My life with Crohn's

[501mandy1332]

Hi, I have been reading a lot of posts on the forum for months, and thought I should finally talk about my Crohn's..

I am a 36 year old mother of three daughters, diagnosed with Crohn's at 23.

I was diagnosed with UC when I was 12. I had blood in my stools and severe depression. I was treated for that until my early 20's.

When I was 18, I started having severe cramping and constipation. I was very embarassed about the gas and other symptoms, that I never told anyone, (including my mother) just how bad I felt.

I had my first daughter when I was 20, with no complications.

I got pregnant with my second daughter when I was 23, and that is when the Crohn's reared its ugly head! I only gained 6 pounds when I was pregnant, ( I gained 50 pounds with my first), I had diarrhea everyday with tons of blood in my stools. I kept telling my OB-GYN, and he never did anything. (don't think he could do much while I was pregnant) I had my baby in March of 1999, and I was diagnosed with Crohn's two months later.

I was put on pred, and asacol. I was told it was a mild case. I lived in denial of having the disease for years, and never went back to the doctor after I stopped having the blood in the stools (BIG MISTAKE!!)

I woke up one morning in Nov. of 2007, with the worst cramping I had ever had. My husband took me to the ER and I told them I had been diagnosed with Crohn's, but hadn't been to the doc in years. Instead of doing an MRI on my intestines, they tell me I have a bacteria infection, and I should go to my OBGYN. I did, and he gives me antibiotics, without giving me any exam other than a pap smear. When you weigh 120 pounds, and are a girl in your early 30's I think they automatically assume you are a crack head or something, they never made me feel like they really thought there was something wrong with me that I hadn't caused! The cramping continued, and I went back to the ER, and they finally call in a GI doctor, he treats me for a Crohn's flare with prednisone and Pentasa. It helped for two months, until he started decreasing the pred.

That is when the blockage started. The section of the small intestine that meets the large intestine was completely blocked. 12 inches was removed. I have never felt better since it was removed, until about 6 months ago, I have another flare!! I am on entecort, pentasa, and humira. I also have a hard time keeping the potassium up, went to ER last week thinking I was having a heart attack, turns out potassium was just way low. He also gave me vallum, which I didn't know I was allergic to, so back to ER with crazy hallucinations! I did capsule endoscopy Friday, and am waiting for the results. Never boring with this disease! LOL! I suffer with a lot of depression, that no one seems to understand. This disease is not like diabetes or cancer, that everyone knows about. It, in my opinion, is the most embarassing disease out there. I have a VERY hard time talking about it, and it took me years to even admit that I had it!

I had another baby girl in March of 2010, she only weighed 5 pounds and 11 ounces, but the doctors said they never thought I would carry her without causing another flare, but thank God the flare didn't start until after she was born. They told me when I got pregnant with her, that there was nothing that I could take for the Crohn's that wouldn't hurt the baby. The pregnancy wasn't without complications, but she is a perfect and healthy two year old now!!

Anyway, this is the first time I have ever talked about my disease to anyone outside my family. I am totally embarassed to go out much, cause of the bathroom issues, so I don't have any friends to talk to. Just have my incredible husband, my mom, and my three girls.

This forum has got me through a lot of depressing days, Thank all of you so much! Please let me know if I can help any of you, I would like to return the support that you all have given me without even knowing I was here!

I hope you can make sense of what I was trying to say, I am not good at telling my story. Thank you all so much!

Mandy

 

[Jennifer]

Hi and welcome to the forum!

There are tests and certain medications a woman can take while she's pregnant. Seems like you had the unfortunate experience of dealing with some pretty dopey doctors in the past. I hope you're happy with your current GI and treatment. How are you doing now?

 

[501mandy1332]

In the middle of flare right now. Yes, I have had some terrible doctors. I have had Crohn's for 13 years, and I still don't really know what it is! The GI doctor I have now seems like he is so busy, I had to wait over a month to get it for an appt. and that was after I had my family doctor call for me. I live in a very small town in Arkansas, and there are not very many doctors to choose from. I am just a country girl, and have always been taught to just suck it up and not complain, so that is pretty much what I have done.

