Encouragement Needed!

[Fish2575]

Hi Everyone,

I am super frustrated and discouraged at the moment and need a little encouragement or direction. I am one year post diagnosis, and would have to say I think I am worse off today than I was last year. I am certain that the reason for this is hormonal and time post pregnancy (always in remission when pregnant and for about a year after), and the most discouraging part for sure is the elusive "Norman" and the severe diet restrictions.

I am on 9 mg of Entocort and 2 Lialda twice a day. I have been on a super restrictive diet for at least 6 months. I eliminated all of the Enterolab positive foods after testing last fall (I had been gluten,dairy and soy free already for a year but eliminated eggs and yeast in addition), and I eliminated the 11 antigenic foods even though they were barely registered (I think a total test result of 11 and under 10 is normal) I also started the SCD and for a while eliminated coffee. I have since realized I can have no nuts, coconut, or chocolate, as they all cause an odd swelling in my esophagus (My IgE is normal?) Currently I am only eating bananas and peanut butter in the morning, duck, duck broth, and carrots at lunch, and buffalo and zucchini at dinner. Sometimes I will indulge in something with rice. I am very aware that bananas and peanut butter may be causing me problems, but I haven't excluded them for two reasons....They are literally the only food I look forward to in the day and it is depressing to me to consider deleting them, I took out peanut butter for 4 months and when I added it back it made no difference (granted I was not having Normans, so it is hard to tell anything) and I am seriously afraid that if I delete them I will never be able to have them again. So far all of my attempts to add anything back have failed miserably. At this point I don't know what I would eat in the morning if I took it out (meat gives me a horrible upset stomach in the morning and can't have eggs, but I need protein to balance blood sugars)

I have done a course of Diflucan to get rid of yeast, and probiotics for SIBO, and I take L glutamine and L lysine and vitamin D. I also take Zyrtec (Claritin did nothing for me) and Histame with each meal. All have made an improvement, but it still seems ridiculous to me that I am taking all of these with the Entocort and Lialda and still no normans!

The most recent issue is that I caught a virus from one of my 4 kiddos and have been miserable ever since. (Couldn't get out of bed on Wednesday) I finally added a fourth Entocort (12mg) after reading some things here, and while it has helped with the bowels (still not normal) it has caused my neuropathy to get worse -weird I know, but I also read that prednisone can worsen neuropathy. I feel like I am really not healing at all and I do not know if I can keep up the diet for another year, two, or three for my intestines to heal. My doctor had offered Imuran, and I really don't want to do it, and I feel like I am completely hopeless either way. I have type I diabetes, and I figure that makes me take longer to heal, but my blood sugars have been very normal. A1C is 5.6. To top it off I went in last week to give a urine sample because I thought I might have a bladder infection, but no...no white blood cells, just blood! So now I don't know if I am having kidney problems from all of the meds I am on, or if I am in such a flare that my kidneys are affected!

Anyway, sorry to be so long winded, but I am so, so, so discouraged! I would love some encouraging words!

Susie

[Joefnh]

Hi Susie....certainly (((((Hugs))))) and the best of wishes. This can and often is frustrating. It sounds like you have a good grasp of what things to avoid and what foods work well for you.

I know in my world I have had to go back to the basics a few times now and I'm 3 years into this new world of IBDs. Some possible suggestions would be to back of on any rough foods such as the carrots (raw??) are they well cooked? Are you having other raw fruits or veggies? How about any processed pre-packaged foods

Generally I can tolerate peanut butter, but a few times I find that I need to cut it out for a while when things are aggravated. The other surprise for me was an citrus juices as they can be aggravating. Once things did settle down I was able to add back raw fruits and veggies and even OJ.

As you have a good grasp on what foods bother you, have you tried going back to some basics, well cooked meats that you tolerate and a couple of well cooked veggies. I've done something like this a couple of times and then after eating very simply for a while and I was feeling better, I carefully kept a food journal and I would only change or add a food slowly after several days and then carefully record the results.

At least in my case as I would remove several foods after a while my intolerances would change in that a food I did not suspect was now giving me problems.

This is a real puzzle at times and can be frustrating and I would imagine a hug every now and then is a required 'ingredient'


Take care and the best of wishes Susie...

[DebE13]

Hi Susie

I wish I had some words of wisdom but all I can offer is that I'm dealing with the same thing but hang in there. I've eliminated so much already and some days wonder if I can keep this up. I absolutely love peanutbutter and have had to give it up. It didn't seem to be a problem in the past but now gives me a stomach ache when I eat it. I'm not big on eating meat for breakfast either since I usually feel nauseous until late morning (if I'm lucky).

Big hug to you!

