New to forum

[becls]

I am new to this forum and here is my story. I am a 50 year old female and was diagnosed with Crohn's in January 2011. My first year with Crohn's has been a rough one. I have had a small bowel resection, multiple trips to the emergency room and have been on Remicade, 6mp, methotrexate and now on Humira. I am hoping this one will work. I am not sure if this normal or not. A few weeks ago I was experiencing pain in my abdomen, nausea and fatigue, my usual symptoms. I went to my doctor, they did a ct scan and said that there was no inflammaiton in my intestines and now he thinks I also have irritable bowel syndrome. I am not sure what the entire difference is but he put on Xifaxan antibiotic. I am feeling a bit better but still have days with pain and nausea.

I am curious to know if others have IBS and IBD at the same time. I feel like I have been on so much meidication this year. I am ready to fell better and feel so bad so much of the time. I was actually a pretty healthy person until the end od December 2010.

Any advice or suggestion on things I may be able to try would be appreciated.

 

[David]

Hi there and welcome I'm sorry your first year has been a bad one but it CAN be better! First, some questions that will allow us to support you better:

1. Who diagnosed you? The same doctor that now thinks you have IBS? Is this IBS diagnosis doctor a gastroenterologist (GI)?
2. What tests did they perform that led them to a diagnosis of Crohn's Disease?
3. What area of your small intestines did you have removed, how much, and when did you have the resection? What did the pathology report on the resected intestine conclude?
4. Are you on any supplements and have you had your vitamin D, vitamin B12, and folate levels tested?

Yes, you can technically have IBS and IBD at the same time but some of us don't put much weight in such diagnosis.

Again, welcome I hope you become a regular part of our community.

 

[becls]

My GI doctor diagnosed me with severe Crohn's. After a visit to my general doctor in January 2011, who thought I may have had kidney stones, I had a ct scan done, which showed inflammation in my intestines and I was referred to my GI doctor. My GI doctor performed a biopsy which showed Crohn's. On January 14, I ended up in two emergency rooms and spent 5 days in the hospital. I was put on Remicade and after several treatments of Remicade and also 6mp, we could not get rid of all of the inflammation. I continued to have flare ups, so in April 2011, they removed the ileum and cecum portions of my intestines (10 inches). It did get somewhat better, but after several months of Remicade treatments, my liver enzymes elevated and a liver biopsy showed it was caused by the Remicade. In June 2011, I began using methotrexate. In October 2011, I had another flare up, ended up in the ER again and the ct scan showed the inflammation returned in the same area of my intestines, now I am on Humira injections. I still have the discomfort in my side, which has never really gone completely away.

I am not sure about the pathology from the small bowel resection, if the doctor told me about it, I do not remember.

A few weeks ago, I had that horrible pain in my right side, nausea, diahrreha and fatigue again. I went to my gi doctor, he examed me (which when he put pressure on my stomach and abdomen, I thought I would come off the table) he ordered another ct scan and thought I was having another flare up. However, he said the results of the ct were normal and there was no inflammation in my intestines. So he said he believes I may also have IBS and put me on Xifaxan 550 mg three times a day for 14 days and also told me to take a probiotic. I have a couple of days left on the antibiotic but again today I have that pain back in my right side, feel somewhat nauseated and fatigued. I also take a multi vitamin daily.

I have a cbc and liver panel ran every two weeks now. I am not sure if the doctor has checked my vitamin D, B or folic acid. If he did I do not remember him telling me specifically what the results are and I am pretty good at remembering my results. I do know I have been to the doctor and had more tests ran in the last than I have my entire life. I am very ready to begin feeling good again.

I have days that I feel real fatigued, nauseated and have pain in my right side, but I don't bother to call the doctor, because frankly I am very tired of going to doctors and missing so much work from this disease. It has completely changed my life. I worry about going to far from home because of not feeling well. I never know from one day to the next how I will feel when I wake up in the morning. I am not really sure if that is normal or not. Do other people with this disease feel the same or is something not right with me?

Once again, thanks for any input.

 

[Jessi]

Hello and welcome to the family.

What you're feeling is pretty normal for Crohnies. I'm sorry that you have to be going through all of this. I feel this way often. The right vitamins really help with this, though. David sure knows a lot about vitamins. Consider taking any advice he gives.

I hope you decide to stick around with us. This forum brings a great deal of comfort to us. I find answers to so many of my questions here. I'm sure glad you found us. :hug:

 

[David]

Thank you for the detailed response. A few things:

1. You mention you had a biopsy done that confirmed Crohn's, was that via a colonoscopy?

2. You had part of your terminal ileum removed which is where vitamin B12 is absorbed. I would strongly suggest asking your doctor to have your B12 levels tested. People with Crohn's are commonly deficient in B12. People who have had part of their terminal ileum removed are even moreso. Every symptom you currently describe could theoretically be caused by B12 deficiency.

3. Crohnies are commonly deficient in folate, I would request those be tested.

4. Have your vitamin D levels checked as well. It's one many are deficient in.

When you get the results of the vitamin tests, share them here.

5. I'd also look into changes in diet. For example, I'd suggest cutting out gluten for sure, many here have had improvement in symptoms from that. Our diet/fitness forum has lots of other good information.

We're here for you anytime. I really hope you get those vitamin levels tested. It's pretty important for a Crohnie.

Take care, I wish you well!

