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[NancyHany]

Hello all, I found this forum while searching for ways to make my Crohn's and UC feel better, lurked for a while then joined.

My story: I'm currently 26 years old, I was diagnosed with UC 7/2011 in the rectosigmoid and the doctor couldnt get far after it since I have a knot bow tie like in the middle of my colon. Three month ago I had terrible cramps that made me scream out in the middle of the street and I was taken to the hospital, another colonscopy followed and the doctor wasn't as gentle about the knot and forced his way in ( my colon kept hurting for days afterwards) and I was diagnosed with Crohn's in the ileum. I was surprised that I have both the surprise left me crying for hours, to quote my doctor " The Crohn's and the UC are overlapping in your colon". He upped my dosage of Pentasa to 2X500 3 times a day (that makes me vomit the entire day, doctor doesn't care) Mucosta, Flagyl and Nexum ( second degree GERD).

I have terrible pain all the time, terrible rash to the point I started avoiding seeing anyone, I cant eat, I cant exercise and I don't know if I will ever get my life back. Sorry for this being a bit long and thank you for taking time to read it, I'm not an angry person I'm just desperate.

 

[Mia E]

Welcome!
I'm so sorry you are feeling sore and unable to go out, is there any chance you can go back to your doctor and explain how tough things are? Or find a better one that cares and listens?
hope u find the support you need on here
X

 

[NancyHany]

Thank you I'm currently trying to find a doctor that's willing to listen to me but we have very few of good doctors where I live. I go back to my doctor's clinic every week and last thing he told me was "you will have to adapt to your situation". I don't want to adapt I want to fight that disease.

 

[tots]

I am very sorry about you situation!

I hope you get relief soon!

Lauren

 

[Angrybird]

Hello and welcome to the forum. I am sorry to that your are still feeliing so poorly and that you don't have a doc that is not willing to help, I really hope you can get to see a different, better one soon, definetly keep pushing on this one or at least go to back to this one and demand that he gives you better treatment. The pentesa is usually used as a maintainence drug to keep inflammation at bay, however if you are on a full on flare up - and from the sounds of it you are - then something stonger is needed to calm things down, usuallly steroids get used in this instance. The only other thing I can think of to try for now is a low residue diet as this may help a little with symptoms.

Wishing you all the best.

AB
xx

 

[mcneil143]

Welcome to the forum NancyHany. I was diagnosed with Crohn's 1.5 years ago and this site has helped me so much in providing very valuble information and support. This is a good step for you because you will need help.

My symptoms to begin sounded like yours. Doubling over in pain. Couldn't even get myself out of a car, off a chair on my own. Went to the hospital, they diagnosed Crohn's. I was in the intensive care unit for 4 days and then in the regular ward for 3. They had me on entocort (substitute for prednisone) and other various Crohn's meds.

I am no means a doctor, or anything close, but from what I have read, rashes are a sign of your body reacting to something. As an allergic reaction. Have you read all the information on your meds?? The internet is a great resource. What helped me a lot (because I didn't have huge support either) was educating myself on what I was taking and what the side effects are. Vomitting doesn't sound right either, unless you are constricted in your gastrointestinal tract. There are national nurses help lines out there. You can call them too and provide them with information on what is going on at the time you are throwing up...

This is a very life changing disease. Although some sites say that UC is curable via surgery, I question that. Crohn's on the other hand, is not. There is no cure to date. Your doctor is right in that you WILL HAVE to adapt your life to the disease. Everyone does. Everyone has to differently depending on how bad your Crohn's is. This is what helped me:

First things first - keep up on your meds!!!! Do not miss them. Take them at the same time everyday. BECOME VERY STRICT ABOUT THEM.
Second - eat easy things for your body to digest.
Third - research your disease. There are tons of Crohn's/UC help books out there and recipe books. I think at this point, a liquid diet is probably good. I always keep things like chicken broth, V8 (low sodium), clear juices, tea, jello on hand. When things get bad, I revert back to these. Then I slowly move to easy foods like cooked (mushy) carrots, V8, rice (I eat white because whole wheat stuff is no go for me), potatoes, juice, almond milk (I avoid dairy), oatmeal....I also soluble fibre (ie metamusil) and avoid non-soluble fibre stuff like whole veggies, cooked spinach, meats. Two great books for you to get started with (i depended on these) are:

- Crohn's & Colitis: Understanding and Managing IBD by Dr. A. Hillary Steinhart
- Crohn's and Colitis Diet Guide 150 recipes by Dr. A. Hillary Steinhart and Julie Cepo

- see a registered dietician to get you started - make sure it is an RD (they have a degree in this field) and not the ones with just a certification.
Next - keep a journal. This not only helps you to understand what is happening with your system, but it helps you organize everything in your mind as well... You can take this journal in with you to the doctor so they can see what is happening. It also shows them that you are really be serious and are aiming to move forward to getting this under control and get better. I journaled EVERYTHING - what time I had my bowel movement, what the bowel movements were like (runny, soft, normal, blood in it...), how I felt, where the pain was, how intense the pain was, what I did during the day, what I couldn't do that I normally do. Doctors (who are genuinly interested in helping that is) will like to see this.
Last but certainly not least and very important - REST!!!! this means feet up, couch potato resting... your body is trying to do things and needs you to not do other things.... get a good book, a few movies and REST, REST, REST.

I hope this helps you. I was really depressed about learning that I had the disease because I am a very active person (used to run marathons) and I am very very dedicated to my job. It is my life. Unfortunately, this disease pulls me away from doing those things. I have learned to adapt, to maintain a very positive attitude and to rely on teaching myself how to get better at the time of each flare. Every flare has been a bit different, albet generally the same...

Don't give up. As the others said, keep pushing. The only person that can really get you through is you (with positive attitude, taking control of your situation as best possible and getting the help you need). This is what I did. The doctors took me seriously because I was doing everything I could to help me and I knew what I needed to push them.... if that makes sense....

Take care of you. Be gentle to yourself. Positive thinking...!

 

[David]

Hi Nancy and welcome,

I agree with McNeil that it sounds like you're having a reaction to one of your medications.

I also agree with Angrybird that you may need a more powerful medicine.

One other thing to research is enteral nutrition which can help control the disease or even put it into remission.

I wish you all the best.

 

[NancyHany]

Thank you all for your kind replies and thank you McNeil for the very informative reply.

I'm definitely looking for another GI, bit hard to find good ones here so might take sometime. My doctor tried to prescribe me something with Cortisone but I have terrible allergic reactions to cortisone I all bloat up,fever and terrible rash.

I'm already off sugar, caffeine, coffee,corn, chilli, spicy or salty food, beer, liqueur, soda, black tea and all dairy products for the past 6 month, I started to cut down majorly on wheat products next and grains (bit hard I used to adore granola but its not worth the pain). My poor husband insists on sharing most of my diet and he lost tons of weight.

Our Dietitians here are not really qualified they are more into fad diets that attracts naive girls. The internet is a great resource and I'm always looking for ways to improve my condition. I really want my life and me back cause the way I act and look now is definitely not me. I will definitely look those books up, thank you all again, this forum is full of great support