Starting the Crohn's Journey

Hi, everyone. I was just diagnosed with Crohn's of the small intestine in April, but I've been suffering with it since January 2012. My visual acuity has been compromised so I can't drive, and I have lost so much weight that many other issues have arisen too. I can't eat much and there is so much pain between my intestines, stomach, and arthralgias all of the time that it can be difficult to get out of bed, and I am in the process of filing for disability.

After several doctors and tons of tests, I finally found a specialist who cares. I tried Asacol and Prednisone without success, then moved on to Pentasa and Budesonide, again with no results. I am scheduled for another push enteroscopy in late August, then I will begin either Humira or Remicade, possibly along with Imuran. I just found out, however, that my immunoglobulin levels are all low, so I am waiting to hear from my doctor regarding a possible change in my treatment plan. I hope that this won't compromise treating the Crohn's, which is probably the cause for the deficiencies since I didn't have them before. Has anyone else experienced this? I just want to be at least semi-functional again and be able to EAT again!!! :sign0085:

I am sure that once you find a plan of medication that works a little better for you, you should be able to live a little better, if not a lot better. I have lost 10kg (22lbs) in the past 12 months and was diagnosed just last weekend. I'm finally on medication and the last few days I have felt it take effect. Yesterday was the first day in over a year that I've eaten 3 meals in a day and it felt great. I am confident that I will get at least some of my weight back. My doctor has put me onto vitamins also which should help. I think most, if not all, people who experience Crohns will experience at least some deficiencies. Once you find some meds that help you, it will hopefully become easier to correct some of those deficiencies.

Hi Stardust and welcome to the community. I'm sorry to hear of your struggles

One thing in your post I'm latching onto is the decreased visual acuity. Have you been to an opthamologist? I ask because Crohn's can definitely affect the eyes and you very much need to be seen by an eye specialist.

Mr. D, thanks for the encouragement. I am glad to hear that your medication is having a positive effect! I have lost about 30 pounds since this began, most of it since last fall, and since I was petite to begin with I am quite underweight currently. I plateaued for a while but was losing again as of my last appointment two weeks ago despite trying to eat more, which is weird because I actually don't have diarrhea or vomiting, just loose bowels. I am really looking forward to having some relief; I can't even remember what it's like not to be in this terrible pain 24/7 and not to be terrified of eating all the time. :ack:

Thanks for the welcome, David! Yes, I have been to several ophthalmologists, in addition to a retina specialist and even a neuro-ophthalmologist. Originally they thought there was something going on with my optic nerve, but when I went to Cleveland Clinic they couldn't find anything structurally wrong so they concluded that it is caused by severe nutrient deficiencies. Apparently even what I am able to eat isn't being absorbed by my body, or so they tell me. :confused2:

Hey there Stardust,

I hope you can start biologics (Humira etc.) and/or immunosuppressives (imuran) soon and that really helps to get your Crohn's under control and you get back to near normal again. I don't know whether the immunoglobulin deficiency will cause problems with starting biologics, it might mean no imunosuppressives though, but as I didn't have the issue myself I can't tell for sure. What is the reason why you doc doesn't want you to start Humira now but only in August?

Hope you get better soon,
Cheers,
A

Did they test for the common deficiencies Crohnies test? Have you been put on any supplements?

Thanks, Alex. Hopefully the deficiencies will just mean no immunosuppressives for now; I definitely need the biologics to start getting the Crohn’s under control. I can’t start treatment until late August because that was the soonest appointment I could get to have the push enteroscopy done again, and my doctor didn’t want to start me on biologics until he could see what the score is. The previous doctor I had who did the first push enteroscopy didn’t do it right and only took a single biopsy that ended up being negative, but he was determined to prove to me that I didn’t have anything wrong so I’m sure that he didn’t take it from the right area. My new doctor is great and he is the one who diagnosed me and said my Crohn’s is severe, but he wants to do lots of biopsies to see the granulomas. I’m supposed to hear from his office early this week, though, about what’s going on with the immunoglobulin deficiencies, and I’m going to beg them to try to get me in sooner for the scope because I honestly don’t think I can wait another two months. I’ve been having a bad flare since Wednesday, and every time I have one now it is worse than before. It’s really scaring me because I don’t want to wait so long that I end up having to have surgery or something. :ybatty:

David, I’m not sure exactly what bloodwork I’ve had done except to say that I’ve had tons of it drawn! As far as I know the only problem was the immunoglobulin levels and the fact that my ANA is high. I’m not currently on any supplements.

Stardust, I would demand that they test, at the very least:

Magnesium, vitamin B12, zinc, vitamin A, Vitamin D, folate as these are common deficiencies Crohnies face or can cause eye issues.

It is absurd that they tell you your eyesight is due to nutrient deficiencies and then do nothing about it. When you get the results, if you're comfortable doing so, share them here and we can provide some additional insight.

Stardust, if you are on a bad flare up and your GI just doesn't want you to start Humira (I am puzzled why the scope he wants to should preclude you from starting it), You may, however, still ask for pred again to treat your inflammation short-term. Although you said it didn't work in the past, it's worth a try again short term until August (please note pred long term is not recommended...). Entocort, by the way, only affects part of the intestine, so it really depends on where your Crohn's is located on whether it made sense to try it.

Apart from all that, as David mentioned, it is also important to see what kind of deficiencies you have. A lot of deficiencies due to malabsorption of food can enhance your Crohn's symptoms and generally be bad for you (problems with eye sight as David has mentioned above).

Anyway, I hope things work out. To repeat, I'd call your doc and ask whether you can't start Humira right away or at least have pred to treat your current flare up.