 

[xJillx]

Hi and welcome to the forum! I am sorry you have had such a tough year. I really hope Humira will be the one to work for you. And being that your scan looked good, it sounds like there is a chance that it is. The symptoms you are experiencing could be caused from IBS. My GI has gone back and forth between me having Crohn's, IBS, or both. It's frustrating to say the least. It seems like when symptoms can't be explained, you're told its IBS. But, regardless, a clean scan sounds like good progress.

I have taken Xifaxan, too, and it did seem to help my bowel movements become more solid. Hopefully, after this course of antibiotics and Humira, you won't have any issues for a long time.

 

[becls]

Thanks for all of the information. I am going to get with my doctor and ask about the blood tests. A few months back, when I was see the liver specialist, he said my B-12 was a little low but did not tell me to take any supplements. I reacted well to Remicade, but my liver did not like it. That is why my gi doc is doing the blood work every 2 weeks, to make sure my liver does not react to the Humira. I hope this is the one for me. I am also going to look into the gluten-free diet and see if that helps. My aunt has celiac disease and is on a gluten free diet.

One of my biggest issues is that the pain in my right side just never seems to go away, some days it is worse than others. Can someone tell me if this is normal also?

I am just trying to find out as much as I can about this Crohn's. I have been healthy us unitl last year and I am not use to having to call the doctor so much.

Thanks again for all the feedback.

 

[Jessi]

If you're having pains on random days and not so much on the other days, it may not be as random as you think. It could have everything to do with what you've eaten that day or the day before.

I suggest keeping a journal of what you're eating and how you feel later, how your BMs are going, etc. This way you can work on figuring out which foods are causing the problems for you, and to avoid them in the future.

Good luck.

 

[becls]

Thanks for info

Just wanted to say thanks for the info. I have been back to my doctor since I last posted. It is not IBS, my intestines were inflamed but did not show on the CT. He did a small bowel study and it showed there. I am now on Humira every week and I am taking Vitamin B12. Still having some trouble a day or two before I do my injection, but not like before. I am feeling better and again wanted to say thanks for the info. I have really learned quite a bit from this forum. I feel like I have been shoved into a new world I know nothing about in the last year and I am glad I found this forum. It is very helpful and informative. :applause:

 

[David]

I'm so glad you're doing better! YAY! A couple things:

1. If you're having trouble just before the B12 injection, talk to your doctor about taking your injections more frequently. How often are you taking them at present?

2. Have you gotten your vitamin D levels checked yet? I'm going to nag you about this until you do It's extremely important.

*hugs*

 

[becls]

Actually I am taking B12 pills. I asked him about it last time I was there but he did not say anything. I think he (and I) were more concerned with getting rid of my pain and other issues at that moment. Then I forgot to ask again. I am going to call Monday. Thanks for the nag. I will start to feel better then I will forget. I hope this Humira works. I did my injection last night, felt bad for couple of, had diahheria yesterday, and pain in my side still some today. Hopefully it will kick in and start working today. Again thanks so much for all of the helpful info.

 

[David]

Ah, I see. What dose of B12 are you taking per day via pills? And have you had your actual B12 levels tested lately?

 

[Kit]

Welcome to the forum and hang in there, it sounds like you are getting on the right track.

Kit

 

[Angrybird]

Just wanted to say hi and welcome I am pleased you are feeling better than you did, fingers crossed the Humira will sort things out and will get rid of the pain in your side. I assume the doc thinks this is related to active disease and once the Humira fully kicks in this will go away?

 

[becls]

I am taking 1000 mcg of B12. Not sure how long it takes for the Humira to kick in. I have been on Humira since November and began injections every week two weeks ago.

Thanks for the welcome Kit and Angrybird and yes, the doctor thinks it is part of active disease. I'm hoping the Humira kicks in alss. I am real tired of all of the ups and downs of feeling good and feeling bad.

I was also wondering if anyone has had a skin problem related to the Crohn's. I have developed a rash and my GI doctor has referred me to a dermatologist because he believes it is related to my Crohn's. It has appeared since I have been diagnosed with Crohn's.

 

[David]

Hi again

With your resection and active disease, 1000 mcg orally is very likely nowhere near enough B12. I strongly suggest having your actual serum levels tested, supplement based upon that, then recheck in say 6 months to see if the dosage is fine, needs increased, or a different method of supplementation is warranted.

Rashes are very common with Crohn's Disease. See our skin forum for threads on it. Often these rashes are due to a deficiency in one of the B vitamins. As the University of Maryland Medical Center recently stated that supplementing just one of the B vitamins without the others can cause imbalances, I suggest you take a complex B vitamin along with your B12. Crohnies are commonly deficient in other B vitamins, especially folate. Let your doctor know that you're taking the complex B.

 

[Angrybird]

Yes skin issues can arise from having crohns. I previously have had round purple welts come up on my legs and I know others have mentioned rashes that look like bad acne.

 

[becls]

I called the doctor today about my blood tests. Looks like I will be seeing him. Not feeling welll, I called him to ask about getting blood test and to let him know I am feeling bad again. Now he says to go to emergency room to be checked. I always wonder if I am just being a wimp when my side begins hurting and I am feeling llightheaded and nauseated. I guess one day I will get use to what symptoms are normal and just have to deal with them and which ones I need to go to er for. Gosh I get tired of going to ER and doctor. I am so not use to this stuff.

 

[David]

You poor thing. Keep us updated on what they find.

*hugs*