[tex]

Hi Susie,

I'm sorry to hear that you're not making any progress, but I can certainly understand how you feel. I spent a lot of time in that situation, early on. As you probably know, I've never been a fan of taking both budesonide and mesalamine concurrently, since there's little to gain by doing so, and if either one of the drugs causes a reaction, it will overwhelm the other, so that the probability of an adverse reaction from the combination is much higher than the sum of the probabilities of an adverse reaction from either of the drugs independently.

Regarding blood in urine, I don't know anything about the website at the link below, but according to them, Entocort EC can cause blood in urine, so you might want to run this past your doctor:

http://doublecheckmd.com/EffectsDetail. ... 2&eid=3134

It appears to me that they're just basing this on the possibility that Entocort can affect hormonal events, cause thinning of the skin and other epithelial surfaces, and increase the risk of a UTI or kidney infection. Of course, aside from this, It's not impossible that either Entocort or Lialda might be preventing you from being able to achieve remission.



Tex

[CathyMe.]

Hi Everyone,

I am super frustrated and discouraged at the moment and need a little encouragement or direction. I am one year post diagnosis, and would have to say I think I am worse off today than I was last year. I am certain that the reason for this is hormonal and time post pregnancy (always in remission when pregnant and for about a year after), and the most discouraging part for sure is the elusive "Norman" and the severe diet restrictions.

Anyway, sorry to be so long winded, but I am so, so, so discouraged! I would love some encouraging words!

Susie

Susie, I'm so sorry that you're struggling so much still. You poor thing having to deal with this disease in addition to having 4 children...God love you! How long have you been on the Entocort? I'm surprised that your GI prescribed both that and Lialda at the same. My GI made me stop the budesonide (it wasn't helping anyway) before I started with Lialda. I know that we're all different but I had to eliminate peanut butter from my diet. I also don't eat very much fruit anymore, although I will eat an apple now and again. Could you substitute some well cooked veggies in the morning for your banana? I found that even when I was @ my worst during a flare up that I tolerated well cooked veggies. Keep us posted!
Cathy

[Fish2575]

Thanks for all of the encouragement everyone! I almost cried when I got your "hug" Joe, and Deb and Cathy it is comforting to know I am not the only one. Tex, always encouraging to know that someone has made it to the other side!

Tex, I will look into the joint usage of Entocort and Lialda. Am I reading it correctly that it is possible for one of them to cause problems? I tried stopping the Lialda a while back, and I seemed to really need it. This is so contrary to what I have read about others who have gone off of it an noticed it wasn't doing much.

Joe and Cathy, definitely all of my veggies are well cooked, but I would love some suggestions of other veggies to thow in! I tried peas (absolute no go) and broccoli , and I am just kind of stumped as to a low reactive veggie. I basically just eat carrots and zucchini, although I sometimes throw in some butternut squash and a little celery. What other veggies are you able to tolerate. And Joe, good reminder that sometimes in a flare we can't handle things that are otherwise ok!

Thank you all so much! This was just what I needed

[CathyMe.]

Hi Susie,
I have been keeping a food log so can tell you what I have been eating....I find I tolerate spinach, kale, mushrooms, peppers, and onions but I cook them all really well. I also have done broccoli, carrots and califlower and have really been liking broccoli slaw (shredded broccoli, carrots, cauliflower) again cooked pretty well. I have been eating ALOT of fish as this tested low for me-so I will throw in in a piece of haddock for breakfast or crabmeat or shrimp. I pretty much do the same thing for lunch and dinner I've been making a smoothie with veggies, vegan protein powder, ice, coconut milk, etc. Very YUMMY and so nutritious. I also find I tolerate coconut oil pretty well so have been adding that into my diet, cooking with it, sprinkling coconut flakes on my veggies, etc. I am working with a dietician and was eating apples with almond butter or bananas with almond butter and she suggested that I take this out of my diet for awhile as, "a high fructose load can result in malabsorption" and, "Nuts and nut butters are problematic in some cases too". I so understand when you've been eating something and then have to eliminate it. It really stinks but you may want to try to see if it helps you.

[Leah]

Oh Susie. I feel your frustration. This disease can be so hard. Can you tolerate grains? I know you have diabetes, but could you possibly eat rice or corn chex with almond milk in the morning?

You said you can't eat nuts. Is it because you tested positive for them?
Peanuts are in the legume family ( like soy), so it's probably not a good idea to be eating it right now. If you didn't test positive for nuts, maybe almond or sunflower seed butter would work. I had to give up peanut butter also, but I am noticing that I can tolerate a little bit now that I am more healed.

Many people do well with bone broth. Have you tried making a batch?
Sweet potatoes were always really good for me... yummy and filling. Apple sauce too.

Tex may be right. Sounds like you are on too many drugs to even know what is working or not working or making things worse.

I will be sending good thoughts your way
Leah

[tex]

I tried stopping the Lialda a while back, and I seemed to really need it.