 

[David]

Hi Mandy and welcome

I'm so sorry to hear of all the troubles you've been going through. Various things:

1. I'm glad they've given you a capsule endoscopy. Please let us know what they find.

2. How long have you been on the Humira for?

3. What are the SPECIFIC symptoms you're experiencing right now?

4. Have you had your vitamin B12, vitamin D, and folate levels tested? If so, when, and what were the specific numbers?

5. Have you ever heard of enteral nutrition? It's a wonderful treatment option that can really help a lot.

6. Have you made any dietary changes?

Let's start there, shall we?

Oh, and that "suck it up" thing? Maybe that works if you fall and skin your knee but when it comes to Crohn's Disease it's a REALLY bad idea. That's like saying when your clothes catch on fire to suck it up, it'll be fine. The only difference is the fire is inside your gastrointestinal tract.

We're here for you!

 

[Beebop]

You poor person! Your story sounds horrible. I hope that they manage it better this time and you find more on to it doctors. My friend (who also has Crohn's) once said to me that the more you jump up and down the further you get which is really sad but true. I am learning that you need to do your research and be not afraid to challenge an opinion. Anyway I wrote because like you I have kinda just gone into a denail about my crohn's. Until this forum I had stopped even really thinking that i had it... I know how easy it is to do. Anyway I hope things get better :0)

 

[501mandy1332]

I have been on Humira for about 5 months. I will know the result of the capsule endoscopy Wednesday. My main symptoms now are cramping, diarrhea, and major bloating (feels like a stuck watermelon, sometimes). I am also SO TIRED!! My potassium was at 3.7 last week, so I can't blame the fatigue on low potassium, anymore. I am going to ask the doctor about B12 next visit. I am starting to learn how to be a "squeaky wheel" with my doctor, and to start questioning his opinions more. It is sad to say, but from all my experiences, the main thing that I have learned is that the doctors are wrong just as often as they are right. Not their fault though, because after all, we are all human, and they are "practicing medicine" not miracle performers, and with every mistake made, a good lesson is learned. By the way, the way I handled it for years, was if I don't think, or talk about the disease, it will just go away. It does NOT work!
I am very hard headed and stubborn, so it took a lot for me to admit that. I also make tons of "crappy" jokes about it, now. It seems to help me, and my family deal with it better. oo:

 

[David]

Vitamin B12 deficiency is definitely a common cause of fatigue in Crohn's Disease, I'm glad you're going to ask about that. In addition,we have a good wiki entry on possible causes of fatigue you may want to read. Maybe some of them might be worth discussing with your doctor.

 

[Amy (worrywart)]

Just wanted to welcome you to the forum Mandy and reassure you that your not the only 1 who gets embarrassed and depressed with this poxy disease ! Anywhoo this is a wonderful place to come and talk about your issues , we're all in the same boat and we leave our dignity beside the laptop , you can talk about anything with these guys ",)
Hope u get sorted hun, keep the chin up,
Hugs from Ireland xoxo

 

[501mandy1332]

I recieved the results from the capsule endoscopy today, it said it showed "significant inflammatory response in the very distal portion of the small bowel, which is consistent with Crohn's disease." What does that mean? My doctor only said "I suspect the Humira will help control this". I also called my PCP and my GI doctor this morning, and neither have ever checked my B12. They said insurance companies rarely pay for this test, so they don't routinely check for it. I always thought when they said they were doing a "complete blood work up" they were checking for everything. Didn't realize you have to ask for such specific tests. I have had 12 inches of the terminal ileum removed, so I really feel like my B12 is low. Thanks so much for all of ya'lls help. I would have never known to check for these defiencies without this forum.

 

[David]

Hi Mandy,

What that means is they think you have active Crohn's Disease in what's left of your terminal ileum.

