New to Crohn's

Hi all,

First of all thank you to all the members in the Group, you are fantastic and the amount of info you get in this forum is brilliant.

My Story:
My name is Krishna and I am from India but been in UK for 7 years now. My initial symptoms started in March 2014 when I had diarrhea after going for a party and eating uncooked lamb (I think!) diarrhea continued for 10 days with no blood or no loss of energy so I was not too concerned. After 10 days I went to India for a holiday and saw a doc who advised its probably food poisining and prescribed Antibiotics for few days. With antibiotics, diarrhea stopped and I was back in UK with no symptoms for atleast 3 months.
Round 2: Lamb again (I think!) July 2014.. same symptoms diarrhea no blood but loss of energy and loosing weight. Concerened that this is happening again, went to see a doc who gave me Codeine and asked me to have Carbo hydrate diet for few days... after a week diarrhea stopped.. all good...
Round 3: Not Lamb this time!but don't what it is but defintely after I ate something outside. Went to see the doctor who gave me the same codeine and asked me to be in carbo again.. did few blood tests and stool samples which all cameback as normal.
Round 4: Dec, Had diarrhea and this time bonus is there was lot of pain at the rectum.. saw the same doc who said it could be anal fissure and he was worried too that this is happening again. I go admitted in day bed suite for my fissure. Specialist looked at fissure under anesthisia and said very small fissure, presribed Dilitiazem cream to be applied.
Round 5: Jan 2015, Severe diarrhea with bood in stools and unbearable pain with fissure... Doc more worried now and referred me to see GI. GI asked to get Colonoscopy done which confirmed Inflamation in Large Intenstine. GI Confirmed symptoms more looking like Crohns ( Mar 2015) and asked to get MRI done to check the small intestine.... Colonscopy specialist started me on Pentasa as soon as I had my Colonoscopy done but when I saw the GI he asked me to stop Pentasa and prescribed Budosonide as Pentasa gave me more blood stools.
I was on Budosonide for more than a month and symptoms looked under control, atleast I could walk properly for a week. The time has arrived for MRI scan.. the liquid that they give you to stay inthe stomach which causes dairrhea.. hate it... as soon as my MRI is done I had diarrhea with lot of pain in rectum.. stupid thing I have done is taking cocodomal pain killer as could not bear the pain.. As you might know cocodomal causes constipation and I could see a lump forming on my dentile walls... so every time I go for bowel movement I get lot of pain.. so severe that i could not stand and have to jump straight into hot tub... After 1 week of suffering called GI nurse and explained the position..confirmed abscess forming and prescribed Metronadozole for 2 weeks. After 2 weeks the abscess bacame even more painful and got admitted to day bed suite to get it drained. Now I am recovering from the surgery and on Prednisolone 40mg tapering by 5 mg every week for 8 weeks. Still has on and off diarrhea issues and pain until 11 am in the morning after my morning bowel movement. Doc asked me to conitnue Prednisolone and Metrondazoel for another 4 weeks as he thinks that abscess cut is healing but the bad stuff is not coming out, so back on Metronadozole for 4 weeks.
Also at the latest appiontment with GI in June he confirmed that they will be starting me on Infliximab from July once the abscess is cleared.

So far this is what happening.. it wasn't even a complete week where I was not in pain in the last 6 months. Always getup worrying I have to go for Bowel movement and then bear the pain for 4 hrs. I am not sure if the pain is going away or I am getting used it after 4 hrs but its really pain full.

My questions are:
1. is it normal to change medicines that quickly like Pentasa to Budesonide and then Azathiaprone and to Prednisolone and finally to Infliximab in a span of 3 months...has anyone had the same?
2. Can second abscess comeback that quick like in 3 weeks after the first one?
3. Has anybody experience the same pain in the morning and what do you do differently to get away with it? i.e does accupunture help?

I know its lengthy but thought I should start somewhere... not sure If its been neglected in the beginining or the eventual has to happen but I am just loosing will to live because I have got horrible life..
1. Can't go out as I walk like tortoise and the worry of Diarrhea
2. Can't have any indian spicy food
3. can't play my favourite sports etc.. list continues..

Hope someone will answer my questions

Thanks
Krishna

Hi there and welcome, I read your story and can empathise with you. I had a lot of changes of meds, but over a year as they either caused side effects or did not help. It is how it is until the right meds are found for you. We are all individuals in our response to treatment and our illness. Have they made a diagnosis? I eventually was on Remicade infusions and did well on that. It is not easy to live with all the changes but do keep up your interests, and get out. Let me know how you are doing. Best wishes.:rosette1::welcome::rosette1:

Welcome to the forum!

I changed meds quickly at times...seems like they give you something then, when that isn't working, keep bumping it up till symptoms ease. The more intense the flare gets, the harder it is to get under control.

Palapu:

Sorry to hear about your issues. Everyone is different and at first it feels like you are a guinea pig with the meds until they get them right. I took pentasa for 2 weeks then started Humira injections. I have been on it for around 5 months with minimal relief. Going back to my GI next month to increase my dose or change meds. I just had a fistula surgery 3 and a half weeks ago. Still hurting. Did your doctor proscribe you a lidocaine cream for your back side? Along with the hot tub of water, it helps somewhat for me. The more you go the more irritated it gets. I take Lomotil to help slow down the BM's. It is light enough so it won't stop you up. Only bad thing is that it's got a small amount of narcotic in it.

After all the meds im on or have been on, I still knock people out of the way to get to the potty. I go no matter what the food or how spicy. I live close to New Orleans Louisiana where we are known for spicy food. I eat alot of fish and rice.

Keep your head up. I hate to say but for some people, it is life changing. The main thing is to adapt and keep going. I have had 2 surgeries since November and 3 more procedures planed over the next month and a half. I walk humped over because of the crohn's related arthritis in my spine. I carry around a travel size pack of butt wipes in my pocket due to 3 to 10 bowel movements a day. I have been in a BAD state of depression before, and let me tell you, its a dark road. Please, make accommodations and get out and enjoy life,

Hi all, thanks for your support. apologise for late reply as I have been in hospital again for another abscess and fistula
So progress is I had another abccess forming and got admitted to the hospital 2 weeks back to get it checked. Doc confirmed it is abscess and also confirmed fistula, a seton has now been placed on my first abscess..
GI recommended Infliximab for me, so the intial process has commenced with Counselling, Blood tests and I m not sure when my first infuion is going to be.

Can someone in the Group share their experience of starting on Infliximab i.e what happens in councilling, how long does it take for the first infusion appiontment to come through in UK pls?

Thanks
Krishna

Hi there Krishna, It did not take long for my first appointment for Infliximab infusion. It is usually what is offered when meds fail. I went to the hospital ward every 8 weeks. Unitially, sooner than that. You are monitored bloods checked each time. Take a book to read as it takes three hours or do. I was given lunch and tea during it. Not unpleasant. However,I eventually had to come off it. I may have to start again after being well for 1 and half years! Good luck.

Hi palapu

Here is a link to the infliximab/remicade support group. http://www.crohnsforum.com/showthread.php?t=4544. A good thread to read through and ask questions.

I have fistula and setons...hmmm...http://www.crohnsforum.com/showthread.php?t=47942. This is a link to the fistulas,fissures and abscesses support group.I figured I'd add this link too,another good resource.Pardon me if you already know about these groups.

There are many UK crohnies that should be able to shed some light in both support groups.Feel free to contact me if you like.