Then maybe the Entocort is the problem. If you discontinue taking it (temporarily), you should be able to tell within a day or two if it was the problem. If your symptoms don't change, or become worse, then obviously it's not the problem.

Tex

[Julie]

Hi Susie,

I used to be on entocort too. I got sick one week a month. Apparently, that was a side effect of the entocort. I got a lot better without it but of course, I needed to take it a few months to heal. When I finally got of entocort, the side effects dissapeared within a week or two. The side effects I had were: my face and belly were swollen, I had stomach pains, I had diarhea, I felt this pain in my intestines, belching, feeling tired, feeling depressed, I couldn't eat properly, even drinking water was a problem, strange sounds coming from my abdomen, rash, ...

You need to know that entocort has an effect on your adrenal glands. That's why I felt stressed out, depressed, at least, that's what my GI told me. I even had mood swings.

I feel better now and the flares seem to stop. I still have little pains and I am very tired, but I can live with that.

I have been sick for a year, the flares lasted for a long time. But now I am better and trust me, you will feel better too. Give it some time, don't stress about it. Try to be as calm as you can, the more stress, the more pain.

When I do have flares, I don't use any butter in my meals, I eat glutenfree, dairyfree and soyfree, just like you. I never eat raw veggies since I don't tolerate them. I hope I helped you out. I wish you the best of luck and please keep us posted.

I hope you will get better soon. My best of wishes,

Julie

[Rosie]

I don't post very often any more, but do visit quite frequently and saw something that I want to comment on.

Currently I am only eating bananas and peanut butter in the morning, duck, duck broth, and carrots at lunch, and buffalo and zucchini at dinner.

Are you eating buffalo because you think you might react to beef? I tried buffalo as an alternative to beef, and found that I reacted to it. I did a bit of research, and discovered that most "buffalo" are actually hybrids with cattle! So you might want to try substituting some other meat for buffalo if that's the case and see if it helps.

From Wikipedia
Since American Bison seem to cross breed readily with domestic cattle, many crosses have occurred, either deliberately or accidentally. The result is that, of the estimated 500,000 bison now present in North America, it is believed that only 15,000 to 25,000 are purebred bison, without any known domestic cattle genes. Furthermore, many crosses of bison and cattle produce animals which appear very much like normal bison, so appearance is not a good indicator of which animals are hybrids and which are not. This creates problems in establishing and maintaining new purebred bison herds. Some bison, such as the Antelope Island Bison Herd have only a few cattle genes, but almost all state herds have similar genetic contamination and most private herds are even more strongly hybridized.

Rosie

[tex]

most private herds are even more strongly hybridized.

Good catch! That's very true, and in addition, most ranchers believe that some percentage of hybridization helps to make buffalo (beeffalo) grow faster, and improves the flavor of the meat, so many of them have done intentional crossing in order to "reinvigorate" their herd.


Susie,

Cervids cannot cross with domestic cattle (bovines), so any of the deer family (red deer, elk, moose, whitetail deer, caribou, etc.) cannot contain bovine genes, and their meat should be a safe alternative to beef, if you are sensitive to beef.

Tex

[Fish2575]

Loving all of the tips! This is really what I needed!

Cathy-that is very helpful, I think I will try to throw in some mushrooms, broccoli, and cauliflower. I would love to do peppers, but they always have given me bad heartburn

Leah-you have given me a good reminder that I do not have to give up all grains. I did test positive for antibodies to all grains except rice, and also to all nuts! I tried testing nuts and coconut, but they make my throat swell up! But I will take your cue and remember my rice chex and rice milk. I had been trying to do SCD, but without all of the good things to eat (eggs and nuts), it has been super hard! I tried sunflower seed butter this morning, and I do make bone broth and drink a cup every day! Sweet potatoes are a good idea too.

Tex and Julie-Oh My! I guess I need to consider that one of these meds may cause more harm than good. I started out with Entocort last November and it seemed to help right away and very well. My doc tried to taper me quickly and all of my symptoms returned. I was on 3mg of Entocort when she started me on Lialda, which helped at the beginning, but not for long. Then she upped me back to 9mg of Entocort (which was better) and had me stay on the Lialda. Based on that, which would you assume I should try eliminating first?

Rosie-That is very good information, and I have wondered about the buffalo. I actually did not test positive for antibodies to beef, only to tuna and chicken, but chose to try buffalo because beef seemed like it was possibly causing a problem.

And Tex, my husband keeps trying to get me to try bear I am sure you are correct that I would do better with more true game meats

Thanks again everyone, my spirits are definitely lifted! Susie

[Lesley]

Hey,
Sorry you are feeling lousy. The people who have given you tips are better at this than me. I won't try to add anything as my experience is so different to most of those here.

I can just add a few more hugs for you. I know that helps.

[Fish2575]

Hugs are wonderful Lesley! Thank you!