New w/ Crohn's.

[CharBarSprStar]

Hello. My name is Charlotte. I'm 27 years old, and I was diagnosed with Crohn's Disease when I was 12 (December 1997). Since being diagnosed I've had 3 surgeries (several small bowel resections and 2 duodenal bypasses). My Crohn's affects my esophagus, stomach, duodenum, and small bowel. In 2008 I had my first duodenal bypass because my duodenum is fully inflammed and no longer functions, so they made a new stomach opening for food to empty into my small intestine. I am currently in the hospital due to that and some small bowel inflammation which they almost had to do surgery #4 to remove, but removing the duodenum is too large a surgery and my GI's decided to try steroid treatment instead. I also have ulcers (50+) covering my esophagus and stomach wall, and at times they bleed out causing me to go into shock from too much blood loss (almost died the first time they bled out my jr. year in hs).

I've been on a lot of different meds over the years, but I'm currently on Humira (every 2 wks) and Nexium (40 mg 2x day). This stay in the hospital they have prescribed a short stint on prednisone and a new anti-depressant. As a kid I was on Remicade and 6MP but after so many years I built up an immunity and was switched to the Humira. Hopefully the Humira kicks in (even though I've been on it for at least 9 months and nothing seems to be working) because I also have skin issues that my childhood GI said is a side effect of being on Remicade for so long.

This past year has been the hardest of my life, mainly because its been the hardest year living with my Crohn's. A full year of abdominal pain, vomiting off and on, going days or weeks without enough food, having surgery only to get sick a month after...it has been a lot of stress. Not to mention I recently lost my job due to being sick and currently have no insurance.

My fiance came across this forum, and I am immensely glad that he did...because reading some of the other stories from people in the exact same position as me makes me feel like I'm not completely alone like I've been feeling (especially stuck in a small hospital room alone all day), not that it makes me happy anyone else feels this way...but its nice to know I'm not alone.

 

[Jennifer]

Hi and welcome to the forum!

You've been and apparently are still going through the mill. I feel for you, I really do. I've only had one resection, couldn't imagine it almost feeling routine. Has your doctor thought of maybe trying Enteral Nutrition to see if maybe you could at least get some more nutrients in? Its been known to do as well as steroids but I'm not too sure about long term. Don't even know if you could knowing you have so many ulcers, wonder if the tube would get through ya know?

Hope this short (hopefully) hospital stay and course of steroids will bump you towards remission. Quite honestly you've been through more than enough.

 

[David]

Hi there Charlotte and welcome to the forum I'm so glad your BF found it and you joined and shared your story.

It sounds like they basically did a gastric bypass on you which is what they sometimes do for extremely obese people. Problem there is it often results in other complications, one common one being vitamin B12 deficiency which people with Crohn's Disease often have anyway. Have you had your vitamin B12 levels tested lately? If so, what were they?

I agree with Crabby above about enteral nutrition. Not only for nutrients but it is also shown to improve disease state and can lead to remission. Based upon what you're describing, I'd personally try total enteral nutrition for a couple months.

Can you describe your skin issues?

We're here for you

 

[CharBarSprStar]

Crabby: Thank you for the warm welcome. I have been on TPN before with a PICC at home, but usually they tell me to stick to Ensure/Boost for weeks at a time instead of anything more drastic. I was released from the hospital today, and honestly am pretty scared about being back home since the pain is still pretty bad (they prescribed Tramadol for pain) and my duodenum is still inflammed. They prescribed a drug called Flaxyl, an anti-anxiety med called Celexa, a new PPI called Omneprazole (I was taking Nexium for years), and a small regiment of Prednisone.

David: Thank you, I'm very glad he found this forum as well, especially since I've had more of a chance to look around. My duodenal bypass surgery was similar to gastric bypass, only none of my stomach was removed. Only the new opening in the bottom of my stomach was made to attach the small intestine to so that the duodenum would no longer need to be used. The problem now is that it isn't completely blocked off, they just left it open, and sometimes food builds up in my stomach and is forced to go through that inflammation causing a lot of pain. I have been on B12 before, and they do check my levels in my blood work, and they haven't said anything about it being low recently. My skin issues are a mystery...I've been to a dermatologist who said she didn't even know what it was and that I should go to the University of Cincinnati hospital and be part of a biological study to figure out what caused it. It looks like an excema-type rash that gets worse if I get my skin wet too often. My childhood GI at Children's Cincy told us years ago that it was excema due to being on Remicade for years.

 

[Keepingfaith]

Welcome to the forum !

When it rains it STORMS! I am so sorry this disease is not letting up for you :stinks: You are in the right place though to receive support! I can sympathize as my Crohn's affects mouth to stomach & then ileum to rectum. What are you doing for relief of the ulcers in stomach/duodenum? When I am throwing up blood from nausea I usually give myself Phenergan shots. Maybe your GI could prescribe some for home?

I've been on a lot of meds for Crohn's as well & if the Humira would have worked, it would have done so already, don't ya think? My GI & Rhuematologist told me this when it didn't work for me. Maybe you could discuss bumping it up to one shot a week? I did that also & it bought me time before switcing to Cimzia.

Welcome & we are here for you!

 

[CharBarSprStar]

Thank you Keepingfaith.

