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Crohn's Disease
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Posted 11/11/2014 3:46 AM (GMT 0)
I have had Crohn's disease for 10 years now and am currently in my final year at college. I have battled flare ups about every year and for the last 6 months I have been dealing with a really bad bout of my crohns. This is my third time in three months contracting c diff. Along with my crohns flaring badly and I'm in rough shape. I've missed so much class due to hospital stays and feeling too weak to attend. I no longer have a social life and the majority of my day is spent alone in my room at school not feeling well. I'm embarrassed to even go out when I do feel somewhat decent because I've lost a substantial amount of weight. I don't have the normalcy of school anymore and I just feel so behind, and honestly miss the comfort of home. I'm trying to finish out school, but every time I turn around it's another appointment, hospitalization, or just being isolated in my room. I can literally sleep all day and I'm extremely fatigued even though I recently recieved two iron infusions. Any advice, encouragement, etc would be greatly appreciated. I'm pretty down :(
Posted 11/11/2014 5:58 AM (GMT 0)
Hello Kell0293, many ostomates have gone through similar situation as yours and even me. I'm also an ostomate for 10 years now and I have suffered a lot after my surgery. I was diagnosed with Chron's after experiencing diarrhea, stomach cramps and blood in my stool. I had my colon and appendix removed and I have stoma bag attached on my body until now. I don't consider my stoma bag as a burden, instead I try to live a normal life. My advice is, you don't need to isolate yourself, just learn how to properly clean your stoma to prevent odor and always keep a good hygiene. There are many ostomy pouches that has an anti-odor protection. You can also learn from other people's experiences on how they keep a normal life despite their condition.
Posted 11/11/2014 11:20 AM (GMT 0)
Thanks shanon! It's just hard especially being in college when everyone else is focused on normal things and I'm constantly worried about my condition. Lately I've been having a lot of problems with nausea and a horrible, horrible pain right under my sternum. I've told my GI countless times about this pain and she has yet to do anything drastic about this. It feels like a knife is being dug into that spot and it last for about an hour and the pain is so bad that I cannot move and in tears. The only thing my gi doc gave me is bentyl which is to help reduce motility and spasms but it's not helping at all. Not even pain medicine works. I'm about to try another doctor to see what they say because I can't keep living like this since it happens multiple times a day.
Posted 11/11/2014 1:53 PM (GMT 0)
Kell, do you think the upper GI pain is possibly reflux? Have you tried an antacid for this? What is your treatment program for your Crohn's?
Posted 11/11/2014 10:20 PM (GMT 0)
Hi Kazbern,

I have tried everything for this pain and nothing has helped at all. I've tried about every anti acid (rx strength) and I still have gotten no where. I just feel my GI isn't listening to me because I complain of the horrible pain every time and still nothing has been done. I thought maybe it could be gall stones but I had my gallbladder ultra sounded about a year ago- however maybe something has changed. Medications I take for crohns are: remicade, methotrexate, bentyl, zofran, budesonide, and currently still taking vanco for the c diff.
Posted 11/11/2014 11:34 PM (GMT 0)
Oh, I bet it's the vanco giving you the horrible upper GI pain. Sorry this has been such a miserable year for you.

Assuming your GI has checked your blood for pancreas issues?
Posted 11/12/2014 1:55 AM (GMT 0)
Hi Kell,

It sounds like you need to re-evaluate your treatment plan. It seems that if you're having so much flaring, that the disease is active. You need to get things under control.

What meds are you currently using for maintenance? Have you used biologics?
Posted 11/12/2014 2:05 AM (GMT 0)

Shanon Murphy said...
Hello Kell0293, many ostomates have gone through similar situation as yours and even me. I'm also an ostomate for 10 years now and I have suffered a lot after my surgery. I was diagnosed with Chron's after experiencing diarrhea, stomach cramps and blood in my stool. I had my colon and appendix removed and I have stoma bag attached on my body until now. I don't consider my stoma bag as a burden, instead I try to live a normal life. My advice is, you don't need to isolate yourself, just learn how to properly clean your stoma to prevent odor and always keep a good hygiene. There are many ostomy pouches that has an anti-odor protection. You can also learn from other people's experiences on how they keep a normal life despite their condition.

