In Need of a Little Moral Support

[AnnaB]

Last summer I was diagnosed with Ulcerative Colitis. My doctor at the time had put me on medication that exacerbated symptoms and I ended up going into remission simply being off it. Months later, symptoms started again and by the time this past summer rolled around, I was so stressed out that my symptoms were the worst they had ever been. I was having everything from constant diarrhea to fevers every night or during my down time. After seeing a new, more qualified doctor, I received the diagnosis of severe Crohn's Colitis.

I'm back at college and I'm finding it incredibly difficult to handle my life and my with Crohn's. Aside from the pain, I get exhausted so quickly. I haven't had one uninterrupted night of sleep in over a month. I can't eat more than half a meal without intense cramping and pain. It's miserable. I find myself losing patience with those I care about and all I really want to do is withdraw. It feels as though Crohn's has completely turned my life upside down and I'm just sitting there, letting it happen. The few loved ones I have are more focused on dictating how I should handle a disease they don't have rather than giving me a way to figure it out on my own. And even though they can't fix what's in my head or in my intestinal tract, I wish I could get support that I could identify with.

Someone help?:sign0085:

 

[mickey]

It is easy to feel alone within a group; particularly when they do not understand is happening with you. Keep focused on improving your health, read up, be good to yourself and keep fighting! You will get better!

 

[EthanPSU]

Hey Anna, I can relate fully to you. I was diagnosed in 2008, my senior year of high school. It was horrible. Then I went to Penn State the last 4 years while dealing with crohns. Honestly, i destroyed my body while having crohns. I was dumb and drank like 4nights a week and heavily. It was horrible for my crohns, I was dead the next day. Most people just had hangovers, I had hangovers mixed with every crohns symptom going ten fold. I slowed down my senior year and got it mostly under control.

Anyways, are you currently on any meds or anything? Maybe you should get back to a GI in the area and change your current meds to put you back in remission.

 

[CrohnsChicago]

I'm sorry you are having a rough time of it. Sometimes it takes every last ounce of energy just to get up and get moving.

And somehow we manage to do it.

Have you ever used b-complex or b-12 vitamins? I have found they give me a little extra energy and focus to get through the day when I am experiencing symptoms like you do and have a hard time just getting up for work or feeling entirely drained at the end of the day. And they may be especially helpful if you have crohn's and find yourself still wanting to attempt to live the typical college lifestyle whenever you can (meaning drinking....).

It's an "invisible disease" that others really don't understand. Sometimes all you can do is just make sure you are learning about the disease to the best of your ability and making decisions that you feel are in the best interest for your own health. It's your body and only you know what's really going on with it. Others will have to learn to accept that and hopefully with time they can learn to be more supportive.

In the meantime, luckily we have this site for support.

Wishing you better health soon!

 

[AnnaB]

I'm taking Mesalamine as an enema. It's possibly the most demoralizing medication I've ever had. My doctor said I could take the remainder of a bottle of Lialda that I had but she didn't think it would have any effect. I've been hesitant to take it at all because it had make symptoms worse in the past. I know I need to get a doctor in the area but I feel stuck- like I can't push myself to go. The doctor said I will need surgery to have parts of my GI tract removed but it's a long story why she didn't tell me more than that.

I want my life back! I can relate to the drinking thing. I've cut alcohol out but nothing is more difficult than being friends with a bunch of guys who get drunk every weekend. Feeling restricted and limited like that is frustrating.

I need a way to cope.

 

[Jennifer]

Is the enema form really better than the time release tablets? Did you start with the tablets or go straight to the enema?

If they suggested surgery then likely there's a lot of scar tissue which isn't repairable but if there's a lot of inflammation then maybe adding a steroid (like Prednisone or Entocort) might help a lot. Were you told if it was mainly scar tissue or inflammation?

Sounds like you're not really getting the care you need from your GI since there doesn't seem to be any real plan. Wondering if maybe you could get a referral to another one that will be more proactive and then you wont feel at such a loss.

For many, including myself having some therapy can also help as depression is common for multiple reasons (even being low or deficient in certain nutrients can cause depression). Have you had blood work done to check if you're low or deficient in any nutrients (Vit A, B12, C, D, E, Iron, magnesium, Potassium, zinc etc)?

 

[Earnellzwifey]

I definitly feel for you on the exhaustion levels. Before I was finally taken off work by my Dr.'s (which left me with no insurance for 3 years, unable to afford to go to the Dr). Catch-22. I worked 12 hour shifts as a 911 dispatcher. After about 6 hours in i was done. I was messing up, going blind and Crohn's just did not know I had it then. Now I sleep about 10 - 14 hours a day and then only have the energy to lay in bed.

I feel for everyone of you that is in school, or working, or have small children at home. Do what can, dont push yourself to much because it will just make things worst for you down the road. What good is a college degree if you are to disabled to even be able to work. Do what is best for you and only you can make that decision.

 

[AnnaB]

In response to Crabby,

This doctor put me straight onto the enema form. She said that by doing so I would be sending the medication straight to the source of the problem. I had a ton of blood work done about a month ago but as far as I know I'm not deficient in anything. I've been taking Super B Complex- a vitamin containing several B vitamins including B12, as well as a multivitamin and a C tablet. The Super B helps a little with depression but it hasn't solved it, understandably so.

I have severe inflammation and as far as I know, I do not have any scar tissue yet.

Supposedly, the doctor I have is one of the best GI doctors in the country. While I still believe she is well versed and qualified to give me a proper diagnosis, I feel as though she is so busy and overwhelmed with other patients who are in even more serious condition, that I haven't gotten enough time to talk to her.