My GI keeps me on the PPI to control my ulcer's activity (Nexium, now the Omneprazole), and I do take Phenergan for nausea in pill form at home and it does help most of the time. I was thinking the same thing about the Humira, and my GI has mentioned switching me to the Cimzia, I'm just not sure when he plans on doing that. Is the Cimzia working well for you? Is it pretty similar to Humira?

 

[Keepingfaith]

I just got part of my loading dose when I was released from a week long hospital stay last week(so excited we have some things in common!). I went to my Rhuematologists & got it as soon as I was released friday. It was the ONLY way they would release me. So, I can't say much yet!

As for the differences, Cimzia is supposed to be one of the best biologis out there! It has something in it called PEGylation. Cimzia is the first & ONLY biologic to have PEGylation. The 'peg' makes the drug stay in your system longer & is supposed to give you more relief! Also, it is considered the fastest acting biologic as far as symptom improvement! I am so happy & am looking forward to hopefully getting in remission for once in my life! You get two injections once a month after the loading dose. So that's convenient!

I have JRA with my Crohn's & my GI & Rhuemy work together when it comes to my meds. If you have arthritis, I strongly reccomend getting biologics from the Rhuemy. Apparently they have more 'inside connections' & I get the Cimzia a little cheaper! Even with great insurance, every bit helps!

EDIT:
The phenergan shots can help more than the pill because it will go directly into your bloodstream. I have issues with throwing up pills so if I can ever get my hands on something liquid/easily digestible/injection/IV I take it!

 

[CharBarSprStar]

I'm sorry to hear that you had to be hospitalized, and I am also excited to get to talk to someone who understands what I'm talking about! I hope that it works well for you! Thanks also for the info on Cimzia, I'll have to read up on it some more before they switch me over, I assume it'll be fairly soon now. I do have mild arthritis (I'm a hairdresser so it was bound to happen!) which is why they were hoping the Humira would work (Crohn's + Arthritis + Skin issues) but its good to know the Cimzia will help that as well! Thats very true that every little bit helps with the costs of these meds, they are crazy expensive! I do get my Humira for free from Abbott, so hopefully Cimzia has an assistance plan like that since I currently have no insurance.

 

[DFreeman]

Charlotte, I had a gastrojejunostomy last March due to a duodenal stricture. I've never talked to someone who has had this done before. I have Crohn's in the small bowel specifically the duodenum which I've learned is rare. Less than 5% of Crohn's patients have it in the duodenum. I've been diagnosed for 4 years and the surgery helped me so that I can eat, but I'm still struggling with the disease. I'm on Remicade right now and it's considered a double dose every 6 weeks. I'd like to ask you some questions regarding the new anatomy you and I both have in regards to eating. I don't know what is normal and what isn't. As I've mentioned, I've never talked to anyone who has had this done before. Thanks!

 

[SkinnyNinny]

I've also had this procedure and was pain free since the surgery in December until I had a blockage at the site of the new connection where my small intestine meets the new stomach hole.

I'm probably unusual in that I am currently not on any medication, though my gastro said I should be on either Humira or remicade. He prescribed Imuran but I didn't like the side effects. Maybe I'm unusual in that I'm very skeptical of the drugs and have been working on trying different diets, resting my digestive system, and avoiding obvious stress. I don't believe there is a miracle cure...I see lots of people reporting good results from these drugs, however there are many more who are not. And the side effects are nasty!

I'm hoping to have my ileostomy reversed this fall. I suppose it's very possible that all the pain and other discomforts will return once they reconnect it all. If so, doesn't this mean that diet definitely has a role to play in inflammation and other symptoms?

I really feel for the people in countries with no public health care and no insurance. If it were me, I'd fast for a while and let things settle down without all those drugs! I never felt worse than when I was on prednisone, imuran, pentasa, ASA, Sulfa drugs, etc etc. Changing my diet made the biggest difference. That and getting off all the expensive "hard" drugs. I was married to a doctor, met many drug reps, attended many drug company dinners, talked informally to many specialists over the years - I am not wowed by the self-professed experts. Most of them are focused on their bottom line, and selling drugs is a huge industry - it is not altruistic - they are in business to sell.

Edit: I am self-injecting B12 every three weeks or so, but I don't really consider this a drug per se, as it's over the counter. It has totally eliminated my mouth sores, and likely helps keep my iron closer to normal. I am also way less tired than I used to be! Losing my terminal ileum 20 years ago was the culprit - however NONE of the doctors recommended injections until this spring! Now that was a no-brainer, and I'm happy to do it for the rest of my life as I know my terminal ileum is not growing back any time soon For the rest, I'll accept some discomfort to avoid the risk of (insert serious side effects here) some time in the future...if it gets worse, maybe I will eat my words and try it. I know sometimes those are the only options...but right now I'm trying to avoid drug side effects so I can continue to work and enjoy what time I have.

That's just my opinion, what works for me might not work for anyone else.

 

[jami]

I am currently getting ready this coming week to start the first doses of cimzia, I dont know if you doctors know this or not, but my insurance pays most of it, but then the company that makes the drug has a card called cimpay that will basically pay the rest of what your insurance doesnt cover...I virtually am paying nothing for the medicine!