Did I miss something? Where does Kell say that she has a stoma?

That said, I'm not really sure what to say, topic creator :-/ I agree with 73monte, it sounds like the meds are not keeping your disease under control. You're on some heavy duty stuff there, and can hardly go any stronger. I don't know where your Crohn's is located, but has surgery been talked about? If not, I suggest talking about it. It may also be worth finding a new GI who will listen and be more proactive. Some doctors are just lazy and can't be arsed with dealing with anything outside their comfort zone. Nobody can work miracles, but somebody could at least try to pinpoint the cause of your severe upper GI pain or prescribe more effective meds than bentyl.
Posted 11/12/2014 5:47 AM (GMT 0)
Thanks everyone for your replies. No I do not have a stoma but I am considering surgery in which I would have one since they would be taking out my entire colon and part of my small intestine. I'm very nervous to have this done because what if the pain doesn't subside and it becomes worse in my small intestine? Then I'll just be in the same place but now have a stoma:/ I have no clue how the bag really works and it would stink having it in college because I would constantly have to worry about concealing it. For the people who do have the stoma and have had their colon removed, what is the recovery time? And what does it entail? I'm just terrified to have it but I also know I cannot keep living this way. To 73Monte: yes I am taking remicade, methotrextae, bentyl, budesonide, vanco, and zofran. I have 10-325 percocet for pain, but that no longer works.
Posted 11/12/2014 10:15 AM (GMT 0)
Kell,

Maybe surgery is the answer for you. Before you consider such a drastic step, have you thought about trying some other biologics first?

If Remicade did work for you for a period of time, there's a good chance that a different anti-TNF will also work for you. You could inquire about Cimzia, Tysabri, Simponi, or the most recent Vedolizubaub.

Also, there are a few drugs on the horizon that do look very promising. I'm not trying to talk you out of surgery, just hope you've explored every avenue before hand.
Posted 11/12/2014 2:08 PM (GMT 0)
73monte, the OP is taking remicade and methotrexate. It seems her biggest issue is really recurrent c.diff, although what do I know. Perhaps a fecal transplant is a better option than her going on and off vancomycin.
Posted 11/12/2014 4:19 PM (GMT 0)
Kazbern,

I think I might be misinterpreting, but while it seems the C-diff is certainly a serious recurring problem, it's the pain and active disease that are wearing her down right now.

It also sounds like she has lost confidence in her GI. Maybe she needs another GI that will take a hard look at all of what's going on with her right now.

Really don't like the idea of her losing her colon at such a young age, if it can be prevented.
Posted 11/12/2014 5:05 PM (GMT 0)
I'm sorry you're in such pain and isolation right now. It wouldn't be a bad idea to have your gallbladder rechecked because I went from no gallstones to 13 within a year or two. I agree that the antibiotics and other medications could be causing the sternum pain. I'm not sure why your GI would not be considering an endoscopy at this point; it may be time for a second opinion.

My daughter had to drop out of grad school due to her chronic illness. She wished that she had taken a deferment.
Posted 11/13/2014 3:09 AM (GMT 0)
Thanks everyone and thanks JaSanne for your help. I'm going to try my PCP for my sternum pain and see if he can check some things out because I can't bear this pain anymore. I'm guessing it's still the cdiff that's making me so nauseous too. I can't eat a big meal without getting sick so I have to eat very very small meals or just snacks to get by. I'd love to just not eat at all and that would help so much but obviously I need nutrition to survive. Does anyone else struggle with extreme dry mouth? It's bad all day but at night is the worst. It wakes me up about 2-5 times because my mouth is painfully dry.
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