The worry would be though that not only is the disease present but that it has spread and that could direct treatment in some instances.

I hope you find some relief soon!

Thanks! I have talked with her about it quite a bit, but my natural concern is that she won't continue treatment if I don't do a scope (I haven't asked her this directly). I do appreciate that she was willing to start me on Humira without having done a scope first, though.

When you talk about time having passed between the previous scope, how much time are you thinking? It has been about 4 months since my flex-sig, which was about 3 months after my colonoscopy. My thoughts on this are that I could have a scope done every few months for the rest of my life to ensure that the disease isn't progressing, but there's going to come a point where the information gained isn't worth the trouble of doing it so often.

One thing she did say that my first GI didn't mention is that after 8 years of having colitis/Crohn's, the chances of getting colon cancer increase by 3 times and it is recommended that the patient have a scope done every year. I suppose I'll cross that bridge when I come to it, but until that time, I'm just focused on dealing with what's going on right now.

 

[Clash]

A scope isn't usually done that often. My son has had one every year, it has worked out that way due to his disease not being controlled. I can understand that since she is new to your case that she would want another scope. A flex Sig doesn't see that far so I would discount it as far as time passes since last testing. 7 months isn't that long, you are right and I do see your point. But to answer your original question, I do think it is common for a new GI to request a scope, especially if the disease is not under control.

 

[northwesterner]

One thing she did say that my first GI didn't mention is that after 8 years of having colitis/Crohn's, the chances of getting colon cancer increase by 3 times and it is recommended that the patient have a scope done every year.

This is the current best practice for long-term IBD patients. I went years between scopes but now that I've had the disease for more than a decade, the frequency has increased in the name of colon cancer risk.

 

[Cornelliz]

I have Crohns, and have for 20 years, and find that an annual colonoscopy helps my physician keep a good eye on what's going on, where inflammation is and any areas of concern.

Since you are in NYC, one tip I can give you is to check out the Jill Roberts Center for IBD. It is associated with New York Presbyterian and Cornell Medical School (their office is at E70th and York), and it's a practice that focuses solely on Crohn's and UC patients. They are WONDERFUL!

 

[haon8]

Thanks to all for your replies!

Clash: Ok, thanks for the info. Naturally, I'm not eager to have a scope done so often so I've been trying to make sure that it's both medically necessary and in my best interest.

Northwesterner: How do the annual scopes go for you at this point? Is it a matter of routine for you now, or do you still feel that it's a chore?

Cornelliz: Has your GI ever found any surprises regarding the inflammation itself? By that I mean, does the amount of inflammation ever contradict how you're feeling personally? In the two scopes (or scope and flex-sig) I've had so far, the findings have reflected how I've been feeling. The flex-sig showed worse inflammation than the first scope, and at the time I was indeed feeling worse.

And thanks for the GI info. I'll look into them, but I would be surprised if my insurance covers them. The nice thing about being on Medicaid (as I mentioned, I'm a recent graduate who's still working in a series of internships and part-time jobs) is that I pay nothing out-of-pocket for doctor visits and have a $1 monthly copay for my Humira. The downside is that my insurance is very picky about the doctors I see, to the point that I wasn't able to find any GI specialists (per se) who fell within my coverage. My current GI is an internist with a specialty in gastro. I think there may be a natural stigma here, but I wouldn't necessarily suspect any reason to think that she's worse than a GI specialist. Heck, my first GI was a D.O, an area which seems to have a similar stigma, and he was a real wizard.

 

[Cornelliz]

I wouldn't say that they've found any "surprises" necessarily, but at times where I've felt that I was basically in remission, they've found inflammation, which meant that I was more attentive to my own care, medication and treatment than I probably would have been. I also have a stricture that they've been monitoring - its not something that will necessarily need surgery (keeping fingers crossed), but it's nice to know that they'll probably catch it before I end up with an obstruction.

I think all of the docs at the Jill Roberts Center do accept Medicaid, so it's worth a try if you're interested in checking them out.

 

[haon8]

I wouldn't say that they've found any "surprises" necessarily, but at times where I've felt that I was basically in remission, they've found inflammation, which meant that I was more attentive to my own care, medication and treatment than I probably would have been. I also have a stricture that they've been monitoring - its not something that will necessarily need surgery (keeping fingers crossed), but it's nice to know that they'll probably catch it before I end up with an obstruction.

I think all of the docs at the Jill Roberts Center do accept Medicaid, so it's worth a try if you're interested in checking them out.

Thank you very much, then. I will definitely check them out! They are who you go to regularly? And is there one doctor there who you typically see, or are you familiar with a few of them?

 

[northwesterner]

I still feel it is a chore... Miss a day from work, have to get someone to drive you to/from the procedure, etc.

 

[wellen1981]

Not sure if this helps but it is just my outlook on colonoscs...

Having had the procedure without any sedation (not my choice!), I can see why diff specialists when you change, would want to scope and I am actually about to request the procedure soon again for myself as it is only in the patients interests for a current visual image to happen (and potentially biopsies) if either it has been a while and/or if changing to a different specialist.
I mean you want the new specialist to be in the strongest position of knowledge regarding your present condition right?
You don't want them acting on a guess about the current state and condition of your insides do you.

This is just my stance on things and I am not saying it is how everyone should be but hopefully you see the sense in the reasons I gave for why I am ok with the scope again (I will be having sedation from now on though for sure!).

 

[Grotbags]

Not sure if this helps but it is just my outlook on colonoscs...

Having had the procedure without any sedation (not my choice!), I can see why diff specialists when you change, would want to scope and I am actually about to request the procedure soon again for myself as it is only in the patients interests for a current visual image to happen (and potentially biopsies) if either it has been a while and/or if changing to a different specialist.
I mean you want the new specialist to be in the strongest position of knowledge regarding your present condition right?
You don't want them acting on a guess about the current state and condition of your insides do you.