David, thanks so much for the recommendation. This whole process has been a pain in the you-know-what. It’s so hard to find a doctor who cares and doesn’t think you’re crazy.

Alex, from what I understand, my doctor felt that if I started Humira it might start healing my intestine and therefore he wouldn’t be able to get a positive biopsy or see how bad the damage was. I’ve had such a hard time getting validity from prior docs that I wanted it to be at its worst (that is, not affected by treatment) so that I wouldn’t have to keep fighting for credibility, although this current doc has been really good so far. I was on a low dose of Prednisone (20 mg once per day) so maybe that’s why it didn’t have any effect. The Crohn’s is in the upper part of my small intestine; that is where erosions from the pill cam were noted and where there was scarring/“white spots” after the first push enteroscopy, although the doctor I had at that time said it was just IBS or UC although I had a clear colonoscopy back in November and my symptoms are all associated with the small intestine. I hate to say it, but he was useless. *sigh* I will definitely talk to my doctor about getting me through the next two months if I can’t get the scope done sooner!

I am not a medical doctor, so I don't know for sure, but I have never heard that anyone would not be treated just so it is easier to definitely diagnose you. Your primary objective should be to get to remission, as far as I know the signs of Crohn's will be visible through the scope and determinable through tissue samples regardless of whether your are treated or not.

20mg of pred for how long? Yes, it is quite a small dosage, although I do not know your bodyweight.

If your Crohn's is located at the upper smaller intestine, Entocort wold not work.

I'd still recommend to start treatment with biologics and/or pred right away. First, you want to get better and second, untreated inflammation leads to scaring and problems later on.

P.S. yes, unfortunately a lot of GIs aren't all that competent. I have lived in many countries in the last 15 years and thus changed GIs quite often, so I know that many GIs just don't know enough about Crohn's especially if they aren't really specialized on IBD.

Wow, that’s interesting to know about Crohn’s still showing up even if I’m being treated already! I wondered why the Entocort wasn’t helping at all. I was only on the Prednisone for 2-3 weeks, and have been on the Pentasa and Entocort since April 16. I am down to 84 lb. and am 5 feet tall; my low weight is another thing that frightens me. It seems that the longer I go without proper treatment the worse I feel and the worse my body is, which is of course logical, but the doctor doesn’t seem terribly concerned and said that once I get on Humira or Remicade (leaning toward Humira, though) my weight will come back and everything else should get better too. :yrolleyes:

I will certainly push for earlier treatment when the nurse calls me within the next few days! Thanks for the info!

Hmmm, at only 84lb 20mg pred is sort of ok, you probably could start at 30mg or 25mg if you know it did not work before at 20mg.

In any event, getting you to remission long term is definitely more important and so starting remicade or humira is definitely the more important thing.

Regarding your weight, yes, if you get your inflammation under control you will be able to increase your weight again, I have no doubt. You could still ask for supplemental liquid nutritional bottles (for Crohn's neutral flavor is prefered). They can help to gain weight even while flaring, although somd of them taste questionably to say the least...

I hope you'll get better soon. Stay positive.
Cheers,
A

I’m glad to hear about the nutritional bottles; I can’t tolerate Ensure or Boost right now, and milkshakes are out because I have pretty bad issues with dairy, but I am hoping to avoid parenteral nutrition or an NG tube. I know that everyone is different, but what is reasonable to expect as far as eating once I get started on biologics and hopefully start feeling better? Right now there is hardly anything that I can tolerate, and even the stuff I do eat hurts, and I am only eating small amounts throughout the day—actual “meals” are totally out of the question. I realize that I’ll probably still have to avoid fried/greasy foods and dairy, but is it reasonable to expect to be able to have three meals a day again? I really miss fried fish sandwiches and pizza, but am not getting my hopes too high about eating those things again. Is it just a trial and error process as far as figuring out what I can eat? Sorry to be so clueless; I’m learning as I go along, and any information from more experienced Crohnies is much appreciated! :study:

I can just tell from my own experience. I've been in very good long term remission for the last 16 months or so and have been basically symptom free. I am eating normally, but cut out certain things that you probably know are just not good for Crohn's patients such as onions, deep fried foods, too oily or extremely spicy or too sweet things etc. But other than that (many completely healthy people also can't stomach those) I eat pretty much everything, including pizza. Fried fish (unless very oily ;-) ) is no problem either.

Still, you know, first things first... I hope biologics work out for you, and you'll get better soon, some people experience the benefits of Humira right away but keep in mind that sometimes it takes quite a while to kick in. I would, as David said above, also look into whether you have certain deficiencies, the problem with your eyesight is a bit worrysome.

You already know that diet is important. I would also try to do sport once you feel a better and maybe do something for stress relief like yoga if you are generally easily stressed (not sure, are you in college or working right now?).

Wow, that’s fantastic that you’ve been in remission and more or less symptom-free! I can’t even imagine feeling normal or eating normally again, but I hope to experience that again in the future! I am dreaming of the day when I can eat some of the foods I’ve been craving!

I have heard that the period of time it takes biologics to work differs for each person. I currently work out at the gym when I can because it temporarily helps me to keep the pain at bay; I do some weight training and use the elliptical, mostly, and at home I take walks. I enjoy exercising but don’t want to do too much because I don’t want to lose any more weight and am likely not eating enough to replace what I’m burning off. I’m not sure how much I can safely do so I just base it on how I feel day by day.

I currently only work one to two days per week, and even that is difficult and exhausting for me. I just filed for temporary disability and am waiting for the phone interview on Tuesday.