This is turning into a long post, but this story is relevant: I had a colonoscopy back during the second week of August. On my way to the appointment, the hospital called asking if I could come in early because my GI would be free a little early than expected. Luckily, my dad and I leave early for everything, so we were already about an hour early to the hospital. Anyway, I arrived at the clinic at 3. Then I waited. For two and a half hours. They didn't even get me into the room for the procedure until 5:30 and by that time, 80% of the nurses on duty had left. After the procedure, while I was still half asleep and totally out of it, my doctor tried to explain, in FIVE MINUTES, everything she saw during the scope as well as the treatment. She threw out the word "surgery" and said I would need it. When I started to ask questions about it, she said the hospital was closed and we needed to leave so the nurses who stayed behind for the my scope could go home. Needless to say I was upset and confused and ended up vomiting the entire car ride home, presumably because she didn't allow me enough time to come off the anesthesia before kicking me out.

To me, that all seemed very unprofessional. If I get a new doctor, this means more colonoscopies and procedures. Do I really want to go down that path? She may be qualified, but is she organized enough to maintain a relationship? I've since called the hospital several times, had my father call, had relatives call, and no one seems to be able to get ahold of the right people who can simply tell me what the HELL I'm supposed to do.

It's all very confusing and very complicated. In the end, I'm not fan of doctors.

 

[Jennifer]

You know how often I hear the phrase, "the doctor I have is one of the best GI doctors in the country?" Far too often! LOL. What country is that by the way? That information may be of use.

What is supposed to happen during a scope is you have the procedure done, you should have someone with you when the doctor comes back to say what they found so at least one person will remember (it's always 5 min or around there) and then you go to your appointment back to see your GI so you can talk at length about the findings and treatment plan. This appointment should already be made. Sounds like you never had a followup appointment.

There's a pretty common issue with GI specialists that I've noticed over the years. Many take on too many patients and don't give enough time and effort to any of their patients no matter the severity. You'll be lucky if they can remember your face let alone your name or what's wrong with you. They always come in with that, "who the hell are you?" look. I believe the term is called "flipping patients." You do one patient then go to the next room immediately (they do the same thing with scopes), kind of like a fast food joint. The food isn't great but at least you ate. Too bad it gave you diarrhea.

There are good GI docs out there who actually spend time with their patients. Its important to not only have a doctor who knows how to treat your illness but one who also has a good bedside manner. Doctors who flip patients really aren't good at either one.

So if you did go to another GI, would you have to go through all that testing again? Your last scope was in August of this year, probably not. In this case they would be able to look at the findings of your most recent tests and be able to go from there by also talking to you about what symptoms you're currently having. They will start a treatment plan right then and there and more than likely see you in 3 months to see how its going. If its not working then they'll want to try something else I'm sure. Sure its common for a GI to want to take a look for themselves which is a good thing cause then you know for sure you're getting the best care possible but they don't always do it if you've had testing done recently and if your symptoms haven't changed.

If you aren't comfortable with your doctor then find someone else. Its not like they would even notice you left in all honesty. I've left many GI docs and none of them ever called me up to see whatever happened to me. With my first GI and current GI I spoke/speak to them personally over the phone and they spent/spend a lot of time in the appointments I had/have with them. All the rest forgot who I was the second they saw my face for the first time.

You said you had blood work done but weren't deficient in anything. Were you in the lower end of the normal range in anything? Even being low can give you symptoms of a deficiency. I'm not deficient in B12 but I also hardly absorb it. Tablets etc didn't raise my number at all so now I get B12 shots every other month. I'm also low in vit D so I'm trying out the drops currently and will see if its doing anything with my next blood work. Basically if you're low in certain ones, try supplements like you're doing now and get blood work done again to see if its doing anything. If its not then you try increasing the dosage, then more blood work. If that doesn't work then there are shots or infusions for certain ones.

Edit: Sorry my response was longer

 

[Jennifer]

Also if its mainly severe inflammation you're dealing with and they mentioned possible surgery and just gave you Asacol in an enema form to "go straight to the source," that's not really the best course of action.

Asacol works by helping to prevent further inflammation but may not do so well at getting rid of the current inflammation. What would have been better is if they added a steroid on top of the Asacol whether its Prednisone (probably better since its fast acting and even comes in enema form if that's what's really needed unless the area is too far up then the enema just isn't going to reach) or Entocort (which can take up to a month for some people to notice significant change but has less side effects than Prednisone). Often times its the combination of meds that can help people go into remission and avoid surgery (hopefully cause there could be a lot of scar tissue under that inflammation).

 

[Bethanywrenboyer]

I am sorry that you feel that way. I know it is really frustrating, painful, and exhausting to have these symptoms. It can be a lot worse when you are supposed to be having fun, and you can't because you are so exhausted. I know it really sucks when loved ones dictate how you should handle the situation too. I am going through that very problem right now. It drives me nuts. I have had Crohn's since I was 11 and in general I just try not to talk to my loved ones about it when I am experiencing symptoms. It stresses them out, and in turn their stress stresses me out and makes things worse. I hope that you get to feeling better.

 

[sickofcrohns]

Does your college have an accessibility / disability support office or other resource for students? If one exists, even if you think they deal only with mobility issues or deafness/blindness, etc., you should check it out and make an appointment there. It can be a big help to have an advocate if you have to reschedule exams, etc. because of disease problems.

(Generally the way these things work is they will look at a doctor's letter confirming that you have a health issue, and if something goes wrong, they can talk to your profs on your behalf, so you have less to worry about).

Good luck!