This is just my stance on things and I am not saying it is how everyone should be but hopefully you see the sense in the reasons I gave for why I am ok with the scope again (I will be having sedation from now on though for sure!).

Couldn't agree more, I had aggressive Crohn's for 26 years, and was very very grateful for all those colonoscopies as they detected pre- cancerous cells, which led me to having my entire colon removed and then grade A cancer cells on biopsy, so to my mind, those procedures are a life saver.

 

[haon8]

I mean, I definitely want to make sure that I have current information on what's going on with my disease, but like I mentioned earlier, there has to be a point where the information I get isn't worth the frequency of scopes. I could get a scope every few months for the rest of my life to make sure I always know exactly what's going on, but at that point it wouldn't be worthwhile. Frankly, the scope itself isn't even that bad since you're out for the whole thing. The prep is an absolute nightmare.

I have honestly thought about having my colon removed, but I haven't had the disease long enough to warrant doing it (not to mention that I don't think any GI would go along with it). Still, it would be nice not having to worry about the disease, medication, scopes, or colon cancer constantly for the rest of my life. I imagine it would be pretty terrible to deal with the disease for a number of years, only to find out down the line that the colon needs to be removed anyway.

In terms of sedation; I had my flex-sig without sedation (primarily due to cost - this was before I had the insurance that I have now), and while it wasn't terrible, I wouldn't consider having a full scope done without sedation. The 10 or so minutes that the flex-sig took was about the most I could bear without sedation. And at least for the time being, the cost isn't a factor considering my current insurance.

Anyway, I got in touch with my GI today and we're switching over to Simponi. She said that because the Humira hasn't worked in 5 weeks, there's very little chance that it will start working given more time. Hopefully, the approval for the Simponi is smoother than it was for the Humira (which took a few weeks to get done).

 

[Clash]

They only gave the humira 5 weeks? That is not really a long time. Maybe it differs with CD and UC but that is shorter than the time generally stated.

Also, I don't even think you could count the flex Sig since it sees such a very small portion of the colon. I think once this new GI did a scope you probably wouldn't require another for some time unless of course problems were to arise. I know seven months doesn't seem like that long between scopes but since you haven't been able to quell the inflammation in that time then the progression of the disease could've changed which you would want to be on top of. Also just because the flex Sig mathched your symptoms that doesn't mean further damage had occured further up since your last colonoscopy.

 

[haon8]

Oh, we have been able to take care of the inflammation just fine. The issue has been finding a drug that I can use for the long-term. I have responded great to corticosteroids, but aside from the fact that my new GI doesn't like them (and I don't blame her, although I hadn't noticed any significant side effects in the times I used them), they aren't a long-term option anyhow.

The flex-sig was more to make sure that I wasn't suffering from an infection or anything like that. In the few weeks leading up to it I was in a bad flare, and I wasn't responding to prednisone, which my doctor was concerned about. The pred I used for the month following my first scope worked wonders, as did it when I was on it for the 2 months following the flex-sig. I'm certain that the pred didn't work for the time leading up to the flex-sig because I was also on mesalamine, which I think I had become intolerant to. I felt much better the night following my flex sig (which was the same day I stopped the mesalamine and began my 3rd course of pred). I know that pred works quickly, but a matter of 8 hours or so seemed too optimistic, so I had to associate my problems with the mesalamine.

Anyway, in terms of the Humira, I know that some sources say it can take months to reach full effectiveness, but I was seeing absolutely no benefit for over a month. We could have stayed on it for longer or tried increasing the dosage, but my GI was pretty sure that I should have seen at least a minor benefit already if it was going to help at all.

 

[haon8]

Hello all, I just wanted to provide an update. I'm still waiting on approval for the Simponi; gotta love the speed and efficiency that insurance works at. In the meantime I've stayed on the Humira, but at 8 weeks in, I'm still not seeing any benefit. About 2 and a half weeks ago my GI prescribed some high doses of antibiotics (2000 MG of Ciprofloxacn and 1500 MG of Metronidazole per day) that I took for 5 days. I actually experienced a bit of relief, but it went away the day after I ran out. Even if they did help, I don't know how much they would do if the dosage was lowered so that I could take them over a longer period of time.

In other news, I haven't been able to get in touch with her for the past week and a half, which hasn't inspired much confidence. To my understanding she had some kind of in-training or similar function last week, but she should still have been able to call. I was planning on returning to New York this weekend, but I don't know if I'll be able to since I'm still flaring. I tried getting in touch with my previous GI, but he's on vacation for the week. I also called my PCP, but I think he's out of the office due to the massive storm. Hopefully today I'll hear something back from someone that will help me out.

 

[sinamoshelp]

The reason you aren't seeing benefits is because all the drugs don't work. Stop eating all dairy and gluten. You have to repair your intestines. So, the way you do that is that every morning, you take 2 tsp slippery elm park powder with water and drink it. Then, you make a spinach, veggie, fruit, water kefir shake. Just blend it up. So, that nutritious shake goes down your intestines. Think of it as a primer. Okay. That will sit in your colon. If you are constantly going to the bathroom, you need to find ways to hold on to it. Medical marijuana can help with urges, but you really have to be disciplined. Then, you need to stop eating all gluten and dairy. There are plenty of rice, potato, and corn substitutes to get your calories. Anyway, if you do this everyday, you intestines will heal and you will cured like I am. I will never go back to gluten, because I know what it does inside the intestines. It basically doesn't break down, so when it stretches, it can irritate your insides. I actually am able to do dairy, which is kewl, but I still don't get crazy on it. Anyway, if you need any help, just let me know. You don't have to live with this condition.