In my opinion, not bringing up the idea of testing for B12 when you've already had a terminal ileum resection, are experiencing depression, and are extremely fatigued is... not good, at best.

B12 isn't that expensive of a test. PLEASE get it done and get the actual number they come back with. It would be absurd if your insurance doesn't cover it, of course, insurance companies tend to be exactly that.

As for the Humira, if you're still feeling terrible, you may want to discuss the idea of a shorter interval between dosages. After 5 months I would hope to see a better result from a capsule endoscopy.

I'm also going to reaffirm discussing adding enteral nutrition to the mix with your doctor. You want to get that inflammation under control as fast as you can and EN can help a lot with that.

 

[LaLaNapa]

I suffer with a lot of depression, that no one seems to understand. This disease is not like diabetes or cancer, that everyone knows about. It, in my opinion, is the most embarassing disease out there. I have a VERY hard time talking about it, and it took me years to even admit that I had it!
Mandy

I am SO with you on this! At first my Dr did think i had IBD, but than later due to his inconclusive tests, said it was IBS and just caused by my inability to handle stress. Of course, being on the "Rx-of-the-month" Club with an insensitive Dr did nothing to HELP the stress!

I do a lot of research across the board. I read books and sites by Dr's and official organizations, and I look in to alternative therapies. But I took issue recently when I read what a Dr called an "authority" on IBD said: that it's like diabetes and you just have to take your meds. Anyone who experiences this knows you can go along just fine and still hit a flare, meds or not. And a diabetic can test their blood and know right then if they're sugar levels are going up - I can't take a test after I eat something and know, "uh oh here it comes". And yes, a diabetic only has to say they have that disease and people know what it is and maybe what they go through. But say you have IBD and you get a "huh?" reaction. Like I am going to talk about my inflamed intestines with anyone? That's not a pleasant dinner conversation. (I end up lying and saying I have "tummy troubles" and then get offers of antacids. If only that was it...)

Like many here will say, everyone is different and it seems to take a lot of trial and error to figure out what works for you. That in itself makes me crazy and depressed. I feel it should be like my checkbook and I can figure out the missing item and make it all work in the end.

And as for embarrassing, I know what you mean. I hate turning down invitations to friends' houses for dinner, so afraid that my guts will start an after-dinner theater program of gurgling and gas bubbles. :yfaint: Or god forbid you are in a store and suddenly really have to find a bathroom and leave all your purchases somewhere.

So hang in there, Mandy! I'm one of many that feels your pain. Just know that next time you feel depressed there's a lot of us that would reach out and hold your hand if we could reach.

 

[SherryLynn]

Good Luck, your story sounds a tad simular to mine. Wanted to post here so that I can be reminded to follow your story.

 

[501mandy1332]

Well, I went to my GI today, appt. was not as bad as I thought it would be. He said I could cut back on the Pentasa (he says it might be making my D worse). He showed me pictures from the capsule endo. and they weren't as bad as I thought they were gonna be, either. I also found out the my B12 level was 315. He said it was in the normal range, so he wasn't too concerned. I told him I had started taking sublingual B12 on Monday, and I thought it was giving me more energy. He said I should keep taking it, if I thought it helped. (I didn't start taking it until they had done the blood work, I wanted to get a result before I started taking a supplement). He also said all of my other blood counts were normal. I just don't know why I feel so tired and have no energy. I'm going to blame it on the flare for now, and continue with the B12. Don't know what else to do. Any advice would be greatly appreciated. Thanks!

 

[David]

Mandy,

The current reference range for B12 is terrible. According to this paper, 50% of people with a B12 level between 200 and 400pg/ml are in fact deficient. Point being, flip a coin. Heads you're deficient, tails you're not.

My point here is there is a VERY good chance you're deficient and that can be causing your fatigue (did you check the wiki entry for other possible causes?)

What dose of B12 are you taking and how often? In my opinion, you want to get your B12 levels, at the very least, above 500 pg/ml and keep them there.